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What's your radiation therapy experience as a pT3b cancer patient?
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.
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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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1 Reaction@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.
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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.
@surftohealth88 Thank you! I wish the same for your husband
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1 ReactionSuch a tough situation. Wondering what your radiation oncologist said and what you decided to do.
I'm cT3b with two seminal vesicles invaded, confirmed so far by biopsy. I'm 75 - I was expecting to live into my late 80s given how long my parents lived while in good shape - until this.
You're saying your urologist isn't quite certain what to do so you're getting a referral to a radiation oncologist. That sounds routine - I'd expect my urologist to refer me to an RO if there was a question in his mind about whether I should get radiation after surgery. See the RO. If you question the opinion of the RO after doing your best to understand it, get a second opinion.
I'd be interested in if the surgeon who did the RP on me removed any lymph nodes, and I'd be very interested in if cancer was found in them. I'd also be wondering what the MRI and especially the PSMA PET scan found. I'd be interested in a Decipher test as well. Even after that, I'd know everyone is still guessing, but I would take comfort thinking that at least they'd be trying to understand with the best tools available.
You could still live into the late 80s with your cancer case. What was your Gleason score. That could be a major factor in how long you will live. With the treatments and drugs, they had these days you could easily live to Your late 80s. Yes, a decipher score would be good to have, But that doesn’t mean you are going to die From reoccurrences. There has been many do drugs in the last few years and that will be more coming, You may live a lot longer than you think.
I was diagnosed in 2010 had surgery and radiation and multiple sets of drugs. Still here, even though I have a genetic problem BRCA2 Which prevents my body from correcting DNA errors. I’ve had four reoccurrences, but I’ve been undetectable for two years because the drugs are so good.
You state things as if you’ve had them done and don’t have the answer but it also sounds like you haven’t had any done. What treatments have you had?
@jeffmarc
My Gleason at biopsy, as well as post-op, was 3+4=7 with only 6-10% of cells being "4". I am now 7-months post-op. I have had two PSA levels at three and six months post-op, and both were < 0.1 ng/ml. I have my consult with a radiation oncologist in early December. The assistant/nurse scheduling me seemed confused as to why I was being referred to their practice "yet" or "at all". That further confirmed in my mind what you offered with the quotations of that well-regarded physician who established criteria, saying that you needed to have two or more criteria to be considered a candidate for radiation. I do not have two or more such criteria. It is just that I am a pT3b. My urologist was kind of "on the fence". He was feeling me out about how "I felt" about radiation, because he is concerned with the 25-50% probability of my cancer returning "within" 5 years post-op. He said it is just the "nature of being a pT3b...it always comes back." I asked: "well what is it...25-50% chance or 100% chance?" He said that he has not had a pT3b that didn't eventually recur. (so basically 100% probability of recurrence). But then...
This whole blog is full of guys with all kinds of prostate cancer categories, Gleason Scores, Decipher Test scores, etc., and all of the pathology that goes with it (EPE, Perineural invasion, surgical margins, Cribriform glands, seminal vesicle invasion, etc.), and we're all here because our cancer came back "at some point." The more I ponder it, the more I am convinced that no matter what type of prostate cancer you have, and even though the surgeon removed the vasculature that supplied the tumor cells (so they "should" die), it always seems to come back. The only thing that gives us 10 or more years of longevity post-prostatectomy is that the cancer grows slowly...even the ones termed "more aggressive." It's a crap shoot. I am a guy with a scientific education and background, having been the Director of Clinical and Anatomical Pathology in a few hospitals, before jumping to the manufacturing/sales side of the industry. I am used to the math...the science...the logic...and work effort that says "if you do this, then you can expect that." That does not apply to prostate cancer. As the famous line from the movie "A Passage To India" saw the Guru character say: "You can do what you want, but the outcome will be the same." That is a mystical, fatalistic version of "what will be will be" so don't drive yourself crazy trying to change things, because it is going to do what it is going to do...regardless. And that pisses me off. I..."we" have no control over this. That is why physicians say they "practice" medicine, because nothing has been perfected yet. They just do what their education and experience suggest they should do, and they hope for the best.
@climateguy
Howdy - thanks for the reply. I would think/hope that you received a copy of your post-op pathology report where the pathologist sliced and viewed "many" sections of your tissue, to include any lymph nodes. My lymph nodes were not removed, and that was noted in my pathology report. I am surprised that your physician did not tell you before or just after your surgery that (s)he was not removing your lymph nodes.
There is irony in ALL of this prostate cancer stuff. My dad lived to 99 years and 10 months WITH prostate cancer. He never received treatment and he never had his prostate removed. By the time it was discovered, his physician deemed him too old to be able to survive the surgery. He is estimated to have had it for 20 or more years. My maternal grandfather had prostate cancer for about 20 years. He did not have the RP surgery...he just went periodically for lupin injections right into the prostate (Ouch!!!). My maternal uncle had the RP surgery, and yet he is the one you passed away earliest at 86, just prior to his 87th birthday. The youngest and otherwise healthiest of the three of them, dies the earliest, and he didn't die of prostate cancer, he died of a massive cluster-bomb stroke. So, who knows what will happen. We pick our poison and we live - and die - with the outcome whatever and whenever that is.
@jeffmarc I haven't had any treatments. I've had a series of PSA tests, an MRI, a biopsy, and PET scan. The PET scan report stated there was no evidence cancer had metastasized, but it also stated there was no uptake in the prostate. The RO has ordered a pathologist for a second look at the biopsy, and he will order a Decipher. He describes my situation in his clinical note as "at least high risk" which implies to me he has observed something he wants to find out more about with his order that the biopsy be reevaluated. As things stand right now, he has a plan to put me on some sort of ADT for 6 months. One month into ADT he's going to start RT - 20 treatments spread over 4 weeks. He's conducting a randomized clinical trial I may sign up for where one arm is 5 treatments and the other arm is 20 treatments. He claims to have already concluded based on a previous study he did that the outcomes are equivalent. He says he's repeating the trial because he didn't convincingly randomize the patient selection last time.
I don't conclude its game over for me. I just see more uncertainty than the assumption I was living with, i.e. that since my mother and father did not get cancers and lived doing well into their late 80s that I might fare as well myself.