Questions to ask Oncologist at first ... - Advanced Prostate...

Advanced Prostate Cancer

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Questions to ask Oncologist at first appt to review scans/talk treatment

LDC2024 profile image
19 Replies

Hello,

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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LDC2024 profile image
LDC2024
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19 Replies
God_Loves_Me profile image
God_Loves_Me

Many times, oncologists are not recommended to radiation oncologists. In my suggestions, build a team of doctors that includes

Radiations oncologist

Urologist

Medical oncologist

Primary physician

Cardiologist - Many medicines have the highest side effects related to the heart.

Just meet one by one and learn the best treatment options for you.

LDC2024 profile image
LDC2024 in reply toGod_Loves_Me

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.

Tall_Allen profile image
Tall_Allen

It sounds like he will go over the results of the bone scan/CT and options based on that. Take good notes.

Birdwood profile image
Birdwood in reply toTall_Allen

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.

Birdwood profile image
Birdwood in reply toBirdwood

Oops a mis send

LDC2024 profile image
LDC2024 in reply toBirdwood

Wow that’s great to hear! thanks so much for sharing. Hoping my Dad has good years ahead, like you.

WisdomSeeking profile image
WisdomSeeking

I would ask the doctor:

1.) Whether he's willing to communicate via email.

You may check a post on Tall_Allen's blog:

prostatecancer.news/2017/12...

2.) Can your dad get a (PSMA) PET scan?

See a post on Tall_Allen's blog:

prostatecancer.news/2016/12...

And as Tall_Allen already replied to you: take good notes.

LDC2024 profile image
LDC2024 in reply toWisdomSeeking

Thank you so much! This is very helpful.

dhccpa profile image
dhccpa

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.

LDC2024 profile image
LDC2024 in reply todhccpa

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!

Docker53 profile image
Docker53

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.

LDC2024 profile image
LDC2024 in reply toDocker53

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.

healthunlocked.com/advanced...

This might be of some help understanding both now and in the future. I printed it out and keep it with my husband’s medical notes

LDC2024 profile image
LDC2024 in reply to

thank you so much! This will be very helpful.

j-o-h-n profile image
j-o-h-n

Ask questions, questions and questions...... take notes, notes and notes..... BTW how old is your dear Dad?

Good Luck, Good Health and Good Humor.

j-o-h-n

LDC2024 profile image
LDC2024 in reply toj-o-h-n

Thank you!! Will do. He’s 77, but a “young” 77. Still very busy, works (runs his own business), travels a lot, etc. This is not the end!

j-o-h-n profile image
j-o-h-n in reply toLDC2024

Of course it's not the end........ Take it from me, 10 years older than your Dad.....and fighting the beast since 2002............

Good Luck, Good Health and Good Humor.

j-o-h-n

85236442968 profile image
85236442968

LDC2024

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.

groundhogy profile image
groundhogy

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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