How to Minimize Side Effects of Treatment?

I was diagnosed at 68. I too watched my PSA due to family history. During a yearly exam, Dr recommended further testing due to an enlarged prostate. My PSA was normal at 1.2. Urologist ordered a biopsy. 1 out 12 samples with cancer gleason 3+3. Clean margins. I elected for removal. I wanted to catch it yearly and be done with it. That was Feb2020. No treatments since. Zero PSA. Clean PET scan. However when you say side effects I assume you mean incontinence and ED. I was given the same statistics. I have both ED and incontinence. Could I or should I have done something different. Probably. But I feel blessed that I have not had to do anything else in the last 4 years. Is there a chance of a recurrence? I am not sure. Any regrets? No..

I did SBRT and am currently on ADT. I have no incontinence and the side effects from radiation were minimal: excessive urination for about three weeks, weak stream, and some tiredness. ADT is another story. Still having lots of side effects: depression/grief (the worst one by far), joint pain, brain fog, loss of appetite/weight loss (most people gain weight though), insomnia, ED (though 100 mg of Viagra works but that's got its own side effects) and anorgasmia.

Prostate surgery wasn't an option for me because I was already stage 4. Radiation (SBRT) did come with side-effects, including mild radiation cystitis and proctitis, but in my case those seemed like a small price to pay, and I barely notice them now.

I did have debulking surgery on the metastasised lesion (tumour) because it was compressing my spine, and I had a couple of months of serious post-surgical complications that kept me in hospital, but spinal surgery is much less straightforward than a prostatectomy.

Here's my clinical history.

You ask "How long have you had to deal with side effects for the procedure you selected?..." After each of my treatments, not long.

When I had surgery, within two weeks I was back on the basketball court. No incontinence and ED for about a year (I had nerve sparing, damn good surgeon...!)

After ADT, both with Lupron and Orgovyx, within three months fatigue, hot flashed, muscle and joint stiffness along with genitalia shrinkage went away, faster with Orgovyx.

With chemotherapy, same.

With radiation, never any side effects.

My experience may not be yours...

I will aso say that throughout all my treatments I pretty much continued life as normal, took vacations, went skiing, rode my bike, played pickleball and basketball, did the yard work, went to the gym, lifted weights, swam...

As to your comment "My hope was if I caught it early I would have fewer side effects from whatever treatment I selected." Yeah, no, side effects are exactly that, age is not necessarily, though may be, a factor in the severity and number. They can and do vary between each of us though many are common to all - with ADT, hot flashes, fatigue, muscle and joint stiffness, genitalia shrinkage are common...most, some statistics say 80% lose their libido, I was not in that group, nor was I in the group that has depression. When my catheter came out after surgery, zero incontinence, again, not common. With my three separate radiation treatments, none, why, who knows but I have a pretty damn good radiologist! You can mitigate the side effects - diet, exercise, stress management, your medical team can help with others.

Kevin

I'm 70 and reasonably fit (but not excessively so) at 5'11" and 187 lbs, and I had NS RALP (at a cancer center of excellence by an excellent doctor) 5 weeks ago. My recovery after surgery has been good. I never had any incontinence but I still wore a depends for 1 day, then switched to pads for about 4 days, and then I simply went back to normal underwear. I also have a large pad on my side of the bed under the sheet, just in case. Even though I never was incontinent after the catheter came out (except for a couple accidents as I figured out a few things), things do "feel a bit different". For example, with my prostate gone, I urinate like I'm 30 years younger. So when I step up to a urinal, I need to be ready when I "relax" as it starts to flow instantly. No pause like when my old prostate needed to relax before flow started. That's the kind of thing I mean about things "feeling a bit different". It took me a month to gain confidence that I wouldn't have an accident. I did do Kegels for about a month before surgery and resumed them after the catheter came out, so that may have helped my recovery. So at this point 5 weeks after surgery I'm generally "back to normal" for continence. Hopefully it'll stay that way, but who knows. Now to ED. Before surgery I needed Viagra for intercourse, so I wasn't starting from a pristine state. Right now I don't have normal sexual function, and I think that'll take longer to recover (if it does). I am taking Viagra nightly as part of penile rehab to help blood flow. I've only started trying to have intercourse within the last week or so. When I try to have intercourse, I do get a response but it's far from satisfactory. I think I've already seen improvement, but maybe it's my imagination. It's too early to know how much sexual function I'll ultimately recover. As far as everything else, I generally feel great; just like before surgery. My wife and I are hikers and spend a lot of time together, and other than sex, we can still enjoy ALL our other activities. Plus if the ED persists, there's a range of treatments I've yet to explore. So, bottom line for me: at this early time in this unfortunate journey, I have no regrets with my decision. But time will tell.

@bdc1677
Same Gleason score. PSA was 3.75 but was rising with each PSA test. Had bone scan, Decipher test, PSMA which gave me a good feedback of stage and risk of my cancer.
Chose proton radiation based on research first and second opinion.

I still believe chose right option. I really do not have any long term side affects. I did during treatments and about a year after. These were frequent urnination, very urgent need to urinate. This lastet up to about a year afterward and has since returned to what it was before treatments. During treatments I did have some fatique about 3 weeks in. I also got the tan marks on sides of hips from proton radiation.

A lot has to deal with your age. Other medical issues. Quality of life you want. Mental anxiety and mental health. And regretfully are you close to an outstanding institution to get the get excellent care and the most updated and current treatments.

The only long term side affect I have is dry orgasm. Was told this was common. It has inproved though over time. My PSA tests after treatments has gone down from 3.75 to last test of 0.44. I am told that is excellent results at the one year mark.
Good luck!!!

When you say dry orgasm. Is radiation treatment able to leave a wet orgasm? I was told with the removal that I had which included all the glands and duct work, mine would always be dry. If it is wet is it actually semen or bladder?

@tuckerp
Each individual is different in the side affects of radiation. Not all get dry orgasms.

I am not a urologist and hope you will contact yours for medical advice. The prostrate generates liquid to help semen (sperm) from testicles be expelled in an orgasm. Radiation really does a number on the prostrate. It is why they do not do a PSA test (at least Mayo and UFHPTI) during radiation treatments and for 3 months afterward. There are many types of radiation treatments and each will be different with common side affects. So some radiation treatments may not cause dry orgasms if specific to one area. My entire prostrate was radiated with proton radiation to ensure they treated entire prostrate which removes the danger that you had cancer areas not determined during biopsies and MRIs. But that is my R/O but both UFHPTI and Mayo was going to treat entire prostrate.

This time period I was told now PSA tests was to allow the prostrate to calm down as has really been damaged. Thus my dry orgasm came from the damage and irritation to prostrate. It can improve over time like mine did as prostrate recovers but each individual has different outcomes.

I did not even know dry orgasm was side affect until it happened. Wow did I freak out! I went on MCC and the feedback that it is and can be a side affect and then my R/O confirmed it. Wish they had told me it could be a side affect but the propably did but was getting so much information I did not remember it.

If you had your prostrate removed you will no longer have the liquid the prostrate creates thus your information above about dry orgasms is correct.

“ How long have you had to deal with side effects for the procedure you selected?”

Others have provided great answers regarding the treatment they selected for their particular PCa diagnosis.

The reason I’m responding is that I had the same initial clinical diagnosis (3+4 Gleason) and I may represent a different perspective of how to deal with your question.

The details of your particular 3+4 diagnosis are critical in determining your options.

Only you can decide when, any to which, side effects you are willing to risk in the path forward you select.

Every 3+4 individual is different. In my case delaying the potential for side effects of any treatment, without jeopardizing my future treatment choices was my priority.

This can be done, if other biomarker data supports such a decision and one embarks on an aggressive AS plan..

I’m 68 y/o, my pre-biopsy PSA was 7.8 and my mpMRI showed 3 PIRADS lesions…one 3, one 4 & one 5.

My Oct '23 fusion biopsy showed 7/15 cores positive. Five 3+3 (5-10% cancer) and two 3+4 (10-20% cancer).

My Decipher's Clinical-Genomic Model was "Low Risk", score 0.22 and recommended AS.

I also had genetic testing done (PROMISE trial) in which no prostate related genetic variants (mutations) were found.

I began a whole plant food diet and upped my running regiment to 10 miles/wk in Nov ‘23.

I lost 25 lbs (BMI=22.5) by Feb 2024; then added animal protein back into my diet.

My 4 & 7 mth post-biopsy PSA's were both 5.9 (a 25% reduction from prebiopsy level). I will test again in 3 weeks.

Since you are 3+4 Gleason a decision to pursue AS is dependent on your Decipher score and your genetic predisposition towards prostate cancer (PROMISE trial provides free testing).

These tests will help you determine if you are a good candidate for AS or whether you should seek immediate treatment.

I wish you all the best in whatever decision you make.

I had Gleason 3+4 as well with a PSA of 10.2. I had no ADT treatment but did have a tight margin, Radiation machine called the Mridian.

After the third dose of the five hypo fractional treatments that I was supposed to have, my urine flow was restricted and they gave me Flomax, which worked overnight. I did have spaceoar put in.

I believe because I had those tight margins for radiation (2 mm vs 3-5 for most other forms of radiation) that the amount of exposure to radiation of my healthy tissue was minimized as were my side effects. I finished treatment in February 2023.