After 5 year relapse post external beam radiation i decided

Steve1961
Steve1961 Member Posts: 625 Member
edited December 2023 in Prostate Cancer #1

To do cryotherapy…i am very upset though..here me out … as you all may know in 2018 i diagnosed with stage two prostate cancer confined to the prostrate Gleason 3+4. I went and saw a lot of doctors. A lot of test werevdone was confused about treatments and I was told by the surgeon and the radiologist that I have a 80% chance of beating this at age 57 being young i probably should have taken it out but I was just too damn afraid now i regret it and this is why …..the radiologist now wants to do breachytherapy on me 2 sessions. After talking with him he said it was unfortunate. I i had a relapse but I’m one of the 40% that it happens to and I said 40% that would mean I only have a 60% chance and I was told I had 80 and he tried to deny it ….so now I’m talking with the Doctor Who is going to do the cryotherapy, my neurologist/surgeon was concerned how he felt about the success of cryotherapy on Gleason eight high grate tumors so I asked the doctor that Question and this is “what his response was Post radiation recurrences are commonly high grade disease.  So, I have treated Gleason grade 4+4 cancer many occasion with cryo.  Post radiation recurrence is generally high recurrence rate about 50%.  Gleason grade 4+5 or higher has definitely high recurrence rate, but 4+4 case appears to be about same recurrence rate as gleason grade 4+3 or lower.

If I’m reading this correctly, the doctor that wants to do cryotherapy who has been there almost 35 years is telling me radiation reoccurrences are at about 50% so first I was told 20% then I was told 40 and now I’m being told 50 and now you can see why I’m upset if this is true which I believe so there’s no way I would’ve even thought about doing radiation as much as I hated to do surgery or I was afraid I would’ve done it But this is where I’m at I guess what I’m saying is maybe we should not trust all doctors surgeons and radiologist I don’t want to call them out because they’re trying to help me now and I can’t change the past but I really feel like it at this point I think I might just go to a different hospital and actually try to see it if I should have it removed … DAMN

Comments

  • Clevelandguy
    Clevelandguy Member Posts: 1,206 Member
    #2

    Hi,

    You can use Proton therapy after other forms of radiation therapy have failed but the choice is yours. I think I would do more homework from reputable sites on the internet for success rates of various procedures.

    Dave 3+4

  • lighterwood67
    lighterwood67 Member Posts: 395 Member
    #3

    I have followed you for a good while. Like all of us, you will have to fly that plane sooner or later (no decision is a decision in itself). Always good advice from above (Dave 3+4). Take care young man, again you are in the arena. Best of luck on your journey.

  • centralPA
    centralPA Member Posts: 341 Member
    edited December 2023 #4

    @Steve1961 , sorry that you find yourself doing battle with PCa again.

    What was the risk level of your initial PCa? You say T2, but that does not define risk. Were you Favorable Intermediate or Unfavorable Intermediate? You weren't Low Risk, since you were 3+4.

    Regarding your discussions with all of the doctors, remember the phrase "There are lies, damn lies, and statistics". There are a million different ways to slice and dice the data to get estimates of biochemical recurrence (BCR) following initial treatment. This 2023 paper says, "Despite early intervention, 20–50% of men with PCa will develop biochemical recurrence (BCR) within 10 years after initial definitive therapy, characterized by a rising serum prostatic-specific antigen (PSA)". That 20-50% is a big range, so all of your doctors were right.

    https://www.nature.com/articles/s41391-023-00712-z

    This paper also says (my bold font) "Post-RT, high-risk BCR is defined as an interval to BCR ≤ 18 months or a clinical GS 8–10 (identified on prostate biopsies), whereas low-risk BCR is defined as an interval to BCR > 18 months and a GS < 8"

    Based on your time to BCR (5 years?) and Gleason score of 3+4 = 7, you are in the low risk BCR range, which means you are in a lower risk of metastasis having experienced BCR. You have time. (Edit: you had a biopsy recently, that showed it is G8? What is your PSA and what is the doubling rate?)

    Highly recommend reading the article. It was published Sept 2023 in Nature, a very top tier publication. Full of super good nuggets.

  • Steve1961
    Steve1961 Member Posts: 625 Member
    #5

    The risk level is a high-grade tumor right now it’s 4+4 and it is cribriform I guess the only choice now is to do cryotherapy if it comes back again I might be able to treat it one more time as long as it’s not on the urethra and possible that I could have surgery then hopefully this will knock it out or at least maybe buy me another 567 years or for good it’s very very very small and actually I change my diet and started taking some herbal‘s my PSA went from 1.9 down to 1.56 so I guess I’ll just bite the bullet I’m not doing radiation again I’ll do cryotherapy and hope for the best

  • Steve1961
    Steve1961 Member Posts: 625 Member
    #6

    I’m sorry but then again maybe I should meet with the surgeon down at Ucla they specialize in salvage surgery there maybe I should see what that man says they are getting better at it with less serious side effects and apparently they do that surgery where they put the die in and they can see if there’s any scattered cancer anywhere I forget what they call it if I should have a session with him as well

  • centralPA
    centralPA Member Posts: 341 Member
    #7

    Like that article discusses, there are a bunch of salvage therapies, pluses and minuses to each. There’s a good reason to pick any of them, you just want that reason to align with your values. None of them are risk-free, of course. Just play your hand smart.

    I would go easy on yourself regarding your initial treatment. You just don’t know what path getting a RALP would have taken. Could be cured, could be where you are now but also wearing pull-ups 24/7. You played smart odds, but even a 99% successful treatment leaves 1in a 100 on the wrong side of lucky, and there isn’t anything in PCa that is that sure.

  • Steve1961
    Steve1961 Member Posts: 625 Member
    #8

    I asked my surgeon straightforward at this point are we still going for a cure or are we just going to management? He didn’t hesitate to say the long as it’s in the prostate still we are going for the cure I asked the Doctor Who will be performing the Cryo as well same thing and received the same answer They sent me information about the procedure and what is to expected and what is the first thing I see .

    Focal cryoablation uses highly pressurized argon gas to freeze tissue such as cancer cells. It is used as the first treatment of choice for a small prostate cancer and to treat patients who failed radiation treatment or other treatments. This treatment option is not meant to “cure” prostate cancer and is more intended to manage it .

    so how am I supposed to believe my doctors it says right there the procedure is supposed to manage it is not meant for the cure. Hopefully it can cure it but most of the time I guess it doesn’t from what I’m reading surgery gives me the best option, even though it comes with major side effects. . Wow .. I hate to hold your feet to the fire but I messaged both doctors and showed them this and wanted their thoughts. I hope you’re not gonna get upset at me.

  • centralPA
    centralPA Member Posts: 341 Member
    #9

    They are well-paid, make them earn it! Hard questions are good for everybody.

    I'm guessing the focal cryoablation sales team is trying to manage expectations with their "manage it" statement.

  • Steve1961
    Steve1961 Member Posts: 625 Member
    #10
    https://csn.cancer.org/discussion/comment/1711341#Comment_1711341

    I cant to back i time it seems to me like the only or the best chance you have at beating this is to remove it cancer does not belong in your body get it out. I wish the hell I did, and I know the side effects our greater this time I wish they would have stressed that more but I’m thinking I might, try to find someone that would just take it out living with side effects to me and dying of something else is better than dying of this ****

  • Steve1961
    Steve1961 Member Posts: 625 Member
    #11

    So of course, my urologist and the doctor that’s going to do the Cryo have not got back to me after I held her feet to the fire I asked urologist I thought we’re going for the cure or at least a very long-term treatment plan and it says right there Cryo is not meant to cure but to manage And I asked the Doctor Who is going to do the Cryo is there a chance that it is so small that it could knock it out completely or we at least hoping for that neither of them have got back to me yet? Wow so waiting now to meet with the surgeon from UCLA. Apparently they specialize in salvage prostate surgery. They’ve done lots of them there , wait to see what he says. Apparently they’re worried about the side effects. They really should’ve stressed that more the first time around. Wow you know the first time around the decision should’ve been easy. First step surgery second step radiation third and final step hormone treatment unfortunately, my first step didn’t work I think surgery probably would’ve. I truly do believe that. I hopefully make the right decision this time around by the way I don’t think I mentioned it. My PSA has dropped two times in a row from 1.9 down to 1.56. Not sure if that means anything but I have changed my diet and I’m on an herbal plan which I will still keep doing even after I treated.

  • Steve1961
    Steve1961 Member Posts: 625 Member
    #12

    Waiting to hear from the surgeon from UCLA. It seems like the first time around. I was very very misinformed. When asked the doctors are we still going for the cure this time? I was under depression that we are straightforward answer this is the answer I get from the doctor doing the cryotherapy.

    Mr. Sanford, your cancer is radiation failure. You have a long history of having this cancer. Generally successfully treating this kind of cancer even with radical prostatectomy is 50%. Compared with radical prostatectomy, cryoablation is associated with a lot lower side effects. That is why cryoablation is recommended.

    hopefully I’ll have the appointment with the surgeon from UCLA soon. I’m thinking that they’re hoping cryo could take care of it and at least give me another five or six years of good living before they do the surgery. I guess the surgery leaves major side effects. It’s the only reason I could think of.

  • Steve1961
    Steve1961 Member Posts: 625 Member
    #13

    Have a meeting with the final surgeon who specialize in salvage prostrate surgery at UCLA. I have a question …..does anybody besides me wait six months for treatment. This whole thing started on June 26 I’m starting to get a little nervous thing is my PSA has dropped from 1.9 down to 1.5 so I don’t feel that bad but six months waiting to get cancer treated, sounds like a long time to me

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