Trying to decide treatment options and quality of life after

Posted by ktk3260 @ktk3260, Aug 2 1:28pm

newly diagnosed trying to decide to remove or radiate treatment. i have not done pet scan yet its scheduled. I'm 54 years old concerned about quality of life after treatment?

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

I am 48. Had a G3+4, PSA 4.1, Small Volume Tumor. I had a RARP last July 16th. Today (07.Aug) I am feeling very good. No incontinence, going to work everyday and walking 2 miles in the morning. The surgery was really not a big deal ... the catheter is annoying, but the pain was completely tolerable without medication. The only complication I had was a bacterial infection from the catheter (found in the urine test after removing the catheter) that was treated with 7 days antibiotics and now cleared. So, as you are young and have many years ahead of you, I would really consider the RARP with an experienced surgeon.

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Thanks that’s my thought process too . I want to just hit hard and recover. Your journey you shared helps . It’s my personal choice I know and I’m gonna stand by my choice as the right one of me . That catheter is my biggest fear but small to what I could experience if I were to do nothing and it gets worse or I didn’t catch this know.

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Profile picture for gkgdawg @gkgdawg

Thank you for that. I spoke with the radiation technologist yesterday, while waiting for my husband's radiation treatment. I asked him if they do SBRT and he said yes they do but the doctor decides which way to go. Apparently, the radiation my husband is receiving is photons. He only has two treatments. I had been reading, yesterday , that there are photons and protons. It seemed that proton was preferable but photons are what my husband has received. I just want tomorrow to come and for it to be over for my husband. I pray that it has been beneficial. I just don't know how or when they determine if it, indeed, has destroyed cancer cells. The oncologist said that there will be no PSMA probably until my husband has been on hormone therapy for two years. I find that that hormone therapy is difficult for him, as well. Some days, I just feel so lost.

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Protons and photons both work to help kill cancer cells; the end result is the same.
The main difference is that photons (electrons) go right thru the body and out the other side, hitting different organs on the way. The problem is that this can cause secondary cancers down the road.
Protons, however, STOP at the target and expend all their energy right there - they do NOT pass thru the body and hit other structures, so secondary cancers become less of a concern.
But don’t get hung up on any of these differences - you have enough on your plate right now. Hang in there, it all gets easier over time.
Phil

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Under certain circumstances, removal or radiation are not the only options for treating prostate cancer. My prostate MRI indicated that there were two tumors in my prostate, with no apparent spreading of the cancer. Here is a long winded recap of my situation.

Here's my story about the Irreversible Electroporation (IRE) Nanoknife treatment for prostate cancer.
The discovery of my prostate cancer began when my PSA had risen from the mid twos to over four. My urologist recommended an MRI of my prostate, which resulted in finding two prostate tumors. The tumors were both contained within the prostate. Next was a biopsy. I chose an ultrasound-guided transperineal biopsy because that type of biopsy uses the MRI information as a road map to make sure the suspected areas are tested. My biopsy showed prostate cancer in the tumors.

Based on my Gleason score of 3+4=7 and a Decipher test showing low risk, I was a candidate for active surveillance. However, one of the tumors abutted the edge of the prostate, so I chose to have the tumors treated. I didn’t want to risk the tumor spreading outside the prostate. I was not excited with the possible side effects of removing the prostate or treating it with radiation, so I did research on focal treatments.

Focal treatments focus on treating prostate cancer by attempting to kill the tumor(s) without removal or radiation. These treatments are not for everyone and seem to require that the cancer has not spread beyond the prostate. There are several types of focal treatment such as High-Intensity Focused Ultrasound (HIFU), Transurethral Ultrasound Ablation (TULSA Pro), cryotherapy, Irreversible Electroporation (IRE), and others. I chose the IRE Nanoknife treatment which uses electrical current in an attempt to kill the tumor. This treatment was done at Moffitt Cancer Center in Tampa by Dr. Julio Powsang.

The IRE Nanoknife procedure went well for me. It took about an hour in total, I'm sure a good part of that was the preparation after I was put under. I think the actual procedure took about 30 minutes.
After the procedure, I had some spasms that were quickly relieved by medication. I had a catheter, which I was a bit concerned about. As it turned out, I had it for six days and didn't have any problems with it. I even removed it myself, which was surprisingly painless. I removed it in the shower so any urine that might have leaked out could be taken care of easily.

After removing the catheter, I had leakage and used pads in my underwear for about six weeks. For the first several weeks, there was blood in the urine, but that eventually cleared up. I still have occasional spotty leakage, like when I go to the gym or sneeze or cough. This really hasn't been a problem. Sexual function is the same now as before the treatment.

Three months after the procedure my PSA came down from 4.25 to 2.5. Six months after the procedure the PSA was down to 1.53. A multiparametric MRI (mpMRI) was also done at six months and it showed “post ablation changes of the prostate with no new recurrent tumor in the treatment area and no new suspicious lesions in the prostate." My doctor was very pleased with these results and deferred another prostate biopsy for the time being. Another PSA will be done at the one-year mark.

I'm very pleased with the results so far. Best wishes to all seeking a treatment plan best for them. I would highly recommend that everyone consult with a Cancer Center of Excellence. That type of facility is equipped with the specialists, staff and technology which is particularly effective in treating cancer. In addition to Moffitt Cancer Center, which I highly recommend, I have been a patient of Mayo Clinic for many years and have always received the best of care. Both organizations are Cancer Centers of Excellence.

Best wishes for finding the best solution for you!

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Profile picture for alex170177 @alex170177

I am 48. Had a G3+4, PSA 4.1, Small Volume Tumor. I had a RARP last July 16th. Today (07.Aug) I am feeling very good. No incontinence, going to work everyday and walking 2 miles in the morning. The surgery was really not a big deal ... the catheter is annoying, but the pain was completely tolerable without medication. The only complication I had was a bacterial infection from the catheter (found in the urine test after removing the catheter) that was treated with 7 days antibiotics and now cleared. So, as you are young and have many years ahead of you, I would really consider the RARP with an experienced surgeon.

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Thank you, Alex, for your recommendation about RARP - your recovery sounds quite encouraging, and I hope your road to recovery continues to be remarkable and complete.

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Assuming your PC is confined to your prostate and you are a candidate for one of the many conventional (radiation or surgery) or alternative treatments...keep in mind every treatment comes with some side effects. Some are more significant and longer term than others. As I heard one MD say "when it comes to prostate cancer treatment...no one gets away totally free (of any side effects)"

I chose IMRT + one HDR + 6 months Orgovyx. Now 2 months out from radiation I only have some residual frequency and some fatigue every now and then

No impotence or incontinence or hot flashes for me. I count my self blessed/lucky

I recommend that you understand the side effects and recovery process with all viable treatments before you make your decision

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I can share my experience with you as well. I was 54 when I was diagnosed with PC in October, 2024. I was very healthy and athletic, but had been on TRT for about 3 months. (Feb. - Apr, 2024). When I started, my T level was at 86 ng/dl. The TRT required monthly PSA checks which actually caught my PC early. My PSA pre-TRT was 3.9 and within 3 months on TRT went up to 6.2. I immediately stopped TRT and was referred to a Urologist who ordered a biopsy. The biopsy found PC in 8 of 12 cores, with a Gleason of 4+3. Fortunately the PC was confined to the prostate. I had RARP this past March (2025). I biggest worry going into the surgery was the catheter I would have to wear after. It was very unpleasant, but not painful as I predicted. I'm about 5 months from surgery now and almost everything has returned close to normal. I was lucky as I did not have incontinence aside from minor leakage when lifting heavy objects. I still have not fully returned to lifting as heavy in workouts as pre-surgery, but I'm about 75%. The biggest side effect has been ED. I am on daily Cialis 5mg. but it doesn't seem to help. I am still doing pelvic floor exercises in the hopes that I will get closer. I haven't tried any other therapies yet for the ED, but those are coming. Otherwise, life is almost back to normal. My last PSA showed undetectable. I had my annual physical last week and showed my T level at 36. My workouts are improving and I'm back to cycling longer distances since all the pain has disappeared. Overall, I'm happy with my choice of the surgery. I wish you all the best on your journey. This forum has been a tremendous help in my recovery.

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I am so very early as a participating "member" of this exceptional group of people, I have so little to share. I do understand your dilemma as to deciding what steps (treatments) to consider. I hesitate to confess this truth about myself, but I wasn't sure I wanted to even see a urologist after my initial elevated PSA (4.3) in May '25. It took two months to see a very respected urologist, and I kept the appointment. He wanted a repeat PSA/Free PSA and prostate specific MRI. I was planning on a big adventure through Southeast Asia in the Fall -- do not want my prostate interfering with my plans for living. I did have the MRI. I am scheduled to see the doc at the end of the month to go over the MRI ("suspicious spot" he said in an email). I am sure he will want to schedule a biopsy. Why wouldn't he? What about my exploration? I am not eager to have my life consumed by and with medical appointments, then treatments. I am tempted to postpone my follow up with him and go to Asia first.... This is tough and not what I expected as a newly retired guy ready to see and experience the world!

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Profile picture for steveapplebaugh @steveapplebaugh

I am so very early as a participating "member" of this exceptional group of people, I have so little to share. I do understand your dilemma as to deciding what steps (treatments) to consider. I hesitate to confess this truth about myself, but I wasn't sure I wanted to even see a urologist after my initial elevated PSA (4.3) in May '25. It took two months to see a very respected urologist, and I kept the appointment. He wanted a repeat PSA/Free PSA and prostate specific MRI. I was planning on a big adventure through Southeast Asia in the Fall -- do not want my prostate interfering with my plans for living. I did have the MRI. I am scheduled to see the doc at the end of the month to go over the MRI ("suspicious spot" he said in an email). I am sure he will want to schedule a biopsy. Why wouldn't he? What about my exploration? I am not eager to have my life consumed by and with medical appointments, then treatments. I am tempted to postpone my follow up with him and go to Asia first.... This is tough and not what I expected as a newly retired guy ready to see and experience the world!

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Prostate cancer is very slow growing. If you delay this two or three months, it probably won’t make any difference.

You don’t want to go too long a time before finding out what is really going on?

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Profile picture for kmc1372 @kmc1372

I can share my experience with you as well. I was 54 when I was diagnosed with PC in October, 2024. I was very healthy and athletic, but had been on TRT for about 3 months. (Feb. - Apr, 2024). When I started, my T level was at 86 ng/dl. The TRT required monthly PSA checks which actually caught my PC early. My PSA pre-TRT was 3.9 and within 3 months on TRT went up to 6.2. I immediately stopped TRT and was referred to a Urologist who ordered a biopsy. The biopsy found PC in 8 of 12 cores, with a Gleason of 4+3. Fortunately the PC was confined to the prostate. I had RARP this past March (2025). I biggest worry going into the surgery was the catheter I would have to wear after. It was very unpleasant, but not painful as I predicted. I'm about 5 months from surgery now and almost everything has returned close to normal. I was lucky as I did not have incontinence aside from minor leakage when lifting heavy objects. I still have not fully returned to lifting as heavy in workouts as pre-surgery, but I'm about 75%. The biggest side effect has been ED. I am on daily Cialis 5mg. but it doesn't seem to help. I am still doing pelvic floor exercises in the hopes that I will get closer. I haven't tried any other therapies yet for the ED, but those are coming. Otherwise, life is almost back to normal. My last PSA showed undetectable. I had my annual physical last week and showed my T level at 36. My workouts are improving and I'm back to cycling longer distances since all the pain has disappeared. Overall, I'm happy with my choice of the surgery. I wish you all the best on your journey. This forum has been a tremendous help in my recovery.

Jump to this post

This has been very helpful in me. Knowing that my choice of treatment is right for me . I have gotten a lot of positive feedback that lined up with my choice and I’m confident I’m making the correct choice for my quality of life in the future. Thank you

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