What's your radiation therapy experience as a pT3b cancer patient?

Posted by rlpostrp @rlpostrp, Oct 18 5:09pm

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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nishamunst | @nishamunst | 12 hours ago

Such a tough situation. Wondering what your radiation oncologist said and what you decided to do.

elliottpierce | @elliottpierce | Oct 20 10:40am

In reply to @surftohealth88 "@elliottpierce Thanks so much for sharing your experience 👍🙂. Wishing you no BCR in the future..." + (show)

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

jeff Marchi | @jeffmarc | Oct 20 10:36am

In reply to @rlpostrp "@jeffmarc My Gleason score was 3+4 = 7 with 6-10% cells rated "4". So it was..." + (show)

@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.

rlpostrp | @rlpostrp | Oct 19 11:01pm

In reply to @jeffmarc "@rlpostrp I don’t see you mention your Gleason score anywhere. That could be a major factor..." + (show)

@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

surftohealth88 | @surftohealth88 | Oct 19 8:51pm

In reply to @rlpostrp "Thank you for relating your experience. In my posted question, I failed to state what my..." + (show)

@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.

jeff Marchi | @jeffmarc | Oct 19 8:44pm

In reply to @rlpostrp "Thank you for relating your experience. In my posted question, I failed to state what my..." + (show)

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

rlpostrp | @rlpostrp | Oct 19 8:14pm

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.

surftohealth88 | @surftohealth88 | Oct 19 7:26pm

In reply to @elliottpierce "I'm pTb3 and so far I haven't had any other treatments since my surgery almost 3..." + (show)

@elliottpierce

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

elliottpierce | @elliottpierce | Oct 19 7:22pm

I'm pTb3 and so far I haven't had any other treatments since my surgery almost 3 years ago. All of my post surgical ultra-sensitive PSA tests have come back < .006. My Gleason score was 7 (4+3). But, I also had cribriform and Intraductal noted on my post surgical biopsy which also puts me at a higher risk of BCR. Margins were negative. After surgery, I had Genomic testing and I don't have any of the genes that would increase my risk of cancer. I know that there will always be a chance that my cancer could return. But, I personally feel comfortable waiting for a rise in PSA before undergoing any additional treatments.

dhasper | @dhasper | Oct 19 5:16pm

In reply to @surftohealth88 "@dhasper Yes, ultrasensitive makes us comfortable and our hospital orders ultrasensitive. We did the first test..." + (show)

@surftohealth88 Yes, the logic of your last paragraph is compelling. After I wrote, I thought ultra-sensitive also would provide good information on doubling time, although I suppose you could extrapolate backwards to the date of surgery for a very rough estimate. Right now, the plan is that I need to make an appointment if it ever shows a result of 0.1 or greater. I dont know what the plan as I still would be in the zone where nothing would likely show on psma.. I sure would want slavage at that point, though.