Tag Archive for: cancer diagnosis

Dr. Sikander Ailawadhi: Why Is It Important for You to Empower Patients?

Dr. Sikander Ailawadhi: Why Is It Important for You to Empower Patients? from Patient Empowerment Network on Vimeo.

How can healthcare providers empower patients? Expert Dr. Sikander Ailawadhi from the Mayo Clinic explains the mindset and approach he takes to patient empowerment and questions that he asks patients to put them in better control of their care.

See More from Empowering Providers to Empower Patients (EPEP)

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Charise Gleason: Why Is It Important for You to Empower Patients?

Dr. Craig Cole: Why Is It Important for You to Empower Patients?

Dr. Craig Cole: Why Is It Important for You to Empower Patients?

Transcript:

Dr. Sikander Ailawadhi: 

Patient empowerment is an extremely important aspect of how we deliver healthcare and how our patients consume healthcare. Let’s take a step back and think about it this way. A patient was diagnosed with cancer. This is not what they were expecting. This is not what their families, their loved ones, anybody was expecting. It throws a wrench in their life plans, and suddenly they have lost control, not over their health, in a lot of cases, even over their lives, over their families, their jobs, everything. What can we do to empower our patients and make them feel in control?

A statement that is very frequently used by a lot of people, frankly, is, well, the patients need to be their own advocates. Yeah, but I really strongly feel if a patient does not even know what to ask, how are they going to ask the right question? How do they know what is the right question to even put up to the clinician? So in my opinion, the biggest thing, in fact, in some ways, even the least thing I can do to empower my patients is to educate them, is to make them aware about the disease, about the treatment, both the benefits and the side effects, about long-term outcomes.

I do offer to my patients, for example, “Are you interested in knowing about prognosis?” Some patients don’t want to hear about it, but some were afraid to ask. If they know what they have to expect, they are able to plan better. They are able to get in control better. So for me, the number one way of empowering the patient is spending time with them, educating them, making them aware about their disease, about their treatment, and about the long-term expectations of living their life after the cancer diagnosis.

Tools for Living with Cancer and COVID-19

Tools for Living with Cancer and COVID-19 from Patient Empowerment Network on Vimeo

Breast Cancer Network Manager Mary Leer highlights the importance of a previous interview with Dr. Shaji Kumar focused on COVID-19 and cancer. In the original interview, Empowered Patient and Care Partner Ask the Expert: Addressing COVID-19 Concerns, vaccine concerns are also addressed and key factors are given for cancer patients, survivors, and care partners.  

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Transcript:

Mary Leer:

Hello, my name is Mary Leer, and I am the Patient Empowerment Network’s [PEN’s] Network Manager for the Breast Cancer Network.  

 As PEN’s Breast Cancer Network Manager, I was proud to sit down with noted Mayo Clinic expert, Dr. Shaji Kumar. The interview helped me think deeply about my own experience as a cancer survivor and how it relates to my experience living through the pandemic that is still around us all. As cancer patients, we’ve had to live with multiple uncertainties and make decisions that can quite literally and figuratively be painful. We’ve had to make decisions about cancer treatment with our medical team, and we’ve had to deal with the fact that it is in our own best interest to at times take a path that we do not want to take in the name of healing ourselves and living a healthier life. We have learned to live with options and making choices with outcomes that are not certain, our experience and roles as survivors and as caregivers can make it hard sometimes difficult to understand the decisions of others who are hesitant or resistant to getting a vaccine. So I listened and learned from Dr. Kumar discussion about the importance of getting vaccinated to reach a significant percentage of our population. He shows compassion for those whose fear of the pandemic has led them to a decision to turn away from getting vaccinated, perhaps out of fear, distrust of medicine and anger about government impinging on personal rights, or perhaps, of course, their own personal health journey, please implore others to listen to the interviews Jeff and I did with Dr. Kumar. 

Dr. Kumar gave us very clear advice.  He answers many of the questions about COVID-19 that cancer patients, and our community have been asking and frankly worrying about. As you listen to the interviews on PEN’s website, you will hear his voice of reason, make it clear how critical it is for cancer patients, indeed all of us to get vaccinated for the sake of our own and for others’ health. As he states there are uncertainties about aspects of vaccination, such as the strength and length of one’s individual protective immune response, but the bottom line is that cancer patients especially need to be vaccinated to protect their health, even if one is well post-treatment. If still in cancer treatment or if one has had the COVID-19 illness, he told us to discuss the optimum time to get vaccinated with your medical team. He truly gave a clear message that there is solid evidence for the efficacy, safety of approved covid vaccines. Listen carefully and share Dr. Kumar’s interview responses with your cancer community and with your family. His answers address lingering questions my family and I had about COVID and cancer, the bottom line, these interviews with Dr. Kumar are once again, a way of giving us the tools to compassionately help ourselves and others through this COVID-19 health crisis. 

How Stress Can Play a Role at the Time of a Cancer Diagnosis

How Stress Can Play a Role at the Time of a Cancer Diagnosis from Patient Empowerment Network on Vimeo.

MPN Network Managers Jeff and Summer share how they’ve overcome and continue to overcome the stresses that follow a cancer diagnosis. 

Although, surprised at the time of her diagnosis Summer remained positive. As a care partner at the time of diagnosis, Jeff was fearful because he knew very little about myelofibrosis. To counteract this stress, he armored hisself with knowledge from various resources. Both Jeff and Summer use their hobbies as an outlet whether it’s nature photography or teaching improv classes to further relieve stress. 

Want to connect with Jeff and Summer? Email them at question@powerfulpatient.org or text EMPOWER to (833)213-6657. 

Empowered Patient and Care Partner Ask the Expert: Addressing COVID-19 Concerns

Empowered Patient and Care Partner Ask the Expert: Addressing COVID-19 Concerns from Patient Empowerment Network on Vimeo.

With COVID-19 infection and vaccine concerns, what are the key points for cancer patients and care partners to know? Expert Dr. Shaji Kumar from Mayo Clinic shares valuable information about protective measures against COVID-19 infection, vaccine side effects and effectiveness, working toward herd immunity, and cancer research benefits that have emerged from the pandemic. 

See More From the Best Care No Matter Where You Live Program

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Transcript:

Mary Leer:

My name is Mary Leer. I’m the Breast Cancer Network Manager.

Jeff Bushnell:

And I’m Jeff Bushnell, the MPN Network Manager at the Patient Empowerment Network. I’m a caregiver.

Dr. Shaji Kumar: I

’m Shaji Kumar, a hematologist at Mayo Clinic.

Mary Leer:

Jeff and I are proud to be part of a strong team of compassionate volunteers, helping health communities adapt to the realities of living with a serious illness, living with cancer during a pandemic certainly presents another layer of challenges. So, Jeff and I will drill down to ask the important questions from the community. For this production, Empowered Patient and Care Partner Ask the Expert, we are very lucky to be joined by noted expert, Dr. Shaji Kumar, a consultant in the division of hematology at Mayo Clinic. Thank you for taking the time to join us, Dr. Kumar.

Dr. Shaji Kumar:

Thank you for having me, Mary.

Mary Leer:

Let’s start with the top of mind questions for so many of us right now, what should every patient and care partner facing a cancer diagnosis know during the pandemic?

Dr. Shaji Kumar:

I think it’s a challenging time for everyone, and it’s obviously more challenging for patients dealing with cancer at the same time, thankfully, we have a vaccine at hand that will certainly make the situation a lot better, but I think from a cancer standpoint, I think what we need to keep in mind all the precautions we talk about in terms  of social distancing, masking, hand washing and all those measures apply equally to everyone, even more so to patients with cancer. And the reason why we say that it’s even more important for several reasons, one, and we continue to learn more about the pandemic and its impact on cancer, one thing that has become clear is that patients with underlying conditions including cancer are to other folks were more affected by the infection, more likely to have more severe interactions and poorer outcomes. Now, patients with cancer appear to be at a higher risk of getting the infection and then they get the infection having a more serious disease. Now, it’s hard to know how much of this is also related to the fact that patients with cancer often have to go into the hospital or the clinic, and hence are more likely to get exposed to the infection than someone who is able to just stay at home.

So that’s one thing. And second, we know that the ongoing treatment for cancer definitely suppresses the immune system, and hence places people at a higher risk of the infection itself. Now, even patients who have their past history of cancer, this appears to be some increased risk, even though this is a little bit, unclear how much more it impacts those individuals. But I think the bottom line is keep the awareness that you might be at a higher risk of getting the infection, more serious infection, and the need to take those precautionary measures in a more strict fashion, and getting the vaccination when you can get it is all things that one needs to keep in mind.

Jeff Bushnell:

Well, that’s wonderful, Dr. Kumar, you mentioned the vaccinations, I am a strong proponent of that, I happen to have been involved in the Moderna vaccine trial, which is and still enrolled, they’re doing the follow-up. I guess they’re checking the last time I was in last week, they took 8 vials of blood, I think they’re checking to see whether I have the antibodies and how long it will last, but I was very happy with the way it was conducted, they were very forthcoming with information.

It was very interesting. And out here in San Diego, where I am, we have done pretty well as a county in vaccinating people and Summer got the vaccine as well with myelofibrosis and she feels a lot better. But for cancer patients who have tested positive for COVID, are there notable consistencies amongst that group of people, and have we learned anything from those patients yet about maybe their chances of getting it more, or their reaction to it? That kind of thing.

Dr. Shaji Kumar:

We know that there’s a wide spectrum of reaction to the vaccine. The majority of the people would not notice any symptoms related to that except for some pain at the injection site.  Not there are some folks, number of people who might have more or just myalgia, muscle pains, just feeling fatigue, some low-grade fevers, just feeling blah for 24-48 hours, and it seems to be not too uncommon. The reactions to the vaccine in terms of the side effects or the symptoms, there doesn’t appear to be much of a difference between cancer patients and normal individuals. Now, in terms of the efficacy of vaccination, you just mentioned Jeff, about you being checked for the antibodies, obviously, that is something that we hope will happen to all individuals who get the vaccine, but we know that is not going to be the case, there’s going to be a wide variation in terms of how strong an immune response one might develop against vaccines. Now We know from, not necessarily the COVID vaccine, but the vaccinations that have been used in the past, whether it be flu vaccines or pneumococcal vaccines, that we all get patients with cancer or patients going through treatment for cancer that can suppress the immune system, tend to have a lower response. But again, that varies quite widely from patient to patient now, there are some vaccines where we can clearly look at the antibody response and say, “Oh, this is not adequate, and we need to maybe give an extra shot.”

We just don’t have that information for COVID vaccines yet. So the way I would look at it is, even though the response to the back in a given person might be less than what we eventually would identify to be optimal, it’s likely to be better than not having to see the vaccine, so I would encourage obviously, everybody to get the vaccine. Now, what about someone who has already had an infection, what would be the response? Should we vaccinate those people? We certainly should. Again, we don’t know the immunity from a natural infection, how long would that last? That is still something that is unknown, and the vaccination dose is likely to make the responses more relevant and more durable, so I would recommend the vaccines for everyone. We don’t think one vaccine is any different from another in terms of your underlying cancer or lack thereof. So in terms of assessing for the antibodies, there is no clear guideline in terms of what one should anticipate from  the vaccine, so there is really no way to say, check the antibody, and they can go ahead and get one more dose or you’re fully vaccinated. So I think the bottom line is, get the vaccine, you don’t need to necessarily test for a response, and then we continue with the usual measures for prevention.

Jeff Bushnell:

And so what would you tell the… I guess that’s pretty much the answer to the next question I had. What would you tell the patients who are in active treatment and who planned to get the vaccine just continue as normal after they get it, with all the appropriate precautions?

Dr. Shaji Kumar:

Yeah, no, I think there’s one other important aspect, Jeff, to that question you just raised, which is, what is the right timing to get vaccinated, the vaccine, and that is a question that often comes up. So patients who are not getting active treatment, there is obviously no concern whenever the name comes up, go ahead and get the vaccine. And the second is what if someone is actually getting active treatment for their cancer, is there any role in terms of trying to find the vaccination, with respect to the doses of the medications and for most of the treatment we are using for cancer, there are no clear guidelines in terms of the when they can get the vaccine, that having several guidelines that have been put out by different organizations. The bottom line is, if there is an ability to space out or give sometime between the vaccine and the dose of the medication, do that, don’t modify your treatments, just so that you can get the cross at a particular time. The only place where we would recommend specific guidelines within the context of somebody who may have had a bone marrow transplant or had some other kind of cellular therapies, in those contexts, we often recommend that you wait for a couple of months after the stem cell transplant, before we get the vaccines. But for all the other treatments that we are getting right now, we want to just within the schedule of the treatment that’s already on going, try and get the vaccine in between two doses.

Mary Leer:

For those who have been vaccinated and are living with cancer, you spoke to that in great depth, but I’m also wondering about people that are perhaps in post-treatment and let’s look at social distancing measures or other restrictions, are those different for patients versus the general population?

Dr. Shaji Kumar:

No, I think the proportions are the same, I think the social distancing and the masking should continue to be observed the same way, and I think the only other word of caution I think may be particularly relevant for the cancer patients would be, again, trying to avoid again those kind of being outdoors and larger groups of people, even if when you maintain the social distancing, try and not do that. The outdoors are probably a little better than smaller indoor gatherings, and it’s mostly the common sense proportions, and I think the cancer patients are probably more tuned to this because they have been following some of those things even before the COVID came on and post-vaccination, I would recommend that these steps don’t change at all, partly because we gain for a given person, we don’t know how robust the immune response that those patients have after the vaccination and the lack of good testing to say that, okay, now you’re fully vaccinated, your response is great, you don’t need to worry about getting infected.

Mary Leer:

Wow, thank you so much. That’s so helpful. I’m going to shift to vaccine hesitancy. This is an important topic for many. Drug development takes years, sometimes decades. Can you speak to those who might be hesitant about the speed of vaccine development around COVID. I’ve heard this often from other people saying, “Well, they develop this so quickly, how can we trust it?”

Dr. Shaji Kumar:

Yeah, no, I think those concerns are quite valid, I think vaccines have always been a very controversial topic and not just COVID vaccination but even for childhood vaccinations. There have been long-standing concerns that some of those vaccinations may be responsible for some of the issues that we see in the children and even in the late adulthood. I think what we really want to get across is, again, taking that question apart, and there are multiple different aspects to it, one is the whole concept of how we created the vaccine so quickly, we kept telling everyone from the time that it started that it takes five to 10 years to develop a good vaccine, and now we have something in a year, so obviously that raises concerns amongst people. I think it’s just a testament to how far technology has come. In the past, we had to isolate the protein and use that protein to develop the immune response, and what has been really unique about the COVID situation has been the Pfizer vaccine and the Moderna vaccine, both of which uses a new technology called the mRNA-based technology. And this is something that has been developed over the past decade to decade-and-a-half, and I would say this is a platform that was perfect, just waiting for the right opportunity to come along.

And the COVID situation really presented that. And even though it was the speed with which this was developed, is just because the technology has come along so much and we can actually do that, and the second is how fast the clinical trials have been done, and I think that speaks to, again, the infrastructure that they have been developed over the years to rapidly develop and implement a clinical trial. So the clinical trials, both Pfizer and Moderna trials had 40 to 50,000 people enrolled in a quick phase and the community transmission that was happening at a very high rate. We could get these trials done in a very rapid manner, so the patients or the people who enrolled in this clinical trial the fact that they were not getting infected could be determined in a much, much faster fashion than what you would have done in the past with any of the other vaccines. So I think the technology is robust. The [COVID]  trials are very well-conducted and the end point in terms of efficacy has been very well-determined or very accurately determined.  And given the size of these trials and the number of people who have been a goal, I think we can feel fairly confident that the risk associated with this vaccine is pretty low, so you can argue that one of the risk of a particular side effect is only 1 in 80,000. So maybe to the 40,000 people enroll in the trial, they may not have adequate numbers of that and that was certainly a concern when they started vaccinating. And we just know a couple of days ago, there was a publication that looked at almost like 63 million vaccination doses that have been given, and overall the risk of vaccine related side effects have been very, very minimal.

So I think that should also boost our confidence.

But on the other hand, we all heard about what would happen with some of those vaccines and the blood clots, and I think that even though…yes, it is, as it is a risk. It is a very, very small risk. And the fact that you were able to identify them right away again, I think tells us that should there be rare side effects, you’re going to find it, and we are going to figure out the mechanics of why those side effects happen. And we’re going to figure out how to avoid those things.

So, I think the information flow is so fast and all the data related to vaccines and the side effects are being captured in a real-time fashion that we would be… You’d immediately be of avail of side effects should that happen.

Mary Leer:

Wow, that’s so reassuring. Thank you.

Jeff Bushnell:

Another question kind of along the same lines, doctor is the last few days, especially, it’s Vaccine hesitancy has really become sort of the issue to the potential of achieving herd immunity, and how can everybody in the medical community, you guys are facing those stuff in a different way, but the average person, how can we help overcome hesitancy and increase the people’s trust in the vaccine, and also increase the equitable distribution amongst all populations? Some populations are hesitant to take it, others have distance problems for being able to get it. What can we do to sort of push ourselves over the hill to get to that herd immunity?

Dr. Shaji Kumar:

Yeah, no, You bring up a very important point, and I hope we are in a much better place than many parts of the world right now because we have one of the few countries where a significant proportion of the people have been vaccinated, but we are not quite at the point where we can claim herd immunity, I think we still need to continue to pursue this, and I think the ideal goal is to get everyone who’s eligible to get a vaccine vaccinated. Now, you bring up some of the very important points, because even though vaccine hesitancy is a real problem, the underlying reason behind this is manifold, and the only way to tackle that is we have a multi-front approach that will take into account what is the reason behind it.

So for the people where it’s hard to get to populations which can live in far from the areas, it may be more the ability to use those vaccines, which does need the complicated storage, for example, the J&J vaccine. You only need one dose. It’s easy to store. So that may be one of the approaches to be taken. And people who believe that this is a vaccine is going to create side effects, or it’s part of some grand scheme to introduce a variety of things. I think it’s a person of education, and I think they really need to tell them what can happen with. Not really just to them, but the fact that if you continue to allow these infections to proceed on stuff, there are going to be increasing numbers of mutations, and that in turn is going to make the pandemic much more difficult to control in the long run. So it’s totally an individual benefit, but it’s on to the society’s benefit to have everyone be vaccinated. And then definitely, I think knowing that should anything unto it happen, there’s going to be medical care that’s going to be available to these individuals, and I think that’s also an important point, so who are near and dear to them is going to be the key thing.

Mary Leer:

Here’s a question many cancer patients are unclear about if antibodies are present or if I have tested positive before, there’s a wondering, “Should I still get the vaccine?”

Dr. Shaji Kumar:

Yeah, I know the recommendation right now is to go ahead and get the vaccine, partly because we don’t know the natural immunity from the infection, how long does it last. So it seems like the antibodies can start to wane off the infection. And again, we don’t have a lot of data on it, but it looks 3 to 6 months, it might start waning at least to the level that they can detect. Now, whether that is sufficient or even the undetectable levels is protective against a future infection, we don’t know. There have been some reports of people getting a second infection even though they have been infected before again, scattered reports, we don’t know how widespread that phenomenon is going to be, so given all these, I think the current recommendation would be to go ahead and get vaccinated. We generally tell people to wait for two to three months after the infection to go ahead with the vaccination.

Mary Leer:

Alright, thank you

Jeff Bushnell:

Should people… Is the idea of pre-screening, especially for cancer patients, maybe who may be at risk, I guess, to see whether they have antibodies or whatever, be an effective thing to decide which vaccine they should get? or I know, as I say, I was in the trial and they were very forthcoming to the participants with what the numbers were, and I was flabbergasted at how effective the vaccine was, it was just amazing to me, and that kind of information that I guess is not available publicly maybe it should be. Does it help to decide which vaccine you get? All I hear on the TV is get the first one you can. What are your thoughts on that?

Dr. Shaji Kumar:

Yeah, no, I completely agree with you. I think even those numbers may mean… You look at the Moderna and the Pfizer trials, and they said, now over 90 percent effective. Look at the AstraZeneca trials, you know, it’s like they recorded 70 to 80, 85 percent, and the J&J about 80 to 90 percent effective. Do these numbers mean much? It’s really hard to know, I think, partly because they have been tested in, again, different countries, different times, as the virus was continually changing its characteristics. So it does it mean… So one could argue that maybe the vaccines that were tested later on when this will be some of the mutants were already there might be more effective, but we don’t know.

I think at the end of the day, 80 versus 90 is not something we would decide a vaccine on. The fact that, yes, if something was only 10 percent effective versus 90 percent, it’s a probably different story. So based on the numbers we have seen, I would say whatever you can get to first, if you don’t want to get jabbed twice, maybe you go with something that goes, it’s only one dose, but that may be the only distinguishing factor here, but nevertheless, I think we have to just get the vaccination, the first vaccine that we can get our hands on.

Mary Leer:

So let’s hope there is some good that comes from the bad. Are there any noticeable trends born out of the pandemic that will be or could be a benefit to the future of cancer care or research?

Dr. Shaji Kumar:

Mary, That’s a very important question, and I think we always learn from adversity, and I think this is going to be no different. I think, especially when the pandemic hit back in the spring of last year, we all had to think fast on our feet to figure out how best to continue to tell about the best care for the cancer patients without compromising the care in any way. And we knew that bringing the patients back into the clinic at the same rate we did before the pandemic would expose them to significant risk for infection, so how do we continue with treatment? There have been very different things people have tried…one of them is to try and get the medications to patients at home. If they are on IV medications, they can be changed to something that’s comparable that can be given by mouth. We already did that for some patients. For some patients who used to come to the clinic very often, so we figure out is there a way for them to get some of those testing done in a clinic much closer to home, so they can avoid the travel, they can avoid being in a bigger city, they can avoid being in a bigger institution, again, reducing the risk of exposure, and then you look at those numbers and then decide on the next course of treatment. We converted many of the clinic visits to video visits. Nothing is as good as having the patient right in front of you, but this is the best we could do under the circumstances.

And I think that helped. So I think the clinical trials was a big problem because in many of those trials were done in a very rigid fashion with very little variability allowed within the protocols. And everybody loosened from the clinical trial sponsors, the pharmaceutical companies, the institutional review board, the investigators to try and build flexibility into those clinical trial structures to allow patients to continue to be on those trials, many of which are important and both helping. So what does that mean for the future? I think the video visits are here to stay, I think we will continue to utilize that and bring patients back to the clinic only when it’s absolutely needed. I think the clinical trials will have in-built flexibility so that patients can enroll on clinical trials remotely, they can potentially be given some of those medications at home, maybe it would be something where we would check into the patients on a regular basis to make sure things are proceeding in the right way. I think there are increasingly technologies that will allow the patients to communicate in real time with the care team and also provide many of the data that we need through iPads or iPhones, Apple watches, whatever we end up using.

So that is that I think that technology will rapidly take off in the next few years, I think. So I think a lot of the care of the patients with cancer in general, and particularly cancer patients, I think is going to look very different five years from now, because of all these things that we have always thought of and we thought, “Yeah it will take time to implement, it’s difficult.” Now we figure it out in a year. We can do a lot of those things.

Mary Leer:

Yeah, thank you.

Jeff Bushnell:

For the final question, you’ve given tremendous information here, Dr. Kumar w What’s the final takeaway for the average cancer patient and caregiver, how to get through this? What’s your bottom line for us all?

Dr. Shaji Kumar:

Bottomline is, I think Your cancer treatment comes first, let’s not compromise on it, let us do it as safe as we can by observing all the instructions in terms of social distancing, masking, avoiding gatherings, getting vaccinated, and make sure you keep connected with your care team. You don’t have to be in the clinic to do that. There’s a variety of different tools, I think every hospital has options to either through their medical records to message their care team, or set up video visits and so forth.

So we want to be in a state where it was before the pandemic in terms of your communications, but use the technology, so we can decrease the risk of exposure without compromising the quality of care.

Mary Leer:

Alright, well, thank you so much, Dr. Kumar, that you have just given us such valuable information, and I want to thank Jeff as well, and the Patient Empowerment Network for putting this together.

Jeff Bushnell:

Thank you, Dr. Kumar, appreciate it.

Dr. Kumar:

Thank you, Jeff.

Claiming the Number One Spot

Assimilation can sometimes take years to complete. Or, it can be a slow imperceptible change. It can happen and you may not be aware until after some time has passed. For others, assimilation can be a brutal quick mind-numbing takeover. What am I speaking of? It’s the mental and emotional takeover of being seen as a person with a name to a patient with a date of birth, social security number, and insurance card.

From the initial time you get your cancer diagnosis, you’re thrust into a complex healthcare system and suddenly you find yourself trying to maintain and keep your identity as a mother, father, sister, brother, son, or daughter, husband or wife. Soon, you’re running from doctor appointment to doctor appointment. Your sense of choice and control over your time and understanding your body is now unrecognizable to yourself. Eventually, you’re a patient. It’s scary how quickly your mindset changes and you find yourself feeling more like a victim. Understandable when you’re over your head all consumed in perhaps the battle for your life. Instead of assimilating, perhaps transitioning is a better term. It is difficult, but necessary, however, not to the degree you may think. Just because you are now ill, it doesn’t mean you have to just sit back and let the doctor make all the decisions and you just follow. You have to be an active participant in your care, every day, all the time! Traditionally we have always felt that doctors know everything and they will always do what’s in our best interest, all of the time. Not so! I had to remember when my husband was in treatment for myeloma, no two patients are the same, and no one doctor knows everything. There’s a reason it’s called “the practice of medicine.” It’s time to look at yourself not as a patient but as a person with a disease. You can still have control over your life and steer the ship.

This is a short fact sheet on self-empowerment. Refer to it over and over to remind yourself how to manage your treatment plan with your healthcare team. And, use it to expand your treatment team.

First:

Anytime you are in your doctor’s office, you are the most important person in the room. It’s all about you. Make sure the focus is on you and that you are giving your treatment team everything about your health, even minor changes as they may be important. Ask about the treatment, how it has affected other people and how it can affect you. What are all of your options? And, also equally important, what is this going to cost?

Second:

Ask over and over until you understand. Whether it’s about your health or the cost of your treatment plan, you need to be in the driver’s seat. You need to be able to plan not just for next week but for the rest of your life. Don’t be afraid to ask and get answers. Be respectful of your doctor’s time. Perhaps call in and make your doctor aware of your need for a few extra minutes to go over your questions or concerns or ask if you can send these questions ahead of your appointment so they can be prepared. Be aware that the financial questions may be sent to a social worker or someone else. On your request ask that they identify that person. That way you know who to go to for that information in the future. Or, request a few  additional minutes to your appointment to have your concerns addressed. The point is, make sure you ask about all the concerns you may have regarding your treatment and its costs.

If you have problems asking questions there are people who can help you who can advocate on your behalf when you can’t. In addition to discovering or acquiring the skills you need to become an effective self-advocate, you need to be empowered to believe that your voice can and should be heard. Unfortunately, many older people, my mother was one of those, who are less educated or come from lower socioeconomic groups—those who are timid or shy by nature—may find it difficult to question someone they perceive as authority figures who control their destiny. They may fear asking “dumb” questions, or may not even know the questions to ask, or alienating their doctors by questioning them. And, trust is critical to any good doctor-patient relationship. Patients want to believe in their doctors. If you find yourself not getting the attention you need or answers to your questions, or you’re getting push back from the doctor, it may be time to look for another doctor. It won’t be easy, but not doing so can have a huge negative impact on the quality of your care. This is advocating for yourself and it’s so empowering!

Third:

The more you know about your cancer, the more you can participate in your treatment. There are many ways to research your illness. There are cancer-specific non-profits that offer a wealth of information and cancer-specific support programs.  You may have access to a medical library or don’t forget the wealth of information you can get from creditable websites online.

One of the most difficult areas of advocating for yourself may be regarding understanding the cost of your care and sharing with the doctor before it’s too late how you don’t know how or if you can afford the care that is necessary. Financial toxicity adds so much stress which interferes with your health outcomes. And, unfortunately, the COVID-19 pandemic has only made things worse. The sooner you bring this subject up with your healthcare team the better off you are going to be. Our society, unfortunately, judges people on how big their house is, what kind of car they drive, and whose name is on clothing labels. Look around, you can have all the money in the world, but cancer/illness is one of the great equalizers. Your goal is to get the best care you can. There are many resources available to help you do that. From healthcare to financial assistance to empowerment guidance. Just ask!

Dealing With A Cancer Diagnosis During Your Pregnancy

Every year, nearly 3.7 million babies are born in the USA. While pregnancy and the subsequent birth of a baby is nothing short of a joyous occasion for countless women, there are many others who face various obstacles throughout their pregnancies. Apart from potentially contracting urinary tract infections, hypertension, and gestational diabetes, approximately one in every 1000 women will receive a cancer diagnosis during their pregnancy. Although the risk of being diagnosed with cancer during pregnancy is quite low, the thought of having to fight a potentially fatal disease while awaiting the birth of your baby can be devastating. Apart from placing your trust in your medical team, it is also vital to educate yourself as much about your condition as you can, and do everything in your power to keep you and your baby as healthy and comfortable as possible.

Ask Questions About Your Treatment

Although your medical team will undoubtedly discuss your treatment options with you, it is important that you ask as many questions as you need to fully understand how the treatment will be administered, as well as the benefits and risks associated with it. Some courses of treatment are safer to administer during pregnancy. Surgery is generally the safest treatment, as there is typically limited risk to the fetus. Chemotherapy can also be safely administered during the second and third trimesters. Various bodies of research have found that children who were exposed to chemotherapy while in the womb do not present more health challenges than children who weren’t. It is important to note that you will not be able to breastfeed if you are undergoing chemo, as it may be harmful to your baby.

Be Mindful of the Effects of Your Cancer on the Fetus

Despite in-depth research by some of the world’s top scientists and doctors, it is very hard to predict to what exact extent a cancer diagnosis will affect an unborn fetus. In most cases, cancer itself has no effect on the fetus. There is, however, a possibility that specific cancers such as leukemia and melanoma can spread from the mom to her unborn baby. Your oncologist will be able to provide greater insight into the possibility of this transmission occurring, and also what steps will be taken if it does occur. Once your baby is born they will immediately be checked for early signs of cancer to provide them with the best possible chance of full remission in case of a positive diagnosis.

Focus on Personal Comfort

Personal comfort becomes somewhat of a rare commodity during pregnancy, and especially in the final trimester. As your baby’s movements become stronger during the last few months of your pregnancy, you may also start feeling increasingly uncomfortable. In addition to any pain and discomfort associated with your cancer diagnosis, you may also experience backache, increased heat burn, and overall restlessness while lying down in bed. A warm bath and gentle massage may help to ease back pain, while avoiding certain foods and eating smaller portions can relieve heartburn considerably. Investing in a maternity pillow may be a saving grace if you are unable to comfortably lie down. As these pillows provide support in all the right places for pregnancy, it becomes increasingly easier to relax and drift off to sleep.

Reduce Your Stress Levels

A certain degree of stress is normal during any pregnancy. The excessive stress brought on by a cancer diagnosis can, however, be detrimental to your own health and that of your baby. According to Dr. Ann Borders from the Division of Maternal-Fetal Medicine at Evanston Hospital, severe, chronic stress during pregnancy may result in developmental concerns in babies. There are a number of things a pregnant cancer patient can do to reduce stress. This includes doing regular light exercise, engaging in meditation and other mindfulness practices, and spending time doing things you enjoy, such as reading a book or listening to music. If your stress and anxiety are getting the better of you, your medical team may recommend additional strategies to employ.

Manage Your Fatigue

The majority of pregnant women experience varying degrees of tiredness throughout their pregnancies. A cancer diagnosis can contribute to your tiredness in various ways. Apart from the increased fatigue you are undoubtedly experiencing wreaking havoc with your sleep, your cancer treatment can also leave you feeling increasingly lethargic. Rest as much as you can, and don’t be afraid to ask for help if you need it. Having someone assist you with shopping and preparing meals or offering to look after your children for a night can help you get the rest you need to replenish your energy levels. You may also benefit from a quality prenatal vitamin supplement, especially considering that up to 52% of women experience an iron deficiency during pregnancy.

Eat and Sleep Well

Following a nutrient-rich diet and getting enough sleep is pivotal to a healthy, enjoyable pregnancy. It becomes even more important when fighting cancer. According to the Sleep Foundation, sleep has the ability to help your body heal. It can also help ward off depression and decrease your risk for further medical concerns. Just as your body needs sleep to be healthy, it also requires nourishment. You can benefit both as a pregnant woman and a cancer patient from following a diet that is rich in nutrient-dense foods. Opt for fresh fruit and vegetables, lean protein, dairy, nuts, grains and legumes, and a variety of healthy fats. Steer clear of any processed foods, and limit your sugar intake as much as possible. Also, remember to stay well-hydrated at all times.

Being diagnosed with cancer during your pregnancy is something no one can ever adequately prepare for. Despite how devastating such a diagnosis may be, however, it is important to not only work closely with your medical team, but also make the necessary lifestyle changes that will help give you and your unborn baby the best chance at health and happiness.

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:

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.

Facing Forward: How to Move On After Cancer Treatment

When you go through something as stressful, traumatizing, and life-altering as cancer, you may come out on the other end of the tunnel feeling like you were just put through the spin cycle. There’s no “normal” way to respond to a cancer diagnosis, treatment, or remission prognosis, and you should never force yourself into taking on one specific emotion or perspective. You may feel angry, sad, scared, hopeful, or joyous, and all are perfectly acceptable responses to have.

Regardless of how the experience left you feeling, it’s important to work at moving on and processing it in a healthy way. Here are a few ways to help you do it.

Measure Your Mental Health

You’ve spent the last several months or years caring for your body to the point of exhaustion. Now it’s your brain’s turn. Depression, anxiety, post-traumatic stress, and cancer fears are quite common among survivors. In fact, between 18 and 20 percent of adult cancer survivors report symptoms of anxiety[1], while almost 80 percent of survivors experience some level of fear of recurrence. It’s vital that cancer survivors and patients alike are constantly looking inward and taking daily measurements of mood and general well-being. If you experience any persistent, negative feelings, be sure to seek out advice from a licensed mental health professional.

Focus on Daily Self-Care

Because your daily life was thrown completely off track during treatment, it can be hard to settle back into a healthy routine when it’s all over. Implementing certain self-care practices into your day-to-day life can help you stay mindful and prevent you from slipping into prolonged states of anxiety or depression. It will help you immensely to pick up healthy self-care practices, such as yoga, meditation, or long evening baths. Integrating weekly or bi-weekly social time will also help quite a bit, especially if you’re spending time with people who share similar interests or experiences.

Work on Rebuilding Self-Confidence

Though we’re ever-grateful that they exist (and save thousands of lives each year), chemotherapy, surgery, and radiation take a massive toll on our bodies. They leave us looking and feeling burnt out and exhausted, often grinding the last little bit of self-confidence we have into a sad, lifeless pulp. Even if you’ve never been a particularly vain person, your life post-cancer is time to help you regain your self-worth at every turn, and it’s perfectly okay to spend some time making yourself feel beautiful both inside and out! Here are some great ways to do it:

Regrow a Full Head of Hair

If you lost your hair during chemotherapy, there are a few cutting-edge hair loss treatments to consider. Though they’ve only been cleared to treat hair loss due to androgenetic alopecia by the FDA, many people find that low-level laser therapy devices help hair to grow back [2] quicker and healthier after treatment. Luckily, while it takes a little bit of time, most cancer patients are able to fully grow back their hair.

Work on Getting Back to a Healthy Weight

Cancer patients know that the constant barrage of chemicals and harsh treatments can seriously mess with our weight. Weight loss is one of the most common symptoms of both cancer and treatment, with between 40 and 80 percent of patients reporting weight loss [3] and cachexia (wasting) from diagnosis to advanced treatment. Working with your doctor or a dietician will help you return to a healthy weight in a safe way. He or she will design a diet and, if needed, prescribe medication to help you manage your weight.

Treat Your Skin and Nails

Hair isn’t the only physical feature that takes a beating during the treatment process. Chemotherapy and radiation can leave skin red, dry, itchy, or discolored, and it tends to leave nails cracked, infected, or yellow. A full-blown spa day is in order after you’ve recovered from your final treatment. Make sure to also see a dermatologist, especially if you’ve seen any serious changes in your skin since you were diagnosed. 

Connect with Other Survivors

Building up a strong social network is vital to staying happy and positive post-cancer, and nobody will help you get there faster than fellow survivors. Like anything on this list, make sure you ease into it and wait until you’re fully ready. Having to recount your experience before you’ve fully processed it can worsen symptoms of post-traumatic stress, depression, and anxiety. But, after a period of time, it will help you feel stronger and more secure when you have a group of friends or family members to share your experience with. You can use the American Cancer Society’s resources database [4] to find specific support groups in your area.

Get Enough Exercise

Medical experts consistently say that exercise is among the most important components of a healthy life during and after cancer. One of the biggest reasons for this is that, though it sounds counterintuitive, getting physical can help reduce the ever-present cancer fatigue while also helping you get better sleep, reducing symptoms of depression and anxiety, and helping you build back muscle strength that may have deteriorated during treatment. Just be sure to follow all medical advice as you ease back into exercise, especially if you’ve recently had surgery.

Volunteer for a Research Foundation

If you’re experiencing any feelings of sadness, anger, or hopelessness, it can really help you to get involved in cancer-specific organizations that donate to research efforts. Finding a cure or at least more viable treatment options for this devastating disease is certainly on the horizon, but getting there takes a lot of money, resources, and effort. Getting involved can help you connect with other survivors and hopeful people, which will lead you into a deeper state of happiness and optimism.

Let Yourself Experience Loss, Pain, and Joy

Again, there’s no “correct” way to experience cancer, no matter if you’ve just been diagnosed or have just finished your final round of treatment. The most important thing you can do is to constantly take stock of your feelings, being careful not to suppress them, and do everything you can to stay healthy both mentally and physically every step of the way.


References:

[1] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5915316/

[2] https://www.capillus.com/blog/a-skeptic%E2%80%99s-guide-to-understanding-how-a-laser-hair-cap-helps-regrow-hair/

[3] https://www.cancer.net/coping-with-cancer/physical-emotional-and-social-effects-cancer/managing-physical-side-effects/weight-loss

[4] https://www.cancer.org/treatment/support-programs-and-services/resource-search.html

Cancer Goes Beyond Your Cells and Into Yourself

Your dreams of starting a family, of buying a house, of having grandchildren or of retirement in Florida may all come to a halt when your doctor says, “I’m sorry, but the test results revealed that you have cancer.”

In that brief moment, the future that you’ve dreamed up for yourself suddenly seems less attainable. Even though medical advancements have greatly improved chances of remission and the possibility of a long, healthy life, that doesn’t mean that a cancer diagnosis won’t drastically change your life. The first side effects of a cancer diagnosis that people may think about are the physical ones like hair loss, nausea and fatigue. However, some of the biggest challenges a cancer patient may experience are mental challenges.

While no one is going to respond the same way to difficult news like a cancer diagnosis, a number of cancer patients may experience several common mental health disorders. According to The National Cancer Institute, approximately 25 percent of cancer survivors experience symptoms of depression and about 45 percent experience anxiety. Some patients may even exhibit symptoms that meet the criteria of post-traumatic stress disorder (PTSD). The most concerning statistic is that cancer survivors are twice as likely to commit suicide than the general population.

The physical pain, treatments and stressors involved with a diagnosis is enough to cause a mental health disorder to develop on its own, but a person still has to deal with everyday stresses relative to relationships, finances and family issues. Some tips to boost your mental well-being during such a trying time can include:

  • Eat a well-balanced diet. Make sure you are eating enough calories because that’s will maintain your energy level. Lean proteins and colorful fruits and vegetables are nutritious choices that can help boost your strength and attitude.
  • Go outside. Going outdoors and getting fresh air can help clear your mind of negative thoughts associated with your illness.
  • Make memories. You shouldn’t let your cancer diagnosis keep you from living your life and enjoying your relationships.
  • Talk about it. Talking about your feelings can often make you feel better, it can be especially beneficial to talk to other cancer patients so you have someone to relate to and possibly offer a new perspective.
  • Grieve losses. As your illness and treatment progresses, you may face a number of obstacles like losing your independence or your ability to maintain your routine and complete simple tasks like grocery shopping or doing laundry. You should take time to grieve these personal losses before you try to move on.
  • Take your medications and supplements as directed. With your illness you may often experience chronic pain, it’s important to take your pain medication as directed so you don’t increase the risk of developing a substance use disorder. You should also discuss any changes you want to make regarding medications or supplements with your care team.
  • Get financial counseling. By discussing your extra expenses with an experienced financial counselor you can alleviate some of your anxiety.
  • Maintain an active social life. It’s important to have a strong support network because it helps you get through treatment physically and mentally.

Cancer can take a toll on your body but it can also be hard on your mind as well. If you or someone you know is struggling with a mental health or substance use disorder, recovery is possible. Call and speak with a representative at The Recovery Village to find out more about treatment options. The call is free, confidential, and there is no obligation to enroll.