Is you Oncologist an positive cheerleader or more negative
I have had denovo metastatic high volume prostate cancer to the bone for 3 years now. No matter how good my results are my oncologist cannot get excited or feel positive. It really bother me. I recently had a bone scan and the results were fantastic. When I look at my images there are no more black dots in my bones indicating active cancer. This year the results showed tremendous results just being on ADT, Nubeqa, and Xgeva. I finished chemo and radiation over 2 years ago. While am happy I am do so well, it is difficult having a doctor that seems to expect the treatment to fail at sometime in my life.
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I have 2 oncologists. One for the drug side and one for the radiation side. Their approach to my case in terms of positivity are polar opposite. It's conflicting for me about what my treatment future holds. Leaving the office hearing, "We got this. You'll be fine" rather than "You'll suffer these side effects and maybe no cure."
I believe a positive attitude is a huge part of Pc therapy outcomes (while still being true to the facts of course).
Are you working with a Genito Urinary Oncologist or just a medical oncologist? That could be part of the problem>. Medical oncologist just can’t keep up with what’s going on with the latest things in prostate cancer treatment. They worked with all different types of cancer.
Some Oncologist that just aren’t real friendly. Depending on where you are in the country, there are some great oncologist to work with.
If you come to an Ancan.org Advanced prostate cancer meeting next Monday at 5 PM Pacific time they will probably be able to help you find an Oncologist, you will like and really knows their stuff. Get there 10 minutes early, you will get the first 30 minutes or more with treatment suggestions.. If you go to the website and sign up, you can get there in newsletter, which has a lot of information about new things happening in prostate cancer treatment. You could also watch one of the previous meetings so you have a feel for what’s going on..
When I met my first radiation oncologist (a resident at the time), he was a bit of a pessimist, but he got me onto the treatments have have worked so well for me since then (which were still cutting edge in Canada in 2021), so he gets a pass. When the head of the team came back from leave and I started seeing him instead, he was a bit of a cheerleader. My current oncologist is friendly and chatty but absolutely neutral.
I don't need cheerleading as much as I did 3 1/2 years ago, fortunately. I know a lot more about my cancer than I did back then, and while encouragement is always appreciated, I know that my RO doesn't have access to any crystal ball. If he's going by stats, he'd have to use the same outdated numbers as everyone else. If it's just a gut feeling, well, I can get that from reading about all of your cases here as easily as I can get it from him.
What I do appreciate from him is having an expert review my test results and order new ones as required, and maybe spot any troubling new patterns early. He seems good at that, and it's enough.
My oncologist, Dr. Ronnie, I like to call him is positive as a oncologist can be. It comes natural to him. I am 4.6 years in on this advanced prostate cancer journey, it's been a very rough year, life's not dealing my cancer many good cards. When your PSA keeps rising and you scans aren't much better you need every once of positivity you can get and Ronnie delivers. At some level he seems to know how depressing my cancer journeys gotten yet he keeps things hopeful, caring, and positive. I find Positivity absolutely vital in this journey.
I am extremely new to this cancer journey (about a month) but have been a heart failure patient for years and fully expected to be dead from it by now. I told this to my urology oncologist at my last visit, and he said, "Don't worry. I'll do my best to keep you going long enough so you can die of heart failure instead of cancer like you expected." Reassurance combined with humor; I'll take that every day.
Sounds more neutral than positive/negative.
I have aggressive PCa; G 9 w/ EPE. And post RP, my 1st PSA was "persistent" at .19
So I began a course of Salvage Treatment.
Now I am 2 yrs since completing that 2nd round of treatment and PSA has been undetectable < .02
I would love for my RO to be excited, but the statistics strongly suggest future recurrence. And he is supportive without being overly optimistic.
So while I hope for the miracle or a very long period of "silence", I settle for the excellent care and current results. And the thought that my treatment at today's levels of sophistication may gift me extended remission beyond the statistics suggested by studies of prior treatment results.
Best wishes.
I just want to throw this out there. Castrate Resistance is not inevitable. Dr. Mark Scholtz "Prostate Cancer Research Institute" states that not every man becomes castrate resistance. There are men who remain hormone sensitive on ADT alone. So, I do not and will not subscribe to the belief that = "it is not a matter of if, it is a matter of when I become castrate resistant." I strongly believe that I have beat this cancer. And while my doctors may never agree that my deep deep remission is cure - and while I trust my doctor and respect her - I do believe I continue to demonstrate cure. After having a tremendous response that showed up on my recent bone scan, my oncologist wants to do a PSMA Pet scan. I believe it will confirm - the cancer is dead and that there are no other issues that light up. I am a Christian believer and I believe I am moving into cure everyday. What I need to do better is push through and exercise.
Thanks for that!
There is a small percentile of people who remain castrate sensitive with metastatic prostate cancer, and it seems to have become larger with new treatment strategies like the early introduction of ARSIs (instead of waiting for ADT to fail), radiation of individual metastases for oligometastatic PCa, early chemotherapy for polymetastatic PCa, etc.
Obviously, the longer you go with undetectable PSA, the more likely you're in that percentile, but there's no way to know for sure. I figure if I'm going to have fantasies about a future I can't predict, they might as well be positive ones rather than negative.
Most men that are in the triplet therapy group are the new experiment. Not enough time has gone by to gather up-to-date statistics on Overall Survival, Time to pain, or Time to Castration Resistance. With regard to ARSENS data - Time to Castrate Resistance - NOT REACHED.
A lot of doctors would suggest you go on a vacation from the drugs after two years and an undetectable PSA. Are you interested in doing that? For some people it does work and they don’t need to go back on ADT for a long time. Even with Gleason 9. Get monthly PSA test and if it rises at all, go back on.
One online meeting I was at had a guy come back who had his cancer come back 30 years after surgery and he was a Gleason nine. Waneted suggestions for care. I run into a lot of other people that were Gleason nine and have gone well over a decade in remission.