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How to Manage Prostate Cancer Side Effects & Reduce Suffering

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Published on December 17, 2020

Medical Advice for Managing the Side Effects of Prostate Cancer

One of the most important factors in managing and finding relief for prostate cancer side effects is speaking honestly with your doctor about what you are experiencing. Having an open doctor-patient relationship is a crucial step to take, but it can take practice to feel comfortable. Hear two doctors discuss how transparent doctor-patient relationships can improve prostate cancer outcomes and reduce suffering, along with other tips for managing side effects.

In this final segment of our Prostate Cancer: Answers Now series, Patient Power co-founder and host Andrew Schorr will speak with Dr. Atish Choudhury, MD, PhD, Co-Director of the Prostate Cancer Center at Dana-Farber Cancer Institute, Rick Davis, AnCan Founder and Peter Kafka, AnCan Prostate Cancer Moderator. Follow along as they discuss how to manage prostate cancer with the help of your care team, current treatment options and how to ensure the best quality of life for patients.

This program is sponsored by Bayer. This organization has no editorial control. It is produced by Patient Power. Patient Power is solely responsible for program content.


Transcript | How to Manage Prostate Cancer Side Effects & Reduce Suffering

Andrew Schorr: Greetings, I'm Andrew Schorr from Patient Power. Thank you so much for joining us for this live webinar, as we discuss prostate cancer. First of all, we have along with me, we have two men living with more advanced prostate cancer from AnCan and there's Rick Davis. Rick joins us from Tubac, Arizona down near the Mexican border. And then also we have Peter Kafka, who's the board chair of AnCan, and Peter joins us from a wonderful sounding place, Haiku Maui. So, Peter, thank you for being with us.

And then of course we have a noted expert in prostate cancer joining us. And that is Dr. Atish Choudhry, and he's Co-Director of the Prostate Cancer Center at Dana-Farber Cancer Center in Boston. Dr. Choudhury, thanks for being with us. Are you ready to take our questions?

Dr. Choudhury: Absolutely. Thank you so much for this invitation. I'm really excited to be here.

Peter Kafka: My question to you is, is patient anxiety on your radar? And what successful strategies have you developed to address this with your patients and diffuse it?

How Can Prostate Cancer Patients Manage Anxiety?

Dr. Choudhury: Yeah, patient anxiety is actually incredibly critical along every step along the path of prostate cancer from initial diagnosis to finding out what the first next steps are to then finding out what the goals of care are as the disease advances. For men with more advanced prostate cancer, it's very important for them to realize that the initial treatments lead to be quite successful, and then there's a lot of uncertainties that are going to crop up in the future.

And I try to be very upfront with what to expect as far as side effects of treatment and expectations, as far as what the treatments are going to do, how long they're going to work, how your body's going to feel, and then what men can do themselves, as a self-empowerment in terms of diet and exercise, maybe some meditation, maybe counseling with their spiritual leaders or whoever to help manage all the anxieties and psychological problems that can come with a prostate cancer diagnosis.

Peter Kafka: So, another area that men have extreme anxiety and concern about when diagnosed with prostate cancer, are the issues of erectile dysfunction and urinary problems. How do you counsel men with ED or urinary issues? It can often change their life. What's your advice for that for men?

What Is Your Advice for Patients with Erectile Dysfunction and/or Urinary Problems?

Dr. Choudhury: Absolutely. Even after a prostate cancer diagnosis and even after men are sent to us in medical oncology, we interface actually very closely with our colleagues in urology because we do really need their assistance for help in the management of both urinary and sexual issues. So, for urinary issues, we ourselves are very comfortable, sending men to physical therapy because it turns out that properly performed pelvic floor physical therapy really can help many men with urinary incontinence issues.

So, for example, for the urinary obstructive symptoms, we might need to refer for the urine flow study, cystometrogram, we might need to consider even a TURP procedure to open things up. So that's obviously beyond the purview of what we would do in medical oncology.

Similarly, for erectile dysfunction, certainly we can prescribe Viagra, Cialis, and we give instructions on how they're used, but for things beyond that, in terms of injection therapy, is vacuum pump therapy, is consideration of implant surgery, we have a specialized department called Men's Health within the urology department at Brigham and Women's Hospital.

And this is an incredibly useful resource for the patients and for us to be able to refer these patients, to talk about different ways and mechanisms to restore some of these functions. Similarly for urinary incontinence, if the pelvic floor physical therapy isn't successful, then certainly there are surgical approaches that we need our urology colleagues to be involved with that.

But beyond the actual erectile dysfunction issues, there are a lot of other issues that come along with the sexual dysfunction, that come from problems psychologically. Feeling like less of a man, feeling less virile, having troubles with intimacy with your partner. And there, we often will refer our patients to sexual health counseling. And the men, as you said before, bullheadedly try to deal with these things, but the ones who acknowledge that this is a problem and are willing to take the support from sexual health counseling, in my experience have been quite benefited from it. So it's a multi-pronged approach.

Rick Davis: So, I want to flip this on you, Dr. Choudhury, and ask you whether men who have been on somewhat longer-term hormone therapy should feel any comfort from the TMPRSS2 suppression and the PCF studies. And now what they're studying at VA, where we found that hormone therapy might suppress TMPRSS2 and you'd get some protection from COVID.

Dr. Choudhury: Yeah. So, my perspective on that is that that's likely to be true that it seems that TMPRSS2 is involved in the entry of the virus. But I think what that really might prevent is the most severe complications of COVID. But certainly, I'm not aware of any data that say that men on hormonal treatments are not subject to those complications at all. It might just lower the risk.

And certainly, if you get it, you'll probably still be subject to a lot of really terrible feelings. The profound fatigue and the difficulty breathing and a number of people who've had it have talked about this sensation when you go to bed of not knowing whether your body's going to hang in until the next morning. And that sensation really strikes a lot of fear in a lot of different people. And even if you're on hormonal treatments, it's not a gamble that I would say is worth taking.

Rick Davis: Yeah. I mean with that said, because it’s back to anxiety. But I want to stick on hormone therapy for a while because, well, I did two and a half years of hormone therapy myself. So, I have some experience and I always felt that the doctors, all the different doctors involved in prostate cancer treatment never prepared men properly to place them on hormone therapy. I mean, there are so many side effects, metabolic syndrome, brain fog, muscle wasting, hot flashes, water retention, and so on and so on and so on. What do you do to educate men before you put them on hormone therapy?

How Can Doctors Prepare Patients for the Side Effects of Hormone Therapy?

Dr. Choudhury: I mean, starting men on hormonal therapy is definitely one of the longest office visits as you might imagine because there is a lot, a lot to go through. And so, I think it starts really with a sort of pre-treatment assessment of where men are. What's their diet like, what's their exercise like? What is their social situation like? What are their hobbies?

Are they in a relationship? Are they sexually active? Are they not sexually active? Do they have a history of depression? Do they have a history of anxiety? And once you get to know a man a little bit, then you can try to focus that conversation a little bit more on the pieces that are most relevant to the person in front of you. But I think that you do talk about all of those things that you'd mentioned.

But I do, upfront talks about the things that we can do to try to intervene on a lot of this, because a lot of men hear all of this and just say, "I'd rather die." And so you have to give people a perspective that the side effects affect different people in different ways. And it's hard to anticipate what an individual is going to experience right off the bat. And then you just say that it's a partnership and it requires a lot of communication and that we have a lot of experience with a lot of men managing all of these things.

We've learned, when I've seen men who've been treated other places, they were never even told that there are drugs available for hot flashes, for example. And so that's something that I actually introduce right off the bat. If you have hot flashes, if you have depression, it's very normal and expected. And we have medications that we use to help a lot of men through those pieces.

As far as the metabolic complications, that's a very tricky conversation because the truth of the matter is that lifestyle has so much to do with those sorts of complications. That a healthy diet and eating less than what you would at baseline while you're on hormonal treatments and doing a regular exercise, whether that's cardiovascular exercise and muscle strengthening exercise, that's actually the most critical way to keep the mood up, to keep the energy up, to sleep well at night, to prevent the weight gain and the metabolic complications, to keep the muscles strong and keep the bones strong.

And in a way, it feels like we're passing off some responsibility to the patient, but it's certainly true. It's just the most critical aspect of being on hormonal treatments is maintaining a healthy lifestyle.

Rick Davis: For those who don't have doctors who have helped them, where would you recommend, they find information? How would you recommend they educate themselves?

Dr. Choudhury: That's a little bit of a loaded question because the easiest way is you can do internet searches, but as you know from your perspective, there are so many things that you find on the internet. And a lot of horror stories that come up for, again, the most extreme sorts of sets of side effects and complications. I feel like the best resources again are probably groups like yours.

Peter Kafka: ADT or hormone treatment is, in my experience, is a pretty unique therapy because it's not just the patient that's being treated, the effects it has on the family are astounding. And I don't know if this is adequately addressed particularly in terms of one spouse or sexual partner or whatever. It has profound changes in the relationship. What strategies or ways are there to involve that spouse or partner of a patient so that they're not just left on their own to deal with these changes? So, to have a better understanding and some sense of compassion and where this is headed and what's around the corner.

Do You Have Any Advice for Care Partners Ahead of Hormone Therapy?

Dr. Choudhury: That's a great question. And, so many complex dynamics to try to sort through especially in the context of COVID because as you know, the spouses aren't physically in the room with the patients for the follow-up visits. So we do try to involve spouses on telemedicine visits and certainly by just a phone call or including them on Facetime during the office visits. And again, we're very privileged that we have dedicated sexual health counseling and couples counseling for intimacy issues during androgen deprivation.

We have social work services to try to investigate people's family situations and try to understand the perspective on the caregivers. But we do also rely on the caregivers, their own support networks, and their own physicians to help manage real severe symptoms or complications associated with having to help manage the situation of their loved one with cancer.

Andrew Schorr: So, once ADT is no longer used do the side effects we've been talking about, do they go away?

After a Patient Stops Treatment, How Long Does it Take for Side Effects to Subside?

Dr. Choudhury: That's actually a great question. And, I would say that it's really different for different people. So, it kind of depends a little bit on how long you've been on androgen deprivation because the six months of androgen deprivation that we used in localized prostate cancer, you expect kind of a sooner recovery from the side effects than for people who've been on for two or three years.

And most men will say that the hot flashes get much better with testosterone recovery. Though, I've had a few patients who say that, that's an ongoing issue, even after a longer period of time. I've had some men tell me that they've experienced more breast discomfort during the period of testosterone recovery, which was surprising to me at the beginning, but I've had a few men tell me that.

And again, this is really where the lifestyle comes into play because while you're on the androgen deprivation therapy, if you're eating well and exercising and maintaining your weight, then it sort of primes your body to when you maintain that lifestyle with testosterone recovery to actually make noticeable strides in terms of losing the weight on your gut and to the, and in the muscles.

Andrew Schorr:  Could you talk a little bit about the management of cognitive issues and paying attention to it?

Dr. Choudhury: What we do recommend is referral for formal neuro-psychological testing, so that you can actually have an inventory of how you're doing and a baseline so that we can kind of manage changes over time. And so many of our men do carry a diagnosis of mild cognitive impairment. And you can counsel them as you go along of what that sort of means and what that will project to over time.

But again, remaining physically active and cognitively active and socially active and maintaining hobbies, I think that's the best way to try to maintain your cognitive health to the degree possible. But, when there's something that's noticeable, especially to the loved ones, I think we do need help from our neurology colleagues in terms of the management.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

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