Radiation vs Surgery Gleason 3+4=7, Long Term Side Effects (Cyclist)

Posted by Cannondale @tactive, Jul 20 2:18pm

I am 53 years old and have recently been diagnosed with prostate cancer, Gleason 3+4 =7

I am considering HDR Brachytherapy vs Prostatectomy. I am concerned with long term side effects. I would be grateful to hear from those that have had radiation and/or surgery and what side long term side effects they have had to deal with.

Could you please share your long term side effects surgery or radiation?

It will help greatly.

Thank you very much

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I'm not a medical professional and I certainly have no idea what's the best treatment for you. That said, here's my experience of the side effects after surgery. I was 70 yo when I had NS RARP at a center of excellence about 25 months ago. I was 5'11" 186 lbs at the time of surgery (ie. fit, but not excessively so). I also was fortunate to have a very experienced and sucessful surgeon at a CCOE. I was continent immediately after the catheter came out although I did have some minor urine releases as I figured out the new normal during the first 4 months or so. Without my old BPH prostate I pee like I'm 30 years younger. I did have significant ED right after surgery, with it slowly getting better until full recovery at 15 months. I should note that I followed a penile rehab program under the direction of my medical team at the CCOE. Also, the uncertainty and slow pace of the ED recovery did result in considerable anxiety during that time. As far as general physical activities, I wasn't allowed to lift more than 10 lbs for 6 weeks after the catheter came out, and no activies with small seats (like cycling) for 3 months. I actually had some perinium pain if I sat down too quickly on a small gym bench for at least 6 months, slowly fading over time. Generally speaking, I was fully back to normal by about 6 months with the exception that ED recovery took 15 (very stressful) months. Now at 2+ years, all that's been long gone for quite a while. I should also note I started Kegels about a month before surgery and continue them (although less frequently) to this day. I also note that during this entire time I've exercised and eaten a healthy diet. Best wishes.

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I am 72, surgery coming up two years ago. I had the newer Retzius Sparing Robotic Assisted Laparoscopic Prostatectomy (RS-RALP). Totally different surgical prostatectomy technique than what most surgeons perform, the standard RALP. Be aware of the difference and if you research you will see studies showing very high levels of immediate continence. This procedure also retains urethral length back to reattachment to bladder so no loss of penile length. I know with a regular RALP most still regain continence by a year but I regained immediate continence and no kegels, diapers or pads. I know many consider me lucky, but I am the standard under this new technique. Most major hospitals and Centers of Excellence have at least one surgeon trained in the new technique, but most still perform regular RALP’s and are probably very proficient. As with any surgery, alot depends on your surgeon’s experience and expertise that gives you the good results. This procedure along with as much nerve sparing that is possible also then reduces ED. I am fine now with taking Viagra, which I had never needed. I know surgery is often recommended for younger patients so if it is going to be something you consider please research
Retzius sparing and also the newer single port DaVinci Robot that can get you home the same day.

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First thing I would recommend is that you get here hereditary genetic testing. Getting prostate cancer so Young can be due to genetic issues. I got it at 62 because my mother gave me BRCA2, a Genetic problem. My brother got it at 77 because he didn’t have it. Our father died of prostate cancer and gave us a very high percentage chance of having it, So that helped both of us get it but my genetic problem resulted in my getting it much younger.

I didn’t find out. I had the Genetic problem till four years ago. I had a 3+4 but decided to have surgery because my father had radiation. Turned out after surgery they found out if I was a 4+3. 3 1/2 years later, it came back and I had salvage radiation.

The only side effect I had after surgery (16 years ago) was ED. I had no incontinence. After radiation, I still had no incontinence. Six years after radiation, I started having incontinence and they got progressively worse in the last six years. There are a number of solutions for it, I had an AUS put in. I no longer have incontinence.

My brother at 77 had five sessions of SBRT radiation. That seemed to work quite well for him. Three years later he’s just fine.

You can get brachytherapy, It can be very effective. You also could get SBRT radiation.

Both of those radiation treatments can cause urinary issues, Some people have diarrhea for a while, The problems usually go away Over a few months.

There’s no way to know what your side effects are gonna be since everybody is different. A lot of people can tell you what happened to them, but that doesn’t Really tell you what’s going to happen to you.

I know people that have had serious problems from either treatment. Lifelong issues. That is unusual, but it can’t happen.

They have a test called the Prostox I can tell you whether or not SBRT or IMRT radiation can cause problems. They cannot tell you whether or not brachytherapy Will cause you issues.

You could get focal therapy if it’s isolated to one side of the prostate. That can work for a long time and later you could have surgery or radiation. The long-term results are unknown, A good percentage need further treatment.

You should have no problem being a cyclist after treatment.

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My surgeon offered another possible option yesterday. I am also 3+4, favorable intermediate risk. I am going to Johns Hopkins and they are starting up a second phase of an aquablation trial which I am hoping to be accepted into. I am now waiting on my Decipher score.

If you don't mind being a Guinea pig you might see if there is a similar trial near you. Compared to RARP or radiation this transurethral procedure has drastically fewer side effects. You may also consider AS. Everyone is different so this might not be applicable to your situation, but thought this might be of interest.

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I had RARP at 52, one year ago. Petsistent side effect is ED. Had incontinence at the beginning but it resolved over 2-3 months. Zero pad use thereafter. I do have more urgency, but that’s it.

You should also consider the cancer control side. Do you have any adverse features? Did you do Decipher/Artera?

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When being diagnosed at a younger age many docs will recommend surgery. But because 40-60% of men end up needing radiation at some point anyway I personally would look for other options. Especially with you being a 3+4. The cutting edge treatments being done at most COE's is HDR Brachytherapy & 5 sessions of SBRT. Depending on other factors adding ADT, even a 4-6 month short course can help. There are genome tests that will show if adding ADT hormone therapy would help. Even without the ADT added HDR Brachy & 5 sessions of SBRT will give you around 85-90% "cure" rate or as some call it a 10 yr NON re-occurrence / survival rate.

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Profile picture for keithl56 @keithl56

My surgeon offered another possible option yesterday. I am also 3+4, favorable intermediate risk. I am going to Johns Hopkins and they are starting up a second phase of an aquablation trial which I am hoping to be accepted into. I am now waiting on my Decipher score.

If you don't mind being a Guinea pig you might see if there is a similar trial near you. Compared to RARP or radiation this transurethral procedure has drastically fewer side effects. You may also consider AS. Everyone is different so this might not be applicable to your situation, but thought this might be of interest.

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@keithl56 There are 26 locations in the WATER IV trial. Go to Aquablation.com and there will be a link to trial information including disease requirements and treatment locations.

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Thanks for the link. The info varies somewhat from what my surgeon said (and he is a PI -Principal Investigator, at Johns Hopkins for the study). He told me that the trial is randomized with 2/3 getting the aquablation and 1/3 staying with AS rather than RARP. The first arm was just completed and the second to begin shortly. I'll find out in November if I am accepted into the trial. It looks like a promising treatment alternative. Perhaps I misinterpreted the information since I had a lot to absorb during the visit yesterday. Now another wait for the Decipher score and another PSA test.

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Also a cyclist. Had SBRT and 6 months of ADT two years ago. Prostate was sensitive for awhile so needed padded underwear in addition to padded shorts for biking. ADT side effects for me were mostly mental (bad depression), though my testosterone took an exceptionally long time to reach low normal (18 months) and I lost a bit of stamina and developed some osteoporosis.

Side effects of SBRT were tiredness and burning urination for about 1-2 months afterwards, then nothing. A few months ago developed radiation cystitis that's being controlled with meds. Had no bowel problems during or after treatment. Never had ED even while on ADT, though ADT did cause some anorgasmia that's now resolved. Am back to cycling like before, though did buy a wider seat.

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Profile picture for keithl56 @keithl56

Thanks for the link. The info varies somewhat from what my surgeon said (and he is a PI -Principal Investigator, at Johns Hopkins for the study). He told me that the trial is randomized with 2/3 getting the aquablation and 1/3 staying with AS rather than RARP. The first arm was just completed and the second to begin shortly. I'll find out in November if I am accepted into the trial. It looks like a promising treatment alternative. Perhaps I misinterpreted the information since I had a lot to absorb during the visit yesterday. Now another wait for the Decipher score and another PSA test.

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@keithl56 That was the ratio on the website 1/3 RP and 2/3 Aquablation. These usually do not get updated unless the information changes so no information on where they are with recruitment and how many patients have already been treated. The trial name (WATER IV) sort of indicates there were previous trials. Main item was the listing of the 26 hospitals where treatment could take place (one was John Hopkins). Your surgeon should know how this relates. Just say you saw a web page looking for subjects for a trial named WATER IV and he will be able to tell you how that relates to the one that you may participate in.

Also FYI: NHS (UK) just completed a 10 year study of 3500 high-risk patients using focal treatments (HIFU, Cryo) and said results were equal to RP or Radiation. Too old for Aquablation or even Tulsa Pro.

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