What questions to ask in first meeting regarding treatment decisions?

Posted by mwarsha @mwarsha, Jul 3, 2023

We have our first post diagnosis meeting with our Mayo doctor on Wednesday (transferring from local urology clinic). What do you recommend asking in this first meeting?

Some background: Over the past year, my husbands (age 52, otherwise very healthy) psa went from 4.? To 7.4 to 10.3. His MRI last November did not show cancer, despite his urologist saying his prostate was large and hard. Did not do biopsy at that time. Next psa test was 10.3 in 5/23. This was followed by 4k test which came back 80 (indicating aggressive). Biopsy done in June. 5/12 samples tested positive for cancer. 3 of those were 3+4, one with PNI in one. The other two were 3+3. PSMA Pet does not show any spread. Decipher results pending.

We want to let the Mayo doctor lead the conversation as to next steps, but also want to ask good questions. Based on your experiences, what should we focus on given we know there will be limited time.

Thank you so much for your insight!!

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

Sounds like you are going into a conversation already prepared for discussion about treatment and would expect surgery. Learning more about who will do the surgery, their experience, and development of bedside manner are important. Ask about lymph nodes in the area, and get comfortable talking about all risks.

REPLY

See if they can refer him to Dr Woodrum, Mayo interventional radiology, who does all kinds of focal therapy, or see if the Uro does any focal therapy. So that is one set of questions, all asking about available focal therapy and referral to one if they don't do it themselves. It is super hard to get urology to talk focal, even though some Mayo docs do it.

REPLY
@bjroc

See if they can refer him to Dr Woodrum, Mayo interventional radiology, who does all kinds of focal therapy, or see if the Uro does any focal therapy. So that is one set of questions, all asking about available focal therapy and referral to one if they don't do it themselves. It is super hard to get urology to talk focal, even though some Mayo docs do it.

Jump to this post

Thank you for this suggestion. Do you know if this doctor is in Rochester, MN or one of the other Mayo Clinic’s?

REPLY
@mwarsha

Thank you for this suggestion. Do you know if this doctor is in Rochester, MN or one of the other Mayo Clinic’s?

Jump to this post

He is in Rochester, MN, works out of both hospitals there (St Mary/Mayo and regular Mayo).

REPLY

I would ask what are the chances of a recurrence (biochemical recurrence) after surgery or radiation. If recurrence does occur what typically is the treatment and does it differ depending if you had surgery or radiation?

REPLY
@marshallfeller

I would ask what are the chances of a recurrence (biochemical recurrence) after surgery or radiation. If recurrence does occur what typically is the treatment and does it differ depending if you had surgery or radiation?

Jump to this post

To sort of add to this, and I remember this being a very large part of my decision,

I was told by my "team" that if the first treatment is Radiation and that didn't work as hoped, the next step could be a "salvage surgery" which, would be made much more difficult by the damage done by the radiation. It becomes a VERY specialized surgery at that point.

So for me, always having a backup plan is important. I did the surgery , which I tolerated pretty well. Then the recurrence happened (sort of, we didn't give the PSA a chance to climb very high and went the aggressive approach). I went into salvage radiation which I also tolerated pretty well.

Sooo....I'd ask your team questions to determine if this is still (or ever was) true and their input on what would be the back up plan.

Me to surgeon: If it was you, which way would you go?
Surgeon : I'd start with the surgery.
....two weeks later....
Me to RO: If it was you which way would you go?
RO: I'd start with the radiation

Some team....
Having said all that I'm about 15 mos post radiation with PSA of

REPLY

I would ask, what are my options, and the timeline for each, and how much time do I have to make a decision. And do your own research.

REPLY
@bjroc

See if they can refer him to Dr Woodrum, Mayo interventional radiology, who does all kinds of focal therapy, or see if the Uro does any focal therapy. So that is one set of questions, all asking about available focal therapy and referral to one if they don't do it themselves. It is super hard to get urology to talk focal, even though some Mayo docs do it.

Jump to this post

That’s interesting that they wouldn’t want to talk about it given that they do it. I will be sure to add this to my list. Thank you for the doctor referral as well.

REPLY
@mwarsha

That’s interesting that they wouldn’t want to talk about it given that they do it. I will be sure to add this to my list. Thank you for the doctor referral as well.

Jump to this post

Thing is what you will find is every single doctor recommends what they do. If all their effort has been surgical they advise that, all radiation training then they advise that. So focal therapy has few advising and advocating for the eligible right now, just kind of the way the field got setup. So just be aware of that and that they all advise what they do as best option, and the burden falls on you. Spend lots of time getting opinions. Also be sure to get opinions outside Mayo. Mayo is top, but they tend to put people in study groups and the study has parameters that you may not even know or be aware of, and you are lumped into it due to the study even if not optimal for you. I don't think it is a huge concern but just be aware they have study parameters they must follow, so you want real good opinions outside Mayo too.

REPLY

I agree with all the information above and it nicely converges on self-education is crucial for being informed and prepared for discussing prostate cancer. What you also need to bring to the table is something the health team has no insight into it, that being the overall outlook of the life for the patient. Surgery comes with risks of impotence and incontinence, how would either of those effect the quality of life of the patient? What is the life expectancy of the patient, no one enjoys this conversation, but if you are responsibly planning your financials, then there has to be a plan in place. What is the family history of cancer, sometimes this can take multiple requests to get your family to share the specifics. --- Overall, the topic of prostate cancer is where you need to be self-educated and build a great relationship with your health team, but the topic of your own life is something you need to bring to the table. You are going in the right direction, keep going!

REPLY
Please sign in or register to post a reply.