How many biopsies?

Hi Surftohealth88,
So sorry to learn of your collective experiences to date with prostate cancer and its treatments. I hope you will stop blaming yourself as the time and negative energy spent looking at "if onlys" in the rear view mirror detracts from what you two need to be focused on today, determining the best treatment and planning a great life going forward. For every really negative post you read about horrible side effects, there are far more people moving through the treatment pipeline dealing with the side effects, making the very best of each day and eventually returning to a normal life. Fortunately for all of us, there are a number of those individuals who post regularly on MCC!

We are all shocked and afraid of what our future might hold upon diagnosis. The good news is that there are a number of excellent cancer centers in each region of the country that deliver exceptional cutting edge treatments. I hope selecting one will be your next step. I live in the Pacific Northwest, so I went to the Fred Hutchinson Cancer Center affiliated with the University of Washington. Following my MRI and biopsy, I joined a clinical trial for a yet to be approved PSMA Pet Scan. I read several books, explored the PCRI website and videos and studied the NCCN Clinical Practice Guidelines with Evidence Blocks. Next, I met with the urological surgeon, a genitourinary onclogist (one who specializes in prostate cancer), and a radiation oncologist to hear about the pros and cons of each treatment option given my specific diagnosis. The surgeon felt I should do the surgery to leave the option of radiation on the table. However, the genitourinary oncologist and radiologist both felt that given the (then) very recent data from the Stampede Trial for high risk and very high risk prostate cancer, I should pass on the high likelyhood of significant surgical side effects (due to proximity of cancer to nerves as well as the high risk features - extra prostetic extension and cribform ) and go directly to 24 months of lupron + abiraterone+ prednisone along with radiation. The long term outcomes for both progression free survival and overall survival were very similar for both protocols. Given the very high risk PCa, I would have had to follow recuperation from surgery imediately with the ADT and radiation anyway, so why add the complication of potential surgical side effects to my life? I chose not to. The radiation oncologist felt confident that proton therapy could effectively treat the prostate and nearby lymph nodes (even though they had no PSMA uptake, they would likely be a source of regional spread later given the agressive nature of my cancer) with very little chance for side effects from the radiation.

Medicare and my suppliment plan covered all of the costs of treatment except for a small part D deductible and copay. I have had no side effects from the proton therapy, but was able to treated to the full menu of fatigue, hot flashes, and emotions of living in a body without testosterone. I live a somewhat active life and enjoy cycling, kayaking, hiking (without excessive vertical gain) and xc skiing, but was not doing resistance training or aerobics 3 days a week. I'm just not much for going to the gym... So I found an online program offered by the YMCA (membership included with my Supplement Insurance), Enhance Fitness, that takes place virtually with live instruction and a very real expectation that you will be there each day. While I never wanted to patricipate while going through the fatigue from ADT, I always made it to my workout area in the basement for 30 minutes of aerobics and 30 minutes resistance training with dumbells and ankle weights. Without exception, I always felt much better following each workout and it didn't interfere with catching the occassional afternoon nap! It has been great and I have continued participating!

I am 12 months past the end of the primary effects of lupron and feeling great. My PSA has remained undetectable since June of 2022. Should there be a recurrence, I have an incredible wife, a team of medical experts and a Brotherhood with a wealth of experience at MCC to help me through it. Life during ADT wasn't always easy, but was certainly manageable and far better than a life of worry about the imminent progression of under treated cancer.

My heart goes out to you and your husband. I hope that you will benefit from the wealth of knowledge and experience found here at MCC; and that you continue to post updates on your journey so others may benefit from your experiences. Best wishes to you both!
Bill

Why are you treating your husband’s diagnosis as a death sentence? It’s NOT that bad!! He still has a chance for a cure; you didn’t miss any opportunity - there is no evidence you’ve provided which shows spread outside the gland. What “ductal” involvement are you talking about - ductal cells or seminal ducts or…?
Did he have a PSMA PET scan?

Thanks so much for writing, that is very comforting to hear. I hope that your PSA test results will come back less than 0.01 and may this month of April mark the and of all of your troubles forever .

Sorry if I sounded horridly dramatic to you, that was not my intent. I understand that mostly man are here on this forum so I can see how my sentimental posts might be misunderstood. I am very emotional and emphatic person, and I am touched by anybody's pain, let alone of family members. I do not think that it is negligible fact to be diagnosed with C even if it does not cause death in very short period of time or even never. It involves constant medical exams, treatments, scans, biopsies and cause a lot of emotional drain and stress. We just got biopsy results 5 days ago so PSMA PET is not done yet. Intraductal carcinoma =IDC-P puts this tumor in more aggressive category and is more likely to spread. There is about 1 to 2 % chance for that. I hate the fact that it could have been treated with MUCH more ease and efficiency if it was treated on time especially since we were under surveillance for 10 years ( at least we thought that we were).

I have no words to express my gratitude to you Bill, I read your post couple of times. Everything that you said was such great advice and it is true that I need to make adjustments and stop thinking about "what ifs" and about some omissions from the past. What happened, happened and today I had a revelation that perhaps it was better that biopsy was done THIS year since it discovered possible trouble brewing instead of, lets say, last year when maybe little change was present and than this years important event would have been missed till 2 or 3 years down the road. With any loss ( in this case loss of health) , we all need some time to accept new situation and than proceed the best way we can. I am so glad to hear that you are feeling so much better : )) and that radiation therapy was such success for you! May it stay that way forever : ))) ! Your insight about pros and cons of each therapy is invaluable since it gives very realistic scenario about real dilemma of choosing between removing the whole gland or just irradiating it. My husband has some cribriform cells in ductal area in one of his biopsy plugs that discovered IDC . We decided to go for second opinion to UCSF since I found a lot of great reviews about PC Center that they have and appointment is with Urologic Oncologist. The fist available space was end of April but I think it is worth waiting couple of weeks. In the meantime we asked present doctor (urologist) for PSMA test and we got referral but it will take some time to pass through insurance approval etc. Thank you also for detailed exercise plan and ideas - that is just wonderful. My husband is very active, likes to play tennis, is excellent skier (was competing when he was student), likes to windsurf and kite (hence the user name ;). He is not gym guy though, BUT he will have to do what you did to stay in form . In any case exercise gives body and mind feeling of wellness and capability even in times when we do not feel very able. Once more thanks for all of your kind words and encouragement and all of the useful advice. I am sure I will be reading your post many times over. I also apologize if some of my sentences are awkwardly structured, English is my second language. I am sending you and your whole family very special hugs and sincere thanks from CA < 3

I am very happy to hear about your selection of UCFS and the upcoming appointment! You two are on a good trajectory. The positivity in your post is wonderful and I'll hope you opt to continue to ask/share/vent on MCC as you feel inclined to do so.

Thank you for the kind words, best wishes and well written post. You two have got this!
Bill

It is totally understandable to be emotionally devastated by a cancer diagnosis - ALL OF US and our spouses were cut off at the knees by hearing the dreaded C word.
But your husband was under active surveillance specifically for this possibility. Surely that did not mean that he was immune to getting the disease, right?
In fact, BECAUSE he was on active surveillance, the cancer was spotted (one area), identified and will now be dealt with. Even biopsies can only give so much information so the intraductal area could be old news or a new tumor - impossible to know. His lifetime of doctor visits, blood tests and scans was ALREADY in progress during AS, so it will continue on this path unfortunately, and that’s something there’s just no getting away from.
A recent poster on this board, also a wife, describes her husband’s recent prostate cancer diagnosis which was FIRST discovered in almost every organ, his spine, pelvis, etc. He was not under AS. His prognosis is worse than your husband’s by magnitudes. His initial treatment will take YEARS in order to register actual improvement, whereas your husband’s may take one procedure (surgery or focal therapy) or a few weeks or months (radiation).
So please go back and thank your doctors for placing your man under AS so that you could be spared the abject terror that this poor woman and husband are facing.
You may not see it now - I know I surely did not - but you are a lucky couple and will live together for many happy years. You will look back and realize that this episode is a tiny bump in the road and not the brick wall you thought you were crashing into. Best
Phil

Relax, listen to heavy Phil/ Jeffmarc: their diagnosis are a lot more intense than mine were. Follow their advise. Been chatting with them for a year now.

I had my first biopsy in 2017 and it came back 3+3. At which time, we chose active surveillance. Had another in 2020 and, once again, it came back at 3+3 as a part of the active surveillance protocol. Had my third in 2024 and it came back 3+4. I decided at that time to do SBRT rather than surgery. Five sessions of radiation over a week and a half. So far so good. Will have PSA and testosterone tests in April.

Phil gives good perspective here. I started AS in 2021 after my PSA hit 5. MRI was clean so my 2 doctors let me decide on biopsy or not. I chose not to as my urologist told me that if he felt 100 prostates today, mine would be the most normal, and there was nothing showing on the MRI. Fast-forward to March 2024, my PSA rose to 7.5. MRI showed a lesion, biopsy Gleason 7 (4+3) with cribriform and PSMA scan showed no spread. I chose to do TULSA Pro at Mayo. In hindsight, I am glad I didn’t do biopsy three years ago and chose active surveillance. Treatments have improved a lot in three years and I feel fortunate to be on the leading edge of some of those treatments. I am nearly 9 months in from my treatment and all signs point to the cancer being gone. I know I have a lifetime of tests/checks ahead of me, but I am ok with that. We are all only 1 test away from a life changing diagnosis of some sort. Surftohealth88- you have many good options going forward.