Prostate Cancer Archives

Prostate cancer is the most common cancer in men in the US, after skin cancer. Almost all prostate cancers are adenocarcinomas (cancers that begin in cells that make and release mucus and other fluids). Prostate cancer often has no early symptoms.

More resources for Prostate Cancer from Patient Empowerment Network.

Why Should Prostate Cancer Patients Partner in Care Decisions?

Why Should Prostate Cancer Patients Partner in Care Decisions? from Patient Empowerment Network on Vimeo.

Why should prostate cancer patients play an active role in their care decisions? Dr. Atish Choudhury explains the concept of shared decision-making and shares credible resources for patients.

Dr. Atish Choudhury is the Co-Director of the Prostate Cancer Center at Dana-Farber/Brigham & Women’s Cancer Center. Learn more about Dr. Choudhury here.

See More from Engage Prostate Cancer

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What Is Prostate Cancer Palliative Care?

How Is Advanced Prostate Cancer Treated?

How Is Advanced Prostate Cancer Treated?

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When Should Prostate Cancer Patients Consider a Clinical Trial?


Transcript:

Katherine:

I’d like to talk about the term “shared decision-making.” What does that mean to you, exactly? 

Dr. Choudhury:

So, shared decision-making really means that when the physician conveys information to a patient, that the patient really understands what’s being said, and what, really, the alternatives are – and the real risks and the benefits of the different alternatives. And so, if a patient goes to see a surgeon and they say, “Well, we should take this out,” and there’s never really discussion of what the risks and benefits of the alternatives are –and the alternatives could be just watching, or radiation, or even more intensive treatment, then that’s not really shared decision making. 

But what I think is not exactly shared decision making is when the patient is getting information from really non-knowledgeable or non-reputable sources and then starts to come up with conclusions based on hearsay or people trying to sell them a product that really hasn’t been FDA approved or really tested. And so, those are situations where when the information is really not good, then we can run into troubles with communications. But there are a lot of really excellent sources for patient information that’s available, and the Prostate Cancer Foundation is a really good source, and a lot of the academic prostate cancer centers are really great sources of information. 

And so, being educated and asking good questions is really the best way for a patient to feel comfortable that they’re not missing anything and that they’re, again, having all the information that they need to make a good choice for themselves. 

Katherine:

Do you have any advice to help patients speak up if they’re feeling like they’re not being heard?   

Dr. Choudhury:

Sure. So, I mean, there’s never any barrier to bringing up concerns with whoever that you’re seeing, and if you feel like whoever you’re talking to isn’t being receptive to those concerns, then certainly, second opinions are very useful. But if you see multiple doctors and they’re kind of telling you the same thing based on good evidence, then you probably have to take in what they’re saying, and process it, and see if it really does apply to your particular situation. 

But any cancer doctor who really has your self-interest in mind will be very open to discussing the concerns that you have, so you should absolutely bring them up. 

An Expert Debunks Advanced Prostate Cancer Myths

An Expert Debunks Advanced Prostate Cancer Myths from Patient Empowerment Network on Vimeo.

Dr. Atish Choudhury debunks common myths about advanced prostate cancer, including concerns about genetics, treatment, and side effects.

Dr. Atish Choudhury is the Co-Director of the Prostate Cancer Center at Dana-Farber/Brigham & Women’s Cancer Center. Learn more about Dr. Choudhury here.

See More from Engage Prostate Cancer

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What Is Prostate Cancer Palliative Care?

What Is Prostate Cancer Palliative Care?

How Is Advanced Prostate Cancer Treated?

How Is Advanced Prostate Cancer Treated?

When Should Prostate Cancer Patients Consider a Clinical Trial?

When Should Prostate Cancer Patients Consider a Clinical Trial?


Transcript:

Katherine:                  

I’d like to address a list of common concerns about treatment that we’ve heard from the community. So, I’d love to get your take on these. “There’s nothing that can be done about advanced prostate cancer.” Is that true?

Dr. Choudhury:           

So, that is very much untrue in that even patients with pretty advanced prostate cancer – even what we call “high-volume” kinds of prostate cancer – can live for years, and years, and years with appropriate treatments.

And the concern, oftentimes, is that the way that we get those years, and years, and years are with treatments that lower levels of testosterone, and I’m guessing that some of your questions coming up are related to concerns around side effects of treatment. But many of our patients tolerate those side effects pretty well and can live quite a good, and vigorous, and fulfilling life even with pretty advanced prostate cancer.

Katherine:                  

The next one: “Clinical trials are a last-resort treatment option.”

Dr. Choudhury:   

Yeah, so, as I’d mentioned before, clinical trials can be appropriate anywhere along the treatment trajectory of prostate cancer, and they are often being compared against standards which are often pretty good, but can we make them better? And certainly, participating in clinical trials isn’t for everyone, but for a long of our patients who are interested in seeing if an experimental approach might be beneficial to them or contributing some knowledge to patients down the line really do find trial participation to be quite fulfilling.

Katherine:                  

All right. The next one is: “Prostate cancer isn’t genetic, so I don’t need to be tested.” Is that the case?

Dr. Choudhury:        

No. So, it turns out that prostate cancer is actually one of our most heritable cancers. Somewhere between 40% and 50% of the predisposition to prostate cancer is actually genetic, or inherited based on family. So, the part that’s tricky and the part that is hard to maybe explain to patients is that a lot of that heritability is not encompassed in particular cancer genes in the way that many people are familiar with with breast and ovarian cancers, which are often linked to genes called “BRCA-1” and “BRCA-2.” So, a small subset of patients with prostate cancer do have alterations in that BRCA-2 gene, or BRCA-1, or ATM, or some other genes involved in breast and ovarian cancers.

And that does impact, potentially, their treatments down the line, and certainly is impactful for themselves, their siblings, their children as far as, potentially, screening recommendations for other cancers. But oftentimes, we’ll do one of these tests in patients who have a pretty extensive family history of prostate cancer, and they come out negative, and the patient is very confused because they clearly have a family history, but it’s because not all the risk of prostate cancer is actually encompassed in these gene tests that we run.

Katherine:                  

Ah, okay. The next concern is “I’ll lose all sexual function when I receive treatment.”

Dr. Choudhury:         

So, it very much depends exactly what the treatment is, and what’s being offered, and what the recovery is like.

So, for example, for patients who go into a prostatectomy and have very good erectile function, it’s not inevitable that you’ll lose your sexual functioning after a prostatectomy. There is a process – we kind of refer to it as “penile rehab” – of using medications like a Viagra or Sialis to restore the blood flow. You could use certain things like vacuum pump devices to restore the blood flow, and again, it’s not inevitable that people are going to lose their sexual functioning after a prostatectomy.

Even with testosterone suppression, while it plays a role in libido and erectile function, it’s not inevitable that people lose their libido and erectile function completely, even on these drugs. But certainly, more often than not, people will lose their erectile function on testosterone-lowering medications.

And so, there are alternative ways to get erections – involving, again, use of vacuum pump devices or injections that people can give themselves into the penis. People can have penile implant surgery to be able to get erections that way. And so, it’s really dependent on what the situation is.

Again, none of those more mechanical interventions are really ideal, but particularly when people have a defined course of treatment – for example, a surgery or radiation with a brief course of hormones – people can recover erectile function even after those sorts of interventions. And if they can’t, then we do have other approaches that will allow people to still be able to be sexually intimate with their partner after all of the treatments are completed.

Katherine:                  

Dr. Choudhury, one more concern: “My symptoms and side effects can’t be managed.”

Dr. Choudhury:           

Yeah. So, again, it’s very rare that we run into situations where there are side effects or symptoms that can’t be managed at all, in the sense that we have very effective medications against hot flashes, or moodiness, or pain, or –just fatigue. And certainly, lifestyle plays a big role in this. Also, a lot of the symptoms that people express are related to underlying depression and anxiety issues, and certainly, engaging with a mental health provider can be helpful in terms of managing those as well.

And then, there’s a lot of nonpharmacologic treatments – meaning nonmedication approaches that can provide people a lot of benefit in terms of their quality of life, and we have an integrative center called the Zakim Center for Integrative Medicine that helps with the relaxation techniques, and massage, and yoga, and acupuncture…

And people find different approaches to help manage these symptoms and side effects. And so, it’s very unusual where we run into a situation where the side effects are unbearable and unmanageable. Usually, we can manage them in some form of way that allow people to have, again, a good quality of life and a meaningful life, even on prostate cancer treatment.

Which Factors Impact Advanced Prostate Cancer Treatment Decisions?

Which Factors Impact Advanced Prostate Cancer Treatment Decisions? from Patient Empowerment Network on Vimeo.

Once treatment goals are defined, what else goes into making an advanced prostate cancer treatment decision? Dr. Atish Choudhury reviews factors that affect options.

Dr. Atish Choudhury is the Co-Director of the Prostate Cancer Center at Dana-Farber/Brigham & Women’s Cancer Center.
Learn more about Dr. Choudhury here.

See More from Engage Prostate Cancer

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Why Should Prostate Cancer Patients Partner in Care Decisions?

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An Expert Debunks Advanced Prostate Cancer Myths

An Expert Debunks Advanced Prostate Cancer Myths


Transcript:

Katherine:

Let’s start by understanding the goals of treatment. What are the goals of advanced stage prostate cancer? 

Dr. Choudhury: 

So, in general, the goal of treating any cancer is to a live a long, happy, healthy life with limited quality of life troubles from the cancer itself or its treatments. And so, for localized prostate cancer, that generally means treating with curative intent – that we give radiation or surgery, potentially in combination with hormonal treatments so that the cancer is taken care of and people can be cured and not need further treatments moving forward at all. 

And there are situations, even in fairly advanced cases, where that’s a reasonable and accomplishable goal. And there are other situations that we might not be able to cure the cancer completely, but the treatments can be quite effective at keeping it under control and keep people with a very good quality of life so that prostate cancer is not a day-to-day burden for them and that they can survive with cancer for years, and years, and years.   

Katherine:

What do you typically consider when determining the best treatment approach or option for a patient? 

Dr. Choudhury:

So, the starting point and the ending point is the patient themselves. And so, “the patient” means “What is their age? What is their fitness level? What are their activities? What’s the overall life expectancy? What are there other medical issues?” And then, we consider the cancer – “What is the stage? What is the grade? Where has it spread to, if it’s spread?” 

And then, we try to incorporate all of those pieces with data – with clinical trials that have already been reported – and we have a lot of data in prostate cancer from patients who’ve participated in clinical trials, often randomized to one approach versus another, that gives us a sense of “What are the approaches that really benefit patients in terms of increasing likelihood of cure or prolonging the survival?” 

And so, once we incorporate all of those things, we can come up with some treatment suggestions, and then patient preference on those suggestions obviously plays a very important role. But sometimes, we start down a line, and the patient is having troublesome side effects or it’s not working as well as we’d really hoped, and it’s important to be adaptive and to change things if things are not going down a route that we’d really hoped. So, that’s an ongoing conversation. It’s not that you make a treatment plan at the first visit and that’s the plan that’s stuck with throughout the whole course of things. 

It’s a conversation at every visit on how things are going in terms of how the patients are doing and how the cancer is responding. And then, again, try to manage side effects as well as we can and adjust things if we need to along the way – and maybe switch to something that’s potentially going to be better tolerated or more effective, depending on what we see. 

Katherine:

Right. It sounds like there are many factors to weigh when making this decision.  

When Should Prostate Cancer Patients Consider a Clinical Trial?

When Should Prostate Cancer Patients Consider a Clinical Trial? from Patient Empowerment Network on Vimeo.

When should patients consider a clinical trial? Dr. Atish Choudhury explains the benefits of trial participation, how to get involved, and discusses emerging approaches in cancer treatment.

Dr. Atish Choudhury is the Co-Director of the Prostate Cancer Center at Dana-Farber/Brigham & Women’s Cancer Center.
Learn more about Dr. Choudhury here.

See More from Engage Prostate Cancer

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An Expert Debunks Advanced Prostate Cancer Myths

An Expert Debunks Advanced Prostate Cancer Myths


Transcript:

Katherine:                  

Where do clinical trials fit in?

Dr. Choudhury:       

So, clinical trials can fit in anywhere along the treatment trajectory for prostate cancer. It’s not something that’s reserved for kind of late-stage disease. So, for example, for people with localized disease, there are different types of treatment strategies that might be available to maybe enhance the activity of the surgery or the radiation that’s planned. And so, we might consider a clinical trial even for localized prostate cancer.

And then, anywhere along the way, there are standard treatments that are available, and then, there are some experimental approaches that might be available. And the experimental approaches might be to add an additional drug to the standard or to actually – what we call “deescalate treatment” – give a little bit less of the medication and see if the outcomes are the same. And these are tests.

And so, the control arm, when there’s a randomized trial, is generally considered a standard of care. And then, the experimental arm is some alteration or deviation from that standard. But many of our trials are also single-arm trials where we’re testing some experimental regimen that all patients who participate in the trial will take part in, and it’s really important for the patient to ask, “What are the clinical trials available?” “What are the alternatives as far as standard treatments?” and “Are there other clinical trials other than the one that’s being discussed,” that might be appropriate for them?

Katherine:                  

Are there emerging approaches that patients should know about?   

Dr. Choudhury:        

Yeah. So, a lot of the emerging approaches are related to the genetics of the prostate cancer, as I just mentioned. And then, these different forms of radiation drugs – in addition to the ones that have already demonstrated survival advantage, there are other ones in the pipeline. And then, one thing that patients are very curious about is immune therapy approaches to prostate cancer.

Now, the standard kind of immune therapy drugs that are approved for lung cancer, and melanoma, and kidney cancers don’t tend to work particular well for prostate cancer. But there are many clinical trials trying to combine those kinds of drugs with other drugs or have newer approaches to immune therapies that patients with advanced cancer can certainly ask about.

Again, all of this is really experimental, and people need to understand that these sorts of approaches aren’t going to help everyone. But participating in a clinical trial allows our patients to contribute to knowledge that can be useful for other patients down the line.

How Is Advanced Prostate Cancer Treated?

How Is Advanced Prostate Cancer Treated? from Patient Empowerment Network on Vimeo.

What therapies are available to treat advanced prostate cancer? Expert Dr. Atish Choudhury reviews current treatment options.

Dr. Atish Choudhury is the Co-Director of the Prostate Cancer Center at Dana-Farber/Brigham & Women’s Cancer Center.
Learn more about Dr. Choudhury here.

See More from Engage Prostate Cancer

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When Should Prostate Cancer Patients Consider a Clinical Trial?

When Should Prostate Cancer Patients Consider a Clinical Trial?

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An Expert Debunks Advanced Prostate Cancer Myths

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Transcript:

Katherine:                  

So, let’s walk through the types of therapy that are used today to treat prostate cancer. If you would start with surgery?

Dr. Choudhury:            

Sure. So, surgery is a radical prostatectomy, and they take out the prostate – they take out neighboring structures called seminal vesicles, they take out the surrounding fat, and they’ll usually take out some neighboring lymph nodes as well. And there are advantages of surgery in that when the prostate is out, the pathologist can examine the whole prostate front to back, side to side, as well as those neighboring structures to really understand the stage of the cancer – “Where is it?” – and also, the grade – “Is it a high-grade cancer, a low-grade cancer, somewhere in the middle?”

And it really helps guide “What is the risk of developing recurrence afterwards, and are there further treatments that we should be giving after the surgery? For example, radiation to the prostate bed to decrease the risk of recurrences. Surgery does have its own set of potential side effects and complications, so it’s not appropriate for everyone, but in general, that’s the process.

Katherine:                  

What other treatment options? You mentioned radiation. What else is there?         

Dr. Choudhury:          

Yeah, so, radiation comes in two forms: there’s seed radiation, which is implantable little radioactive pellets that are implanted throughout the prostate. And then, there’s external radiation, and that can be given in several forms and over several schedules that it’s really important to discuss with the care team.

The other forms of treatment that people on this call might’ve heard about or read about are in a category called “focal treatments,” and these are basically ways to – and the term we use is a blade but zap – an area of the prostate using lasers, or high-intensity ultrasound, or with freezing an area of the prostate, or with something called “irreversible electroporation.”

These are basically all ways to, again, zap an area of the prostate either with heat or with cold with the intention of killing off cancer cells in an area. And the trouble is that none of these treatments have actually been demonstrated to improve outcomes related to prostate cancer compared to just surveillance alone. And it does complicate, sort of, the monitoring afterwards to see if something has come back.

But there might be very selected patients where there’s an area of cancer that’s seen on a scan – like an MRI – with no cancer seen outside of that area who might decide to pursue this possibility of focal treatment with the goal of maybe putting off the need for something like radiation or surgery. But that’s something that really should be discussed with a multidisciplinary team so that people really understand what they’re getting into in terms of risks and potential benefits.

So, those treatments are not really considered standard at this time.

Katherine:                  

What about hormonal therapy?        

Dr. Choudhury:   

Yeah, so, hormonal therapy plays a role in the treatment of prostate cancer, really depending on the stage and the other treatments that are being considered. So, for example, if a patient is going to surgery for a localized prostate cancer, in general, we wouldn’t use hormonal treatment either before or after the surgery unless they’re planned for radiation after the surgery.

However, for patients who have intermediate risk or higher localized prostate cancer and are getting radiation, then we will often recommend hormonal treatments, which are basically testosterone-lowering drugs, to make the radiation work as well as possible. And then, for patients who have advanced cancer beyond where surgery or radiation is going to be of help, then, hormonal treatments are important to treat the cancer wherever it is.

And that’s because prostate cancer cells, wherever they are in the body – wherever they’re in the prostate itself, or in lymph nodes, or bones, or other organs – depend on the testosterone in your body to supply a fuel – to support its growth and survival.

And so, lowering the level of testosterone in the body basically deprives the cancer cells of that fuel and starts a process of killing cancer cells even without any need for radiation, or chemotherapy, or things like that. However, hormonal treatments are not curative. They don’t kill all the cancer – they kill some and put the rest to sleep. And so, if you stop the hormonal treatment, the cancer will grow back, and that’s why it’s not a treatment on its own for localized prostate cancer.

And that’s also why, for prostate cancer that’s spread, we often add on additional medications to the testosterone-lowering drugs to be more effective at really killing the cancer wherever it is compared to the testosterone suppression alone.

Katherine:                  

Oh, I see. For advanced disease, what treatments are available for patients that are hormone-sensitive or -resistant?

Dr. Choudhury:           

Yeah, so “hormone-sensitive” means that the cancer has advanced, but the patient hasn’t started on testosterone-lowering drugs yet. And so, as I had mentioned, testosterone lowering is really the backbone of treatment of these patients. And so, there are additional treatments that have been demonstrated previously to be effective after testosterone-lowering by itself stops working, and these include a chemotherapy drug called docetaxel. And in addition, there are more potent hormonal drugs called abiraterone, enzalutamide, apalutamide, and darolutamide.

And the role of these other drugs is to block hormonal signaling within the cancer cells from hormones other than testosterone. And so, by doing the more potent hormonal drug in conjunction with the testosterone lowering, that leads to a much deeper response – much more tumor shrinkage – and, it turns out, also prolonged survival in patients treated with those combination treatments – compared top people who are treated with testosterone lowering alone and then receive these drugs later.

So, there’s something about treating more aggressively at the beginning in this hormone-sensitive state that plays out in prolongation of survival. And not only prolonged survival, but improved quality of life due to delaying the symptoms of cancer grown and progression.

Katherine:                  

Right.        

Dr. Choudhury:   

When we then talk about castration resistant disease, certainly we use the same classes of drugs, but then, there’s a wider armamentarium of things that we use that include, again, other kinds of chemotherapy.

There are radiation drugs, and an approved drug Radium-223. And there’s another drug on the horizon called Lutetium PSMA. There are immune therapy drugs – something called Sipuleucel-T – and then, this is also a situation where we do genetic testing of the cancer to understand if there’re certain –what we call “therapeutic vulnerabilities.”

Other treatment options that are available based on the genetics of the cancer that might be helpful in some people? And specific options include a chemo-immune therapy called “Keytruda” in a small subset of patients with particular genetic changes involving genes involved in mismatched repair of DNA. And then, there’s another set of targeted treatments called “PARP inhibitors” for certain sets of patients who have alterations in genes involved in homologous recombination repair of DNA.

So, that’s all very complicated, and so that’s why it’s important to get treated with high-volume providers of prostate cancer patients so that they’re really aware and onboard with these various treatment options that are available.

What Is Prostate Cancer Palliative Care?

What Is Prostate Cancer Palliative Care? from Patient Empowerment Network on Vimeo.

What is palliative care? Dr. Atish Choudhury discusses what palliative care involves for advanced prostate cancer patients.

Dr. Atish Choudhury is the Co-Director of the Prostate Cancer Center at Dana-Farber/Brigham & Women’s Cancer Center. Learn more about Dr. Choudhury here.

See More from Engage Prostate Cancer

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Who Are the Members of a Prostate Cancer Care Team?

Who Are the Members of a Prostate Cancer Care Team?

An Expert Debunks Advanced Prostate Cancer Myths

An Expert Debunks Advanced Prostate Cancer Myths

Which Factors Impact Advanced Prostate Cancer Treatment Decisions?

Which Factors Impact Advanced Prostate Cancer Treatment Decisions?


Transcript:

Katherine:                  

Dr. Choudhury, we received this question from an audience member prior to the program: What is palliative care?

Dr. Choudhury:           

So, palliative care is really a branch of medicine that helps with symptom management. And so, that symptom management doesn’t necessarily have to be end-of-life sort of symptoms relating to death and dying. It can be just along the way to help with managing the symptoms related to cancer and its treatment, but also to be kind of another medical provider to help with communication of goals of care – what’s really bothersome, what’s really important – so that we kind of incorporate those wishes and desires into the management decisions that we make.

So, a patient does not have to be at end-of-life to engage with palliative care. Certainly, even earlier engagement with palliative care can be helpful to maximize quality of life along the treatment journey. But as symptoms become more bothersome, certainly, our palliative care colleagues can be incredibly helpful – not just in helping manage pain, but also nausea, also depression and psychological side effects. So, they’re a really critical part of our treatment team.

Who Are the Members of a Prostate Cancer Care Team?

Who Are the Members of a Prostate Cancer Care Team? from Patient Empowerment Network on Vimeo.

Prostate cancer expert Dr. Atish Choudhury explains which experts comprise a prostate cancer care team. Dr. Choudhury encourages patients to take an active role as a member of their care team.

Dr. Atish Choudhury is the Co-Director of the Prostate Cancer Center at Dana-Farber/Brigham & Women’s Cancer Center. Learn more about Dr. Choudhury here.

See More from Engage Prostate Cancer

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What Is Prostate Cancer Palliative Care?

What Is Prostate Cancer Palliative Care?

How Is Advanced Prostate Cancer Treated?

How Is Advanced Prostate Cancer Treated?

Which Factors Impact Advanced Prostate Cancer Treatment Decisions?

Which Factors Impact Advanced Prostate Cancer Treatment Decisions?


Transcript:

Katherine:                  

So, who is typically on a patient’s prostate cancer healthcare team?

Dr. Choudhury:            

Yeah. So, generally, the consultations here at Dana-Farber are multidisciplinary, with a medical oncologist, a radiation oncologist, and a urologic oncologist – so, a surgeon.

And so, if a patient is a good candidate for treatment to the prostate itself, then certainly, the surgeon and the radiation oncologist will talk about those treatments. And if the treatment is primarily with medications, then the medical oncologist will generally sort of take the lead. But there is often a role for local treatment to the prostate itself, even in cancer that’s spread beyond the prostate. So, that’s why the multidisciplinary consultation is so important.

Katherine:                  

Right. What do you feel is the patient’s role as a team member?

Dr. Choudhury:           

Absolutely. So, I think it is very important for the patient to make sure that they come into these multidisciplinary meetings with questions around “What is my stage?” “What are the choices?” “What do I expect with treatment? Without treatment? With the various treatment options?” And basically, to take in the advice that they’re getting from the different members of the multidisciplinary team, and really think about how that’s impactful for them and their goals for themselves and what they really hope for the short term and for the long term.

I think what gets tricky is that there’s really very not-great sources of information that’s out there online and in YouTube videos and things like that, and I think it does play an important role for the patient to really understand what are the real high-quality sources of information – they tend to come from academic medical centers like ours. And certainly, we do encourage second opinions at other high-quality, high-volume centers so that the patients understand that the recommendations that are being made are generally made based on the based data and with people with a lot of experience at treating their kind of cancer.

Katherine:                  

What about caregivers? How do they fit into the team?

Dr. Choudhury:             

Caregivers are critical because patients are not always the most expressive at, really, what their wants, and needs, and desires are. And especially when they’re on treatment, sometimes they’re not so expressive around the things that are bothering them on a day-to-day basis.

So, the caregivers are really important for communication with us to be kind of another set of eyes and ears in terms of kind of reporting what the patient’s symptoms are or what their goals or desires are that maybe they themselves don’t feel comfortable expressing. But they also play an important role in helping us with, kind of, lifestyle recommendations to the patient. Because certainly, much of the process of doing well with prostate cancer treatments is kind of lifestyle modifications – makes sure you’re eating healthy, exercising regularly – and the caregivers can play a very important role in making sure that patients stick to that kind of regimen as well.    

Katherine:                  

I would think one of the issues for a patient too is that just having a cancer can be overwhelming and can make it difficult for them to even remember all the questions and concerns that they have.

Dr. Choudhury:            

Yeah, that’s absolutely critical, and the caregivers play a very important role. So, often, people who are not partnered, for example, will just bring a friend to these appointments just to be that second set of eyes and ears.

Telemedicine Specialized Care Directory: Prostate Cancer Edition

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How Can Clinical Trials Be Accessed?

How Can Clinical Trials Be Accessed?  from Patient Empowerment Network on Vimeo.

Clinical researcher Dr. Seth Pollack and patient advocate Sujata Dutta explain the benefits of participating in a clinical trial. They review important questions to ask your doctor and share advice for finding a trial.

Dr. Seth Pollack is Medical Director of the Sarcoma Program at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University and is the Steven T. Rosen, MD, Professor of Cancer Biology and associate professor of Medicine in the Division of Hematology and Oncology at the Feinberg School of Medicine. Learn more about Dr. Pollack, here.

Sujuta Dutta is a myeloma survivor and empowered patient advocate, and serves a Patient Empowerment Network (PEN) board member. Learn more about Sujuta, here.

See More from Clinical Trials 101

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Transcript:

Katherine Banwell:    

Sujata, there’s clearly a lot of hesitation and misconceptions out there. What would you say to someone who’s considering a trial but is hesitant?

Sujata Dutta:  

I would say speak to your provider, speak to your doctor, and get all these myths kind of busted to say, “it’s going to be expensive” or whatever those questions are. And then, through that process also try and understand what is it that the study is trying to achieve? How is that going to be beneficial to you? So, in my instance, it wasn’t the last line of defense, it was just one of the processes or combos that would help me. And so, that was important for me to understand and then a little bit of education as well. So, I was asking, I have questions on my phone every time I meet my provider, and I did the same thing. So, I think that one of the good practices is keep your note of your questions and have those questions ready. And no question is silly, all questions are important. So, ask as many questions as you can and use that opportunity to educate yourself about it.

And maybe you realize, “No. I don’t think it’s working for me” or “I don’t think this trial is good for me.” But it’s good, important, to have that conversation with your provider, that’s what I would recommend highly.

Katherine Banwell:    

Excellent. Thank you, Dr. Pollack, if someone is interested in participating, how can they find out about what trials are even available for them?

Dr. Seth Pollack:       

Yeah. I mean, the best thing to do is to start just by asking your doctor if they know about any clinical trials. And a lot of the times the clinical trials are run at the big medical centers that may be closer to you, so you could ask your doctor if there’s any clinical trials at the big medical center even. Or I always think it’s good to get a second opinion, you could go get a second opinion at the big medical center that’s close to you and ask them what clinical trials are at your center.

And sometimes they’ll be conscious about some of the clinical trials that may be even run around the country. And you can ask about that as well.

Katherine Banwell:    

Would specialists have more information about clinical trials than say a general practitioner?

Dr. Seth Pollack:       

So, I specialize in rare cancers, so a lot of the times the general practitioners they’ve got my cell phone number, and they text me, and they say, “Hey, do you have a clinical trial going on right now?” And that happens all the time, but yeah, the specialists will usually because frankly there’s so much to know. And the general practitioners really have a lot to keep track of with all the different types of diseases that are out there. Whereas at the big centers, the specialists, part of their job is really to keep their tabs on what’s going on with the clinical trials.

So, they’re good people to ask, either your local doctor could reach out to them, or you could go get a second opinion and ask.

Sujata Dutta:  

There’s also a lot of information, Katherine, on sites such as LLS, or PEN, or American Cancer Society that they also publish a lot of information. Of course, I would recommend once you have that information then vet it by your specialist, or whatever. But if you’re interested in knowing more about clinical trials in general and some that would work for you, then those are also some places to get information from.

Katherine Banwell:    

That’s great information. Thank you, I was going to ask you about that Sujata. Well, before we end the program, Dr. Pollack, I’d like to get your final thoughts. What message do you want to leave the audience with related to clinical trial participation?

Dr. Seth Pollack:       

Yeah. I think clinical trials it can be a very rewarding thing for a lot of patients to do, I think patients really like learning about the new treatments. And I think a lot of patients really like being a part of pushing the therapies forward in addition to feeling like sometimes they’re getting a little bit of an extra layer of scrutiny, because there’s a whole extra team of research coordinators that are going through everything.

And getting access to something that isn’t available yet to the general population. So, I think there’s a whole host of advantages of going on clinical trials, but you need to figure out whether or not a clinical trial is right for you.

Katherine Banwell:    

Yeah. Sujata, what would you like to add?

Sujata Dutta:  

Absolutely, I second everything that Dr. Pollack is saying. And in my personal experience I wouldn’t say everything is hunky-dory, everything is fine. I’m going through treatment, I have chemo every four weeks, I started with chemo every week. That’s when the logistics pace was really difficult because going to Mayo every week was not easy. But anyways, as the trial progress itself every four weeks, but as I said the benefits are huge because I have labs every four weeks. I meet my provider every four weeks.

So, we go through the labs and anything amiss, I’ve had some changes to my dosage because I’ve had some changes in the labs. And so, there’s a lot of scrutiny which I like, but the flip side, for maybe some maybe like, “I have to have chemo every four weeks. Do I want to do that or not?” Or whatever. In my case, I knew it, and I signed up for it, and I’m committed to doing that for two years. And so, I’m fine with that. So, I would say all in all, I’d see more benefits of being in a clinical trial. One, you’re motivated to give back to the community. Two, you are being monitored and so your health is important to your provider just as it is to you. And so, I highly recommend being part of a trial if it works for you and if you’re eligible for one.

Are Clinical Trials Safe?

Are Clinical Trials Safe?  from Patient Empowerment Network on Vimeo.

Clinical researcher Dr. Seth Pollack explains the safety protocols in place for clinical trials, including how data is reported and protected. Patient advocate Sujata Dutta goes on to share her experience in a clinical trial.

Dr. Seth Pollack is Medical Director of the Sarcoma Program at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University and is the Steven T. Rosen, MD, Professor of Cancer Biology and associate professor of Medicine in the Division of Hematology and Oncology at the Feinberg School of Medicine. Learn more about Dr. Pollack, here.

Sujuta Dutta is a myeloma survivor and empowered patient advocate, and serves a Patient Empowerment Network (PEN) board member. Learn more about Sujuta, here.

See More from Clinical Trials 101

Related Resources:

Is a Clinical Trial a Last-Resort Option?

A Patient Shares Her Clinical Trial Experience

If I Participate in a Clinical Trial, Will I Be a Guinea Pig?


Transcript:

Katherine Banwell:

Some patients feel that clinical trials aren’t safe, is that the case, Dr. Pollack?  

Dr. Seth Pollack:

No. I mean, we go through, as I was saying before, these clinical trials are extensively vetted. So, the safety is, of course, one of the things that we look most carefully about. But as I was saying before, like with any treatment’s cancer treatments have toxicity, that’s a common problem. So, and when you’re dealing with something brand new sometimes there is a little bit more risk. So, when you’re talking about these very early-stage Phase I trials you probably want to talk to your doctor about what sorts of toxicities you can expect and where they are in the Phase I trial. Are you the first ever to receive this new drug? And if you are nobody’s making you go in the clinical trial, so it can only help to get more information. Right? So, you should ask your team about it, you should find out. 

Most of the time there’s going to be a lot of patients that have been treated already, I mean, they can’t give you definitive data about how things are going but they can maybe say, “Hey. I’ve already treated a few patients on it, and they seem to be doing great.” 

Katherine Banwell:

So, you need to weigh the pros and cons of the trial. 

Dr. Seth Pollack:

You do need to weigh the pros and cons. Now, when you’re talking about these Phase IIs and Phase IIIs, I mean, these are drugs now that have really been vetted for their safety and we have a lot of data about it. And even the Phase Is, it’s not like these things are coming out of nowhere, they’ve been scrutinized, we really expect that they’re going to be safe but we’re doing the trial to prove it. So, it’s a good thing to ask about. 

Katherine Banwell:

Yeah, yeah. 

Sujata Dutta:

Yeah. I would also add that it’s so closely monitored that safety is a top priority, it’s front and center. So, the advantage, I think, with being on a trial is the close monitoring of the patient exactly for this reason. 

If something is amiss it’s going to be picked up as quickly as possible and you’re any issues are going to be addressed as soon as. So, I think, safety does get addressed pretty quickly.  

Katherine Banwell:

Good. 

Can data from trials even be trusted? Dr. Pollack, is that the case? 

Dr. Seth Pollack:

Well, of course, I mean, it can be trusted. Because the thing with the clinical trial data is that you really see the data and there’s all kinds of scrutiny making sure that the data is reported accurately. Now, there’s a whole other conversation we could have as to whether we could interpret the data differently. And sometimes that is an issue that comes up, but the data is reported very accurately. 

So, and there are statistics that are very well understood, and the bar is actually pretty high to say one arm of the trial was better than the other arm of the trial. So, if patients have better survival on one arm, if we say that, usually it means they did considerably better. Enough better that it wasn’t a random chance that one extra patient did better on the treatment arm. No. There were enough patients that did better that the statisticians can go through it with a fine-toothed comb. And they can be absolutely sure up to exactly how many percent sure they can tell you, 0.05 percent or less chance of error that this was a real difference between the study arm and the standard of care arm. 

Sujata Dutta:

I think you mentioned too that one is trust, and one is data. So, Dr. Pollack mentioned a lot about the data, I think the trust is also a very important thing. I like to go with positive intent because I do not have a reason to believe my doctor has some ulterior motive to suggest a clinical trial. And so, I trust them wholeheartedly. The first hurdle is you have to trust the system or what is being proposed to you because, as Dr. Pollack said, it’s gone through a lot of vetting. A recommendation to be part of a trial itself is vetted by your doctor when they make the recommendation. So, have faith, trust, that they are making a good recommendation. And then, of course, the data, I don’t know much about that, but as I said, I trust it. So, I would trust the data too. 

Katherine Banwell:

Of course. Of course. Some patients feel like they’re going to lose their privacy. Sujata, did you feel that at all? 

Sujata Dutta:

No. Not at all. 

I mean, with everything else that is also taken care of, my information, or whatever, is not made available to anybody. And so, obviously there’s a lot of people will get those, and I had a huge pile of paperwork to go through, but I think that’s a good thing. For my peace of mind that I knew that my information was not going to be shared outside of the study, the trial, etc., and things. So, no, I don’t think that’s a problem. 

Katherine Banwell:

Beyond these misconceptions is there anything else you hear? Dr. Pollack?  

Dr. Seth Pollack:

No. I mean, look, in our crazy modern world there’s concerns everywhere, but the clinical trial is very, very careful. Whenever possible we use the medical chart.  

And then, we have a very stringently protected database that’s storing people’s information, but it’s deidentified. So, I mean, we have a separate key to figure out who the patients are and then we try to limit the use of the patient’s name or any identifying information about them beyond that. So, and your information is not shared. For example, if there’s a drug company involved in the trial, your information is not shared with the drug company, you have a new identifier that is unique and not traceable back to you that is provided to whoever, if there’s outside groups working on the trial with you. So, your information is very carefully protected, and everyone is very conscious about issues regarding privacy.  

Katherine Banwell:

That’s great to know.  

Are Clinical Trials a Logistical Nightmare?

Are Clinical Trials a Logistical Nightmare?  from Patient Empowerment Network on Vimeo.

PEN board member and myeloma survivor Sujata Dutta shares how her family managed the logistics of her clinical trial participation.

Sujuta Dutta is a myeloma survivor and empowered patient advocate, and serves a Patient Empowerment Network (PEN) board member. Learn more about Sujuta, here.

See More from Clinical Trials 101

Related Resources:

Is a Clinical Trial a Last-Resort Option?

Are Clinical Trials Safe?


Transcript:

Katherine Banwell:    

The logistics will be a nightmare and I don’t live close to a research hospital. Sujata, did you have that issue?

Sujata Dutta:  

Yeah. That’s a very interesting one, and actually I’ll share my experience. I did have this concern about logistics, because I got my transplant at Mayo Rochester, which is a two-hour drive from where I live. And so, when I got to know about it literally me and my husband were like, “Oh, my gosh. What are we going to do?” It’s not just me, my husband is my caregiver, he has to take the day off to drive me to Mayo, wait through my treatment, and drive me back. Then we have boys who were distance learning at the time, and so what do we do with them? Do we drop off a friends or take a favor from a friend? And so on and so forth.

So, the logistics was an issue and we literally said, “Thanks but no thanks” and we walked out of the room. And we came downstairs, and my husband was like, “What the heck?” My team understands everything, and I fortunately work for a very good employer, and they understand everything, people first. And so, he was like, “I can figure this out. Let’s do it if this is what’s going to help you, then let’s just figure this out.” And at that time, it was so good, and I have total respect for Dr. Pollack.

You and everybody in this medical community. My doctor who leads the trial at Mayo, she actually said, “Why don’t you check with your local cancer center? Maybe they are also approved by FDA, and they may be able to administer this treatment to you.” Unfortunately, at that time they weren’t but we were like, “We’re going to go ahead with the trial. It doesn’t matter.” My husband was like, “I’ll take the day off, you don’t worry about it.” And then, four months later my institute did get approved by FDA, and so I was able to transfer from Mayo to my local cancer center, Abramson Cancer Center, which is 20 minutes from home. And so, there are options, I know that it can be an issue and it can be overwhelming at the time which was the case with me. But I was able to overcome that, so maybe there are options available that the patients can consider.

Is It Expensive to Participate in a Clinical Trial?

Is It Expensive to Participate in a Clinical Trial?  from Patient Empowerment Network on Vimeo.

Is there a financial cost to participating in a clinical trial? Dr. Seth Pollack explains how clinical trials participation is billed and potential financial impacts.

Dr. Seth Pollack is Medical Director of the Sarcoma Program at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University and is the Steven T. Rosen, MD, Professor of Cancer Biology and associate professor of Medicine in the Division of Hematology and Oncology at the Feinberg School of Medicine. Learn more about Dr. Pollack, here.

See More from Clinical Trials 101

Related Resources:

Is a Clinical Trial a Last-Resort Option?

Are Clinical Trials Safe?

Are Clinical Trials a Logistical Nightmare?


Transcript:

Katherine Banwell:    

Is this fact or fiction; it will be expensive? Dr. Pollack?

Dr. Seth Pollack:       

That’s fiction because the way the clinical trials work is we go through everything very carefully to figure out what things are standard and what things are unique to the clinical trials. So, if you are getting chemotherapy, you’re going to need blood work, you’re going to need the chemotherapy drugs, you’re going to need some sort of imaging, CT scan, or whatever your doctor would do.

And all those sorts of things are considered standard, so your insurance company is built for those. Then there’s a bunch of things that are considered research. For example, there’s special research bloodwork, maybe there’s an investigational agent that’s being added to standard chemotherapy. Those things are billed to the study, so you don’t actually have to pay anything extra, it’s just like you’re getting the normal treatment as far as you’re concerned. I mean, that’s the way it always is, and I haven’t had any of my patients ever get into real problems in terms of the finances of these things. It always works very straight forward like standard therapy.

Is a Clinical Trial a Last-Resort Option?

Is a Clinical Trial a Last-Resort Option?  from Patient Empowerment Network on Vimeo.

Are clinical trials only meant as a last-resort option? Dr. Seth Pollack debunks this common clinical trial misconception and explains why he feels patients should participate when the opportunity arises.

Dr. Seth Pollack is Medical Director of the Sarcoma Program at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University and is the Steven T. Rosen, MD, Professor of Cancer Biology and associate professor of Medicine in the Division of Hematology and Oncology at the Feinberg School of Medicine. Learn more about Dr. Pollack, here.

See More from Clinical Trials 101

Related Resources:

Is It Expensive to Participate in a Clinical Trial?

Are Clinical Trials Safe?

Are Clinical Trials a Logistical Nightmare?


Transcript:

Katherine Banwell:    

Right. And another concern that people have is; clinical trials are my last resort treatment option. What do you say to that Dr. Pollack?

Dr. Seth Pollack:       

Yeah, no. That’s a common misconception. So, we like to have clinical trials for every phase of the patient’s cancer journey because we’re trying to make every single part of the cancer journey better. So, I think a lot of people think that, okay, when they hit their last resort that’s kind of the time to try something new. Even in the very earliest parts of the cancer journey, even in the diagnosis phase sometimes we’ll have clinical trials where we’ve tried different images, modalities, or look at things in a different way in terms of the biopsies.

But then, in terms of the cured-of treatments, when somebody is in the cured-of setting we don’t usually try something very brand new. But a lot of the times we’ll try something that is very affective for patients at the end, and we want to try and make the cured-of strategy even better. So, a lot of the times for those patients we’ll have new therapies that are very safe and established that we’re trying to incorporate earlier into patients’ treatments because we know they work really well, right? And then, even in patients who have incurable cancer a lot of times it’s better to try a clinical trial earlier on just because sometimes the clinical trials have the most exciting new therapies that are bringing people a lot of hope.

And a lot of the times you want to try that when you’re really fit and when you’re in good shape. So, that’s why I think that you really want to think about doing a clinical trial when the opportunity arises.

Katherine Banwell:    

Yeah. Beause it could be beneficial to you and it’s certainly going to be beneficial to other people.

If I Participate in a Clinical Trial, Will I Be a Guinea Pig?

If I Participate in a Clinical Trial, Will I Be a Guinea Pig?  from Patient Empowerment Network on Vimeo.

Does participating in a clinical trial make you a “guinea pig” for new treatments? Clinical researcher, Dr. Seth Pollack, provides a clear explanation of clinical trial safety protocols.

Dr. Seth Pollack is Medical Director of the Sarcoma Program at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University and is the Steven T. Rosen, MD, Professor of Cancer Biology and associate professor of Medicine in the Division of Hematology and Oncology at the Feinberg School of Medicine. Learn more about Dr. Pollack, here.

See More from Clinical Trials 101

Related Resources:

Is It Expensive to Participate in a Clinical Trial?

Are Clinical Trials Safe?

Are Clinical Trials a Logistical Nightmare?


Transcript:

Katherine Banwell:    

Well, I’d like to address a list of common concerns about clinical trials that we’ve heard from various audience members prior to this program.

And this is probably the most common; I will be a guinea pig. Dr. Pollack, how do you respond to that?

Dr. Seth Pollack:       

Yeah. I know that is a common concern. I mean, I think the thing that people have to understand about clinical trials is there is just so much oversight that happens for these clinical trials. Every document, every procedure, is scrutinized by multiple committees. There’s a scientific review committee, there’s a review board, IRB, that reviews these. Many of these trials are reviewed by the FDA and they’re reviewed by your doctor and your doctor’s colleagues that are also participating in the trial. So, every detail is discussed at length.

In fact, a lot of the times there’s a lot more structure to being on the clinical trial than just routine clinical care because they’ve thought so thoroughly about when everything needs to be done and what the right timing of is for the various procedures.

A Patient Shares Her Clinical Trial Experience

A Patient Shares Her Clinical Trial Experience  from Patient Empowerment Network on Vimeo.

Sujata Dutta, an empowered patient advocate, explains why she felt participating in a clinical trial was the right decision to treat her myeloma.

Sujuta Dutta is a myeloma survivor and empowered patient advocate, and serves a Patient Empowerment Network (PEN) board member. Learn more about Sujuta, here.

See More from Clinical Trials 101

Related Resources:

If I Participate in a Clinical Trial, Will I Be a Guinea Pig?

Are Clinical Trials a Logistical Nightmare?


Transcript:

Katherine Banwell:    

Sujata, I understand that you went through a series of treatments for your multiple myeloma, which is a type of blood cancer, including a stem cell transplant.

At what point did you and your doctor consider a clinical trial might be best for you?

Sujata Dutta:  

Yes, you’re right. I was diagnosed with multiple myeloma in December, and so the line of treatment or the standard protocol is that you go through what is called an induction therapy. Which is like a few cycles of chemotherapy which get you ready for a transplant. And the transplant, the hope is that it kind of washes away, or cleans off all the cancer cells for you, or at least brings the cancer to a very, very minimal level. And I did go through six rounds of chemo which got me ready for the transplant, and I went through the transplant in June of 2020. However, I’m amongst the very few, small percentage of people that just did not respond with the transplant. So, I was at the same point as where I started. So, it was a little bit disappointing, but my doctors were there to help me understand the situation. It was a hard pill to swallow.

But anyways, there were options. And that’s what I feel very hopeful about with multiple myeloma is that there are so many options available today through treat, or to at least bring the disease under control to a very large extent. And I expressed a desire to be in a trial very earlier on, so my doctor did know that I would lend a year or two listening to what the trials were. And it just so happened that there was a trial that was very apt in my situation, somebody who had gone through a transplant. They have some criteria, and I was able to meet that criteria. And so, for me, it seemed to be the right decision to make. And so, that’s how I agreed to be part of the trial.

Katherine Banwell:    

Can you go into some detail about why you thought a clinical trial was a best thing for you?

Sujata Dutta:  

Yeah. So, initially before knowing much about the strain that I’m a part of, I just had the desire to be part of a trial because I was always in awe of patients who had been in trials before me.

And because of whom I was benefiting. But whatever regiments, medications, combos, whatever was happening. And so, from that perspective I always wanted to give back in some way. Unfortunately, we are having more people being diagnosed with cancers, with multiple myeloma, and so I was very motivated to do something for the community that I was now part of. And so, I had my transplant at Mayo, and I knew that they had a whole bunch of trials and had access to different types of trials. So, that was my first motivation and it just so happened that, as I said, my experience with transplant didn’t go the desired way. And so, when I heard that there was a possibility that I could be part of a trial, I kind of leaned into actually agreeing to be part of that.

Katherine Banwell:    

Yeah. It sounds like that was the next step for you.

Sujata Dutta:  

Yup.