Sorry if this question has been asked often. My Dad (just diagnosed w/ Gleason 10) just had his scans this week to check for spread. He has his appointment on Monday to go over the findings and what I assume will be preliminary discussions for next steps and treatment. Surgery is already out of the question (from what his doctor said). Hoping he can do radiation.
Any tips for this meeting? Any questions you wish you had asked at that meeting?
Unfortunately where we are (just outside of Toronto), it is difficult to get second, third opinions - it’s a process to retrieve all records/tests and get referrals to hop around for other opinions - wait times for treatment are also quite long - so I want to ensure we ask the right questions and explore our best options before proceeding with whichever treatment is recommended by the oncologist.
Thanks so much for any insight or guidance.
*Also I should mention this is still a very big shock to my family and my Dad has barely said a few words about it to us and is carrying on as usual (which is great - however he’s still in the shock/denial stage) and he will not read up on any information - which is why I’m doing the research and advocating for him.
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Thank you! I wholeheartedly believe in the health team approach, bringing together different expertise, experiences and perspectives - I don’t know if this will be offered, but I’m going to ask.
I can only tell you that there is no need to panic. I just passed 10 years since Dx and am still travelling and reasonably active. I'm similar age to your dad. I have only had radiation to the prostate and lupron (SOC was more basic 10 year ago). I'd go for more broader radiation treatment if I was to go through it again. Read my profile.
I would suggest reading the scan report in great detail (if you received in advance, a must), looking up vague terms of you have to.
I've been having scans for 5.5 years now, and I have asked an increasing number of specific questions.
I had a PET scan on 1/2/2024, the first since 9/2021 (though I've had several MRIs and CTs in between).
The recent scan report was written as vaguely as usual, indicating stability, but perhaps mutedly. However both my RO and my MO had trouble seeing uptake in two major places indicated by the radiologist, and they indicated the uptake on the few remaining places was fainter than on the 2021 PET scan, whereas the scan report indicated or greater up take. The RO was guarded in his comments to me, but my MO puzzled over the two sets of scan images before indicating that the radiologist seemed to have written the report more negatively than the images indicated.
So push a little, and keep pushing on successive scans.
Love this advice! The biopsy results were extremely vague and the urologist didn’t clearly break down the results for us. I’m going to ask more questions at the scan follow-up. Thanks!
Where are you living?You mentioned just outside Toronto. I would highly recommend my husband's Oncologist, Dr Carrie Yeung. She is out of Oshawa and Peterborough, Ontario.
My husband has been under her care for over 4 years and she is excellent.
We’re in Oakville..so Oshawa would be a bit of a hike, but thanks so much for the insight - she sounds wonderful. Glad to hear your husband is doing well under her care.
Best wishes for your father as he heads down this journey.
Please remember denial needs to be met with patience. Decisions made while in denial are really bad decisions. In the journey he is about to embark on bad decision have bad outcomes.
None of this stuff is fun, ADT sucks but saves lives, Radiation is not bad at first, but look out for the down the road stuff. He will have some side effects and denial will just make him quit when they come.
Next thing to remember is listen to the doctors and ask plenty of questions.
I had to ask to see the films of my PET SCAN. A lot of heads spinning and looking at each other and such as it appears to be not normal. Finally the RO had his PA show me the places that lit up. I will ask for the same again.
If your dad can’t talk about it, it sounds like to me, he is overwhelmed. This includes maybe he has fear that may be paralysing him temporarily? I understand this personally.
I think fear is normal and ok. It gives us strength and energy to fight for life and attack the cancer. The trick is to not allow yourself become too afraid. If you let yourself get too afraid, you don’t think straight. If you are to survive, you must think straight.
The key in many anxiety producing situations in life is information. Many times you become afraid of something. But if you study up, you discover many pathways to solve your problem or at least a partial way out. This drops fear and anxiety. This may allow your dad to start fighting back with you.
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