Decision time on salvage treatment ..i am torn

Steve1961
Steve1961 Member Posts: 448 Member
edited February 2 in Prostate Cancer #1

Well, the first time should’ve been easy do surgery and get this crap out of my body but I chose the other radiation and now I have a reoccurrence.so I’m a candidate for both salvage surgery. Also cryotherapy and radiation radiation is out of the question. I’m not even thinking about it didn’t work the first time I don’t have trust in him and I don’t want put any more radiation in me …

I have 2 top urologist, thinking that the radiation didn’t get it all and this is the same tumor. Just a very small part of it about 1 centimeter PSA 1.6 right now. Everything seems to be enclosed.

dr 1…ucsf Head of urilogy surgeon ….thinks i should try 1 more focal treatment hoping that will take care of it ..if need be can do surgery if there is another failure ..my thoughs were ok ..since it was a failure and technically not a reoccurrence since it looks like the same tumor cryo may knock it out for good . But i have learned after 2 local treatments surgery is almost impossible tooo much scare tissue..hmmm why would this 40 year veteran tell me we could go to surgery if thete is another failure …..I am not going to call him out

dr2 ucsf cryo specialist.. thanks I am a good candidate for this also says that all of the Cryos he does are high-risk because when you have a failure usually comes back always high risk also says that no matter what I choose surgery, radiation or cry I only have a 50% chance this is why they suggest cryo it has the least side effects. Also, he did say we could do it a third time if necessary as long as it’s not close to the urethra, I must get clarification on this.

Dr 3 ucla professor head of urology surdeon …says inam a candidate for surgery and cryo ..cryo 50 chance less side effects surgery about 70 a bit more side effects The risk of incontinence goes from 5% pre-radiation to 20% after the radiation and the risk of total incontinence goes from one percent pre-radiation to 5% with radiation. The biggest complication is separating the prostrate from the rectum. He said that if he could not do it cleanly, but he would abort the surgery, but in the past that has not been a problem and he’s done over 3000 regular surgeries and 24 salvage surgeries so I will meet with him again Tuesday a phone call and I’ll ask him if he was in my shoes what would he do? I am very heavily leaning on surgery . Butttttt he may even tell me to do cryo and here is why apparently this is the same tumor the 3 of them except the radiologist, of course agreed that the radiation treatment did not get all of it why…. it could’ve been missed or the crib form could be radiation resistant, and I would actually feel better about cryotherapy, knowing that it’s just failure and not a new growth. Now you can see why I am torn, I know he’s not a radiologist but he did say we know that crib form can be radiation resistant and I flat out asked the radiologist that and he said no wow just wow I cannot believe that radiologist would say that I just lost all faith in. anyway any thoughts on this much? I hate to do it but im leaning taking it out Roll the dice and hope I’m not the 20% with mild or 5% with severe incontinence when it comes to errctike function I’m not too concerned about that. Thanks for listening.

Comments

  • centralPA
    centralPA Member Posts: 207 Member

    One piece of advise is to send those questions to the doctor in advance. It will make for a better discussion. I do this with my doctor, and he appreciates it.

    You wrote…”The million dollar  question.which i dont think anyone can answer ..did the original treatment fail meaning the tumor wasnt completely treated or is this a new growth “

    Since you plan to remove it, not just kill it in place, I think the million dollar question is whether it is it localized or not. If localized, the localized therapy should work.

    Best of luck, @Steve1961 with your appointment.

  • Steve1961
    Steve1961 Member Posts: 448 Member
    edited January 20 #3

    Eveything points to it being localized but the treatment didn’t work the first time and I’m leery about it working the second time because there will not be a third time it is of cribiform nature that’s what worries me

  • centralPA
    centralPA Member Posts: 207 Member

    I would ask the doctor these questions:

    • Where was the lesion in your first diagnosis?
    • Where is the lesion now? Same place as the first diagnosis?
    • How sure are we that it is localized?
  • Clevelandguy
    Clevelandguy Member Posts: 941 Member

    Hi,

    You mentioned a rib lesion which sounds like it could be cancerous, is it? Is the 4+4 cancer still in your remaining Prostate or the surrounding area? Point is with Cryo you have to find it to kill it. Maybe a PSMA PET scan to pinpoint the locations of possible cancer areas, then you can treat it.

    Dave 3+4

  • Steve1961
    Steve1961 Member Posts: 448 Member

    I am sorry for the confusion OK I’ve had a PSMA scan and an MRI. I had a second CT scan for the rib lesion, and they said that was nothing to worry about The doctors believe it is the same tumor that was treated before that they just didn’t get it. All it is contained to the prostrate MRI scan showed no expansion. What really worries me is the crib form nature from what I have read about 70% chance after radical proctectomy biochemical relapse and I’m thinking why would I want to go through this for if there’s such a high chance of a relapse that’s why I’m so stressed right now

  • Steve1961
    Steve1961 Member Posts: 448 Member

    I’m sorry for the confusion the confusion according to the second scan rib lesion seems to be benign. Everything is still in the prostrate it is the cribiform I’m worried about.

  • Steve1961
    Steve1961 Member Posts: 448 Member

    This is what concerns me everything that I read about cribi form it is not good

    f Grade Group5,6,7,8,9,10,11. Men who have cribriform morphology detected at radical prostatectomy (RP) are more likely to experience biochemical recurrence15, metastatic recurrence15, and prostate cancer-specific death16 independent of Gleason score. The incidence of cribriform morphology has been reported to be present on 25–34% of prostate biopsies17,18. Collectively, these studies highlight the impact of ICC/IDC on a considerable portion of men with prostate cancer who therefore have an elevated risk of developing lethal prostate cancer. However, despite advancements in knowledge about worse clinical outcomes, currently there are no systemic therapies specified for this aggressive type..

  • Steve1961
    Steve1961 Member Posts: 448 Member
    edited January 20 #10

    This ucla dr i trust he is very concerned answers all questions .. i will ask him straight up that i read of patients that had cribiform morphology at radical prostatectomy almost 70% of them had biochemical failure and cribiform is said to become distant mastesis as well and get his opinion on this what else can i do ..stinks This could sway my decision making yes surgery gives me greater chance of beating it if i remove it BUT DOES IT REALLY SINCE ITS CRIBIFORM….wow stressfulll

  • Steve1961
    Steve1961 Member Posts: 448 Member

    Surgery it is ….. app making tommorow..i feel bad i chose the ucla surgeon over the surgeon/urologist who has been watching over me at ucsf ..even though he has done more surgeries than anyone in the country ..over 6000 .. but his age has me concerned . 74 vs the 61 year old at ucla ..though they are friends ..he did say he would still look after me ……still feel bad ..i mean ucsf would’ve been a lot more convenient for the family and for me and everything but I don’t I mean he doesn’t look or act it, but when do you hang it up?

  • Old Salt
    Old Salt Member Posts: 1,258 Member

    Glad you made a decision. Hope the surgery will go well.

    I recommend that you read all the recommendations on this forum about the aftercare?

  • Steve1961
    Steve1961 Member Posts: 448 Member
    edited February 3 #13

    Thanks everyone is different ..i know one thing i am not cleaning foly bags i am going to use a new one everyday.. i’ve read a lot some people have pain. Some people have no pain some have gas somehow a lot of gas some have no gas it depends. I’ll just see how it goes.