The decision I have to make is tearing me up

Posted by dbearb @dbearb, Feb 9 11:43am

12 months ago I started going to TRT place for access to peptides.
I got tested and my PSA was 3.7 went through questions about family history with cancer which had none. So I started getting blood work every month and for 7 months my levels went down a little bit but back to 3.7> So got checked and advised prostate was slightly enlarged but due to numbers had biopsy. 1 out of 12 and 3+4 Gleason score was results the 1 was higher up on prostate. Just completed MRI and going in for results in two days. I am really going crazy trying to determine if I really need to have surgery and be done with it or radiation but from reading articles that might be not a good decision. I am 56 yoa and want to get possibly more that 10 more years to play with new grandchild. Not sure if I'm asking to early about what people have done in my position and any regrets, they have for having surgery. GOD speed.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

Profile picture for wwsmith @wwsmith

@jesse65 What treatment did you end up choosing and what was the final factor that clarified the decision for you?

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@wwsmith Great question for any of us on this forum! My treatment goals were determined by my own personal experience dealing with cancer among my siblings and parents over a 50 year time frame. What I saw was quality of life, and death, caused not by the cancer but by the very treatment that was supposed to cure them.

My personal goal was ensuring QOL not 5 or 10 years down the road, but 15 or 20 years down the road. I helped my Dad struggle through his prostate treatment side effects that showed up 20 years after his treatment, and was not how I envisioned the end of my life to be.

Statistically, all modes of treatment have the same cure rate. I am comfortable that my cancer could be put to rest; I was seeking the treatment that would provide the safest experience for a long life and protect me from the inherent dangers of the treatment itself. I evaluated surgery, IMRT & SBRT , Proton Beam, cyberknife, "radioactive painting"of the Prostate (a term coined by Proton Therapy, but really applicable to IMRT and SBRT too), and all the safety modes including spacers, low dose-long rad vs High dose-fast rad, and the newest technologies using adaptive radiation treatment.

Given my disposition, age, physical condition, tolerance for wanting to deal with side effects, and a huge consideration for internal karmic feelings, my treatment mode will use CT Scan Adaptive Radiation with real-time x-ray tracking. I chose 28 days vs 5 (smashing your fingers with a hammer vs hitting your fingers with a soft rubber hose). Using the latest technology in spacers, Bioprotect, which provides more space than SpaceOAR between the rectum and prostate and is also saline filled to absorb some of the rad dose to the rectum. My treatment plan includes radiation sparing lower dose to my urethra and distant seminal vesicles, and a focal boost in radiation to my lesion.

This is just what felt best for my goals and concerns, your selection will be personal to you and your own situation.

I started Orgovyx last week and now I have to sign off so I can get to my first Rad Treatment this afternoon.

Best wishes for all to make good decisions for their own best outcome!

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Profile picture for jesse65 @jesse65

@wwsmith Great question for any of us on this forum! My treatment goals were determined by my own personal experience dealing with cancer among my siblings and parents over a 50 year time frame. What I saw was quality of life, and death, caused not by the cancer but by the very treatment that was supposed to cure them.

My personal goal was ensuring QOL not 5 or 10 years down the road, but 15 or 20 years down the road. I helped my Dad struggle through his prostate treatment side effects that showed up 20 years after his treatment, and was not how I envisioned the end of my life to be.

Statistically, all modes of treatment have the same cure rate. I am comfortable that my cancer could be put to rest; I was seeking the treatment that would provide the safest experience for a long life and protect me from the inherent dangers of the treatment itself. I evaluated surgery, IMRT & SBRT , Proton Beam, cyberknife, "radioactive painting"of the Prostate (a term coined by Proton Therapy, but really applicable to IMRT and SBRT too), and all the safety modes including spacers, low dose-long rad vs High dose-fast rad, and the newest technologies using adaptive radiation treatment.

Given my disposition, age, physical condition, tolerance for wanting to deal with side effects, and a huge consideration for internal karmic feelings, my treatment mode will use CT Scan Adaptive Radiation with real-time x-ray tracking. I chose 28 days vs 5 (smashing your fingers with a hammer vs hitting your fingers with a soft rubber hose). Using the latest technology in spacers, Bioprotect, which provides more space than SpaceOAR between the rectum and prostate and is also saline filled to absorb some of the rad dose to the rectum. My treatment plan includes radiation sparing lower dose to my urethra and distant seminal vesicles, and a focal boost in radiation to my lesion.

This is just what felt best for my goals and concerns, your selection will be personal to you and your own situation.

I started Orgovyx last week and now I have to sign off so I can get to my first Rad Treatment this afternoon.

Best wishes for all to make good decisions for their own best outcome!

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@jesse65 I can see that your experience with your dad really brought home the benefit of using something like Bioprotect to help insure that you have minimum risk of side effects from radiation in the future. I looked at some of your previous posts as well and noticed that like me you also took both the Decipher (0.81) and Artera-AI (true) tests. In my case the tests essentially agreed that ADT was necessary. But I had often wondered that if Artera had scored false, what score would I need on Decipher to override a false on Artera? It sounds like you had exactly that situation! If I may ask, what was your Decipher score and what was the threshold Decipher score that you and your doctors settled on as the trigger to override a false on Artera?

Another thing I learned from your old posts was a great comparison of proton versus conventional photon radiation. This post https://connect.mayoclinic.org/discussion/pc-treatment-prostatectomy-or-proton-beam-therapy/ really explained the pros and cons of proton radiation. There has been so much hype about the more gentle nature of proton radiation that it seems like it would be the hands down best radiation to use no matter what the situation. I know that every post from @rlpostrp certainly says that. You actually visited two centers that offered proton radiation but they also sold you off proton! More patients should definitely be aware of the pros and cons of proton radiation.

I too chose radiation and ADT. You can see full details in my bio. I sure wish every participant on this forum would put some info in their bio on what their pathology was and what treatment they chose. It helps so much to know where someone is coming from when you read one of their posts.

Congratulations on having your first radiation treatment. I am sure that you found it anti-climatic. Enduring your ADT period will be far more taxing but that too will be over before you know it.

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I opted for high-dose brachytherapy (HDR). This is two out-patient treatments a week apart. Although the procedure sounds pretty nasty, you are knocked out for it all. I had no pain ever with the procedure. I went home from the hospital (Mayo Rochester) driven by family members and took a long walk. My cancer likely started in my early 60's. My PSA was at 5.48 in 2017. A biopsy was recommended but then some health care dispute in my city caused a loss of nearly all urologists (many quit and others were fired, leaving the city without urologists due to noncompete clauses). So, it was easy for me to do nothing. In Dec 2021 my PSA at 7.8 sent me to an MRI, showing four lesions at PI-RADS 5, 4, 3, 3. I had the biopsy in May 2022. Cancer was found in 13 of 18 cores, two with PNI, most at 3+4. I met with three doctors (my urologist, a surgeon, and a radiologist) about options for radiation or surgery. Again, I decided to wait and see. In Dec 2022 my PSA was at 10.7. A second MRI in Mar 2023 showed substantial growth of a lesion pushing on the capsule. I finally had two sessions of HDR brachy in April 2023 (16+17 needles) at Mayo Rochester at age 70. It was an easy process, no pain or disability. For me, the deciding factors were the downsides. Surgery can leave you with 10 days living with a cath, permanent incontinence, and ED. Radiation might cause more cancer in 20 years. At my age I went with the cancer risk (with the hope that I live that long and there is a cancer cure by then). The procedure is not at all worth the worry. It is true that "Worrying is like paying a debt you don't owe." -- Mark Twain. Age 73 now and still thinking I made the right decision. I'm leading a very normal life (no diapers or caths and have erections) and feeling great. It does take a while for things to settle down after the radiation. There is some swelling of the prostate and you are on drugs (Flomax generic) to maintain flow for a while (think it was about 90 days).

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I wanted to avoid the surgery when I was diagnosed with prostate cancer. I took meds to shrink my prostate but the downside is it shrinks your penis too! I shrunk 50%! Then ended up having a prostatectomy after all! They don’t talk about it near enough but it’s a fact that after a prostatectomy your penis will be an inch shorter!
I tell you this because all that happened to me but I’m still glad I had the surgery in order to get rid of my cancer and add years to my life! As bad as it it, it is still worth it!

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I'm looking for advice regarding L-Carnitine and whether or not it affects the proliferation of prostate cancer cells as I'd like to use it for my workouts please advise

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Profile picture for nbuff @nbuff

I'm looking for advice regarding L-Carnitine and whether or not it affects the proliferation of prostate cancer cells as I'd like to use it for my workouts please advise

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@nbuff
It does not negatively affect prostate cancer. It may or may not be effective in improving performance.

Do a web search for this
“ if someone has prostate cancer how advisable is it to use L-Carnitine for exercise”

We will find a fair amount of information about the benefits of using it.

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Profile picture for dbearb @dbearb

@mpersonne greatly appreciate your words. After getting alot of input I am hoping it is contained and able to try observation if possible and find me a excellent surgeon before I
do it.
Also just kicked around getting rid of it totally hopefully and start low therapy?
Really alot to think about but hope everything works out for you as well.

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@dbearb, how are you doing? Did you get a second opinion at a cancer center? What treatment path did you choose?

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