Your radiation therapy experience as a pT3b cancer patient

Posted by rlpostrp @rlpostrp, 2 days ago

At six-months post-RP, and despite having two consecutive post-op PSA test values of < 0.1 ng/ml, my status as a pT3b has seen my urologist write an order for consultion with a radiation oncologist to do 40-days (8 weeks) of radiation therapy, knowing there is about a 25% recurrence of prostate cancer in pT3b patients. Therefore, for you as a same pT3b patient (meaning you had one or both seminal vesicles invaded by the cancer):
1) Did you have radiation therapy?
2) If you had radiation therapy, how soon after surgery did you have it?
3) Were your first two, and any subsequent, PSA values < 0.1 ng/ml (essential "zero"), and you had an order for radiation therapy written by your urologist anyway?
4) After having your 40-days of radiation therapy, did your pT3b cancer return, and if so, how long after your radiation (number of months or years) did it take to return? Or...how long have you been cancer-free with recurrence?
5) What were your side-effect symptoms during and after radiation therapy? I heard you can have excessive fatigue, and temporary or permanent changes with urinary continence as well as rectal/bowel issues that are temporary or permanent. I also heard that flatulence (gas) can be a problem during radiation therapy (after too?).
6) If your cancer came back after radiation therapy, what was your next treatment/therapy?
7) Did you suffer any of the ~5% negative serious side-effects of radiation therapy like bladder cancer or rectal cancer?
8) Anything else I should know?
My urologist was kind of "should we or shouldn't we" do radiation "now" vs "wait" until/if my PSA elevates to 0.2 ng/ml or greater? He is concerned that I am a pT3b with a very high likelihood that my cancer will come back "within" five years (could be next year, or two years, or unto to the full five years...but is likely to come back)...this despite having my first two post-op PSA values at < 0.1 ng/ml.
9) How many of you fellow pT3b patients out there have survived 15 years or more?
I appreciate any/all comments from fellow pT3b patients regarding any/all of the above.
Thanks

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Profile picture for rlpostrp @rlpostrp

Thank you for relating your experience. In my posted question, I failed to state what my post-surgical report revealed. It was as follows:
- Extra Prostatic Extension ("EPE")
- "Surgical margins" - yes/positive...cancerous tissue remains in my body, but my urologist gave me a big caveat which is: "You may have surgical margins, but that cancerous tissue left behind, needs blood supply to survive. The surgery involves removing the blood supply it would draw from, so...you may have surgical margins, but the tissue left behind, may in fact "die" from lack of blood supply. He did add though that musculature that is close by has a lot of blood supply. You have to hope that the cells...even one...didn't attach to your pelvic floor musculature.
- Cribriform glands - yes/positive
- Left seminal vesicle partial invasion. All cells were grade "3", and there was no evidence of tumor or nodule(s) in the seminal vesicle. But the fact that it was invaded instantly made me a pT3b with a minimum 25% likelihood of the cancer recurring "within" five years. "How" this can be, still boggles my mind: the prostate is removed, both seminal vesicles are removed, and both vas deferens are removed, and blood supply to any cancer cells left behind (surgical margins) have no blood supply available to survive. So "how" doe the cancer come back?!?!?

This is all exasperating...all of the "unknowns", "ya but..." uncertainties are difficult to handle when I am a very black and white person.

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@rlpostrp
Ehhh, unfortunately nothing is black and white with PC, not even if one has 3+3 and RP and all looks great- there are no guarantees that PC will not come back. Nobody can actually see microscopic events that happen or not happen and that is why there are % and nomograms and "predictions", otherwise there would be no need for those. Doctors only know that when there are certain features present it is more likely that BCR will happen than when they are not - but there are no 100% warranties in either direction.

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Profile picture for jeff Marchi @jeffmarc

@rlpostrp
I don’t see you mention your Gleason score anywhere. That could be a major factor of why the doctor made that decision.

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@jeffmarc
My Gleason score was 3+4 = 7 with 6-10% cells rated "4". So it was as low of a "7" as you can get without being a 3+3=6. But the Gleason score means/meant nothing once the final surgical pathology report was issued with all of the unexpected additional tumor characteristics and cellular pathology.
Thanks

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Profile picture for rlpostrp @rlpostrp

@jeffmarc
My Gleason score was 3+4 = 7 with 6-10% cells rated "4". So it was as low of a "7" as you can get without being a 3+3=6. But the Gleason score means/meant nothing once the final surgical pathology report was issued with all of the unexpected additional tumor characteristics and cellular pathology.
Thanks

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@rlpostrp
While your Gleason score does mean that you may be able to avoid doing that radiation early. If you had a Gleason nine it would mean your cancer was very aggressive and doing that radiation would make sense. With a Gleason 9 the chance of recurrence is very high.

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Profile picture for surftohealth88 @surftohealth88

@elliottpierce

Thanks so much for sharing your experience 👍🙂. Wishing you no BCR in the future 🍀🍀🍀.

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@surftohealth88 Thank you! I wish the same for your husband

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