Why You Should Speak Up About Your Prostate Cancer Care
Why You Should Speak Up About Your Prostate Cancer Care from Patient Empowerment Network on Vimeo.
What are the benefits of prostate cancer patients speaking up about their care? Linda Mathew discusses the impact of patients taking an active role in their care.
Linda Mathew is a Senior Clinical Social Worker at Memorial Sloan Kettering Cancer Center. Learn more here.
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Transcript:
Linda Mathew:
Our medical team is really open about having discussions. So, 1). Our team is not blind to knowing that our patients may want a second opinion just to validate “Hey, is this – do I have all of the information laid out in front of me?”, and we always say it’s like – it’s always good to have that second opinion just to say, “Ah, what’s been told to me is correct, and it goes in line with what I’m reading on the different websites for these places that I’m going to for possible treatment.”
I always tell our patients also that you are your best advocate, so you know what your needs are, and if it means that you need more information before you make a final decision, then do it.
So, if it means talking to other people or going for a second opinion, then go ahead and do that, but I also tell our patients if you’re scared about asking a question, if you’re not – that’s a huge issue. If you’re scared to ask a question to your medical team, that means that, in itself, says, “Hey, is this the right fit?” So, I always encourage our patients, “Our team knows that you want to ask a question. Just go ahead and ask it. You’re not going to embarrass them; you’re not going to embarrass yourself. That’s what your physician and the nurse are there for.”
I think the one thing I would want to stress is that you, the patient, knows themselves. They know what their needs are more so than anybody else, so if that means that you feel like something is missing, then speak up, let us know, and if you don’t feel saying it to the nurse at the moment when you’re in a visit, you can always reach out to the social worker, who can help direct that question back to the team or help you find a way to ask that question either via the portal or an email to the medical team.
The Link Between Prostate Cancer and Inherited Mutations
The Link Between Prostate Cancer and Inherited Mutations from Patient Empowerment Network on Vimeo.
How can inherited genetic mutations affect the course of your disease? Dr. Sumit Subudhi explains the link between inherited mutations and prostate cancer and how these mutations affect disease progression in patients with prostate cancer.
Dr. Sumit Subudhi is a Medical Oncologist at The University of Texas MD Anderson Cancer Center.
See More From INSIST! Prostate Cancer
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Prostate Cancer Testing: What Tests Should You Advocate For? |
How Can You Access Personalized Prostate Cancer Treatment? Resource Guide |
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Transcript:
Katherine:
Dr. Subudhi, what is the link between inherited mutations and prostate cancer?
Dr. Subudhi:
Yeah, so in approximately 10% to 15% of patients with prostate cancer, they have an inheritable cause for their cancer. And so, this predisposes them to not just having prostate cancer, but potentially to other cancers, but also their family members.
In regards to the inheritable causes, the BRCA mutations – BRCA2 and BRCA1 – are very common. In fact, BRCA2 is more common than prostate cancer than BRCA1. In addition, there’s CHEK2 and ATM which are common inheritable mutations. And the other ones are the mismatch repair genes. Again, all these play an important role in repairing DNA. So, if you’re mutated in these genes, then your ability to repair DNA has been significantly diminished, and you’re more likely to gain more mutations.
Katherine:
How do these mutations affect disease progression?
Dr. Subudhi:
Yeah. So, what they can do is they can lead to mutations that make the cancer grow more. And there’s two ways to do it. You can have a mutation in what we call an oncogene, a gene that when it’s active, it’s going to just promote the cancer.
And then we have other genes called tumor suppressor genes. Their normal function is to prevent the cancer from growing. But if the tumor suppressor gene gets mutated so it’s no longer functional, then the cancer can then take off, because it’s no longer suppressed. So, those are how these genes can actually affect the prostate cancer.
If you have either an inheritable mutation in these genes or a somatic mutation, then there’s a chance that the PARP inhibitors could actually work for you. And the PARP inhibitors, they actually target cancers where there’s a defect in the DNA repair pathway.
Now, there’s one thing that I want to point out that a lot of people sort of are missing, and it’s not a subtle point. Not all inheritable mutations are made the same – or even somatic mutations. Meaning, what we’re learning is the PARP inhibitors seem to be more active with the “Braca,” or BRCA, mutations and the ATM mutations. Whereas, they’re less active with other types of DNA repair mutations. So, the point is not all mutations are made the same.
Prostate Cancer Testing: What Tests Should You Advocate For?
Prostate Cancer Testing: What Tests Should You Advocate For? from Patient Empowerment Network on Vimeo.
Genetic testing results can influence a prostate cancer patient’s treatment options and provide a more in-depth understanding into their disease. Dr. Sumit Subudhi reviews specific tests that prostate cancer patients should advocate for.
Dr. Sumit Subudhi is a Medical Oncologist at The University of Texas MD Anderson Cancer Center.
See More From INSIST! Prostate Cancer
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How Can You Access Personalized Prostate Cancer Treatment? Resource Guide |
Transcript:
Katherine:
What is the role of genetic testing in prostate cancer?
Dr. Subudhi:
That’s a great question, because this is something that wasn’t really available when I was training and understanding prostate cancer. But over the last few years, this has actually hit the mainstream, and it’s very important. And I see it having three roles. The first role is whether or not you can receive a certain type of targeted therapy or systemic therapy known as PARP inhibitors. So, if your genetic test is positive for certain markers – that I think we’ll cover later – then it can help give you more treatment options. The second is that generate testing can give you also risk of other cancers besides prostate cancer. For example, if you have the BRCA mutation, you’re 15% to 20% more likely to get breast cancer in men.
The third is that because the genetic testing is looking for inheritable mutations in your genes, that means you can pass it along to your kids. And this could have a tremendous impact on the screening strategies your children want to use in the future.
Katherine:
Would you mind going into that a little bit?
Dr. Subudhi:
Yeah.
Katherine:
For instance, my ex-husband had early prostate cancer. My 22-year-old son is worried now about also getting prostate cancer. His grandfather had prostate cancer.
Dr. Subudhi:
Yeah, great question. So, it’s not just about prostate cancer. So, prostate cancer, genetically, is linked to other cancers, as well.
So, in your case, you’re turning by your son. But if you have daughters or any female members in the family, consideration needs to be given to breast and ovarian cancer. And for both men and women, we also have to think about melanoma and pancreatic cancer. So, it’s not just prostate cancer that we’re thinking about when you have these genetic risks. And that’s very important, because each of these different cancers can have different screening modalities.
Katherine:
Oh. Well, how is the testing administered then?
Dr. Subudhi:
The testing is actually a blood test, so very simple.
Katherine:
Have there been any major advances in testing?
Dr. Subudhi:
Yeah, so when we’re talking about the inheritable testing, that’s just a simple blood test. And the reason why it can be done simply through the blood is because every cell in your body has it. So, when they collect the blood, they can just take any cell from there and do genetic analysis. And if that gene is mutated or missing, it will be captured.
Now, there’s another type of testing where they test your tumor tissue itself – so, your cancer tissue – whether you got it by biopsy or surgically removed. And so, that’s a different type of testing. That’s looking for what we call somatic mutations. These are not inherited mutations. These are mutations that are specific for your prostate cancer. Again, in contrast, the inheritable mutations are in every cell in your body – not just your prostate cancer cells, but every cell in your body. And the somatic, it’s just in your prostate tissue itself.
And so, sometimes with prostate cancer, it’s difficult to get the tissue. And what’s happened more recently – and to answer your question – is that the advances have been in what we call liquid biopsies, where they are able to use your blood and get the DNA from the tumors and actually genetically test the cancers that way. And so, that’s where the future is going.
Katherine:
Oh, that’s amazing. Are there specific tests that patients should ask their doctor for following the diagnosis?
Dr. Subudhi:
Yeah. So, if inpatients with high risk or metastatic prostate cancer, they should definitely be considering tests to see if they have mutations in what we call the DNA damage repair pathway or homologous recombination DNA pathway. And I know they’re fancy terms. What these genes are, they’re genes that help the body repair their DNA, and DNA is very important. And so, when there’s defects in the DNA repair pathway, then mutations occur. And these mutations can actually help the cancer grow.
Now what’s happening is that what they’re looking for in these genetic tests – whether it’s the inheritable test or the somatic mutation test that’s looking just within the tumor itself – they’re looking to see if there’s any DNA damage machinery that’s defective. And if it is, then you’re more likely to benefit from PARP inhibitors, which are oral drugs that specifically target the DNA repair pathway.
Prostate Cancer Staging: What Patients Should Know
Prostate Cancer Staging: What Patients Should Know from Patient Empowerment Network on Vimeo.
Dr. Sumit Subudhi provides a brief explanation of the stages of prostate cancer, the role of staging in determining a prostate cancer patient’s treatment path, and how patients can advocate for a precise diagnosis.
Dr. Sumit Subudhi is a Medical Oncologist at The University of Texas MD Anderson Cancer Center.
See More From INSIST! Prostate Cancer
Related Resources
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Prostate Cancer Testing: What Tests Should You Advocate For? |
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How Can You Access Personalized Prostate Cancer Treatment? Resource Guide |
Transcript:
Katherine:
Well, Dr. Subudhi, I’d like you to begin with a brief explanation of the stages of prostate cancer.
Dr. Subudhi:
We use stages, and there’s four – Stage I, II, III, and IV. And we use it to help us determine what treatments the patients need for their prostate cancer. In general, Stage I is localized prostate cancer, and it’s localized only to the prostate. And when we do a digital rectal exam, we cannot feel or palpate the prostate.
And the treatment for Stage I prostate cancer is either active surveillance, where you’re not trying to cure the cancer, you’re just actively watching it, and you’re using a PSA imaging studies, prostate biopsies, and digital rectal exams at regular intervals to follow the patients. But other patients with Stage I prostate cancer can actually get definitive treatment for curative intent with radiation therapy or surgery. Stage 2 prostate cancer is also localized, but on physical exam, we can actually palpate or feel the prostate cancer. And this also can receive definitive treatment for the prostate to cure it, and that, also, you can use radiation therapy and surgery.
Stage III is what I consider locally advance. This is where the prostate cancer is now starting to leave the prostate. And it still can be cured by radiation and surgery, but most likely needs a multidisciplinary approach, where you might need both or maybe even in addition of a systemic therapy. Stage IV is the last stage that I’ll talk about, and it has distant metastases. And here we’re not looking for a curative approach; we’re actually looking for palliation, which means that we’re trying to treat the prostate cancer as a chronic disease.
Katherine:
I understand that there are many types of prostate cancer that have been identified. How can patients advocate for a precise diagnosis?
Dr. Subudhi:
Yes, you’re absolutely right. There are many types. So, we have historically used histological classification. And when I say histological, that means when we look at the cancer under the microscope, we can look at the different structures within the prostate cancer and classify them.
And there are multiple types such as adenocarcinoma, neuroendocrine, small-cell, mucinous, etc. But more recently, with the advances in genetic and molecular testing, we now can look at the genes inside the prostate cancer, and that has also helped us better classify the cancer. Now many of these types of approaches are best done at major cancer centers, where they have experienced pathologists who actually evaluate both histologically and molecularly the cancer.
So, I recommend to my patients, or family and friends, that have been diagnosed with prostate cancer that they don’t necessarily have to go to the major cancer centers. They can have their local doctor send the tissue from the biopsy to the advanced cancer centers to get a second opinion.
Are You Prepared for Your Prostate Cancer Appointment? Expert Tips.
Are You Prepared for Your Prostate Cancer Appointment? Expert Tips. from Patient Empowerment Network on Vimeo.
Could you be better prepared for your prostate cancer appointment? Prostate cancer specialist, Dr. Alicia Morgans explains what pre-appointment tasks and helpful tools can help ensure patients get the most out of their appointments.
Dr. Alicia Morgans is an Assistant Professor of Medicine at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University.
See more from The Pro-Active Prostate Cancer Patient Toolkit
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Transcript:
Dr. Alicia Morgans:
There’s not really a question that I think is missed in most appointments when I talk to men with prostate cancer, but there are many men who have a burning question, whatever it may be, and they forget to ask it when we’re in that clinical encounter.
And the advice I would have is it’s really important if you think of it as a question that’s really important to you or even just a fleeting thought, to consider keeping a notebook where you can write it down to remember what that question is. Because if you bring the notebook, even that fleeting thought that you may never think of again is something that you’ve got written down, and you can open that notebook, and you can say, “Hey, I thought this may be a silly question, but what do you think?” And I’m sure that your doctor will answer it.
Questions about “How long do I have?” or “What can I expect?” or “How is this going to end?” or “Where is this going to go?” – these are sometimes questions that are really hard to answer. But even those questions, if that’s what you’re thinking about all the time, are going to be important to at least discuss with your doctor, whether you get a concrete answer or not. That may be an ongoing conversation that you have. But if you trust your doctor, you’ll be able to ask whatever it is that you need and not feel like it’s a silly question, because there really isn’t a silly question.
My best recommendation for patients to think about as they’re preparing for their physician visit is to get an advocate; get somebody to come in with you. And if that individual can’t come in with you, perhaps that individual can be on a cell phone or on FaceTime or engaged in that visit in some way, either in person or virtually.
And to take notes or to ask for things to be printed out that explain what you discussed at your visit, because it is very challenging to take in everything that is discussed in those physician visits and memorize everything when there’s really so much going on in many cases. So, having another set of eyes and ears and having a notebook piece of paper or a printout that really catalogs what was discussed can be really, really helpful in preparing for a visit.
And the other thing is to maybe always end with “Is there anything that I didn’t ask that I should?” or “Is there anything else that I need to know?” And sometimes that will prompt the doctor to say, “Yeah, I got through this whole thing, but I meant to mention this, and I forgot.” So, always leaving that door open in case there’s anything else the doctor needs to mention, and sometimes they just need a little prompt at the end. But I think the advocate’s probably the most important part.
Seeking Optimal Prostate Cancer Care? The Importance of Partnering With a Specialist
Seeking Optimal Prostate Cancer Care? The Importance of Partnering With a Specialist from Patient Empowerment Network on Vimeo.
As prostate cancer treatment options continue to expand, it’s important to partner with a physician who is up-to-date on the latest developments. Dr. Alicia Morgans explains why patients should consider seeking a specialist and obtaining a second opinion.
Dr. Alicia Morgans is an Assistant Professor of Medicine at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University.
See more from The Pro-Active Prostate Cancer Patient Toolkit
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Three Key Steps to Take Following a Prostate Cancer Diagnosis |
Are You Prepared for Your Prostate Cancer Appointment? Expert Tips |
Prostate Cancer Treatment Decisions: Which Path is Best for YOU? |
Transcript:
Dr. Alicia Morgans:
Over the last few years, prostate cancer treatment has been incredibly complicated. And I think I and many in the prostate cancer community would absolutely recommend that men with prostate cancer seek out a prostate cancer specialist to make sure that he has access to someone to get advice and medical recommendations that are going to be the most up-to-date.
It’s incredible to me that in the last few years there have actually been multiple new medications that have been approved, even some as recently as about a month and a half ago. And this landscape that we have to try to take care of men and help them live longer and feel better is constantly changing and hopefully broadening as we find more ways to take care of men with prostate cancer.
And the people that know that best are going to be specialists. And they include medical oncologists, urologists, and radiation oncologists, as well as some palliative care doctors who can really help with being specialists in pain control, constipation, appetite issues, energy issues. So, having a team of specialists is really critical. And it doesn’t necessarily mean that you need to see that specialist for every single appointment that you have for treating your prostate cancer, because many men in the United States who have prostate cancer don’t live very close to a large center where there might be a prostate cancer specialist.
Many men that I take care of actually live several hours away and come to see me once every six months or once a year or if they need advice because something has changed about their cancer. And that is completely okay, and actually, really, I think, a nice way to balance the convenience of having care close to home while still making sure that you have access to someone who is actively engaged in participating in the work to advance therapeutics and other ways of caring for prostate cancer.
Sometimes it can feel like you’re hurting feelings or potentially even offending your doctor if you say that you want to see someone else to get a second opinion or just to get another bit of advice about your cancer. But I think, and I think most doctors think, that at the end of the day part of dealing with cancer is making sure that you have the right treatment for the disease.
But part of taking care of people with cancer and dealing with cancer if you are the patient is making sure that your mind is at peace, that you have tried everything, and looked in every corner to find what you need to get the help that you really do deserve. And I think as we care for men with prostate cancer, we physicians know that we may have the answers for most but not all men, or we may not necessarily have an area of specialty in the particular issue that that man needs help with.
And so, we’re always open – I think I am. And I’m sure most doctors are, too – encouraging people, in fact, to seek second opinions if that’s what they need to either feel like they have access to the treatments that they need or to put their minds at ease. Because it really is the combination of physical care and emotional and mental care that is necessary to heal yourself while you are taking care of yourself with prostate cancer.
Three Key Steps to Take Following a Prostate Cancer Diagnosis
Three Key Steps to Take Following a Prostate Cancer Diagnosis from Patient Empowerment Network on Vimeo.
The actions that a patient takes following their prostate cancer diagnosis could have an impact on their care and treatment options. Expert Dr. Alicia Morgans recommends these three key steps post-diagnosis.
Dr. Alicia Morgans is an Assistant Professor of Medicine at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University.
See more from The Pro-Active Prostate Cancer Patient Toolkit
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Transcript:
Dr. Alicia Morgans:
From my perspective, three key steps that a man with prostate cancer would take as he’s getting that first diagnosis would start with getting an advocate – getting someone who can be the extra eyes and ears that you need when you go to a visit or read something that doesn’t quite make sense.
I think this is especially important for doctor visits, where so much information may be put in your lap that it can be really hard for the individual who has prostate cancer to take everything in. And sometimes, having someone who can either take notes or can just be there to listen and to recall things can be really helpful.
The second thing would be to make sure you find a doctor who you can trust. And this sounds really simple, but sometimes can take trying a couple different doctors to really find the one who you feel that you can connect with and who you feel will be able to listen to the questions that you have. Because your questions are valid, and I’m sure that there is a doctor out there who can help answer those questions no matter what they are.
From my perspective, the third thing that individuals should really make sure that they have is a source of information that they feel they can trust. For many men, this is an online source. But it’s real important to recognize that there is a lot of false information, and there’s a lot of information that’s really not necessarily from your perspective as a man with prostate cancer, but perhaps from someone else’s perspective – still truth, but not necessarily your truth.
So, some of the best sources of information can be from advocacy groups or from medical organizations. Because these are usually going to be vetted by physicians or by groups of patients who really try to present both broad perspectives as well as correct information that will be trustworthy as you move through the journey of prostate cancer.
Spotting False Claims: Tips for Identifying Prostate Cancer Misinformation
Spotting False Claims: Tips for Identifying Prostate Cancer Misinformation from Patient Empowerment Network on Vimeo.
While there are many helpful online resources to guide patients in a positive direction, false claims and advertisements about prostate cancer can add confusion. Dr. Alicia Morgans provides insight into how to identify misinformation.
Dr. Alicia Morgans is an Assistant Professor of Medicine at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University.
See more from The Pro-Active Prostate Cancer Patient Toolkit
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Three Key Steps to Take Following a Prostate Cancer Diagnosis <new link>
Are You Prepared for Your Prostate Cancer Appointment? Expert Tips <new link>
Prostate Cancer Treatment Decisions: Which Path is Best for YOU? <new link>
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Are You Prepared for Your Prostate Cancer Appointment? Expert Tips |
Three Key Steps to Take Following a Prostate Cancer Diagnosis |
Prostate Cancer Treatment Decisions: Which Path is Best for YOU? |
Transcript:
Dr. Alicia Morgans:
Some clues that may demonstrate that something is going to be riddled maybe with false claims or false promises would be if there are advertisements for medications that can cure prostate cancer on the computer.
Those medications are probably not real. And if they are, then they should be things that your doctor probably knows about. And so, I would certainly talk to your doctor about any supplements, any special nutrition or shakes or different things that make those claims. Because unfortunately, at this point, we in the medical community do not know of any herbs or spices that could cure prostate cancer. Certainly, there are things that people can take that may be useful and as long as they don’t interfere with the medicines that we’re using, or interact with them in a dangerous way, most doctors are completely okay with people taking them.
But anything that’s charging a lot of money and making really incredible claims is probably, unfortunately, just preying on people who are clearly vulnerable. And you need to be very careful that you’re not giving money away to things that are not real.
