44yr PSA180 Gleason9 non-metastatic. Surgery or Treatment?

Honestly, sometimes PC behaves like some kind of parasite 🤢, you just can not get rid of it ! WHAT was hidden for 30 years and dormant ??? Why it activated after THIRTY years ! What cell can live for 30 years ? Only heart cells and neurons live as long as we are alive (do not get replaced) - unbelievable things indeed.

Jeff - are you still in contact with those 2 men ? It would be worthy to ask them what they think helped them to be in a remission for so long. 😎

It is really so mind boggling that there is no rhyme or reason to PC ! One can have 4+3 and get BCR in 5 years and one can be gleson 9 and have BCR in 30 years. It is like tossing a yazi - that is your chance - whatever falls it could be your chance of BCR no matter what you initially had 🤨🤷‍♀️

I’ll have to do some dig into get that information and maybe I’ll have a more accurate recommendation for me, but I’m really interested in what choice you made & why ? And looking back are you glad you made that choice ? thanks for your help hearing someone else s similar story ‘ I’m so nervous and I don’t know which way to go.

Hi Steve, I am in the same situation as you and haven't the fact that I am only 44 yrs old, complicates thongs for me.
But let us stay positive, trust the science and the doctors. Let us take it one day a time and enjoy every second we have to the fullest.

Have you just had the one PSA test? I would get that number confirmed with another draw. There was a pretty good paper with data in determining the likelihood of metastatic cancer at various PSA numerical points. Do a google search and it should show up.

It could be that your PSA is high for other reasons and you have to take into account the size of your prostate. If it were me, I would likely do radiation if higher than say 100. Under 100 and given your age, I might consider surgery.

I wish you the best.and stay positive.The treatments at all stages now are doable.

Both of the guys that I referred to showed up at ancan.org Weekly advanced prostate cancer meetings. I didn’t write down their names. I know they’re probably coming back occasionally, but they have not come back for more advice about how to handle the fact that PSA is rising..

If you look up prostate cancer and dormant cells, you will find that an unknown amount of time can go by before it comes back.

During the March PCRI conference the two doctors discussed this.

DR.S Kwon and Moyad agree to this. Seeds for metastasis were already there when surgery was done, waiting to grow.

That sort of explained why it comes back even after a prostatectomy>

Hi Steven,
I opted for proton therapy combined with 2 years of ADT (lupron + abiraterone + prednisone). To arrive at that decision, I invested quite a bit of time doing research and writing down my questions as I went. At diagnosis, in the fall of 2021, I was 67 and in otherwise very good health. I based my treatment decision on the most recent results out of the Stampede Trial which indicated that the treatment I chose would provide comparable overall survival and progression free survival to surgery plus radiation plus ADT (the other treatment path for high/very high risk prostate cancer) without the risks of surgical side effects. Since then, there has been more research into the efficacy of radiation vs surgery for cribriform which you should research then ask both a radiation oncologist and genitourinary urologist about.

I am very happy with my decision. In consultation with the radiation oncologist, surgical oncologist, genitourinary medical oncologist and and my primary care doctor (who continued to monitor my health on a regular basis through treatment), my team at the UW Medicine/Fred Hutchinson cancer center ( they use a multidisciplinary team approach to new patient orientation), the majority opinion was to take my chosen path.

I chose proton instead of photon because the RO felt that due to my one hip replacement and location of the EPE that it would result in the most effective treatment and reduced risk of both short and long term side effects. To date, I have had no side effects from the radiation nor did it impact my life during treatment. The results of the Stampede trial strongly indicated that the lupron + abiraterone combination therapy would provide the best long term outcome in conjunction with the radiation therapy (RT). As Jeff suggested, there is no reason to fear ADT. It did cause the usual side effects, but they were manageable with a healthy diet, regular cardio and resistance exercises and sleep (yes, I did find a lunch time or afternoon nap very helpful when I could adjust my schedule to allow it). I live an active life. I am a general contractor and spend my free time hiking, mountain biking kayaking, xc skiing and snowshoeing. We continued all of these activities during treatment although my energy levels and stamina were somewhat reduced. By six months after completing ADT, my energy and physical conditioning had returned to pre treatment levels. During ADT, I did experience some temporary changes to my emotional state from time to time which were occassionally annoying, but facinating to experience none the less. Libido evaproated which was a big change , but gradually has returned to normal. Post treatment, physical intimacy is just as enjoyable as ever,

For me, accepting my diagnosis, determining that what was most important to me (striving to live in the sweet spot where quality of life and longevity coexist), finding a medical team I had confidence in, educating myself, on an ongoing basis, about PCa (which allows me to have confidence in and effective communication with my doctors) and making the most of each and every day I have because there is no guarantee of tomorrow (nor has there ever been) are the steps that I followed to get to where I am today.

Life is good, even during this whole PCa existance. but attitude and continued effort to keep life well balanced is what makes it so for me. I wish you success in your journey and am glad that you found MCC. It is a great help.
Bill

Thanks for the information Jeff!

Hi Surfer, Yeah it stumps me too! But if I may add my two pence, I want to say that having observed and studied several afflicted people from among family, friends and neighbours, I found that accepting and then replacing fear with faith at the deepest level of conscience is what made the difference irrespective of the grade and stage of the disease.

Did they say how to kill the seeds? I’m on adt but that’s not going to do it. I asked to go on docetaxel after radiation but I was told no.