SBRT 18 mo. ago and cancer is back

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vichardy
vichardy Member Posts: 8 Member
edited June 2022 in Prostate Cancer #1

Greetings. I just joined the forum to help with my research to find the best therapy. I'm 73 and ~ 20 mo. ago had a rising PSA to about 9 with biopsy showing low risk (3+3) and high volume (5 of 6 cores positive, one at 80%.). So I elected for SBRT, Cyberknife and now 18 mo later my PSA went from 0.6 to 1.5. A subsequent biopsy showed 2 of 6 cores positive and one at 80%.

So now I have to find a path. For me, RP is out, especially since it's now a 'salvage' situation where the SE will almost certainly be bad, especially for incontinence. My urologist won't even consider doing an RP himself as it requires a lot of skill and a good support team.

I'm looking at the so-called focused therapies:

HDR, HIFU, cryotherapy and IRE (ala 'NanoKnife).

Of the choices, NanoKnife looks to be the most promising for SE (None, since it's running current across tumors within the prostate and there is no radiation, heat or cold that gets to surrounding tissues) but there are questions about recurring cancer. Also, it's still new enough that I'm pretty sure that Medicare or most any insurance company will not cover it, so it's likely $10K to $30K out of pocket. And it's hard to find doctors that have done many.

I'm not finding great news on HIFU and some cautions as well. It may also not be covered by Medicare, etc. The usual SE are also present.

Cryo is a possibility although I'm worried about damage and SE as well. I'm set up to have a consultation with a surgeon next week to discuss.

I'm actually leaning toward HDR since it seems to be a proven therapy with limited SE from what I can see. I'm a bit concerned with yet another dose of radiation on top of the SBRT as it's cumulative but I have more research to do, and I see an HDR doc on Friday.

The other overall concern is that with the focused therapies there's always the possibility that the cancer will reappear yet again, but at this point it's the nature of the beast.

Anyway I wanted to see what you guys think about these choices.


Vic Hardy

Comments

  • Clevelandguy
    Clevelandguy Member Posts: 1,087 Member
    edited June 2022 #2
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    Hi,

    Sorry to hear about your reoccurrence, something none of us cancer survivors likes to hear. I was wondering if you had any body scans, bone scans, ext. to see if your cancer has spread beyond your Prostate. If you have no further spread then the choice is between you and your team of Urology and Oncology. From what other people have said on this forum to my recollection radiation on top of radiation is not a good thing. Did your doctors mention some kind of ADT drugs to lower testosterone and starve the cancer? I have included an link to radiation then more radiation.

    Dave 3+4

  • VascodaGama
    VascodaGama Member Posts: 3,692 Member
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    Hi,

    I am also curious on the results of the image studies you did before and after SBRT.

    In fact I am surprised that you have chosen Cyberknife to treat a voluminous case in a set of 5 positive out of 6 cores. This type of treatment is usually an option for contained cases but in your status there were a high probability of cancer spread from the biggining, requiring an extensive radiation protocol (the gland, the surrounding areas and close lymph nodes).

    Now, I am most curious about the positive biopsy you received after the SBRT. It seems that you are again looking for aa salvage treatment for a contained approach disregarding spread.

    In your shoes I would wait longer, allowing time to avoid the RT bouncing effect (2 to 3 years in SBRT) and then get second opinions at another specialist.

    In any case, I recommend you to get a 18F or 68Ga PSMA PET scan before embarking in a salvage.

    Best wishes and luck in this journey.

    VGama

  • vichardy
    vichardy Member Posts: 8 Member
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    Thanks for the inputs guys. I did have a PSMA (F-18) on 4/15/22 and it indicated that the cancer is still confined to the prostate, probably the best news out of a bad situation.

    My urologist was not keen to start me on Lupron at this stage and confined his recommendations to RP and cryo. I asked him about brachy and he was concerned about too much radiation. My RO thought that between cryo and brachy that HDR would be the best approach and I have read many articles where SBRT followed by HDR is an acceptable choice. I read recently that HDR actually delivers more radiation to the tumor than SBRT while delivering less to the surrounding tissues that we care about. But you make a good point which I will bring up with the HDR specialist tomorrow. That concern could be a positive for cryo.

    VGama, you make a great point re: waiting. I've actually been thinking about that for a couple days. I'm also posting on a PC forum at healingwell.com and there's a guy who had Cyberknife and a PSA progression that went: PSA’s post SBRT 1.1, 1.1, .9, 1.8, 2.7, 1.0, 0.3, 0.6, 0.8, 0.4. His team did not rush to do a scan or biopsy at 2.7 and were confident that it would come down. However, his pre SBRT biopsy volume was lower than mine, which was 80% in one of the cores. So my recent biopsy showed 4 of 6 cores benign but one core at 80% so it appears to be growing and I'm a bit nervous going back on AS. If by 'disregarding spread' you're referring to volume?

    My urologist thinks I should proceed with one of the therapies and not wait and I'm concerned about the cancer escaping the prostate which seems to be a much worse issue.

    My biopsy was on 5/16 and I may just get a PSA from a local lab even though it's a bit early after the biopsy to do that. In any event

    So I will put the AS/bounce question to my RO as well as the HDR specialist that I'll talk with tomorrow.

  • VascodaGama
    VascodaGama Member Posts: 3,692 Member
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    Hi again

    I think that you should inquire on the reason for an earlier salvage suggested by your doctor. Cancer doesn't spread overnight for you to be worried on that.

    The positive biopsy confirms the need of further treatment but nobody can say that recurrence is only due to those two areas verified by the pathologist.

    I would insist in having additional image studies, this time with a 68Ga PSMA PET, which is superior to 18F in lymph nodes tissues. I also recommend a bone scan.

    The case you commented of the Cyberknife patient that experienced bounce PSA is not unique. It is reported that more than 50% of guys from radiation therapies experience bounce. One SBRT patient on this forum waited 4 years before seeing his psa to start going down from 3.68 to 0.06 ng/ml.

    I am curious for the conclusions you receive today in your consultation.

    Best wishes,

    VG

  • vichardy
    vichardy Member Posts: 8 Member
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    I copied the update just posted on healingwell.com:

    Well, I had a consultation with Dr. McChord in Atlanta re; HDR as a focal therapy and he declined to move forward because of my history before the Cyberknife therapy of high volume on the right side and now after my recent PSA rise and subsequent biopsy of one section on the right side also up to 80%. He said that he could attack the existing tumor but is concerned that at some point I'll need whole gland therapy and the total dose will be too hard on surrounding structures such as rectum and bladder.

    He recommended I look into proton therapy because its ability to better control beam length, so I have a consultation set up at Emory Proton Therapy in Atlanta in two weeks.

    On the possibility of me just going through a post-SBRT PSA bounce, he was skeptical as is my RO but said he would support a 3 month period of AS.

    So back to the research. I also need to get a consultation with the cryo expert as it's still a candidate as well as HIFU and I guess even IRE/Nanoknife. I'm already stressing with the cancer 'escaping' the prostate and just don't know how to gauge when that could happen. I guess at some point I may submit to RP, though I hope later than sooner...

  • VascodaGama
    VascodaGama Member Posts: 3,692 Member
    edited June 2022 #7
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    Trusting the people treating us is a good step forward when we are in doubt.

    In any case, based on my continuing fight against the bandit and the many PCa cases stories I have followed, I believe that we fair better when we collect must data on our status and gather several opinions from different sources.

    Image studies help alot in making decisions. I wonder if the biopsy results of may 2022 and the 18F PET of 2020 are enough to judge your present recurrence as contained.

    In your shoes I would insist in having additional exams, particularly in testing the lymph nodes and get second opinions from totally separated experts.

    I am sorry if my comments do not fit your interests but fearing that the cancer "may escape" the gland is not reasoning properly without trying to get the evidence that in fact the cancer is still contained.

    Best wishes,

    VGama

  • vichardy
    vichardy Member Posts: 8 Member
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    I've talked with four docs who've reviewed my scans and they all say it's contained, thanks.

    However, in the course of my research, I've recently had 2 specialists in the radiation field say that my pathology report from the recent biopsy has the notation of 'radiation effect' for the two (of 6) areas labeled as adenocarcinoma. They both say that it's almost certainly cells still in the process of dying, that it can take 3 or more years for the process to complete. I guess if true (and of course I hope it is), there could still be active cancer cells in there that have not been radiated, we'll see.

    The other thing is I had another PSA test on 6/13 and it dropped from 1.46 to 1.09. Both specialists said this is a bounce and to wait and monitor the PSA. So my urologist agreed that I go back on AS. I think my local docs did jump the gun.

    I'm also waiting for my 2nd opinion of the biopsy report from Epstein at John Hopkins. His view should be interesting.

  • vichardy
    vichardy Member Posts: 8 Member
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    Also, I had a recommendation to talk with Dr. Martinez in Detroit about the possibility that he would do HDR if needed. He was one of the two docs who said I should wait at this time but did say absolutely he could and would treat with HDR (or even LDR) if my condition warranted it.

    And I talked with a specialist, Dr. Clarke in Charleston about cryotherapy. I got a bad feeling about the SE of that procedure and would put that low on my priority list. He did say that his organization is investing in HIFU equipment and training, but it's the opposite of cryo in that it generates heat that also generates SE.

    I did finally get to talk to the NanoKnife facility at Sloan Kettering in NYC and they don't treat prostates that have been previously radiated. I think there's a study going on through 2024 and I suspect that the FDA has not yet approved this therapy for prostates outside of a sanctioned study, and I'm sure that medicare doesn't cover it yet either.

    I had to put off my consultation on proton therapy but I'll report back what I find out.

  • Old Salt
    Old Salt Member Posts: 1,419 Member
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    You did a lot of 'work' and got some real answers. Perhaps not surprisingly, the responses were varied.

    It does appear to me that no immediate action is required except to continue your research. Let's hope that those lesions that were identified earlier as a result of the biopsy are, in fact, merely areas where cancerous cells are still 'dying'. Did you get input on those from the Johns Hopkins pathology specialists?

  • vichardy
    vichardy Member Posts: 8 Member
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    Still waiting on the Epstein report; should be here today or tomorrow. I'll post the results here.

  • vichardy
    vichardy Member Posts: 8 Member
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    Epstein report arrived. As with the local biopsy report, no gleason score was assigned. He did bump down the volume of the smaller tumor sample to 10% from 20% and left the following note:

    NOTE: The tumor in this case shows treatment effect in that there are individual cells with abundant vacuolated cytoplasm where the nuclei show smudged chromatin and absent nucleoi. Cancers which show radiation therapy effect have in some cases been associated with a better prognosis than tumors which appear unaltered by radiation (CANCER 115:673-9, 2008).

    So I don't think this changes anything either way except for confirmation that radiation effect is indeed going on here but without any assurances that cells without radiation effect are gone (for now).

  • Old Salt
    Old Salt Member Posts: 1,419 Member
    edited June 2022 #13
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    I guess, wait and see for the time being. PSA tests every 3 month or so. Hopefully the PSA will go down or stabilize around 1 (ng/ml).