Complications after surgery, in germany

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  • Grinder
    Grinder Member Posts: 487 Member
    #42
    Anecdotal for a reason

    FM50... please don't misunderstand my intention here. I dont want to scare anyone away from radiation... I cited these cases to show that it is essential to consider all variables when assessing treatments...

    The most typical variable is the expertise and experience of those administering the procedure. 

    One thing we can learn from all these bad experiences, and others... assess all the risks and do what you can to minimize them.

    Most of this anecdotal evidence is from 2013... so procedures have improved since that time I would expect.

  • fullmoon50
    fullmoon50 Member Posts: 40
    edited March 2018 #43
    Grinder said:

    Anecdotal for a reason

    FM50... please don't misunderstand my intention here. I dont want to scare anyone away from radiation... I cited these cases to show that it is essential to consider all variables when assessing treatments...

    The most typical variable is the expertise and experience of those administering the procedure. 

    One thing we can learn from all these bad experiences, and others... assess all the risks and do what you can to minimize them.

    Most of this anecdotal evidence is from 2013... so procedures have improved since that time I would expect.

    All Is Well

    It’s all ok,G. I do understand your motivation and it will spur me to research outcomes and side effects. We were just both so excited to hear the good C (curative) word yesterday that reading anecdotes was a tiny buzz kill. I am realistic though so acknowledging there can be serious side effects and trying to counter/avoid them is very important. Plus I was sort of yanking your chain and trying to be slyly humorous. That being said, I was surprised the RO said that placing the hydrogel to guard the rectum is a hard sell with his patients. It’s relatively cheap, covered by Medicare, and effective. So the resistance puzzles me. My spouse is pretty sure he’ll have the gel inserted. Has anyone here had that treatment before radiation?  Thanks for all your shares.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,817 Member
    #44
    fullmoon50 said:

    Well,you just...

    ...rained on my parade! I’d have said “pissed on my parade” but that’s hardly ladylike. BTW, I’m mostly joking. Kinda.

    My spouse and I had a consult with radiation oncologist today. The news was a relief that the combined ADT and EBRT are curative in his case. This is after 2+ months of assuming he has bone mets and/or has treatment options limited by comorbidities. The RO was very reassuring about the outcome of 8 weeks of radiation to start after 60 days of ADT. I asked about side effects, both during radiation and long term. Stricture? Only with brachytherapy which he won’t be getting. Both urinary and bowel issues? Peak in early EBRT but are improved after about two weeks. Long term issues with both at less than 1% in his experience. He said the last time he observed chronic bowel issues was during his residency in 1992. Talked about hydrogel to protect rectum as patient’s choice but odds are patient won’t need it.

    Hmm... Was he overselling his work? I had promised my brain a break from cancer for a bit so it’s my own fault that I’m reading your anecdotal evidence at 1 in the darn morning. I will revisit the topic though and that’s a good thing. Thanks. I think. ;) <— a wink.

    Terminology

    fullmoon,

    Not wishing to be a killjoy, but your doctor either misspoke or you misheard.  No doctor, ever, can say with certitude that a treatment will be curative in a given particular instance.  What he no doubt meant was that ADT and EBRT are potentially curative in a case with his particulars.  He might reasonably then add that it is likely curative.

    By definition and in actuality, only two things are ever curative of PCa:  these are radiation and surgery. And they are themselves only curative under certain circumstances -- Staging, degree of metastasis, and some others.   HT can assist either of these two in cure, but is not by itself a curative modality.

    max

  • fullmoon50
    fullmoon50 Member Posts: 40
    #45
    Max Former Hodgkins Stage 3 said:

    Terminology

    fullmoon,

    Not wishing to be a killjoy, but your doctor either misspoke or you misheard.  No doctor, ever, can say with certitude that a treatment will be curative in a given particular instance.  What he no doubt meant was that ADT and EBRT are potentially curative in a case with his particulars.  He might reasonably then add that it is likely curative.

    By definition and in actuality, only two things are ever curative of PCa:  these are radiation and surgery. And they are themselves only curative under certain circumstances -- Staging, degree of metastasis, and some others.   HT can assist either of these two in cure, but is not by itself a curative modality.

    max

    Thanks

    Hi, Max. No, he (radiation oncologist) didn’t make any guarantees at all . I did hear him say that it is possibly/likely to be curative. The excitement was that there’s hope; contrasted with what we had been told several months ago. A urologist had told us that since he has high risk, aggressive PCa, the only thing available would be ADT and that it might fail as soon as in 2 years. The urologist further said that radiation might be used only for when ADT failed and bone mets became painful.

    We have since switched to a NCI endorsed cancer center where he had additional scans, including a Tesla3 MRI. Based on all the tests and scans since December, the MO and RO concur that combined ADT and EBRT are potentially curative in my husband’s case. Thank you for making sure I understand. I’ve learned a lot from everyone who posts here. Mary

  • Grinder
    Grinder Member Posts: 487 Member
    edited March 2018 #46
    FM50

    From what I understand, the hydrogel can displace the rectum to keep it away from the radiation target, and protects the rectum from burning in case there is an incident where the radiation misses the target for whatever reason. Even though mistargeting may be rare, it is wise to take every precaution necessary to reduce risk to an absolute minimum. I can only imagine that other patients have over-confidence in treatment that they do not want to tolerate the discomfort of the hydrogel. But the consequences of radiation burn proctitis is too severe, even in rarity, so you are being very wise to take every precaution necessary to reduce your risk. 

    Your spouse is extraordinarily fortunate and blessed to have you in his life... 

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,817 Member
    #47
    fullmoon50 said:

    Thanks

    Hi, Max. No, he (radiation oncologist) didn’t make any guarantees at all . I did hear him say that it is possibly/likely to be curative. The excitement was that there’s hope; contrasted with what we had been told several months ago. A urologist had told us that since he has high risk, aggressive PCa, the only thing available would be ADT and that it might fail as soon as in 2 years. The urologist further said that radiation might be used only for when ADT failed and bone mets became painful.

    We have since switched to a NCI endorsed cancer center where he had additional scans, including a Tesla3 MRI. Based on all the tests and scans since December, the MO and RO concur that combined ADT and EBRT are potentially curative in my husband’s case. Thank you for making sure I understand. I’ve learned a lot from everyone who posts here. Mary

    Great

    Thanks for letting us know that the doc did the right thing, and qualified his assertions.

    I understand exactly where your feelings and relief are coming from.  You might not be a classic rock fan, but Pink Floyd, in their hit Hey You has a line "Don't tell me there's no hope at all; united we stand, divided we fall...."

    My first cancer was much worse than my second (PCa).  A surgeon and family practicioner told me, based on CT, that I was "totally engulfed" in Lymphoma (neck to pelvic region/groin; spleen covered.  Lungs covered, escophagus compressed with nodes, as was my heart cavity). 

    My wife and I went to our first meeting with a medical oncologist pretty terrified. What I most wanted was a fighting chance, some reasonable cause for hope. It turned out the strain of Lymphoma was very treable with a chemo cocktail. Unlike PCa, chemo is curative of Lymphoma and Leukemia; usually, it is the only tool available for these blood cancers.

    Your husband is blessed with a fighting chance, a cause for hope, a sense that you can do something.

    St Paul says "we hope against hope."  Words to live by.  I know you will continue to share his fight regularly,

    max

  • fullmoon50
    fullmoon50 Member Posts: 40
    #48
    Max Former Hodgkins Stage 3 said:

    Great

    Thanks for letting us know that the doc did the right thing, and qualified his assertions.

    I understand exactly where your feelings and relief are coming from.  You might not be a classic rock fan, but Pink Floyd, in their hit Hey You has a line "Don't tell me there's no hope at all; united we stand, divided we fall...."

    My first cancer was much worse than my second (PCa).  A surgeon and family practicioner told me, based on CT, that I was "totally engulfed" in Lymphoma (neck to pelvic region/groin; spleen covered.  Lungs covered, escophagus compressed with nodes, as was my heart cavity). 

    My wife and I went to our first meeting with a medical oncologist pretty terrified. What I most wanted was a fighting chance, some reasonable cause for hope. It turned out the strain of Lymphoma was very treable with a chemo cocktail. Unlike PCa, chemo is curative of Lymphoma and Leukemia; usually, it is the only tool available for these blood cancers.

    Your husband is blessed with a fighting chance, a cause for hope, a sense that you can do something.

    St Paul says "we hope against hope."  Words to live by.  I know you will continue to share his fight regularly,

    max

    Juxtaposition

    Pink Floyd and St. Paul - love both messages! Thank you.

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