gleason9guy4 years ago

I did chemo, HDR Brachy thereapy, and direct beam. Also was on Zytiga and currently on Lupron. Difficult to sort out what did what, but as far as I can tell, the radiation irritated my bladder slightly. I believe radiation was the least of my worries. Putting myself in your shoes, I would opt to follow the doctor's recommendations.

carguy in reply to gleason9guy4 years ago

Thank you for the response. I'm still trying to decide.

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6357axbz4 years ago

I’m undergoing IMRT to my prostrate for the same reasons you are considering it. I’ve completed week four (out of six) with no appreciable side effects.

carguy in reply to 6357axbz4 years ago

Good to know. Thanks for the input!

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Tall_Allen4 years ago

You wrote " I also have lesions in the T4 and T9 vertebrae and multiple very small lesions in other parts of spine, lumbar and iliac bone" -- so how does your radiologist count that as "fewer than 3"? It wasn't just STAMPEDE, another large randomized clinical trial (HORRAD) also found no benefit.

pcnrv.blogspot.com/2018/09/...

However, it is possible that with whole pelvic radiation, and higher dose radiation, as with brachy boost therapy, and SBRT to the remaining bone mets, there might be a survival increase. This possibility is being explored in some clinical trials.

carguy in reply to Tall_Allen4 years ago

Thank you for the information on the HORRAD trial. The multiple other lesions were so small, they weren't included (according to the doctor). That is why I think I'm a borderline case.

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Livetodayok in reply to Tall_Allen4 years ago

Has anyone ended up with leg lymphedema from radiation to pelvic area?

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Tall_Allen in reply to Livetodayok4 years ago

Rare. Usually from ePLND or radiation after ePLND.

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Tall_Allen4 years ago

It's not the size, it's the number.

carguy in reply to Tall_Allen4 years ago

Maybe so. I just read in the STAMPEDE report: "Patients with low metastatic burden disease, according to the CHAARTED definition, may have unlimited number of metastases provided they are confined to the lymph nodes and the axial skeleton."

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gourd_dancer4 years ago

I suggest that to get the full reasoning, discuss this with your RO and MO. If they are true PCa pros, then they will have a readily available reason.

GD

carguy in reply to gourd_dancer4 years ago

GD, thank you. Very good suggestion.

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Hidden4 years ago

Don’t know who is scaring you off radiation therapy but it is a no brained. I went through with 10 other guys with various stages of the disease and only one guy had a bout diarrhea in the last week of 39 rounds. If they say it will help go for it.

carguy in reply to Hidden4 years ago

Thank you for the advice. That's good to hear there was no side effects.

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Hidden in reply to carguy4 years ago

I should have said I’ve only completed the 39 rounds as of April 18 this year. If there is something waiting for me long term I refer you to many others here with more experience

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j-o-h-n in reply to Hidden4 years ago

Here is a rerun: FYI REPRINT OF 03/14/2018 <===<<<

================================================================

I've had 39 treatments (8 weeks, 5 days a week minus 1 day). I did NOT have any side effects during the actual "FRYING". However years later it was discovered that my left urinary tract has become scarred/constricted and required many "in and out stents" for my kidney and urine. BTW the in and out of the stents were "a walk in the park". No Pain or discomfort. Rad was done at Memorial Sloan Kettering cancer center in NYC in 2005. After not having a stent in my tract for a few years my Urologist went in to see what's happening this past Wednesday. This procedure was done based upon routine CT scans and a scheduled Ultrasound prescribed by my Urologist. So in went a stent (he also added one in my right side for a kidney stone in my right Kidney).

Just be wary of the damage that Rad can do (even if it's silent).

==============================================================

NOW: ALL STENTS REMOVED !!!

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 05/13/2019 7:32 PM DST

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Hidden in reply to j-o-h-n4 years ago

I added to my comment that I had just finished treatment and that there could be others that have more to add. Glad you did.

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Karmaji in reply to j-o-h-n4 years ago

Hello...always upbeat even in hell...

2005 ....was stone age of RT....an uncontrolled butchery....

Hope RT is more human to neighbors

GGG

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j-o-h-n in reply to Karmaji4 years ago

So true.... and hopeful for the newbies....... Gotta keep smiling...

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 09/16/2019 10:59 AM DST

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Canoehead4 years ago

When I was diagnosed in Oct. 2017, radiation for metastatic cancer was not in the typical oncologist’s tool kit, because “the cat was out of the bag.” There were some doctors, however, who talked about debulking, which made perfect sense to me as an educated layperson, because the more cancer cells we can kill off, the less hard the body has to work to control the rest.

Similar metastatic burden as you describe, but I opted for chemo instead of Zytiga, again because I wanted to kill off as many cancer cells as possible. Taking Zytiga now. Then I had IMRT, 28 treatments on whole pelvis and 14 just on the prostate. The only side effects I had were GI system, with constant diarrhea the last month of treatment and for a month or so after I finished. It was not fun, but I got through it. 8 months later I feel I have a slightly diminished ability to control urgency, but that’s about it. I cope by making some adjustments in eating and being more aware of where toilets are. Lol.

I would do it again without hesitation.

Hidden in reply to Canoehead4 years ago

I’ll second that on knowing where the toilets are. The balloon irritated that whole area for first two weeks. Not a big deal but it was an invasion my body wasn’t ready for.

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carguy in reply to Canoehead4 years ago

Wow, sounds like you went through quite an ordeal. I'm curious, why did you have radiation to the pelvis? Did the cancer spread to your lymph nodes or other organs? Mine spread to the lymph nodes, but there was no recommendation of radiation to the pelvis, only the prostate.

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Canoehead in reply to carguy4 years ago

My bone Mets were all in the pelvis, and there was involvement of pelvic lymph nodes. I had already had chemo, scans looked clean and PSA was undectable, so the goal of the radiation was to get what we couldn’t see in that area. Chemo and radiation back to back wasn’t fun, but I kept working, so it wasn’t a horrible ordeal, just a mild ordeal.

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carguy in reply to Canoehead4 years ago

Thanks for sharing your experience. I'm in the waiting room to see the RO about the radiation!

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