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?