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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!!

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mwarsha | @mwarsha | Jul 4, 2023
In reply to @edmond1971 "I agree with all the information above and it nicely converges on self-education is crucial for..." + (show)
@edmond1971

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!

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These are all great points. At 52 years old and very healthy (besides the cancer 😐), longevity and quality of life are very important. There are pros and cons to every procedure it seems which makes it tricky. We will continue to self educate and also listen closely to what the doctors say.

Thank you for taking the time to reply and for your suggestions.

REPLY
rgillis | @rgillis | Jul 4, 2023
In reply to @philipbrachko "I would ask, what are my options, and the timeline for each, and how much time..." + (show)
@philipbrachko

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.

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pianoman, thanks for the sensible outline. just diagnosed 65 yo, gleason 9. bone scan and pelvic scan in 2 days. everyone seems to have a sense of urgency. i wish marketing was stripped from research results on google. its hard to tell real from not so real.

REPLY
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pianoman | @philipbrachko | Jul 5, 2023
In reply to @rgillis "pianoman, thanks for the sensible outline. just diagnosed 65 yo, gleason 9. bone scan and pelvic..." + (show)
@rgillis

pianoman, thanks for the sensible outline. just diagnosed 65 yo, gleason 9. bone scan and pelvic scan in 2 days. everyone seems to have a sense of urgency. i wish marketing was stripped from research results on google. its hard to tell real from not so real.

Jump to this post

I'm 73 was diagnosed 1 year ago GS 8, regional metastatic PC. Went on ADT, zytiga and eligard, In one month, PSA went down from 60 to 0.08, next month < 0.04 which is considered undetectable. Still is undetectable as of 2 weeks ago. The ADT gave me a year to do tons of research and with this support group, I just made the call to get RALP. done in 2 weeks. I felt it was best for me. Stay tuned.

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bens1 | @bens1 | Jul 8, 2023

Mwarsha: you might want to also to talk with Dr Nagar at Weill Cornell/ny Presbyterian in New York City about the viewray MRIdian option. Mayo does not have that option but it is worth considering. 5 treatments, 2 mm margins vs larger impact on healthy tissue.combo mri/radiation unit. The more healthy tissue impacted the more chance of side effects. At the minimum, ask Mayo about the margin differences with treatment options and impact on quality of life.

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