First post

[Popstopups]

I was diagnosed with an "aggressive but not advanced" prostate cancer in August 2022. I had a prostatectomy in September 2022. My PSA showed a result of "undetectable" at 3, 6, and 9 months after surgery. At 12 months, it was no longer undetectable. A PSMA PT scan showed mild to moderate uptake in several lymph nodes around the site of my prostatectomy but no distant disease. Because of the classification of my original diagnosis as "aggressive," both my medical oncologist and a radiation oncologist recommended that I begin radiation and hormone therapy as soon as possible. I will have my first of 39 radiation treatments on November 20, 2023 and am most concerned about fatigue as a side effect.

[mrscruffy]

Never had more than 10 radiation treatments at a time but fought off fatigue with tons of water and went to gym for workout every day straight after treatment

[FMOH_N]

What you mean by "very aggressive but not advanced". What was your GS and PSA at Dx? did any LN removed during RP and analyzed?

What about ADT?

wishing you great health

[Cactus297]

My son had 6 weeks of IMRT las Feb/March. I asked him and he said he was working 12 hour days and just made it happen…too busy to know what fatigue was. He’s 51. His PC is aggressive tertiary 5 and they used the radiation for the stomach area (the pelvic lymph nodes)….the PSMA Pet afterward showed no further spread.

[KocoPr]

i had no side effects from 37 treatments to prostate bed, but I also bought my own dive chamber and did about 100 sessions at 3 atmospheres.

[j-o-h-n]

If it's the typical 39 sessions of nuking the bed.......Below is my worn out thin post regarding my 39 sessions: It's not funny but it is boring..

Radiation - I've posted this before so to those people who have already seen this please forgive me.

I had 8 weeks of salvage radiation to "the bed". 5 days a week (not weekends) for 8 weeks minus 1 day for a total of 39 sessions at MSKcc. The actual radiation was like getting an x-ray by my dentist. I never had any side effects during the whole 39 sessions. However, 2 years later my left urinary tract was "fried" as per my urologist (or from passing prior kidney stones he was not sure). So, I had to have a urinary stent placed up my urinary tract (through my willy which is really nothing - sounds terrible but it's nothing) to aid in passing my urine (which was never a problem anyway). So I had stents in and out every three months for many years and now I'm stent free, However today 15% of urine from left kidney and 85% from right kidney, but not a problem. So make sure you get a good radiologist. Also, I don't know if this would apply to you but guys here recommend SPACEOAR HYDROGEL to be inserted for protection of parts of your body. Make sure you ask your R.O. about the space oar and make sure you ask here on this forum before getting fried.

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 11/05/2023 8:12 PM EST

[tango65]

Whole pelvis radiation with boost to the positive nodes plus 3 years of ADT concomitant with 2 years of Abiraterone per the Stampede study data.

[turkeyjoe1]

Gleason 9, 16 months on lupron only. 3 month PSA after 44 IMRT treatments. .01. Mild fatigue, soft stool for a week during treatment. Was doing major remodeling within a week.

[Hawk56]

Ugh...the 39IMRT "sounds like "salvage radiation therapy" to the prostate bed. Given the short time to recurrence, an "aggressive" PCa, not sure why you and your medical team would not include the entire pelvic lymph node system too.

Do some homework on doublet and triplet therapy. As to the time on ADT, well, that's all over the map, some clinical research and trial data say 18 months, others 24, still others 36.

With the clinical data you describe, an aggressive approach may me something you consider discussing with your medical team. That may be triplet therapy with radiation, ADT which could include an agent such as Lupron combined with an ARI, may chemotherapy.

As to the fatigue, best mitigating strategy is a reasonable diet and a sound exercise regimen.

Consider adding a cardiologist to your medical team.

Here's my clinical history, as my urologist said when reviewing the Jan 15 TRUS biopsy results with me, "that's a pretty aggressive PCa Kevin...! While on ADT, I added a cardiologist when playing basketball my heart rate jumped to 200, nearly passing out. When I told my primary care doctor, she referred me straight away to a cardiologist.

Throughout these ten years since diagnosis and treatments, the best thing I have done to mitigate the treatment side affects has been to just exercise and live my life, ride my bike, hike in the mountains, ski with friends, swim, lift weights, play pickleball, vacation with my wife (we did a trip to Iceland this year)...

Kevin

Clinical History

[Cactus297 in reply to Hawk56]

That’s exactly my son’s attitude also. Last year they biked in France and Spain and he hikes the trails around his house almost every day. Last weekend he did a 51/2 hour hike. And he’s gone vegan. I don’t think it will cure it but eating healthy is the way to go. Before PC he wasn’t eating healthy.

Stampede Trial new SOC recommendation as of 2022… I copied and pasted it directly from the trial results.

“Abiraterone for 2 years should now be considered a standard treatment option in addition to 3-year ADT for newly diagnosed non-metastatic prostate cancer with high-risk features.”

The SOC two years when my son was placed on it last year, but I told him about this and he’s going to consider the 36 months.

This is the link to the study.

ncbi.nlm.nih.gov/pmc/articl...

I just recently passed this news onto my son that it’s no longer 24 months.

[MoonRocket in reply to Cactus297]

If your son is into hiking, he should check out the Alta Vista 1 in the Dolomites (Italy). A buddy and I did 5 consecutive days of 8-12 mile hikes from Refugio to Refugios. One of the best experiences of my life. Refugios are mountain huts that are like hostels with great food.

[Cactus297 in reply to MoonRocket]

Thanks! I will definitely tell him about it! It sounds like something he’d really enjoy.

Last year a few months after his surgery and radiation, he and his friend hiked the coast of France and Spain. I’m sure he would enjoy your hike too…it sounds neat.

His house is near a mountain and last weekend he hiked 5 1/2 hours on Saturday and I think 3 1/2 hours on Sunday and he gets up early in the morning and hikes before he goes to work. The fall weather is finally here.

[MoonRocket in reply to Cactus297]

Did he and his friends hike the Pyrenees High Route or did they just hike along the Mediterranean coast?

[Cactus297 in reply to MoonRocket]

I’m not sure of the exact route, but I know they were in the Basque region and also visited the Guggenheim ….but the exact route?! Their starting point was Paris where they have friends but I’m not sure if they flew or drove from Paris. He sent me photos but I don’t know that region except for visiting Paris along time ago.

He bought prints at the Guggenheim and just had them framed last Sunday. I will ask him about the route next time I write or see him and let you know!

[Cactus297 in reply to MoonRocket]

Hi I finally saw my son and I was wrong. This trip wasn’t really a true hike. They didn’t have enough time for the hike they wanted to make so they went to Paris and then visited the Basque Country, and he also went to the Guggenheim…sorry gave you misinformation!

I told him about your hike in Italy, and gave him the information and he said to thank you.

[Hidden in reply to Hawk56]

I had 33. It was bed, and lymph nodes up to arterial bifurcation. It worked.

Note he has no prostate!!

[Bethpage]

My husband had 39 RT at age 77. He had no fatigue whatsoever. The only side effect he had during RT was slight constipation beginning the middle of week 8 out of 9. Since the end of RT in 2019, he has had 2 hours-long instances of rad cystitis and 2 of rad proctitis. He was, however, one of the rare ones who was left with CLL as a direct result of RT. Good luck to you!

[Popstopups in reply to Bethpage]

Thank you for this. I very much appreciate getting the full report from you.

[jmarsh]

My case is similar except my PSA never went undetectable after prostatectomy. I think the latest thinking is that you need to be on hormone therapy (Lupron and Abiraterone for me) for at least 4 weeks prior to radiation. My cancer is high risk and aggressive (Gleason 9). I did 33 whole pelvic treatments and never missed a day of work. Fatigue wasn't really a problem for me, except I had to get up at 4:45 every morning to get to my treatment an hour away. That was my choice, by the way. I preferred to get the first appointments to beat traffic. Urgency flared up during the treatments but normalized two weeks afterward. Had some diarrhea that also subsided shortly thereafter.

[Grandpa4]

I had 35 treatments. No major side effects. A small chance in colon function. I did not have fatigue but I am an avid exerciser.

[cancerfox]

Fatigue, tiredness, weakness, or whatever you want to call it is generally more a result of the hormone therapy than the radiation sessions. Exercise will help deal with the ADT effects, but will not prevent them. 🦊

[Mgtd]

I had the intermediate course of 26 weeks to prostrate and pelvic area. I worked out every day. Slight fatigue in the afternoon. Took 30 min nap and was feeling great. I hiked with my dogs almost everyday for about 5 to 6 miles.

[Popstopups in reply to Mgtd]

Very encouraging - thank you

[ron_bucher]

You might be interested in my history. I had radiation of the local area about a year after my prostatectomy. During radiation I could play doubles tennis full speed for 90 minutes but 4 hours of golf using a cart was exhausting. So my fatigue was different from any fatigue I had previously experienced. I didn't feel sleepy or wiped out, but just lost energy after 90 minutes of exercise.

[Popstopups in reply to ron_bucher]

Interesting and good to know. Thank you.