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Metastatic Breast Cancer: Accessing the Best Treatment For YOU

Metastatic Breast Cancer: Accessing the Best Treatment For YOU from Patient Empowerment Network on Vimeo.

How could genetic testing results impact your metastatic breast cancer treatment options? In this INSIST! Breast Cancer webinar, Dr. Julie Gralow discusses essential testing, the latest targeted therapies and emerging breast cancer research.

Dr. Julie Gralow is the Jill Bennett Endowed Professor of Breast Medical Oncology at the University of Washington, Fred Hutchinson Cancer Research Center, and the Seattle Cancer Care Alliance.


Transcript:

Katherine:

Welcome to Insist Breast Cancer, a program focused on empowering patients to take an active role and insist on better care. Today, we’ll discuss the latest advances in metastatic breast cancer, including the role of genetic testing and how this may affect treatment options. I’m Katherine Banwell, your host for today’s program, and joining me is Dr. Julie Gralow. Welcome, Dr. Gralow. Would you introduce yourself?

Dr. Gralow:   

Hi, thanks, Katherine. I’m Dr. Julie Gralow. I’m the Jill Bennett Endowed Professor of Breast Medical Oncology at the University of Washington, Fred Hutchinson Cancer Research Center, and the Seattle Cancer Care Alliance.

Katherine:    

Excellent, thank you. Before we begin the discussion, a reminder that this program is not a substitute for seeking medical advice. Please refer to your own healthcare team. Well, Dr. Gralow, let’s start by helping people understand how breast cancer is staged. Could we go through those stages?

Dr. Gralow:     

The staging of breast cancer has traditionally been by something we call anatomic staging, which has the tumor size, the number of local lymph nodes involved, and whether it has metastasized beyond the lymph nodes. So, that’s TNM – tumor, nodes, metastases. And so, that’s the classic staging, and based on combinations of those things, you can be a Stage 0 through Stage 4. Stage 0 is reserved for ductal carcinoma in situ, which is a noninvasive breast cancer that can’t generally spread beyond the breast, so that’s Stage 0, and then we go up for invasive cancer.

Interestingly, just a couple years ago, the big group that oversees the staging of cancers decided that in breast cancer, that TNM – the size, the lymph nodes, and the location beyond the lymph nodes – is not good enough anymore, so they came up with a proposal for what we call a clinical prognostic stage, which is a companion to the traditional TNM staging.

What they were getting at here was it’s not just how big your cancer is, how many lymph nodes, or whatever, it’s also at the biology of your cancer. So, this new clinical prognostic stage takes into account the estrogen and progesterone receptor of your cancer, the HER2 receptor at the grade, which is a degree of aggressiveness, and then, if your tumor qualifies, one of the newer genomic testing profiles that we use in earlier-stage breast cancer, such as the Oncotype DX 21-gene recurrence score or the MammaPrint 70-gene assay.

So, all of that goes into account now, and the whole point here is that the estrogen receptor, the HER2, the grade, and some of these genomics may actually make more difference than how many lymph nodes you have, where the cancer is, and how big it is, so it’s not just the size, but also the biology of the cancer that we’re trying to include in the new staging systems.

Katherine:    

In this program, Dr. Gralow, we ’re focusing on metastatic breast cancer. Would you explain when breast cancer is considered to have metastasized?

Dr. Gralow:  

That’s a great question because technically, if the lymph nodes in the armpit – the axillary area – are involved, that does represent spread beyond the breast, but if it stays in the local lymph node areas, it’s not technically called a metastatic or Stage 4 breast cancer. So, metastatic breast cancer would have traveled beyond the breast and those local lymph nodes, and some common sites would be to the bone, to the lungs, to the liver, less commonly – at least, up front – to the brain, and it could also travel to other lymph node groups beyond those just in the armpit and the local chest wall area as well.

Katherine:   

What about subtypes? How are they determined?

Dr. Gralow:   

The main way that we subtype breast cancer right now is based on the expression of estrogen and progesterone receptor, the two hormone receptors, and the HER2 receptor, the human epidermal growth factor receptor. So, to date, those are the most important features when we subtype, and so, a tumor can either express estrogen and progesterone receptor or not, and it can overexpress or amplify HER2 or not, and if you think that through, you can come up with four different major subtypes, in a way, based on estrogen receptor positive or negative and HER2 positive or negative.

When all three of those are negative, we call that triple negative breast cancer, and that’s about 18-20% of all breast cancers as diagnosed in the U.S. And then, when all three are positive, we sometimes call it triple positive, and the reason that we subtype is because we know that those different subsets act differently and that we have different drugs to treat them with, and we’ve got great drugs in the categories of hormone receptor positive and HER2 positive, and increasingly, some recently hope in a new drug approval or two in triple negative breast cancer as well.

Katherine:     

For a patient to get diagnosed, what are the essential tests?

Dr. Gralow:  

So, we’re talking about metastatic breast cancer here, and in the U.S., maybe up to 10% or slightly less of breast cancer is technically Stage 4 or metastatic at diagnosis. That means at the time we first found it in the breast, it had already spread beyond. So, an important thing that we’ll do with a newly diagnosed breast cancer is especially if there are a lot of lymph nodes are involved or the patient has symptoms that might say there’s something in the bone, liver, or lung is staging.

So, we’ll use scans – maybe a CAT scan, bone scan, or PET scan – and we will look at whether the disease has gone beyond the breast and the lymph nodes, and if so, where. So, maybe 8-10% of breast cancer diagnosed in the U.S. already has some evidence that it has spread beyond the breast, but the most common way that metastatic breast cancer happens is that a patient was diagnosed possibly years and years ago, treated in the early-stage setting, and now it comes back, and that is the most common presentation for metastatic breast cancer, and sometimes that can be due to symptoms.

As I said, if it comes back in the bone, maybe that’s bone pain. If it’s in the lung, it’s a cough. There are symptoms. Sometimes, it’s because we’ve done a blood test or something and we find some changes there.

And so, when a breast cancer has recurred, it’s really important to document that it’s really breast cancer coming back, first of all, and so, if we can, we generally want a biopsy, and we want to stick a needle in it if it’s safe to do, and look and verify that it looks like breast cancer, and also, it’s really important that we repeat all those receptors that we talked about from the beginning because it can change.

So, a cancer up front 10 years ago could have been positive for estrogen receptor, but the only cells that survived – mutated, changed – were estrogen receptor negative, so what comes back could be different. So, it’s really critical to get that biopsy, repeat the estrogen/progesterone receptor and HER2, and also, in an ideal world, now that it’s 2020 and we’re moving more toward genomics, to do a full genomic profile and look for other changes and mutations that could drive our therapeutic options.

So, staging, knowing where the cancer is, getting a good baseline by understanding where it is and how big it is so that we can follow it and hopefully see that it’s responding to treatment, and then, repeating all of the biology components so that we know what the best options are for treatment are really critical.

Katherine:  

Right. How can patients advocate for a precise breast cancer diagnosis, and why is that important?

Dr. Gralow:    

Well, all those things I just mentioned are key. Knowing exactly where it is so that we can monitor it – for example, if the cancer has come back in the bones, we would add what we call a bone modifying agent, a drug like zoledronic acid or denosumab – Zometa or – which can suppress bone destruction from the cancer, but if it’s not in the bone, we wouldn’t add that.

And, we want to have a good look everywhere so that we can see if it’s responding because sometimes, the tumor can respond differently in one area than another. Also, I think it’s really important to know what your treatment options are by doing that biopsy, getting a full panel, and looking at potentially hundreds of genes that could be mutated, deleted, or amplified so that we know what our treatment options are.

And, we’re not going to use all the treatment options up front, so it’s helpful for knowing that if this treatment doesn’t work or is too toxic, what are the second-line or third-line options? So, we make sure that there’s what we call good staging up front so we know where the cancer is, and then we make sure that we’ve looked at it as best we can in 2020 with all the genomics.

That would give us the best chance of being tailored – individualized – to the tumor. Sometimes, if we can’t biopsy it, like with a needle that would go into a liver spot, then increasingly, we’re looking at what we call liquid biopsies, and that can be drawing the blood and seeing if we can find parts of the tumor, whether it be the DNA or the RNA that’s floating around in the blood, and sometimes we can get that information out of the blood as well.

Katherine: 

All right. Dr. Gralow, when you meet with patients, what are some of the more common misconceptions that you hear related to diagnosis?

Dr. Gralow:  

Well, I think people do confuse – especially at an early diagnosis – that the metastases, the travel to the local lymph nodes, is not the same as a metastatic breast cancer, so we spend some time talking about how it’s still curable and not considered a distant metastasis if the lymph nodes are in the armpit or up above the collarbone, and so, that’s something that we spend some time talking about.

This whole term of “metastatic recurrence” – unfortunately, when you start looking online and get your information from Dr. Google, you read right away that it’s no longer curable, and in 2020, yes, that’s true. That’s probably the most specific statement that we can make. We are not going with curative intent, which means we treat for a defined amount of time, and then all the disease goes away, and we stop treatment, and then you go on with your life, and it never comes back. That would be cure.

But, I think it’s really important to point out that much of metastatic breast cancer can be highly treatable, and what we hope to do – and certainly, at least a subset of metastatic breast cancer – we want to convert it more to what we would call a chronic disease, and so, think of it more like hypertension, high blood pressure, or diabetes. These are diseases that we generally don’t cure with treatment, but that we can control with drug therapy, which sometimes has to be adjusted, and if we don’t control it, we can get some bad complications.

So, that’s not all metastatic breast cancer, unfortunately – we can’t convert all of it do something where we can use a therapy for a long time that keeps it in check and where you have a pretty good quality of life – but we’re hoping that more and more, we’re getting targeted therapies and more specific treatments to patients so that we can convert more patients to a more chronic kind of situation.

Katherine:

So, it’s something that patients live with.

Dr. Gralow:  

Right.

Katherine:  

Many people are confused about genetic testing. They often think that it relates to ancestry or physical traits like hair and eye color. What’s the role of genetic testing in breast cancer?

Dr. Gralow:    

Well, you can do genetic testing of the patient’s inheritance, which is how most people think of genetic testing, and that’s actually really important and increasingly important in metastatic breast cancer to do your own inheritance. Have you inherited a gene that was associated with how your cancer developed? Because now, we actually have a class of drugs called PARP inhibitors that are approved for tumors that have a BRCA1 or BRCA2 mutation with them. Most of those mutations were inherited, but not all. Sometimes they can develop as well.

So, now, when my patient – if she didn’t previously have genetic testing for an inherited risk for breast cancer either coming from mom or dad’s side of the family, a lot of people do have that up front, especially if they’re younger at diagnosis or they have a lot of family members with breast cancer. If she didn’t have that genetic testing done previously, at the time of the metastatic occurrence, I’m going to recommend that that be done because knowing if the cancer is associated with one of these DNA repair genes – BRCA1, BRCA2, some other genes – we have a new treatment option, which is an oral pill that actually is highly effective if the tumor has a mutation in one of these.

But, we can also – so, that’s genetic testing of the patient’s own DNA, but we can also do what we call genetic testing – or genomic testing, if you will – of the genes of the cancer. What were the changes in the DNA at the gene level that caused a normal breast cell over time to develop into a cancer cell that’s now growing without responding to our body’s checks and balances? So, what were those mutations, deletions, or amplifications in the tumor itself?

So, we’ve got the patient’s genetics, we’ve got the tumor’s genetics, and both of those come into play when we’re making our best treatment recommendations and trying to understand what the right approach is.

Katherine:       

How is testing administered?

Dr. Gralow: 

So, for our inherited testing, those gene changes can be found in every cell in the body, so we can do that from a simple blood test where we just look at the blood cells. We can actually do it with our sputum and with a cheek swab, even. You can get enough of the DNA from the inside of the mouth to do that.

For a tumor’s genetics, we need some of the tumor, so that’s either done with a biopsy into the metastatic site or, as I mentioned before, increasingly, we’re exploring the potential for a liquid biopsy – so, drawing some blood and then trying to find pieces of the tumor that are shed into the blood.

Katherine:      

What advances have there been in testing?

Dr. Gralow: 

Well, it used to be – just going back a couple of years ago – that we didn’t do a lot of this genetic testing or genomic profiling of the tumor because we didn’t have many – the term is an “actionable mutation.” So, if we found something, would we do something with it? Did we have a drug we could use to do it? But, more and more and more, even in breast cancer, we’re finding actionable mutations that would drive therapy.

For example, in estrogen receptor positive breast cancer, we have a new class of targeted therapies called PI 3-kinase inhibitors – a drug called alpelisib or Piqray was approved in the last couple of years in that category – and it only is effective in estrogen receptor positive breast cancer that has a mutation in the PI 3-kinase gene. So, that would be something we’re looking for in the tumor’s genes, and actually, we need to know that there’s a mutation to even get the drug approved for treatment because it doesn’t work if you don’t have that mutation.

Increasingly, we’re finding some changes that can happen in the estrogen receptor gene and the HER2 gene, interestingly, so that you can have estrogen receptor expressed on your tumor, but over time, that tumor might develop an estrogen receptor mutation so that it stops responding to certain drugs that target the estrogen receptor.

And so, that’s called an ESR1. That’s the name of the estrogen receptor gene – an ESR1 mutation – and that would tell me probably not going to respond as well to a drug in the class we call aromatase inhibitors, but might respond better to a drug in the class that we call the selective estrogen receptor degraders like fulvestrant or Faslodex, is the name of a drug in that class.

We’re also finding that you can have what we call activating mutations in HER2, and they can be present whether the tumor overexpresses HER2 or not, and we’ve got some ongoing clinical trials looking at if the tumor doesn’t have extra HER2 on its surface – so, it doesn’t have extra HER2 protein, but at the gene level, it’s got an activated HER2 gene – we can use certain types of HER2 therapy to treat it, and we’re testing that right now in clinical trials.

So, could we even use some HER2 drugs even though technically, the tumor would be classified as HER2 negative? So, fascinating increasing information that we’re understanding, and I also mentioned before we can inherit mutations in genes such as BRCA1 and 2, but fascinatingly, the tumor can acquire those mutations. Even if we didn’t inherit a mutation, we can see mutations in the BRCA1 and 2 gene – we call those somatic as opposed to germline mutations. So, “germline” means it’s in every cell in your body, but “somatic” means the tumor somehow acquired this over time.

And so, we’ve done – we just presented some very early results of a trial, and we’re expanding this trial, looking at if you didn’t inherit a BRCA1 or 2 mutation, so technically, you don’t qualify for a PARP inhibitor, but if the tumor acquired a mutation and we can prove that with testing the tumor’s DNA, then we have seen responses from these PARP inhibitors, so that opens up another whole class of treatments, and there are other DNA repair genes that actually may be qualified as well that we can inherit or that can be acquired by the tumor.

So, more and more, we’re doing this genomic profiling, and it is leading to results that would give us possible treatment options.

Katherine:  

Dr. Gralow, the goal of this program is to provide the confidence and tool for patients to advocate for the essential tests to get best care personalized to them. Are there specific tests that patients should make sure they have?

Dr. Gralow:  

Well, there are a lot of assays out there to do this genomic profiling or genetic testing of the tumor, so I don’t promote any one. Various institutions do it and do it well, various companies do it, but I think every metastatic patient should have the tumor looked at in this kind of profiling.

I also think every metastatic patient should advocate for having a biopsy of their cancer, and if a biopsy cannot be done safely in the recurrence, then see if they could get a liquid biopsy – have blood drawn to find it. So, I think that patients should be asking about this. Sometimes, insurance won’t always cover it, and so, my job as a treating physician is to advocate for that, to do an appeal.

More and more, because we have so many actionable mutations in breast cancer now, I’m not having insurance decline, but occasionally, it does, and then it’s our job as the healthcare providers to make the case that yes, this will impact the patient, and yes, it should be covered by insurance.

Katherine:  

You’ve been referring to a number of terms. Patients may have heard the BRCA or “braca” that relate to breast cancer in genetics. Would you give us an overview of common mutations in breast cancer?

Dr. Gralow:    

So, of the mutations that we can inherit, the first two that were discovered were BRCA1 and BRCA2, and for all breast cancer – not just metastatic, but all breast cancer – we think that maybe 5-10% of breast cancer is the direct result of the inheritance of a strong gene that gives you a high – not 100%, but a high likelihood of developing breast cancer.

So, for BRCA1 and 2, these two genes are associated predominantly with breast and ovarian cancer, and if you live out your normal lifespan, you could have up to a 75-80% chance of getting one of those two cancers, and breast cancer being more common. Also, some association with some other cancers including, interestingly, prostate cancer, which we’re learning more about.

So, BRCA1 and 2 are the most common, and they tend to be found – because they have such a high association with the risk of breast and ovarian cancer, they tend to be found in families that have a lot of other breast cancers, and also breast and ovarian cancer presenting at a younger age. So, you’ve inherited a gene that leads to a high predisposition, and the cancer occurs earlier.

So, whereas the average age of diagnosis of breast cancer in the U.S. is 61-62 most commonly, in a patient who’s inherited a BRCA1 or 2 gene mutation, it’s closer to 40-42 – so, a lot younger. And then, there are a variety of other genes that can be inherited that are either much less common or have a weaker link. So, for example, there are genes called CHEK2 or PALB2, ATM, P53 – I just mention that because some of the listeners will potentially have one of those mutations or have heard it. Those are either rarer or they’re associated with a weaker chance of getting cancer.

So, those might be more commonly found in a family that doesn’t have a lot of cancer in it because a carrier – the mother or the father – and their other relatives would have maybe only a 30% chance of getting breast cancer in some cases. So, there would be a lot of carriers who don’t get cancer.

So, as I mentioned earlier, I think it’s really important – especially right now in metastatic breast cancer – that pretty much everybody, even if you didn’t have a strong family history, even if you weren’t diagnosed at a young age, get tested because if we find one of these inherited mutations, we now have some additional treatment options, especially right now, approved for BRCA1 or 2, but clinical trials going on for many of these other genes.

Katherine: 

How do these mutations affect disease progression and prognosis?

Dr. Gralow:          

So, most of the genes I’ve mentioned – in their normal state, they’re critical, actually. They’re called DNA repair genes, and their job in our life is when we accidentally make a mistake when we’re replicating our DNA and two cells are dividing, if there’s a mistake in the DNA, they go in and repair it. And, we’ve got all kinds of mechanisms to try to prevent mutations from happening as cells divide, and BRCA1 and 2 are a key part of that, and so, they’re fixing it.

So, if you inherit a mutation in one of those genes, you still have some ability to repair any routine mistakes that are being made, but over time, you have less ability, and then, if you get a cancer that has a deficiency in BRCA1 or 2, those cancers can be more sensitive to certain kinds of chemotherapy that affects DNA repair.

So, for example a class of chemotherapy agents called the platinum drugs – carboplatin and cisplatin – may be more effective in BRCA1- or 2-mutated cancers, also more generally in triple negative breast cancer because they can be more similar to BRCA1-mutated cancers in a lot of ways.

So, to go back to your original question, once a cancer has developed in a patient who has a BRCA1 or 2 mutation, we treat that cancer for what it is. So, it might have developed estrogen – have estrogen receptor on the surface or HER2, so we treat it as the subtype that developed, and actually, the chance of cure is just the same for BRCA1-associated breast cancer as it would be for one that doesn’t have a BRCA.

But, the chance of getting a second breast cancer – a totally new breast cancer – would be higher unless you chose to remove both of your breasts and the bulk of your breast tissue. So, decisions like surgery – if you had a known BRCA1 mutation, we’d treat the cancer you have now aggressively and for cure, but when you talk about your surgery options, we’d say doing more aggressive surgery, like removing both of your breasts – that’s not gonna improve your chance of surviving the cancer you have now, but it will markedly reduce the chance of getting a second breast cancer.

So, you could consider that as an option for surgery – not to improve your chance of this cancer, but to reduce the chance of another breast cancer. So, your surgery decisions might be impacted by knowing your BRCA1 or 2 mutation. And then, clearly, if you had metastatic breast cancer, knowing if you had the option of a PARP inhibitor, one of the drugs in that class could be – you could have a different treatment option for drug therapy.

Katherine: 

Well, Dr. Gralow, what other factors should be taken into consideration with a treatment route?

Dr. Gralow:   

I always like to think of the treatment decision as relying on three factors, and the first relates to the tumor factor, the cancer factor.

So, we talked a lot about the biology, the estrogen receptor, the HER2, the genomic profiling. So, that’s critical, but there are two other components that we need to really strongly consider when trying to devise the right treatment regimen. One of those is patient factors, and not just the patient’s genetics, but are they pre- or post-menopausal?

What is the age? Where are they in life? Are they young with young kids? Are they working, and is that an important priority for them? Are they older and with grandchildren, and they don’t need to work? What is it that would be critical? What are the patient’s priorities here, and what are their fears, what are the things they would – what would be really important as we plan a regimen? And so, the patient factors which would be patient priorities and where they are in life right now.

And then, there’s factors related to the treatment itself, which would include not just how effective it is, but – and, this is really important when trying to decide regimens – what are the side effects of a regimen? For some patients, hair loss is a big deal, and we can put it off as long as possible – maybe choosing the first couple regimens don’t cause hair loss sometimes.

But, for other people, that doesn’t matter to them. For some, we have oral – some regimens, and that could keep them out of the infusion room, and others actually – I’ve had patients who actually like coming into the infusion room regularly so that they can review the side effects and get the reassurance provided by it. So, we’ve got different route of administration of the drugs, different side effects. If you already had, for example, a neuropathy – a numbness/tingling of fingers and toes – from treatment that you might have gotten for early-stage disease, we’d probably want to avoid drugs where that’s their major side effect in the metastatic setting and that would increase that even further.

We’ve got some drugs that cause a lot of toxicity to our GI system – nausea, vomiting, or diarrhea – and other drugs that don’t. And so, understanding what symptoms the patient already has and actually tailoring the treatment based on some of the side effects of the drug could also be done, as well as how they’re administered. So, again, patient factors, tumor factors, and then, factors related to the treatment itself all come into play when we make decisions.

Katherine:    

There have been so many advances in breast cancer research. What are you excited about in research right now?

Dr. Gralow: 

Well, every single drug that’s been approved, every single new regimen that’s been approved in breast cancer is the direct result of clinical trials, and this is a major part of my career, is to help patients get access to clinical trials and run important clinical trials that could lead to new discoveries – is this regimen better? What’s the toxicity?

Because until we have a cure for breast cancer, we need to do better, and we need to research better treatment options. So, doing trials, having access to clinical trials where you can participate, help move the science forward is key.

I think where we’re moving with breast cancer is the more we’re understanding the patient and the tumor, the more we’re realizing every single breast cancer is different, actually, and whereas when I started my training 20-plus years ago, breast cancer was breast cancer – we weren’t even using HER2 yet, we were just learning how to use estrogen receptor, and we kind of treated everything the same – now, we’re subsetting, and subsetting, and subsetting. Even in triple negative breast cancer now, which is about 18-20% of breast cancer, we’re subsetting.

Does that triple negative breast cancer have PD-L1, which is associated with being able to get immunotherapy drugs? Does it express androgen receptor? Because sometimes, even a breast cancer that doesn’t have estrogen or progesterone receptor can express the androgen receptor, like prostate cancer, and we can use some prostate cancer drugs. So, even triple negative breast cancer we’re subsetting and subsetting, and could that triple negative breast cancer be associated with a BRCA1 or 2 mutation, and then we can use the PARP inhibitors?

So, I’m actually really excited about that we’re learning more and more, and subsetting, and not treating breast cancer as one size fits all, and if we can better tailor the treatments to the patient and the tumor, that we are going to get to the point where I can tell my patients yes, we can get cures in metastatic breast cancer.

Katherine:    

For patients who may be hesitant to speak up – to advocate for themselves in the process – I’m gonna start again. For patients who may be hesitant to speak out for themselves and advocate for their own care and treatment, what advice do you have?

Dr. Gralow:   

You have a whole team who’s behind you, and I’m the MD on the team, but I’ve got a nurse practitioner, and a nurse, and a scheduler, and a social worker, and a nutritionist, and a physical therapy team, and financial counselors. I’ve got a whole team who works with me. And so, a patient might be hesitant to speak up during the actual appointment with their physician. It’s a short amount of time. I would recommend come into it with written-down questions because things go fast. You don’t get a lot of time with your doctor.

Things go fast, but don’t come in with 25 questions, either. Pick your top few that you want to get taken care of this visit because if you come in with 25 or 30, you’re gonna lose the answers to most of them. Maybe bring somebody with you who’s an advocate and a listener for you who could be taking notes, so you can process and you don’t have to write it down, or ask if you can record it. It’s really important if you’re newly diagnosed or maybe there’s a progression and you’re going on a new treatment. That’s okay too.

But, I would also say you have a whole team behind you, so sometimes, if you don’t have time or if you’re hesitant to speak up in your doctor’s visit, you can ask the nurse, or maybe you can ask the social worker for help, even. See if there’s support groups around.

Interestingly, we’ve got a peer-to-peer network where patients can request to talk to somebody else who’s matched to them by some tumor features, and their stage, and things like that. Maybe finding somebody else who’s gone through something similar, and somebody independent to talk to instead of relying on your family.

It can also be really helpful to talk to a therapist or a psychologist about your fears, and sometimes, you want to be strong for your family, strong for your children and all, but you need a safe space with somebody that you can just express your fears and your anger if that’s what’s going on, or your depression or anxiety to while you’re trying to hold a strong face for others in your family. So, I would encourage patients to look at who is the whole team and talk to the other members of the team as well, and sometimes, they can help advocate.

Also, find somebody who might be able to come to your appointments with you, somebody who will help you advocate or remind you – “Didn’t you want to ask this question?” – or be another set of ears that you can process it with afterwards.

Katherine:     

Dr. Gralow, we’ve covered a lot of useful information today for patients. Thank you so much for joining us.

Dr. Gralow:    

Thank you, Katherine.

Katherine:       

And, thank you to all of our partners. To learn more about breast cancer and to access tools to help you become a proactive patient, visit powerfulpatients.org. I’m Katherine Banwell.

Communicating About Cancer: A Brief Guide to Telling People Who Care

Getting a cancer diagnosis can easily be the most terrifying, heart-wrenching experiences one has in their lifetime. Everything from different treatment options (if you’re lucky), to financing, and maintaining quality of life suddenly are in full force front and center. It can be hard to know who to turn to if you’re not directed to a support group (of which there are many), and especially how to tell loved ones and co-workers. The choice is yours, of course, in whom you wish to tell and when – there is no right or wrong answer. (However, I and many others have found that having a caregiver to help manage appointments, billing, etc. can help).

Should you choose to tell others, here are some tips that I have read and/or heard from other cancer patients/survivors as well as some I have found personally helpful:

Kids:

  • It depends on the age – using simpler terms with younger kids (8 and under) may be more helpful, while older kids and teens can understand more detail. For example, saying that you’re sick and you’re getting the best care from a team of doctors who really want to help you get better
  • According to the American Cancer Society, children need to know the basics, including:
    • The name of the cancer
    • The specific body part(s) of where it is
    • How it’ll be treated
    • How their own lives will be affected
  • Think of a list of questions ahead of time that you think they may ask and jot down answers, such as how the cancer happened (that it’s not anyone’s fault), if it’s contagious, and/or if it’ll be fatal
  • Make sure that they know you are open to talking about it at any time. You can also perform check-ins with each other to monitor feelings

Family and friends:

  • Select a group of people, including immediate family and close friends
  • Divulge information only you feel comfortable sharing. Maybe it’s the basics, as mentioned above, or more detailed information
  • Prepare for different reactions, including sadness, anger, frustration, depression, anxiety, compassion, and support
  • Also prepare for people to not feel comfortable and feel as if they’re helpless. A cancer diagnosis is a heavy weight to bear, and not everyone will feel like the have the capacity to help as much as they want to
  • As the patient, tell them how you’re looking for support (ex. what are your needs during this time, including physical, emotional, mental). Guiding members of your support system to get your needs met may help them feel more at ease and able to help

Work:

  • Telling a supervisor/manager may be one of the hardest tasks for fear of discrimination
    • However, the Americans with Disabilities Act (ADA), which covers employers with 15 ore more employees, prohibits discrimination based on:
      • Actual disability
      • A perceived history of disability
      • A misperception of current disability
      • History of disability
    • The ADA also:
      • Protects eligible cancer survivors from discrimination in the workplace
      • Requires eligible employers to make “reasonable accommodations” to allow employees to function properly on the job
      • Ensure that employers must treat all employees equally
    • The Family and Medical Leave Act (FMLA) also gives you the right to take time off due to illness without losing your job
      • However, an employee must have worked for his or her employer for at least 12 months, including at least 1,250 hours during the most recent 12 months in order to qualify. The law applies to workers at all government agencies and schools nationwide as well as those at private companies with 50 or more employees within a 75-mile radius
    • The Federal Rehabilitation Act prohibits employers from discriminating against employees because they have cancer
      • However, this act applies only to employees of the federal government, as well as private and public employers who receive public funds

Sources:

Notable News August 2020

Just when you think science can’t get any cooler, researchers figure out a way to learn more about cancer from dinosaurs. Yes, dinosaurs! Researchers have also found that fewer people are dying from lung cancer, and that the more they learn about immunotherapy the better. There is also a new study warning of a potential cancer risk for older adults.

The study pertains to adults 65 and older and indicates that taking aspirin every day could make cancer worse for older adults, reports medicalnewstoday.com. While past studies have shown that a daily dose of aspirin could protect older adults from cardiovascular issues, and clinical trials have shown that aspirin may reduce the risk of developing cancer in middle-aged adults, a recent study showed that daily aspirin intake may actually increase the risk of being diagnosed with advanced cancer in older adults. There was a 19 percent higher risk of metastatic cancer and a 22 percent higher risk of an advanced cancer diagnosis. People who are already taking a daily dose of aspirin should not stop doing so and should consult their healthcare providers with any concerns about the study before making any changes to their daily aspirin regimen. Learn more about the results of the study here.

Researchers may have discovered why immunotherapy isn’t effective for some patients, says sciencedaily.com. The treatment, which uses a person’s own immune systems to target cancer cells, doesn’t seem to work so well for young and female patients. A study shows that immunotherapy is less effective in young and female patients because they tend to have strong immune systems that are better at getting rid of tumor cells. That sounds like a good thing, but cancer cells that the immune system can’t easily recognize and get rid of often remain in the body, so immunotherapies are less effective at targeting those cells. Now that researchers know why immunotherapy doesn’t work for some patients, they can use the information to determine how to make treatments more effective for every patient. Find more information about the study here.

Researchers have also been looking for ways to increase the effectiveness of immunotherapies to treat blood cancers, says technologynetworks.com. By combining two types of immunotherapies, researchers found that they become more effective in treating blood cancers such as leukemia. There is also evidence that the new combination of therapies could be a safer option. The researchers are using similar technology used in the immunotherapy known as CAR-T therapy in which T cells are modified. In the new combined therapy, instead of modifying T cells, cells known as natural killer (NK) cells are modified. The CAR cells are also modified to help the NK cells find the tumor cells. The process utilizes the benefits of modifying both types of cells and may reduce the potentially life-threatening side effects of the CAR-T cell therapy which would greatly improve immunotherapy treatments. Read more about the combination of the two immunotherapies here.

Improved therapies are also having an impact on lung cancer mortality rates, reports cancer.gov. A new study by researchers at the National Cancer Institute shows that deaths from non-small cell lung cancer, the most common type of lung cancer, have dropped in the United States. The death rates are dropping faster than the cancer is occurring and the extra decline is attributed to therapies, approved in the last ten years, that target the cancer. Find out more about the NSCLC mortality rates here.

We are learning more and more about treating cancer all the time, and sometimes information comes from the most unlikely places, such as dinosaurs, says technologynetworks.com. Researchers have found the malignant bone cancer, osteosarcoma, in the lower leg bone of a Centrosaurus apertus, a plant eating, horned dinosaur that lived in large herds approximately 76 million years ago. The damage to the dinosaur’s bone was first thought to be a fracture, but upon further examination, the cancer was found. Using similar methods to diagnose cancer in humans, researchers discovered that the adult dinosaur had an advanced stage of the cancer and that it may have spread to other parts of the body. However, it is not believed that the cancer is what killed the dinosaur, as evidence showed it died as part of a herd in a flood. Researchers hope that they will be able to better understand diseases today if they are able to understand how they have evolved from the past. Learn more about how the dinosaur’s cancer was diagnosed here. You can even watch a short video about it. It’s super cool!

Reaching the Peak: Finding Resilience During Cancer

What does it mean to be “resilient” as a cancer survivor? Does it mean having the courage to remain positive? The strength to carry yourself into the next chapter of this “new normal” life?

In my opinion, having resilience or being resilient means all those things and more. However, resilience can also be built upon a collaborative effort made by both the patient and their healthcare team.

In the recent 2020 symposium held by the National Coalition for Cancer Survivorship, results were presented from a survey that stated patients believe that being proactive in the beginning of treatment can lead to better health outcomes. Part of being proactive on the patient side is asking questions of your care about diagnosis and prognosis, treatment options, physical/mental/emotional side effects, and short-term and long-term effects on quality of life. During the treatment process being proactive can also consist of contacting your care team with questions rather than guessing what “should be” happening, instructions on how to take medications, and any unexplained side effects.

Managing these side effects can also count as resilience. For example, speaking with a social worker or seeing a therapist may help with the emotional trauma of a diagnosis. Moving your body and getting your blood flowing by walking, running, yoga, and other forms of exercise can show mental and physical resilience. Most importantly, asking for help when you need it and being specific in what you need can show determination.

At the end of treatment, the journey is not over. Rather, it can feel like it’s just beginning. As you look back on how far you’ve come, contemplate if there’s anything you would’ve done differently. Maybe you were fearful, and now you’re more curious. Maybe you were afraid to share your story and what people would think of you. Now you know that none of that matters, except what you think, what you feel. Your story is powerful, your feelings are valid, and you have the courage to push forward.

Resilience isn’t something to be won; it’s something to be explored. Just like a diagnosis, it doesn’t come easy. But take a moment, breathe, and know that there are people rooting for you. Keep going.

Should You Mention That You Are a Cancer Survivor on Your Resume?

For many cancer survivors, the thought of getting back to work after your treatment is over can be a scary one. There are so many questions that you might have, and the idea of returning to total normality can feel strange and scary. 

This doesn’t have to be the case though and there are plenty of things you can do thrive in life after beating cancer. One of the best ways to do this is to get yourself back in the world of work. One of the biggest questions you will have about doing this, though, is going to be whether or not you should disclose information about your battle, and if so, how much? We’ve compiled a useful guide to help you work your way around some of these issues. 

Getting Back Into Work as a Cancer Survivor

Making a return to work after you have completed your treatment and received the all-clear can feel like a terrifying step. It can also be one of the most positive things you can do as a cancer survivor. 

Not only does returning to work provide you with a return to normality, but it can also remind you that there is a life away from cancer, and it’s one that involves you. You are more than just a cancer survivor; you are a great friend, a hard-working employee, and a valued member of the workforce. 

If you are thinking of returning to work, you should make sure that you have cleared everything up with your doctor or medical advisor first. You will need to make sure that there aren’t tasks that could put you at risk. You should work out the kind of schedule you will be able to work and the effects that it may have on your body. You will also have to make some important decisions about sharing your diagnosis with your colleagues and your employers.

How to Mind the Gap in Your Resume 

One of the biggest concerns for cancer survivors looking to find a new line of work is the gap in their resume. With the modern job market being such a tricky one to navigate, many feel as though having a huge gap in your resume, or applying for a job unemployed, can have a serious impact on your chances of getting employed. 

Thankfully, while a gap on your resume can appear bad to potential employers, there are plenty of different ways that you can get around such an issue. 

Put an Emphasis on Your Skills and Qualifications 

At the top of your resume, list your skills and qualifications instead of your work history. Putting an emphasis on what you can do instead of what you have been able to do is going to help show off your strengths. 

Make a list of examples underneath each of your highlighted skills and, if possible, demonstrate scenarios from previous jobs that can really help shine a positive light on you. 

Don’t Worry About Times 

If you have been out of employment for a while, then you may have some concern that you are going to be unemployable. This is a natural concern, but it is one that can be avoided. When you list your job experience, instead of listing the dates, you should list the amount of time that you worked in a job. 

For example, instead of saying – IT Manager 2016-2018, you could write, IT Manager – 2 years. While this may not prevent questions coming up in the interview concerning the gaps in your resume, it will give the chances of you being provided with a job interview a significant boost. 

Mention Volunteer and Community Work

Mentioning any volunteer or community-based work that you have done can really help give your resume a boost. You should list any sort of volunteer or community roles that you have done and talk about the transferable skills that you have gained from them. This can be a great way of highlighting your skills and taking away any attention there may be from a break in employment. 

Speak to a Professional

If you are really finding it difficult to navigate the career gap on your resume, then you can always consider speaking to a professional careers advisor or CV writer. These services don’t have to cost money either. 

Local councils at unemployment offices may have someone on hand to help, while a lot of universities and colleges will also have career advice sectors that may be happy to lend a helping hand. 

What About the Job Interview?

For many cancer survivors, the job interview itself can be the trickiest part of the process. While you are under no obligation to explain your medical history to any potential employer, there is also the possibility that they may have to take certain workplace precautions to help you with your recovery. 

Fear not though, an employer can not discriminate against you because of your medical history. Equally, if you do not feel you need to disclose any information, then you shouldn’t. There may be questions that come up regarding your work history and gaps in your employment, and if you do not feel comfortable explaining that you are a cancer survivor, then you can always offer up an alternative explanation or explain that you are not comfortable talking about things.

Remember, Confidentiality is Important 

The most important thing to remember is that your confidentiality is essential. If you don’t want to mention that you’re a cancer survivor either on your resume or in person, then you don’t have to. 

Your diagnosis is nobody’s business, but your own. If, however, you feel as though it is best that your employer knows about your health for practical reasons, then you should also not feel like you are a burden or being difficult by doing so.

 


Alex C. Porter is a career advice expert with years of experience in the field. Right now he works at CraftResumes where he writes medical resumes, you can find more info here.

Dealing with a Cancer Diagnosis During COVID-19

There’s never a good time for a cancer diagnosis.

Getting a cancer diagnosis, or dealing with ongoing treatment for cancer, during a global pandemic makes a hard thing feel almost impossible. “Can I even get treatment right now” is a question I’m hearing from a number of cancer community members around the world. This is a particularly thorny question in the US, where infection rates continue to climb in hot spots across the country, but there are few countries who aren’t dealing with some level of COVID infection, and its impact on their healthcare system.

Dealing with a diagnosis now means working with your treatment team to figure out surgical options and adjuvant (chemotherapy and radiation) treatment protocols, while also figuring out infection risk. Cancer treatment affects the immune system, making patients more susceptible to COVID.

Here are some recommendations from cancer treatment experts at the NIH/National Cancer Institute:

  • Cancer treatment affects the immune system, putting you at higher risk of COVID infection.
  • If you’re undergoing cancer treatment and have chronic conditions such as asthma, heart disease, diabetes, HIV, obesity, kidney disease, your risk is further increased.
  • Cancer survivors can also be at increased risk for COVID, particularly if they received bone marrow transplantation as part of their treatment.
  • If you’re currently undergoing treatment, discuss your treatment plan with your oncology team – can you make fewer trips to the clinic? Is oral chemo an option if your current treatment is infusion-based? Are virtual visits possible for routine evaluations?
  • If you have not yet started treatment, work with your clinical team to figure out if surgery can safely be delayed; if not, follow the surgical safety guidelines for the hospital where your surgery is scheduled.
  • Manage your increased risk of infection by rigorously following handwashing protocols, avoiding touching your eyes and face, wearing a mask when you leave the house, maintaining physical distance (6 feet) from people who don’t live with you, disinfecting frequently touched surfaces regularly.
  • If you’re in a clinical trial, find out if the trial you’re participating in, or considering participating in, can go virtual – can the trial site accommodate virtual visits, and remote labs?

Living through a pandemic is challenging for everyone. Living through it while dealing with cancer treatment doubles, or even triples, that challenge. The key is to bring up your concerns with your treatment team, working with them through every step of infection prevention protocol to ensure you not only survive your cancer diagnosis, but also the global COVID epidemic.

Survival is a team effort, always.

June 2020 Notable News

It’s officially summer so grab a cup of coffee and soak up some vitamin D because this month we learn that both of those things can help prevent cancer. We also learn about the recall of a popular drug and the approval of some others. In addition, there’s a new blood test to diagnose liver cancer and some tips on how to recognize skin cancer. Finally, research shows that COVID-19 remains a very real threat, especially for cancer patients.

Vitamin D and Coffee Benefits

With so much going on, your vitamin D status may not be on your mind, but you might want to give it some thought, reports sciencedaily.com. It turns out that a good vitamin D status is good for cancer prevention and prognosis, especially for colon and blood cancers like leukemia and lymphoma. Conversely, a low vitamin D status often correlates with higher incidence of cancer and lower survival rates. You can learn more about vitamin D and cancer here.

While you’re out soaking up the vitamin D from the sun’s rays, you might want to bring your favorite cup of coffee because there’s evidence that coffee could reduce the risk of cancer, reports dailycoffeenews.com. The news comes from an update in the diet activity guidelines from the American Cancer Society. It’s not known how or why coffee seems to help prevent several types of cancers, but there’s been a decade of research that supports the claim. In addition to coffee, the American Cancer Society recommends following a healthy diet, limiting alcohol, staying active, and maintaining a healthy weight. Research shows that diet and exercise lifestyle choices are connected to 18 percent of all cancer cases in the United States. Learn more about coffee and cancer here.

Take a Look at Your Skin

All this talk about sun exposure makes it a good time to think about skin cancer. Especially since there’s room for improvement in skin cancer survival rates, says consumerreports.org. Getting to know your own skin could be the key to survival. A Consumer Reports survey found that only 52 percent of Americans have their skin regularly checked by a doctor. There’s debate about whether or not everyone should see a dermatologist every year, but early detection of skin cancer makes a big difference. When skin cancer is found early treatment is relatively non-invasive and early stage melanoma has a 98 percent survival rate. So, whether you see a doctor or not, you should perform monthly skin checks of your own. Get familiar with the moles and marks on your skin and look for any that don’t seem to fit in. If you find something that looks irregular, let your doctor know. Learn more and find examples of what skin cancer looks like here.

Metformin Hydrochloride Recall

While you’re checking your skin, you might also need to check your list of medications. A popular diabetes drug has been recalled due to cancer risk, reports webmd.com. All lots of metformin hydrochloride extended release 500 mg tablets were recalled due to the possibility that they contained high levels of N-Nitrosodimethylamine (NDMA) which is a chemical thought to cause cancer. A test by the United States Food and Drug Administration (FDA) found higher than allowed levels of NDMA in one lot of metformin. Get more information about the recall here.

FDA Expands Indication for Gardasil 9

The FDA has given accelerated approval for the use of a vaccine to prevent head and neck cancers, reports statnews.com. The human papilloma virus (HPV) vaccine, Gardasil 9, is recommended for both males and females ages 9 through 45 to prevent several cancers. However, the vaccine was not previously recommended as prevention for head and neck cancers even though they are commonly caused by HPV in the United States. The hope is that, by including head and neck cancers in the list of cancers the vaccine prevents, it will raise awareness for and help prevent the occurrence of these types of cancers. Find more about Gardasil here.

Good News for Thyroid and Non-Small Cell Lung Cancer

The FDA has also given accelerated approval for a drug to treat thyroid and lung cancer, says cancer.gov. The drug selpercatinib (Retevmo) will treat people with thyroid or non-small cell lung cancer with tumors that have a gene alteration called RET. The drug blocks the RET proteins and was shown to shrink tumors. Selpercatinib has fewer side effects than older RET blocking drugs. Accelerated approval means that, although the drug has not gone through all required levels of testing, it can be approved for use, but testing must continue while the product is on the market. The process is only used for drugs that treat serious or life-threatening diseases without better treatment options. Learn more about the accelerated approval of selpercatinib here.

Combatting Nausea

There’s another drug of note this month giving hope to advanced cancer patients who have nausea and vomiting, says cancer.gov. In a study conducted by the National Cancer Institute the drug olanzapine (Zyprexa) was found to reduce nausea and vomiting in advanced cancer patients. Olanzapine is an antipsychotic medication mainly used to treat bipolar disorder and schizophrenia and has also been used off-label to prevent nausea and vomiting in cancer patients. Learn more here.

Detecting Liver Cancer

The National Cancer Institute was also involved in a study where a blood test has been developed to determine which people are most likely to develop liver cancer, says cancer.gov. The simple blood test is used to check for exposure to certain viruses that lead to the development of hepatocellular carcinoma (HCC) which is the most common form of liver cancer. The test could help lead to early diagnosis and treatment. Most patients with HCC are diagnosed when the cancer is advanced and incurable, but when caught early the prognosis is much better. With HCC on the rise in the US, a test that could help with early detection is welcome news. Learn more about the testing here.

COVID-19 Update

The not-so-welcome news continues about the novel coronavirus. There are some new studies that emphasize the danger of the coronavirus for cancer patients, reports apnews.com. The studies showed that current and former cancer patients who developed COVID-19 were more likely to die within a month than people without cancer. One study showed that 13 percent of cancer patients with COVID-19 died. Another study found the death rate to be 28 percent. The studies are a reminder of how critical it is for cancer patients to do all they can to follow safety guidelines so they can avoid contracting the virus. Find out more here.

Cancer: The Scariest Ride of Them All

June is home to National Cancer Survivors Day (June 7th), a day to celebrate the journey of survivors, who are defined as “patients diagnosed with cancer.” While there are multiple resources for cancers patients, including an entire website dedicated to the National day, I thought that I would share my perspective of what it means to be a patient/survivor on an emotional/mental level:

Emotional/Mental

  • Sadness and in denial when diagnosed
  • Angry that this is happening to you specifically
  • Hopeless because of a lack of control
  • Frustration when you don’t understand your treatment plan
  • Guilt knowing other cancer patients have it worse
  • Anxiety when preparing for a scan or an appointment
  • Betrayal when you find out who your true friends and family are
  • Hope knowing you may make it out on the other side
  • Strong when you make it through the next chemo and/or radiation treatment
  • Resilient when you’re declared “in remission
  • Fear that the cancer may come back

This is only a glimpse into the many feelings felt, the life that is suddenly a roller coaster with ups and downs and hidden twists and turns. Sometimes you may not hear the whole story, the emotions guarded underneath a face that tries to “be strong” through it all. Really take a listen when you, as a caregiver, a medical professional, a friend, or a family member, ask a cancer patient, “How are you feeling?” Look at the facial expressions, the body language, and the words they’re using. To summarize: Be present.

The Government And Charitable Resources Available To Veterans Diagnosed With Cancer

Each year, over 40,000 veterans are diagnosed with cancer in the US. Many veterans of the Iraq and Afghanistan wars were exposed to a variety of hazardous substances, from depleted uranium to chemical warfare agents. This history of toxic substance exposure has left a legacy of health complications and may explain the worrying increase in cancer rates among veterans in recent years.

Veteran’s Affairs healthcare benefits

For veterans lacking insurance, cancer can be particularly distressing, adding financial worries to the considerable health concerns of a diagnosis. Veterans diagnosed with cancer during or after their military service may be entitled to Department of Veteran’s Affairs (VA) healthcare benefits if they are discharged under any condition other than dishonorable, regardless of the time since active service. VA healthcare benefits will cover health exams as well as specialized inpatient care. Furthermore, these benefits are available regardless of what insurance a veteran has, be it Medicare, Medicaid, private or none at all.

Veteran’s Affairs disability compensation and cancer

To receive maximum disability compensation, a disabled veteran must earn a 100% VA Disability rating. However, because of the way the rating is calculated, this can be very difficult to achieve. Veterans affected by cancer may qualify for VA disability benefits, and in cases where the VA determines the illness is service-related, they may temporarily receive a disability rating of 100% for as long as the cancer is active.

Agent Orange, a herbicide deployed in Vietnam, has been linked to Hodgkin’s lymphoma and leukemia in veterans and civilians exposed to it during the Vietnam war. As a result, veterans deployed to Vietnam may qualify for VA disability benefits under presumptive conditions. Presumptive conditions are cases in which the VA presumes a disability or illness is caused by military service and for which it decides to award benefits.

Non-governmental organizations offering assistance to veterans

Beyond the VA, there are a number of charitable organizations offering assistance to veterans diagnosed with cancer and their families . The Fisher House Foundation offers a no-cost network of comfort homes located near major military and VA medical centers across America to the families of veterans receiving treatment. This is especially important in cases where veterans must travel long distances for treatment at VA or specialist medical centers, allowing their families to be with them every step of the way. For veterans looking for guidance or aid when applying for benefits, Disabled American Veterans (DAV) offers their services free of charge, helping veterans file their claims and providing vehicles for those in need of transport to medical facilities.

The decade following the Iraq and Afghanistan wars saw an unprecedented increase in the number of cancer cases among armed forces veterans. While the VA offers benefits and services to aid veterans living with this disease, in many cases it simply isn’t enough. For veterans in this situation, there exists a strong framework of charitable organizations ready and willing to pick up the slack and aid them in the fight.

Cancer, COVID, and Change

“There’s something to be said for not being a patient,” one of my doctors said.

“It feels so good,” I said during our telemedicine appointment, “to be away from the hospital for eight weeks in a row.” It’s the longest hospital break I’ve had since being diagnosed with cancer last summer. Before mid-March, I’d been to four to ten medical appointments every month. Being a cancer patient felt like a full or half time job. Because of the pandemic, I’m now treated by my oncology team from the comfort of my own home.

I don’t miss shuffling from room to room or floor to floor and sitting in waiting rooms for hours. I love not needing to ask for rides or take cabs or public transportation while my white counts are low. I don’t miss being poked,  prodded, weighed, and measured or having my vital signs documented in hallways while removing my coat, wig, and shoes. I love not having to roll up sleeves for the vials of blood to be drawn or to pull down my pants so the doctor can put a stethoscope to my belly and bowels.

Because of the increased health risks at hospitals, new access to telemedicine, and flexibility around clinical trial protocols, I can see my oncologist, face to face, through Zoom. Questions can be answered ,via email, a text, or a phone call. Clinical trial drugs are overnighted to me.

I enjoy the time and money I’m saving and the convenience of getting all care from home. But I also miss the real-life hugs, handshakes, and high fives that used to come with seeing the clinical team in person.

COVID Challenges

Many cancer patients are losing jobs, homes, loved ones, and health insurance. For those newly diagnosed with cancer, surgery, scans, and treatments must be done all alone. Those in active treatment are often terrified of catching COVID-19 while immunocompromised. Others are afraid hospital visits will expose our family members to COVID.

It’s startling how much hospital protocols and procedures have changed. When I look back or think about what comes next, I worry. I hope the pictures and stories below capture what it’s like to be an oncology patient and how swift and severe the COVID-related changes over the last few months have been and continue to be.

From Person to Patient

My partner drove me to the hospital on the morning of my surgery. We checked in before 6a.m. and waited, with others, in the lobby.

Eventually, we were called up and walked, single file, through halls by someone escorting us to the pre-op area. Each one of us was assigned a bed (pictured) and a nurse (not pictured). The photo is of the pre-op area.

My partner got to visit me before surgery. He was there when the surgeon, nurses, fellows, and anesthesiology came to prepare me for surgery.

If surgery were scheduled today, my partner wouldn’t be able to stay with me.

The Shock of a Post-Op Diagnosis

This is me in post-op. My partner took this photo on his phone and was able to share it with my family and friends to let them know I made it through surgery. They were worried because it went hours longer than expected.

In the photo, I’m high as a kite and happy to be alive. I’ve just downed the iced coffee my partner snuck in (as planned and with permission from the nurse). In the photo, I am still in shock that my surgery was five hours long, it’s afternoon, and that cancer was found. I don’t yet know how serious my diagnosis will be. That will come twelve hours after surgery when the surgeon explains my cyst was actually a cantaloupe-sized cancerous tumor, aggressive, advanced, and usually chronic. Mercifully, my partner is with me as she explains that she had to do a total hysterectomy, removing ovaries, fallopian tubes, lymph nodes, and my omentum and lays out the timeline for chemotherapy.

My partner held my hand and crawled into my bed to hold me while I sobbed. But he provided far more than essential emotional support. He helped me stand and keep my balance, helped me get to my first trip to and from the restroom. He was there to advocate for me when I dozed off and to get the nurse when my call button went unanswered. He was the one who provided my loved ones with updates. He was the one who snuck my favorite health foods to help “wake up” my digestion enough to allow me to be discharged after one day.

It’s hard to imagine what that traumatic and challenging day would have been without him. I can’t imagine recovering from major surgery and receiving such devastating news alone but it’s what many diagnosed with cancer during COVID now endure.

At-Home Adjusting & Recovery:

Going home after surgery is comforting and scary. My right leg was giving out from under me because my obturator nerve “got heat” during my surgery. I had trouble standing in the shower or lifting my right leg onto the bed or into a car. I had extensive swelling and bruising on my right side and pelvic area and had a bit of a reaction to the bandage tape. I didn’t know what was normal. And after a phone call to the hospital, I was asked to come back in for a check-up.

Today, I’d either have had a telemedicine appointment or need to decide if an in-person visit with a medical professional is worth possible exposure to COVID. These are the types of decisions we are all facing but it’s especially scary when one is already vulnerable and fighting for life.

Early Treatment: Chemo Buddies are Not Optional

Getting chemotherapy infusions is time-consuming, scary, and intense. Everyone reacts differently to the many drugs given with chemotherapy (such as Benadryl, steroids, Pepcid, and anti nausea drugs). Everyone reacts differently to the chemotherapy, marked hazardous,  that require the nurse to wear gloves, masks, and protective clothing to prevent contact in case of accidental spills. Some drugs make you sleepy, and parts of your body numb. Others make you feel amped, wired, and agitated.

Some cause nauseous, headaches, or allergic reactions, immediately and others not for days or weeks.

Having a chemo-buddy like Beth was a huge help. She was the one who asked for window seats in the infusion center, who made sure I got warm blankets. She massaged my feet and reminded me to listen to guided imagery. She sat with me in waiting rooms as we waited for my labs to come back to make sure my white and red blood counts weren’t too low, my liver counts not too high, and that the chemo was making my tumor marker scores go down.

She was the one who touched the elevator buttons for me, the one who walked me to the car and handed me off to my fiancé at the end of the day. She was the one who got me water, coffee, or snacks.

I felt safer whenever I had a chemo buddy with me and Beth would also take notes and make sure I didn’t skip any of my questions just because the oncologist seemed in a hurry.

Beth was not only a source of support but provided an extra pair of hands to plug in my iPhone, to hold my bags, food, or books. She was the person I could share tears, laughs, and heart to hearts with. She listened as I worried about my daughter, as I struggled to balance work and parenting.

She was there to support me as I talked endlessly about healthy eating, fasting, supplements, and complementary medicine. But the greatest comfort of all was knowing she would be there if passed out, fell, or had an allergic reaction to all the treatment drugs. At my last treatment, I was alone and Beth at home. It was hard.

In-Between Hospital Visits: Public Services & Personal Support

 

Social distancing during treatment is hard even for introverts like me who need a lot of alone time. When physically weak, short visits with loved ones who bring food, hugs, and gifts are life-affirming and life-changing.

Those who show up do so for cancer patients as well as our families. They help us to take care of our kids, partners, pets, plants, and housework. They help us manage as we face fear and loss, whether losing jobs or body parts, or hair and having few or no visits is hard. Today, barber shops where we might get our heads shaved are closed.

The wig shops and stores we go to for hats and head coverings are often closed.

We can’t go out to eat with loved ones, or do yoga on good days. We can’t have parties for our loved ones to create normalcy or new rituals. We can no longer go out in the public either. We can’t do things such as sitting alone writing in a journal and drinking a smoothie when swallowing food is too hard.

We can’t travel to remind ourselves there is still beauty and magic in the world and to enjoy our loved ones and lives as much as possible.

These are not all small things or luxuries in coping with the brutal effects of cancer treatment and chemotherapy. They can change the cancer and recovery experience and all that helps keep us strong. 

Later Treatment

We need others when we are sick. We might need help standing, walking, or eating. We might need rides, treatments, or blood or platelet transfusions. We might need help articulating symptoms and side effects. To have fewer in-person visits when so medically vulnerable can be anxiety-producing.

We also have less in-person celebrations with our clinical teams when we finish a line of chemotherapy or have a cancer-free scan. We no longer have informal pet therapy either with the cheerful and cuddly animals of friends, family, and neighbors.

I can’t imagine going to chemo alone, depleted, and with low white counts.

The increased risks, vulnerabilities, and lack of human company and tactile comforts feels indescribably epic.

Maintenance Treatment & Clinical Trials

My immunotherapy infusions (or placebo) have been put on hold for the past two cycles. I asked if I could remain in my clinical trial if I refused to come to the hospital for treatment until the risk of getting COVID is decreased. Luckily, I’ve been allowed to stay home. Clinical trial protocols, in general, are much more flexible as a result of the pandemic. My medication (or placebo pills) are mailed to me. Before March, in-person prescription filling was required and always took hours.

However, I’ve been weighing what I’ll do if I have to weigh virus-related risks against the possible benefits of clinical trial treatment. If I’m required to be treated at the hospital I may drop out of the trial. This is one of the many difficult decisions oncology patients often face but it’s made more complicated because of the coronavirus. .

Have Some Changes Been for the Good?

The losses, challenges, and changes are worrisome and real. That said, not all the COVID-related changes for oncology patients are bad. The whole world is wearing masks, staying home, socially distancing, and worrying about health, wellness, death, and dying.

Instead of being stared at when I wear a mask, I’m now in good company, because much of the world is doing the same. Many of us are consumed with health issues and worried about health, mortality, and immune functioning.

To be reminded, once again, that health and life aren’t guaranteed to anyone, that we are all facing mortality, and must appreciate every day we have, is strangely comforting. While I’m reminded of our collective vulnerability, to hear health concerns, risks, and challenges confronted as the world and nation’s collective concern is a reminder that none of us are being personally picked on for failing at being human, we are just, in the end, all excruciatingly fragile and mortal.

“I feel like I’ve been slow-dancing with death since last summer but now I feel less alone,” I told my friend Kathy. “It’s like others have joined you on the dance floor,” Kathy said. “Yes,” I said, which once again makes me feel like a person rather than a patient and there’s something to be said about not being a patient….


Resource Links:

  1. The National Cancer Institute  guide: Coronavirus: What People with Cancer Should Know.
  2. American College of Surgeons: (ACS) Guidelines for Triage and Management of Elective Cancer Surgery Cases During the Acute and Recovery Phases of Coronavirus Disease 2019 (COVID-19) Pandemic
  3. Sample of patient visitation changes hospitals have implemented from Mass General Hospital.
  4. Telehealth at Dana Farber.
  5. Coronavirus (COVID-19) Update: FDA Issues Guidance for Conducting Clinical Trials

Diana’s Story: How Connecting with Another Head and Neck Cancer Patient Saved My Life

Diana’s Story: How Connecting with Another Head and Neck Cancer Patient Saved My Life from Patient Empowerment Network on Vimeo.

After Diana’s cancer diagnosis, she was told that she had only months to live. But, after meeting fellow head and neck cancer patient Sajjad Iqbal online, Diana’s path changed dramatically and she is now cancer-free. Hear their inspiring story about the power of connecting with other patients.


Transcript:

Sajjad:                        

My name is Sajjad Iqbal. I am a physician and also a cancer patient. I have the honor of serving on the board of Patient Empowerment Network.

Diana:                         

I’m Diana Craig from Auckland, New Zealand.

Sajjad:                        

I was diagnosed with a gland cancer, which is a salivary gland, on the left side of the face. The actual histology was a salivary duct carcinoma. It was diagnosed in February of 2002.

Diana:                         

In January of 2018. I was diagnosed with squamous cell carcinoma HPV 16 on my tonsil and soft palate.

Sajjad:                        

I do a lot of counseling for the cancer patients and mentoring and advocating and all that. And as a part of that, I have joined a head and neck cancer support group, which is based in New Zealand. It’s on Facebook. And there are some great people there who advise together cancer patients. Diana posted a cry for help back in May of this year, May of 2019, where she was just given the news that her cancer had recurred in her lungs and near her trachea. And her oncologist gave her a very grim prognosis and he thought that the medication had a very small chance of success.  

And he told Diana she had a few months to two years to live. Diana was devastated. She posted on that Facebook group, and I reached out to her to introduce myself, to tell her how I have managed my own cancer, and I told her that I could try to help her if she would be willing to share the information with me.

Diana:                         

Initially, I hadn’t heard of him before.

And I felt I needed to do some research, and I was told by everybody what a good guy he is, and to absolutely go down that road. So, I happily gave my information and certainly after the first conversation or interaction with him, I knew I was in good hands. Very much so. It was, to me, I used to call him my angel, my guardian angel, because I really felt safe and informed and encouraged. And his mantrais hope and determination and that is such a valid mantra when you go through cancer.

And it’s something that I said to myself oftentimes because it was so poignant, and it’s everything that you have to be and do to empower yourself and to be proactive, to find the best possible outcome for yourself.

Sajjad:                        

You know, as you know, I have written a book about my amazing cancer journey. The book is called Swimming Upstream. And a lot of other people have found it very inspirational. So, my story was not a whole lot different from Diana in this respect: that I was given a very grim prognosis back in 2002.

I was told that I had less than 30% chance of surviving for two years and I was also told that there was no five-year survivors with this cancer. And I made it my goal to beat the odds. And I used to say that in that case, I’ll be among the 30% and if no one has survived five years, well, I’ll be the first one. So, the hope and determination that Diana just mentioned, that’s my motto. Hope and determination. And I tried to instill that in Diana.

Diana: 

It certainly empowered me or put me in the right direction as to, I mean, I like to be moving, I like to be able to fight the fight if I know where to fight to. And also, know what questions to ask. I mean, when you’re in that situation, you are told how it is. And you don’t know what you don’t know. And unless you’ve been informed by somebody else or do the research yourself, and even then, that’s pretty dubious, because you stumble across information that you don’t want to know, and a lot of it’s scare tactics. But with his knowledge, with his background, with his first-hand experience of going through what we have gone through, gave me the confidence to do everything that he said.

Sajjad:                        

And I always recommend to my friends, other patients, that going to your oncologist about the cancer treatment is so much different than going to a doctor for your blood pressure or your bronchitis or so on.

This is an area where we need to be fully prepared. We need to go in and have a dialogue with our doctors who are treating our cancer and this is a matter of life and death. Literally, life and death. So, there is no room for just sitting there passively and just listening to everything and agreeing to everything. We must ask a lot of questions to our doctor. They should be, not only willing to answer our questions, but they should be welcoming our questions. So, if a doctor does not welcome your questions, does not give you plenty of time, does not explain everything that he or she wants to do, then that’s not the right doctor for you. And you’ve got to move on, and quickly.

Diana:                         

Where would I be without meeting Sajjad? I would have no hair at this point. I would be in the middle of chemo and probably K-truda. I don’t believe that I would have such a radical improvement so quickly. Because mine had gone after three infusions, which is nine weeks. So, I floundered the first time because I felt like I needed the help and I couldn’t get any. And the last time, I felt so much more in control, and anybody would think I’m a control freak. And let me tell you, I’m not. At all.

And also, being on my own, as well, I didn’t have a partner there to talk to. It was heaven-sent. And I said to him, “If I come out okay, I’m going to come and see you.” And here I am. Coming to see you. Because it meant so much to me. It really meant so much to me. It really did.

Sajjad:

Yes, it did.

The medical science is moving at an astonishing pace to find new medicine, new modalities, to treat cancer. We cannot be  – the patient must not get bogged down in the statistics of, oh you have this percent chance of survival, or this percent chance of death. Because those numbers don’t mean anything anymore. They’re old numbers. And to fight the cancer, we need our immune system to be involved in the fight.

If we get depressed, if we lose all the hope, the immune system shuts itself down, and that helps the cancer. So, number one thing is to always have hope. Always remain optimistic. And number two is determination. You determine that you are going to fight this and you are going to survive. And then, having those two tools at your disposal, become the empowered patient. Learn as much as you can about your cancer. Talk to other people, go to the support groups. And, again, let me plug Patient Empowerment Network. Go to our website, learn about the cancer. Then go to your doctor and question them and find out how you can improve your treatment. And that’s the way you fight cancer.

Cancer Trauma: How To Know If You’re At Risk and Key Strategies for Recovery

The impact of cancer extends beyond the merely physical. While treatment targets cancer specifically in the body, the experience doesn’t leave the mind, spirit or emotions untouched.  The toll it takes has been likened to a natural disaster or trauma. In fact, recent studies have put forward the theory that surviving cancer fits the framework of Post Traumatic Stress Disorder (PTSD). [1] The term PTSD is commonly used to describe a range of symptoms an individual may develop in response to experiencing a traumatic event, in which bodily harm was experienced or threatened.

Most people associate PTSD with war veterans and victims of violent crime, but any life experience in which our safety and mortality are threatened can trigger PTSD. The physical and mental shock of having a life-threatening disease is a traumatic event for many cancer patients.[2] The experience of trying to get back to normal after cancer treatment ends mirrors that of returning combat soldiers. The immediate crisis is over but our sense of security is shattered, leaving us feeling unsettled and vulnerable.

And what of those for whom treatment doesn’t end?  Metastatic breast cancer patient, Abigail Johnston points out that “for men and women enduring the trauma of cancer treatment, the trauma is never over… reminders exist everywhere, ready to pop out when least expected to wreak havoc.” [3]

Could You Have Cancer-Related PTSD?

The symptoms of PTSD are similar to those of other states such as depression and anxiety, but one of the main signs that distinguishes PTSD is re-experiencing the traumatic event, often in the form of recurrent dreams or intrusive thoughts.  These may consist of persistent memories of taste, smell, touch, and sound (for example you may still be able to “taste” the metallic taste of chemotherapy when you think about the event).

A number of risk factors may make you more vulnerable to PTSD.   Your life experiences, including the amount and severity of trauma you’ve gone through since early childhood; having a high level of stress or other mental health problems, such as anxiety or depression; lacking a good support system of family and friends; and the way you deal with stress are all contributing factors.  On the other hand, certain factors, such as increased social support, accurate information and supportive medical staff may lower the risk of developing PTSD.

Signs and Symptoms of PTSD

Symptoms of PTSD can arise suddenly, gradually, or come and go over time.  Sometimes symptoms appear seemingly out of the blue. At other times, they are triggered by something like the anniversary of your diagnosis or surgery, follow-up scans, or a certain image, sound or smell.

There is no right or wrong way to think, feel, or respond to cancer, but it’s important to know which symptoms and signs to look out for, so you can put strategies in place to deal with it. People react in different ways to traumatic events and you may experience some or all of the following reactions to a greater or lesser degree.

  • Re-living the traumatic event: Intense memories of the time around your diagnosis, flashbacks or nightmares, especially if accompanied by symptoms like racing heartbeat, shortness of breath, sweating, nausea, or uncontrollable shaking.
  • Increased arousal: Feeling hyper-alert ( the “fight” and “flight” reaction is always on even though there is no present danger at hand), on edge, irritable, easily startled or angered; mood swings, difficulty sleeping or concentrating.
  • Avoidance: Staying away from places that remind you of the traumatic time (for example, avoidance of follow-up appointments).

8 Key Strategies and Tips for Recovery

 

1. Acknowledge and accept your feelings

Don’t deny or ignore how you are feeling. Accepting your feelings is part of the healing process. Allow yourself to feel what you feel without judgment or guilt. Remember,  there is no right or wrong way to think, feel, or respond to cancer.  Be compassionate to yourself and patient with the pace of recovery.  Talk through your fears with someone you trust. Try journaling, art or other creative outlets to help you work through your feelings.

2. Avoid obsessive thinking

While it’s  important not to ignore your feelings, obsessively dwelling on them will slow the healing process down.  One tip is to designate one or two 10-minute periods each day, time in which you can fully focus on your feelings. When intrusive thoughts come into your head during the day, write them down and “postpone” them to the period you’ve designated.

3. Reduce your stress

Make relaxation a part of your regular routine. Learn to meditate, practice yoga, take a walk in nature or do whatever it is that helps you relax and unwind. Relaxation is not a luxury – it is a necessary step in your recovery.

4. Take regular exercise

Regular exercise boosts serotonin, endorphins, and other feel-good brain chemicals.  It’s one of the simplest and most effective ways to reduce stress and anxiety, helping you feel grounded in times of emotional stress.

5. Eat a healthy diet

A healthy body increases your ability to cope with stress from a trauma.  Foods rich in certain omega-3 fats—such as salmon, walnuts, soybeans, and flaxseeds—can give your mood a boost. Avoid caffeine, alcohol and nicotine, which can worsen symptoms.

6. Get plenty of sleep

Poor sleep can make your trauma symptoms worse. Go to sleep and get up at the same time each day and aim for 7 to 9 hours of sleep each night.

7. Pay attention to triggers

Anniversaries of your surgery, diagnosis and other cancer-related milestones can reawaken memories and feelings. Plan ahead for those times.

8. Connect with others

Following a trauma, you may want to withdraw from others, but isolation makes things worse. Research shows that support from others is an important part of your healing journey.  Look to cancer support groups in your area or search online for groups.   Talking to a psycho-oncologist or counsellor can also help.

When to Seek Help

It’s normal to feel anxious and unsettled after a traumatic event such as cancer.  A diagnosis of cancer is distressing, the treatments and side effects are stressful, and the fear of recurrence is frightening.  Most people find the intensity of their feelings will ease in a relatively short period of time, but for some the feelings will stick around or increase in intensity.

If painful thoughts and intrusive memories last longer than a month, and begin to cause problems in your  personal relationships, employment, or other important areas of daily life,  it’s important to seek a professional diagnosis of PTSD. The sooner PTSD is tackled, the easier it is to overcome.  Unfortunately, many patients are not referred to psycho-oncology services to be assessed and treated, as high levels of sadness and anxiety are often perceived as ‘normal’ reactions to cancer diagnosis and treatment,[4] so it may be up to you to advocate for your own assessment.

Types of treatment can include cognitive-behavioral therapy (adapting negative ways of thinking into more positive ones to help “re-frame” the traumatic experience); exposure therapy (to help you safely face the thing that you find frightening); medication (antidepressants/anti-anxiety drugs); and psychotherapy. When looking for a therapist, seek out mental health professionals who specialize in the treatment of trauma and PTSD.

You may also want to consider a form of treatment called EMDR (Eye Movement Desensitization and Reprocessing), which incorporates elements of cognitive-behavioral and exposure therapy with rhythmic eye movements designed to stimulate the information-processing system in the brain. The aim of the treatment is to help you process the traumatic events, and speed up recovery.

Conclusion

A trauma like cancer shatters our sense of security,  making us feel powerless and vulnerable. Taking positive action towards recovery directly challenges this sense of helplessness and helps us regain a sense of control.  It can take time to get over the trauma and feel safe again.  But by seeking treatment, reaching out for support, and developing new coping skills you can heal and move on with your life.


[1] The Diagnostic and Statistical Manual of Mental Disorders introduced malignant disease in its definition of PTSD in 1994.

[2]  The National Cancer Institute estimates that approximately 35% of patients experiencing cancer may suffer symptoms of PTSD.

[3] No Half Measures. “The Violence of Cancer” https://nohalfmeasures.blog/2020/01/09/the-violence-of-cancer/

[4] Leano, A., Korman, M. B., Goldberg, L., & Ellis, J. (2019). Are we missing PTSD in our patients with cancer? Part I. Canadian oncology nursing journal = Revue canadienne de nursing oncologique, 29(2), 141–146.

Let’s Start Healthy Habits to Reduce Your Cancer Risk

Living a healthy lifestyle can be very helpful in reducing your risk of contracting various diseases, including heart diseases, osteoporosis, stroke, and diabetes.  You might not believe it, but just by eating healthy, exercising regularly, and incorporating healthy eating habits, you can reduce the risk of one of the most dreadful diseases, cancer.

Nowadays, cancer has become quite common. Studies have shown that our lifestyle choices play a vital role in reducing your risk for this dreadful disease. Here are some simple tips that can be very helpful in cancer risk reduction.

Cancer Risk Reduction:

1. Maintain a Healthy Weight

We all understand the importance of maintaining a healthy weight. Still, many of us fail to maintain our body weight. If you are overweight, the first and foremost thing that you need to do is avoid adding any more extra kilos. Once you start keeping a check on your weight, it would automatically help in improving your health. Once you achieve this goal, put some extra effort and try to reduce your weight by a few pounds.

Tips for weight loss:

  • Do regular exercise or indulge yourself in physical activity.
  • Focus more on eating fresh fruits and vegetables.
  • Avoid taking fried food, canned food, and sweetened aerated drinks

For faster results, you can even take phentermine. Phentermine is found to be very useful in weight loss when accompanied by regular physical activity and a healthy diet. The best part of this supplement is the availability of “online phentermine prescription

2. Don’t use tobacco

We all are well aware of the ill-effects of smoking. Smoking may result in various kinds of cancer like lung cancer, bladder cancer, cervix cancer, mouth cancer, pancreas cancer, larynx cancer, kidney, and bladder cancer. It’s not only active smokers that have higher chances of getting cancer. Passive smokers, too, have higher chances of getting cancer of lungs.

Hence, avoiding tobacco products or quitting smoking completely is very important if you want to reduce your risk of cancer. Quitting such addictions is not easy. But with determination, strong will power, and support of your family and loved ones, you will be able to quit it. If you want, you can seek help from professionals.

3. Protect yourself from the sun

We all know the importance of sunlight for sustaining life on earth. But, too much exposure to the sunlight may cause skin cancer. Tips to protect yourself from skin cancer caused due to sunlight:

Sun rays are strongest between morning 10 to evening 4. So avoid going out at this time of the day. Try to keep yourself in the shade when you are outside. Wearing hats, glares, and applying sunscreen lotion can be very helpful. Avoid using sun lamps and tanning beds.

4. Cancers that should be tested for regularly:

Going for regular check-ups is very important if you want to reduce your risk of cancer. Numerous tests help in detecting cancer at an early stage. Early the stage of detection higher is the chances of survival. In the case of breast and cervical cancer, women are recommended to go for cancer screening tests at an interval of six months. These simple screening could save thousands of women’s lives every year.

Cancers for which screening test should be taken frequently:

  1. Breast cancer
  2. Cervical cancer
  3. Lung cancer

5. Avoid alcohol and if you take it, take it in moderation

Drinking alcohol increases the chances of getting cancer. Taking a drink or two occasionally might not be that harmful, but people who drink regularly that too in quite large quantities should try to overcome this addiction. If you want to quit drinking, you can start by avoiding parties and gatherings which are centered around alcohol. Try taking non-alcoholic drinks at parties. If needed, consult a health-care professional. Avoiding alcohol would not only save your liver but would also reduce the chances of getting liver cancer.

6. Avoid risky behaviors

Another essential health tip that would help you in reducing your risk of cancer is to avoid getting indulge in dangerous habits.

Practice safe sex:

Sexually transmitted diseases are found to be a major cause for various types of cancer, including cancer of lung, anus, and liver. Always follow healthy sexual habits. Try to have a monogamous relationship. Whenever possible, talk to your kids about the importance of safe sex. If possible, get your kids vaccinated against HPV at the right age.

Avoid sharing needles:

Sharing needles is another reason for the transmission of HIV. Besides this, sharing needles with a person having Hepatitis C and Hepatitis B would result in the transfer of these diseases, which may further increase the chances of having liver cancer. If you are looking forward to getting rid of drug addiction, taking help from a professional could be very beneficial.

Cancer is a very dangerous disease. It not only affects the patient, but it hampers the life of the people surrounding who are connected with the patient. If, by following some healthy habits, we can reduce the risk of these diseases, believe me, it is worth every effort. Eat healthily and live a healthy lifestyle and reduce your risk of the health monster named Cancer from entering into your life.

Patient Profile: Perseverance and Positive Thinking Helped This Young Mother

Cancer is a stealthy assailant. Symptoms can be nonexistent or masquerade as some other ailment. When a medical professional utters the “C” word, the shock can be intense.

“I had no idea,” said Lindsay Hutchings of the softball-sized tumor that had been growing in her chest behind her breastbone. “I just knew I didn’t feel right.”

Lindsay was 34 at the time of her diagnosis. A mother of two young children, she never suspected cancer when she started feeling unwell. It was October. Time for picking Halloween costumes and the season when colds spread like wildfire through schools.  A mom with young kids feeling fatigued and achy was nothing to be alarmed about.

Lindsay went to a walk-in clinic. When she didn’t improve, she went to her primary care doctor. She was given antibiotics. She was tested for the flu and then mono. Allergies were blamed and antihistamines suggested. Every week she was back in either the walk-in clinic or her primary care doctor’s office.  Until one morning she woke up with a swollen neck and jaw.  She knew this was not just a stubborn cold. She knew it wasn’t allergies.

“This time I was diagnosed with a sinus infection and referred to an Ear, Nose & Throat (ENT) physician. It was frustrating because I knew it wasn’t a sinus infection. I just didn’t have any idea what it could be.”

By this point, Lindsay’s husband, Jake, was going to appointments with her in hopes he might think of some question or detail she had missed. The ENT doctor examined Lindsay and listened to the path that had brought her and her husband to see him. He scoped Lindsay’s sinuses and found nothing.

Then he ordered a CAT scan and posed the possibility that Lindsay’s symptoms might not be related to a virus, allergy, or superbug. It might be cancer.

She was told to expect to wait three weeks for the results of her CAT scan because of the Christmas and New Year’s holidays, but the ENT called her after a few days with the results.  He suspected lymphoma and referred her to an oncologist.

Lindsay started the New Year off by having two biopsies and a PET scan to confirm what the ENT had suspected.  Four months after she first began feeling off, Lindsay had an answer. It was Stage IIB Hodgkin Lymphoma.

About Hodgkin Lymphoma

Cancers that start in white blood cells—also called lymphocytes–are categorized as lymphomas. The two main types of lymphomas are Non-Hodgkin Lymphoma and Hodgkin Lymphoma. Hodgkin Lymphoma (HL) can start in any lymphoid tissue in the body, such as the spleen, bone marrow, thymus, adenoids or tonsils. However, it most often starts in lymph nodes in the upper part of the body. Lymph nodes are bean-sized collections of lymphocytes and other immune system cells and are located throughout the body.

The causes and triggers for HL are unknown. Children and adults can develop Hodgkin Lymphoma. The average age at the time of diagnosis is 39. Although there is a higher rate of lymphomas in people with immune disorders, there is usually no known risk factor or cause for people diagnosed with HL.

There are four subtypes of classic HL and a rarer form of HL called nodular lymphocyte-predominant Hodgkin lymphoma (NLPHL). Treatment for the disease varies depending on what type the patient has, what stage the disease is in (I, II, III, or IV), and whether certain other symptoms are present (called B symptoms).

Cancer’s Emotional Side Effects: Shock, Optimism & Guilt

From the first mention of lymphoma by the ENT physician Lindsay began researching the disease online. She went to her first post-diagnosis oncology appointment armed with questions. Her oncologist patiently answered her questions and laid out a treatment plan he felt confident was the right one. He explained the survival rates were high and the rates of recurrence of HL were low. He assured Lindsay and Jake her prognosis was good.

“I was in shock. I had no idea what I was doing but he was responsive and reassuring. I would call or email my oncologist between appointments with questions and he always responded. It really helped me be positive and more confident,” Lindsay explained.

She needed that positive confidence to help with the first challenge that followed on the heels or her diagnosis. She and Jake had to sit down with their daughters—who were just four and seven—to explain their mommy had cancer and what that meant for their family.

Lindsay’s mother had passed away from lung cancer just two years prior.  It was hard for seven-year-old Delaney to understand that this cancer was different from her grandmother’s.  She became anxious after the effects of treatment began taking their toll that Lindsay might die just as her grandmother had.

Her younger daughter had a hard time distinguishing the kind of sick her mommy was from the everyday illnesses she and her friends might have.

And of course, once treatment began, there was a lot Lindsay couldn’t do for her children anymore. Some days she couldn’t get out of bed. Often Lindsay was unable to take them to school or help with homework. She stopped volunteering at their schools. A low point for their family came early in Lindsey’s treatment when Delaney came home from school sick Lindsay had to avoid being near her. Meanwhile, her husband worked from home as much as he could or took time off to care for Lindsay and their daughters.

Lindsay admits, “I still feel guilt for the burden I put on my family.”

The Cancer Journey Continues

Lindsay’s cancer was treated with chemotherapy and radiation. There were side effects, of course:  exhaustion, chemobrain, nausea, constipation, blood clots.  She had to get daily shots of blood thinners in the doctor’s office, which brought other risks and complications. There were moments of panic when it seemed the tumor had stopped responding and additional biopsies followed.  But in the end, nearly a year after Lindsay first began experiencing symptoms, she was declared cancer-free.

There is a sense of victory from beating cancer. But like many other cancer survivors, Lindsay can’t say her cancer journey has truly concluded.

“At this point I am cancer-free, but I’m paranoid. It [the tumor] got so big without me knowing! I feel like some part of me will always worry.”

Ten to 30 percent of HL patients experience recurrence of the disease, with recurrence being lowest for those who are treated in the early stages of the disease. However, rates of developing a second cancer are higher for HL survivors than the general public regardless of whether the lymphoma returns.

Lindsay will have quarterly follow-up visits and two scans this year to screen for recurrence. As long as her results remain normal, she can scale back to annual screenings the following year. However, because she’s now at higher risks for other medical issues, she needs annual screenings by a cardiologist and pulmonologist. She will have annual mammograms now, instead of waiting until age 40 or 45. She has a roster of doctors at a time of life when many of her peers are in peak health.

The upside, Lindsay says, is that if any of her friends or family ever need a recommendation for a specialist in town, she has her list ready!

In addition to the health concerns she will carry, Lindsay also continues to deal with fatigue. Fortunately, while undergoing treatment Lindsay was able to connect with, Brittany, a two-time survivor of Hodgkin Lymphoma.  Brittany used to teach at Delaney’s school and when she heard about Lindsay’s diagnosis, she tracked down her phone number from a friend because she knew from experience how helpful it is to hear perspective and encouragement from someone who has been there before.

“When I went to my appointments, I was usually the youngest person in the office by decades,” Lindsay explained. Talking to someone closer to her own age has helped.

In addition to finding a connection with a fellow survivor, Lindsay is also grateful for the support she and her family received from friends and family in their community. During her treatment, Jake and Lindsay’s family helped as they could.  But there was also an outpouring of support from friends and acquaintances who helped with meals, gift cards, and donating to a GoFundMe account for the family.

“If I could give one piece of advice,” Lindsay says, “it would be to build your community. If we didn’t have friends and family to help get us through, I don’t know what we would’ve done. You can’t be involved in your community or volunteer or even go to church when you are sick. But I am so grateful that we were involved and active before the diagnosis.”

At a time when she saw few people and did very little outside of her home, she felt buoyed by the care and concern of from relationships she’d established before her illness. So, along with the guilt and worry she may carry forward from her cancer journey, she will also carry an abiding appreciation for the value of a supportive community.

Life for the Hutchings family is gradually settling back into normalcy, with family vacations and school schedules supplanting doctors’ appointments and treatments. Lindsay can begin to enjoy her new mantle of ‘cancer survivor’ with increasing confidence. But rather than consign the experience to something that “happened” to her, she is sharing what’s she learned from the experience. She would not claim to be an expert in cancer and its treatment options. But she does advocate for the power of building relationships and positive thinking. These are lessons that can help others whether they are confronting cancer or any other life-altering ordeal.

Three Night Time Activities To Help Cancer Patients Fall Asleep Quickly

Battling cancer is, undoubtedly, tough. On any given day, you might find yourself feeling so sick that you can’t even get out of bed. Being relegated to bed and struggling to even fall asleep can feel utterly disheartening. Adopting some healthy habits in your sleep routine can help to ease your body and mind into sleep more quickly and easily, letting you get some much needed rest and recharge.

Why Does Cancer Alter Your Sleep?

There are a lot of side-effects that you might experience as a result of your cancer treatment. Though one of the most common side-effects is fatigue, many patients also find that they have difficulty sleeping, which only exacerbates their feeling of  fatigue and sleep-deprivation. These sleeping problems can be the result of many factors such as newly developed sleep disorders, physical triggers, and psychological triggers.

Sleep Disorders

It is incredibly common for cancer patients to experience insomnia, which refers to any number of factors that make it difficult for someone to fall asleep and/or stay asleep. People with a serious illness are at an increased risk for insomnia. In fact, while about 20% to 30% of the healthy population suffers insomnia, over half of all cancer patients have reported facing periods of insomnia.

To be clear, insomnia is not caused by cancer, but it is a precipitating issue that results from the physical and emotional stress that often accompanies a cancer diagnosis.

Other sleep disorders may also manifest, such as sleep apnea, hypersomnia, circadian rhythm disorders, parasomnia, and restless leg syndrome. All of these make it difficult for sufferers to fall asleep and sleep soundly through the night, therefore deteriorating sleep quality and causing daytime fatigue and exhaustion.

Physical Triggers

Cancer can cause a great deal of pain and discomfort, which makes it understandably difficult to fall asleep as well. Tumors and treatments alike may result in troublesome pressure in isolated spots on the body or all throughout, as well as gastrointestinal issues, breathing problems, fevers and itching, to name just a few physical symptoms. When your body is uncomfortable, it is incredibly difficult to relax and lull yourself into restful sleep.

Psychological Triggers

Additionally, cancer comes with its fair share of life changes and psychological stressors. Fear and anxiety related to your diagnosis and prognosis alone can be enough to keep you up at night.

Following your diagnosis, you might also experience career, relationship, and body image changes which cause additional stress. We understand that cancer can be a distressing experience, and many patients are at an increased risk for anxiety and depression.

If you are experiencing any troublesome side-effects, whether they are related to your sleep pattern, your physical well-being, or your mental health, it is important to consult your oncologist and other medical professionals for their advice and assistance in easing your symptoms.

How Having A Routine Makes It Easier To Fall Asleep And Sleep Well

For the sake of your health and quality of life, sleep is perhaps the most important thing you can do for yourself. A good night’s sleep can increase productivity, improve mood, and expedite the body’s natural healing processes. This is a vital part of everyone’s life, not just those who are battling illness—still, up to half of all Americans report not getting enough high-quality sleep each night.

If you are kept up by physical pain or emotional stress, implementing a bedtime routine that works to calm your mind and body in preparation for sleep might be the change that you need. Your routine does not have to be overly complicated, especially if you don’t have a whole lot of time or energy in the evening, but a few moments of intentionality before bed can work wonders for your sleep quality and relieve daytime fatigue and sleepiness.

1) Take A Bath

We all like to be warm and cozy in bed at night (hello, fuzzy blankets!) but it is actually really important for your core body temperature to be fairly cool in order to induce sleep effectively. Our bodies follow circadian rhythms which dictate when to sleep and when to wake up. At night, your body naturally cools down and begins to release melatonin and other sleep hormones. Taking a bath or warm shower before bed can have several positive benefits to your sleep, not the least of which being a reduction in your core body temperature.

It may seem counterintuitive that soaking in hot water helps to cool you down, but when you get out of the tub the water begins to evaporate from your skin, cooling your core and cuing your circadian rhythm to do its thing. Baths also improve circulation, ease aches and pains, and help you relax and disconnect before bed.

If you decide to implement a bath or shower into your bedtime routine, go ahead and make it a real treat for yourself. Even just fifteen minutes of uninterrupted relaxation time can have major benefits. Light a calming candle or turn on soothing music, allow yourself to let go of any stressful thoughts or to dos and just breathe. We recommend bathing about one to two hours before bed so that your body has enough time to fully cool down and reap all the cleansing rewards of your pre-slumber soak.

2) Stretch

Practicing some simple yoga stretches before bed can also help sooth your mind and body before bed. In fact, exercising regularly has been seen to have major benefits on sleep quality. Even if you are someone who abhors spending time in the gym or for whom running is a form of torture, you can get in touch with your body and improve your sleep with just a few gentle stretches or a basic yoga practice before bed.

Getting your body moving releases endorphins and enhances mental clarity. If you plan on participating in a workout where you break a bit more of a sweat, we recommend scheduling that earlier in the day so your body isn’t too warm or wired before bed. Stretching and breathing exercises, however, have the same positive benefits and can be done right before bed as they help to relax your mind and body.

Not only does yoga loosen up your muscles and help to relieve pain, it also encourages mindfulness and developing a trust in one’s own body. After a cancer diagnosis, it can be difficult to have faith in your body’s ability to keep you healthy. When you practice yoga, however, the process allows you to see your strength and flexibility improve over time. You will be amazed by what your body is able to do!

Getting in touch with your mind and body through a yoga practice or stretching routine has also been seen to have positive spiritual benefits for practitioners. No matter what your spiritual discipline is, taking time out of your day to clear your mind and ground your body can be enlightening and spiritually encouraging. Use the time that you are stretching to engage in prayer, meditation, or simply focus on controlling your breathing.

3) Keep A Journal 

Do you find that as soon as your head hits your pillow it begins swirling with all of your unfinished tasks and worries? You are not alone! Writing in a journal each night before bed can help to ease your mind and stave off stress and anxiety that commonly keeps you up at night.

What you decide to write is up to you. You can jot down a recount of what you did throughout the day, or make a plan for what you intend on doing the following day. Perhaps you have a mantra of aspiration phrase that encourages you? Try writing this down each night or compose a list of things that you are grateful for or proud of from each day. If you are struggling with day time fatigue, using your journal as a place to record your daily fatigue level (on a scale of 1-10) and the activities that you participated in throughout the day can be useful for figuring out your fatigue triggers and working to manage your energy efficiently.

Ultimately, having a place to clear your head and process your thoughts is a great addition to any bedtime routine. It does not have to take a whole lot of time, nor does it have to follow any sort of structure. This journal should be for you and you alone, so don’t overthink it, just get to jotting (and then get to snoozing!)

Wrapping Up 

Ultimately, changing your routine can create a sense of regularity and control, helping to ease your mind and body into sleep. Routine changes, however, are no substitute for medical care and a strong support system. So, if you are having trouble sleeping, do not hesitate to mention it to your doctor as this might be a symptom of a larger problem.