Why Won't My Oncologist Discuss My Prostate Cancer Prognosis?

Discussions of outlook varied over time. In the months of testing, mri, biopsy, genetic classifier … there discussion was mostly about the next information to collect. Once the diagnostics were complete then there was a pretty open and extended discussion. For (intermediate low risk) me, all the treatment options had a good 15 year survival rate. At 70 that is long enough for a discussion. Side effects of treatment vary a lot between the different treatments. So the discussion was more about treatment versus quality of life than length of life. The docs had specific web references (NCCN.org was best). I am a reader and went deep (read the article in the footnotes). The doc discussions (several) helped direct what to read and apply judgement beyond the statistics. (Their judgement). During all the testing I was pretty frustrated. During the discussion of treatment options I was very happy with the discussions.

I'm still waiting for that discussion. My cancer has spread exponentially while waiting for testing. My wife has no hope. I'm still holding out until I have the conversation and hear it from the oncologist that there is no treatment to give me any quality of life. It's been a month since a liver biopsy. I now have innumerable "lesions" in my liver, every abdominal lymph node, and every bone in my skeleton that was visible in the PSMA PET scan. A CT scan 4 weeks earlier only showed a slightly enlarged prostate and injured kidneys. (No lesions in my liver or bones.) To quote the oncologist, "I don't know why this has forward so fast," then saying I needed a liver biopsy stat. It only took a month to have the biopsy.

Brian, I commend your doctor. That dialogue is what I hoped for, but didn’t get, because he was uncomfortable with maybe setting expectations. From my reading, his evasiveness is common. Please share my regard for his candor when you see him.

RH, it sure seems like you are owed that discussion now. I was hesitant to get too assertive with my doc, thinking it best to have a good working relationship, but given the progression of your disease, pressing the point with your doctor hardly seems out of line.

Hi Brian What was your Gleason score and Decipher score if you don’t mind sharing? I only did 28 sessions radiation nothing else Gleason was 3+4=7 and decipher 0.14. Can’t ejaculate anymore but still have erections and zero other symptoms. I’m 67 so hoping to God this is in the rear view mirror

Hi Charlie- Gleason 3+4, decipher high. Treatment = radiation only, 28 sessions. Completed last week. Short term side effects pretty small, short list mostly fatigue. Long term side effects to be discovered. I am 70. And yes, hopeful. Bought a season pass for skiing this next winter. At the gym to control fatigue and be ready for the ski season. From time in the waiting room, I am convinced there is a really broad range in this cancer. We are all unique.

Brian- hopefully long term side effects will be negligible only thing I have approaching almost 1 year after 28 sessions RT is what I mentioned above very weird but at least I can still have sex. Just weird…hahaha I fully endorse working out - everything cardio strength training etc I’m a former boxer so for me I never stopped training and I also swim and lift weights. Wishing you well and agree wise variations in PC.

I find the doctors tend to recommend the treatments provided by their network. Keep it among colleagues. If they don’t offer it they don’t recommend it.

Hi fellas, thank you all for all the great information and optimism. Just gave blood today for my second PSA check after radiation treatment. My first PSA test was 5 from a high of 11. Hopefully my test today will come back lower than 5. Results tomorrow. Question for those that did radiation. How long (in months) after radiation and multiple PSA tests were your PSA numbers below 2? I'm stressing a little since my first PSA results was only down to 5. I know after surgery it should be 0 (since no prostate) and after radiation it just lowers to hopefully below 2, but I wanted to get a time frame for my expectations.

Hi Gerry Optimally radiation treatment will get you to 1 or below. A lot also depends on your Gleason score and Decipher score as well. I also did radiation treatment so I can definitely relate to what you’re going through in fact I meet with my urologist tomorrow to review #2 PSA labs, first went from 4.3 to 1.7 and that was after 6 months. I assume you only did the external beam treatment? That’s what I did 28 sessions and it sucked but in my view a superior option than not having the prostate removed too many post op complications etc. feel free to circle back. Best to you Charlie

Thank you Charlie. Yes, I had external radiation. Five sessions in five days (one session per day); one hour to an hour and a half per session. It sucked as well but pushed through it.

Hey Gerry Mine was 28 sessions about 3 minutes each could have been worse at least I was able to train through it and my recovery was very fast about 7 days after it ended I felt pretty normal again. What was your Gleason score and Decipher analysis score if You don’t mind me asking? I’m 67 in otherwise excellent condition only side effect so far is dry orgasms but no ED or urinary bowel issues.

I find some that like to spread the wealth around their particular networks. Never recommending services that they don’t render. Wanted information on new ablation procedures. Not offered locally, some still in trial, a one shot deal sounded better than radiation every day for weeks. Not available so not recommended.

High frequency ultrasound/HIFU is being used at Park Nicollet in Minneapolis. It offers improved Quality of Life by avoiding effects of the radical prostatectomy. Focal laser ablation along with cry ablation are options. Tsynch is in trial, an an ablative option that stimulates the immune system. Electroporation is yet another option. Details are available via Google.

Jonathan, Google “WCCO on hifu treatment.”

Hey Charlie, I was diagnosed at 56 and turning 58 in a few weeks. My PSA high was 11, Gleason score was 3+4=7, and Decifer was 47, just under 50 so no hormone therapy recommended. Cancer is localized at this point. About a week of fatigue after treatment, significant constant urination for two weeks, now frequent urination but manageable and not as bad as before. ED not really a problem but have medication for it as needed. I must admit, sometimes I second guess my decision of radiation over surgery, but didn't want to deal with those side effects after surgery for my quality of life reasons. I sought counsel and received counsel from a Urology Surgeon, a Radiation Oncologist, and a General Oncologist. All gave me the same mortality % if I went with surgery or radiation once all tests came back. I reviewed both options of cons vs cons (in my opinion no pros in cancer) and decided on radiation after a lot of soul searching, research, and talks with family and friends. And here I am brother.

I am beginning to lose confidence in the medical profession. Too many decisions made by office managers. An unnecessary procedure to get a biopsy. Just beginning hormone therapy. Very lucky to have my beautiful wife, an over 37 year survivor, who spends hours maneuvering around their networks. I couldn’t do it myself.

Hi, this is RH's wife. He passed away Monday. He appreciated the support from this online community.

Terrible news Mrs. RH. My sincere condolences on his passing. May God Bless his soul, and may you and family find some comfort in prayer, scripture, and knowing RH is in a better place without suffering. 🙏🏽

Please Let my express my Condolences as well. Prayers. RIP RH

Hi Gerry What is your prognosis and next step treatments?

Hey Charlie. My second PSA test post radiation treatment (seven months) was 2.7. Doctor said that I'm in a good trajectory with constant positive progress. Next PSA test in three months. No further treatment at this time recommended. My cancer is characterized as PSA producing hence my initial high PSA numbers, which also means the cancer promotes PSA. This characteristic in my cancer should increase my PSA. So the fact that it is continously going down, means the cancer is not reproducing cells and is dying off slowly. Thus no hormone therapy needed at this time, nor MRI or PET Scan. Trust me, I aksed a significant number of questions. If I continue in this trajectory, MRI and maybe PET Scan at the two year mark; long way from there however. Keeping my fingers crossed, saying my prayers, and trying to maintain a positive outlook and attitude 🙏🏽. Thanks for asking.

This experience is more common than many people realize, and it can feel really frustrating when you're looking for clarity about your journey ahead. Many oncologists struggle with prognostic discussions for various reasons - some worry about taking away hope, others find it challenging to predict individual outcomes, and communication styles can vary widely between doctors. It might help to directly ask specific questions about what to expect or request a dedicated appointment focused on discussing your prognosis and future planning.