What questions to ask on my first appointment?

[PARKER3237]

I have my first visit with the Medical Oncologist and team. What questions are the most important to ask in the first meeting? Any suggestions would be most appreciated as I begin this journey.

[JohnInTheMiddle]

Parker - I'm sharing here my recent "so you're new to metastatic prostate cancer" post. The post is a recent update but it references two earlier long posts.

You asked specifically about what questions you should ask with your first visit with your medical oncologist. I'm not really answering your request here - but maybe the bigger context will be helpful.

My own initial experience after diagnosis of meeting any doctor, in my case a radiation oncologist, was in retrospect kind of wasted because I didn't know what kinds of questions to ask. The meetings ended up being "Metastatic Prostate Cancer 101". And reading on all the various healthcare and institutional websites about an initial prostate cancer diagnosis were oddly less helpful than they could be. So the material here is sort of the material which I wish I had had at the beginning.

Talking with oncologists at the beginning of your diagnosis is an inefficient way of acquiring information if the meeting is just about Cancer 101 - and also takes up valuable limited time with your medical oncologist. My suggestion is that the more you know the better questions, especially for your own situation, are likely to be.

I'm over two years in now with metastatic prostate cancer, including to my spine, and doing quite well so far. After diagnosis it's information overload. Perhaps the three posts here might be helpful. They may not entirely match your situation of course. And I also note that therapies and the terminology have evolved somewhat from even just two years ago! Things are evolving pretty quickly! (Nevertheless I think it fundamentals are still sound.)

And also of course my notes are just one person's observations and even opinions. There are a lot of opinions available everywhere and you have to learn to not take everything as gospel! A big success for you!

healthunlocked.com/advanced...

[PARKER3237 in reply to JohnInTheMiddle]

Thanks for your inputs. I gave the info to my caregiver. He is the one who does most of the scheduling, note taking, asks questions as he is a retired Biochemist and Accountant.

[Derf4223]

Questions -- how about

1, If obese, would losing weight help with treatment?

2, Wear facial masks around other people (not a question -- your immune system will be weakened by treatment.) If already weak, is that an issue? Get all vaccines -- Covid, pneumonia, shingles, etc.

3, What are your guidelines about exercise before, during and after treatment? Regardless of the answer from your doctor, start now -- aerobics, cardio and resistance. Fatigue is a big likely side effect of every cancer treatment. Get started now before treatment makes it vastly harder to start. The fatigue from cancer treatment is 95% brain fatigue.

4, Get your dental health up to snuff fast, if it isn't already. No cavities left, caps as needed, etc. Tell your dentist you are going to be getting treated for PCa.

5, If you are a smoker or drinker, stop now. These habits greatly increase general cancer and CVD risks that PCa/APCa treatments worsen further, a lot.

6, How should I modify my diet regime? Mediterranean, vegan, etc.

6A, Should start to take any vitamins or supplements?

7, Get a DEXA (bone density) scan now -- they can order it for you

8, Indicate if you are ready for palliative or intent-to-cure treatments and intensity

All of these are nice-to-haves when you don't have PCa/APCa, but with it they are essential and will help treatments work better and/or mitigate side effects

These are all the levers under your control. Use them now.

Good luck

[JohnInTheMiddle in reply to Derf4223]

Fantastic list Derf!

[PARKER3237 in reply to Derf4223]

Thanks for the list. I will pass this on to my caregiver.

[Hidden]

An additional resource

pcf.org/c/questions-to-ask-...

[4tunate1]

My journey started in February 2024. It has been a whirlwind of emotions, treatments, tests and doctor visits. Things come at your exceptionally fast. For me, and for most people, it's all new terms and methods that we have no experience with or desire to be involved in. I get tired of hearing 'everyone's different' but it is a fact.

You said you have a caregiver and that's super helpful. Let them take notes during your visit so you can listen closely. You will forget the details as there are too many. Make sure your MO and other physicians share what I expect is your sense of urgency. My urologist failed in that, my other practitioners have been great.

Whatever your treatment recommendations are, understand the why. What does it do, how quickly, how will I feel and how will it affect me short term as well as long term? All of these treatments come with side effects and potential damage/disturbance to your body. There's not getting around that so understand as best you can.

Understanding will require a lot of time on your own learning about this. There are tons of resources. Pick a short list of qualified, legitimate resources that work for you as you cannot chase everything. The time investment is significant but it's the only way. This group is fantastic and is my go-to every morning.

You will develop more questions from your own research. Hopefully your MO has a portal where you can send questions to the MO and team that don't require a in-person visit. Write them all down as they come to you.

I haven't really answer your initial question because I think others have covered that. I'm sure you have a list already. Own your care as best you can, ask for help and accept it as needed. Treatments for this are advancing quickly so stay abreast of all the things relevant to your disease.

Best to you!

[Horse12888]

Your MO will want you on ADT, but what type? Continuous, intermittent, bipolar? In conjunction with an AR-blocker? Darolutamide is the only one that doesn't cross the blood/brain barrier, so is best if the SEs of ADT include depression.

[JohnInTheMiddle in reply to Horse12888]

Regarding ADT, on initial diagnosis (de novo?) of metastatic prostate cancer including to the bones, there is only ADT continuously. There's no intermittent or bipolar choice. Except in unusual cases. Adding these terms as options is just noise.

[Teacherdude72]

My suggestion is to take someone with you and have your questions written down.

[Jewelrylady]

I think asking if you can record your meeting is the most important first question you can ask! Then you can fully pay attention to what is being said, and then when you get home and don’t remember anything because you were so anxious, you can listen to the recording! Taking notes is good, but no one can write down everything. Your doctor may say no, but it’s important to ask. Second, be sure you write your questions down. I hope your appointment goes well. We also got a second opinion for treatment.