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What to Expect As a Prostate Cancer Care Partner

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Published on November 20, 2019

Katya Shirokow joined Patient Power to share her experience stepping into the care partner role for her husband who is living with prostate cancer. During this interview, Katya discusses ways to provide support and how to help during appointments. Watch as Katya gives advice for communicating with your loved one’s healthcare team, dealing with sexual side effects as a partner and the unexpected aspects of navigating prostate cancer care.

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Thanks so much for sharing this event online. I just started my third year of fighting advanced prostate cancer and the content of this event is really encouraging.

— Ken, on Facebook

Transcript | What to Expect As a Prostate Cancer Care Partner

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.

Andrea Hutton:

Hello.  I'm Andrea Hutton.  I'm the community manager for prostate cancer for Patient Power, and I'm here today with Katya Shirokow who has agreed to talk to us about being a caregiver for a man with prostate cancer.  Katya's husband, Rick, did an interview with us just a few minutes ago, and we dragged her in here to talk to us about what it's like to be the caregiver.  

Katya Shirokow:

Well, as with all caregivers, I saw it as my role to have clearly in mind all the questions that we had between the two of us and which under the circumstances my husband might have been too distracted with other matters including potential for upcoming surgery to think of asking.  So I came in with our list of questions and my specific questions and a somewhat more detached relationship to his surgery since it wasn't going to happen to me, and therefore able to perhaps think more clearly what to ask before we made our decision. 

Andrea Hutton:

So what kinds of questions do you think the partner asks that the patient doesn't necessarily?  What did you focus on differently? 

Katya Shirokow:

Well, because prostate cancer involves sex and it affects the sex life of the man that has it, those were the questions that we were most concerned about.  And it's perhaps easier to ask dispassionate questions about sexual matters when it isn't happening to you directly.  I felt the freedom to ask those questions of my husband's doctors, and also perhaps because the surgery wasn't happening to me I felt I could give a little bit more perspective on the options to surgery, the alternatives to surgery. 

We found that there were—there was I wouldn't say pressure, but there was a lot of suggestions from our friends and other people that had had prostate cancer in various forms to try this option versus another option, and so I felt it was especially important to be the other person who could help think through rationally what are the pros and cons of each option. 

Andrea Hutton:

So that brings up a really good point, because I think that a lot of patients enter the doctor's office assuming that the doctor will tell them exactly what they're supposed to do, and they're quite surprised to find out that there are options and they have to make those decisions.  So how do you even begin to walk through the options? 

Katya Shirokow:

Well, that's quite right, and I do wish that the medical system were different.  We walk in completely unprepared to make those decisions, and for all kinds of reasons doctors are not willing to even make a suggestion.  They say you have option one, two and three, and you choose, and they tell us to choose with having no tools to make an informed decision.  So it's a big objection that I have to our medical system.  

I would prefer if—but anyway, I would prefer if the doctor gave his opinion even if he said this is my personal opinion and if it were me I would do this, but that wasn't the case.  And quite frankly what we found was as we interviewed the doctors that were going to look after my husband under one of three scenarios of course the doctors, the surgeon was kind of gently but not obviously sort of biased in favor of the surgery, the radiation guy was talking up all the benefits of using radiation, and the chemo guy the same.  

Andrea Hutton:

How did you figure out how to navigate through the conversation about sexual side effects and incontinent side effects when your—if your husband is a little bit squeamish about it then you find the doctor is a little squeamish about it, what advice can you give to the partner to say this is how you can talk about it? 

Katya Shirokow:

Be direct.  If it's something important to you and it should be, and I think in my experience it's got to be important to every man, then it's up to his partner, his sexual partner to say, all right, is he going to be able to have an erection after this?  What can we expect?  What can you do to improve the chances that he will be able to have an erection afterwards?  And what about sildenafil (Viagra), and what are the side effects of that?  Etcetera, etcetera, etcetera.  

And I felt that perhaps because I am part Swedish I felt less squeamish about asking it.  I did find that the doctor was himself rather uncomfortable discussing it when at the end of the day apart from of course surviving the cancer, which is of course the most important thing, but quality of life after that is key and—and for men having a sex life afterwards. 

Andrea Hutton:

After surgery, what was the biggest surprise?  Like your partner coming—your husband comes home after having the surgery.  They give you a sheet of, you know, whatever the instructions.  How accurate is that?  What were the biggest surprises? 

Katya Shirokow:

Well, the biggest surprise was that he did not—that we did not receive more information about really what it's like to recover.  Yes, he was given information about how to take care of the wound, how to handle the, oh, dear, the bag where the urine goes for several days until that heals up.  We really weren't given—I feel we were—he had excellent surgeon, but the after care, I wish that somebody had taken more time to explain not only how to take care of the actual surgical wound but also what to expect in terms of length of recovery, understanding that it varies with individuals. 

But to be warned that, all right, you're going to lose weight or you could lose weight, which is what happened, that it will be several months, that it's a seriou—‑five hours of surgery means no matter how fit and how healthy you are it takes many months to recover from.  So I wish that we had understood the‑‑better what was involved in the recovery period and how long it would take to get his—get our sex life back and what we could do to help it go faster, improve faster.  All those things would have been helpful.  And I would imagine that a nurse or even a service like yours will be able to help people in that regard. 

Andrea Hutton:

So to that end, what advice do you have?  What are the kinds of things that you can do in that interim period while you're trying to help your partner get back on track and get back to whatever the best place they can be sexually is.  Like what advice do you have? 

Katya Shirokow:

Be extremely loving.  There are many ways to make love.  And make him feel that he's a sexually desirable partner even when certain parts of his body are still recovering.  So be loving, and it comes back. 

Andrea Hutton:

Do you talk about it to your girlfriends, your friends?  I mean, do you—did you admit that it was going on to begin with?  Do you talk about how it has affected your life, or are you more private about it?  And do you feel like talking about it is something that people refrain from doing when it's prostate cancer? 

Katya Shirokow:

Sure, and I did.  I respected Rick, and so—I respected my husband, and so to the people that he felt comfortable discussing it with I would pursue the conversation if asked or if it was appropriate, but I did not bring it up just—I didn't bring it up in the same way that I might have brought up a shoulder surgery or a nonsexual surgery, because sex is still kind of taboo in our country. 

I would have loved if there were more online resources and more useful way of getting information that we discovered along the way, but I would have wanted some kind of stamp of approval and not just discussion with friends anecdotally or—and so forth.  So again I think that the service that you are providing will be an excellent resource for people like me that just want to get as much information as possible before walking into a doctor's office and so can arm myself and themselves with the right questions to ask. 

Andrea Hutton:

Thank you.  Thank you so much for joining us and being willing to share all this information, and I know that you will help other people who are in the same circumstance.  

Katya Shirokow:

My pleasure.  Thank you. 

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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