Next surgery, no radiation?

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Helen321
Helen321 Member Posts: 1,459 Member
So i'm up for surgery number two. Opinion number one is remove entire rectum this round with no radiation. I don't like that opinion. He thinks it's just local so he doesn't see the need. We had this "what if" conversation once before for the 90% have this surgery and they're done segment, I gambled, I lost. I would rather not take a chance this round, suffer through and have a higher chance of outcome of beating this. Anyone had their rectum removed without radiation? From my reading, it seems standard. Next opinion will be Sloan. Let's see what they come up with.

Comments

  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
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    Yes
    I had no chemo or radiation before or after surgery.

    I was offered chemo + radiation before surgery to try to shrink the tumor. Surgery would have consisted of tumor removal only with a "maybe" temp colostomy.

    I determined that immediate removal with no chemo or radiation was the way I wanted to go. It meant that I have a perm colostomy, but that has been easy to live with.

    Marie who loves kitties
  • John23
    John23 Member Posts: 2,122 Member
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    Helen -

    You will find that the majority of rectal cancer victims will
    echo Marie's statement.

    Check out the UOAA board for more input!

    Chemo/Radiation will not catch all the cancer cells, but good
    surgical techniques may!

    None of us enjoy having an ostomy, but the alternative is not
    any kind of guarantee against cancer recurrence.

    Just make sure you get to see a qualified WOCN (Wound, Ostomy,
    Continence Nurse). A good one will help you choose the best place
    for a stoma. Your Colorectal surgeon is responsible for that
    scheduling! You should also insist that the sphincter is also left
    intact and in place. That will help you enjoy life as if the bottom
    portion was still there!

    You -will- do OK! You can read about other's experiences at that
    UOAA website regarding your situation. Many here, can attest to
    the same experiences!

    Good luck and better health!

    John
  • Helen321
    Helen321 Member Posts: 1,459 Member
    Options
    John23 said:

    Helen -

    You will find that the majority of rectal cancer victims will
    echo Marie's statement.

    Check out the UOAA board for more input!

    Chemo/Radiation will not catch all the cancer cells, but good
    surgical techniques may!

    None of us enjoy having an ostomy, but the alternative is not
    any kind of guarantee against cancer recurrence.

    Just make sure you get to see a qualified WOCN (Wound, Ostomy,
    Continence Nurse). A good one will help you choose the best place
    for a stoma. Your Colorectal surgeon is responsible for that
    scheduling! You should also insist that the sphincter is also left
    intact and in place. That will help you enjoy life as if the bottom
    portion was still there!

    You -will- do OK! You can read about other's experiences at that
    UOAA website regarding your situation. Many here, can attest to
    the same experiences!

    Good luck and better health!

    John

    I'm 42 so I'm not sure I'm
    I'm 42 so I'm not sure I'm at a point where I want to try to live with a lifelong ostomy. I feel like we should do the radiation and at least give it a try. I had the option of total removal first round and I opted out. Such a hard decision as it can change my entire life. I have to wait a few days to go to sloan so I think I'm going to spend the weekend just relaxing and not worrying about it.
  • Momof2plusteentwins
    Momof2plusteentwins Member Posts: 509 Member
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    Helen321 said:

    I'm 42 so I'm not sure I'm
    I'm 42 so I'm not sure I'm at a point where I want to try to live with a lifelong ostomy. I feel like we should do the radiation and at least give it a try. I had the option of total removal first round and I opted out. Such a hard decision as it can change my entire life. I have to wait a few days to go to sloan so I think I'm going to spend the weekend just relaxing and not worrying about it.

    I went with the chemo radiation first
    I just finished my 5 weeks of chemo radiation, now I am getting a CT scan next week to see how liver tumor is and talk to surgeon June 1st about surgery. My surgeon said the radiation shrinks the tumor and kills the bad cells around it to make it easier to take out.
    I think a second opinion is a good idea.
    Good luck
    Sandy
  • Momof2plusteentwins
    Momof2plusteentwins Member Posts: 509 Member
    Options
    Helen321 said:

    I'm 42 so I'm not sure I'm
    I'm 42 so I'm not sure I'm at a point where I want to try to live with a lifelong ostomy. I feel like we should do the radiation and at least give it a try. I had the option of total removal first round and I opted out. Such a hard decision as it can change my entire life. I have to wait a few days to go to sloan so I think I'm going to spend the weekend just relaxing and not worrying about it.

    I went with the chemo radiation first
    I just finished my 5 weeks of chemo radiation, now I am getting a CT scan next week to see how liver tumor is and talk to surgeon June 1st about surgery. My surgeon said the radiation shrinks the tumor and kills the bad cells around it to make it easier to take out.
    I think a second opinion is a good idea.
    Good luck
    Sandy
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
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    Helen
    I did radiation and chemo prior to my rectal resection. The premise was to shrink the tumor with radiation to allow enough clear margin and still be able to resect the two pieces. I did not have much wiggle room that separated me from a colostomy - it came down to a few centimeters difference between the two worlds in the end.

    The radiation did some damage for sure. The insides of your intestine will eventually slough up during a BM - think of how a snake sheds its skin. It's unnerving at first, because you don't know what it is or what's happening. Eventually, you figure out what it was.

    There was a six-week cool down period after the radiation before surgery to allow for some healing...but the window is time sensitive here...if you wait too late after the surgery, scar tissue builds up and could alter the surgery...it seems 6-7 weeks max is the norm here.

    And of course, they resected me successfully....there was no temporary or permanent ostomy. However, the problem here is that with all the radiation and a big surgery, the colon, rectum and anal areas "never get to rest."

    They get used every day and with all of that inflammation etc. etc. it is very painful and there are a whole host of issues in recovery. It was about 2-years before the bowel could even begin to try and re-train itself.

    For the next 2 years after that, it was a series of hit and miss periods....after 4 years, it finally become what it was going to be. There are still days where things can become unhinged and there are issues.....but it's no longer the norm as it was during those new formative years.

    Most people do better than I do here - at everything. My case is never close to the norm whether surgery or treatments...

    I think if I learned anything from the experience, I see why they do the "temporaries." It's to rest the colon and give it a chance to heal.

    With only a couple of centimeters to play with, I was afraid my temp would turn perm, so I asked them to resect instead.

    I've recurred a couple of times since then...and I've done 4-major surgeries - 55x radiation treatments to the rectum and lung....and 51x of all kinds of chemo.

    I've netted a recurrence despite all of the medical things done to me and with all of the various lifestyle changes that I've tried as well. I've just found that there is no single answer to cancer - no panacea for cancer - and absolutely no guaranteeds that anything you try will 'cure.'

    Only time will tell you that - only time will tell all of us that.

    Still, one has to fight for the 'hope' that each fight will result in a win - or in cases like mine, some extensions of life in between the fighting.

    My only suggestion would be to weigh the evidence from your doctors - research enough to understand what you are being told - and then go with your heart on what you feel is the best decision for you. If you do that, then you can never truly go wrong - or be wrong.

    The premise of radiation is more for shrinking the tumor to allow for resection than for eradicating it.

    Surgery is always the big stick that we wave - and sometimes we do radiation after a surgery as additional insurance....like in my case with the lungs.....we did surgery first to extract then went with radiation.

    With the colon and rectum, radiation would be first, followed by the surgery...so it's a little reversed.

    In my opinion, you would not want to do surgery first - and then radiate...none of my medical team thought that was the proper protocol...when I think about it, I still could not agree more.

    Best of luck with your decision.

    -Craig
  • smokeyjoe
    smokeyjoe Member Posts: 1,425 Member
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    Sundanceh said:

    Helen
    I did radiation and chemo prior to my rectal resection. The premise was to shrink the tumor with radiation to allow enough clear margin and still be able to resect the two pieces. I did not have much wiggle room that separated me from a colostomy - it came down to a few centimeters difference between the two worlds in the end.

    The radiation did some damage for sure. The insides of your intestine will eventually slough up during a BM - think of how a snake sheds its skin. It's unnerving at first, because you don't know what it is or what's happening. Eventually, you figure out what it was.

    There was a six-week cool down period after the radiation before surgery to allow for some healing...but the window is time sensitive here...if you wait too late after the surgery, scar tissue builds up and could alter the surgery...it seems 6-7 weeks max is the norm here.

    And of course, they resected me successfully....there was no temporary or permanent ostomy. However, the problem here is that with all the radiation and a big surgery, the colon, rectum and anal areas "never get to rest."

    They get used every day and with all of that inflammation etc. etc. it is very painful and there are a whole host of issues in recovery. It was about 2-years before the bowel could even begin to try and re-train itself.

    For the next 2 years after that, it was a series of hit and miss periods....after 4 years, it finally become what it was going to be. There are still days where things can become unhinged and there are issues.....but it's no longer the norm as it was during those new formative years.

    Most people do better than I do here - at everything. My case is never close to the norm whether surgery or treatments...

    I think if I learned anything from the experience, I see why they do the "temporaries." It's to rest the colon and give it a chance to heal.

    With only a couple of centimeters to play with, I was afraid my temp would turn perm, so I asked them to resect instead.

    I've recurred a couple of times since then...and I've done 4-major surgeries - 55x radiation treatments to the rectum and lung....and 51x of all kinds of chemo.

    I've netted a recurrence despite all of the medical things done to me and with all of the various lifestyle changes that I've tried as well. I've just found that there is no single answer to cancer - no panacea for cancer - and absolutely no guaranteeds that anything you try will 'cure.'

    Only time will tell you that - only time will tell all of us that.

    Still, one has to fight for the 'hope' that each fight will result in a win - or in cases like mine, some extensions of life in between the fighting.

    My only suggestion would be to weigh the evidence from your doctors - research enough to understand what you are being told - and then go with your heart on what you feel is the best decision for you. If you do that, then you can never truly go wrong - or be wrong.

    The premise of radiation is more for shrinking the tumor to allow for resection than for eradicating it.

    Surgery is always the big stick that we wave - and sometimes we do radiation after a surgery as additional insurance....like in my case with the lungs.....we did surgery first to extract then went with radiation.

    With the colon and rectum, radiation would be first, followed by the surgery...so it's a little reversed.

    In my opinion, you would not want to do surgery first - and then radiate...none of my medical team thought that was the proper protocol...when I think about it, I still could not agree more.

    Best of luck with your decision.

    -Craig

    I have no advice to offer
    I have no advice to offer you, just want to wish you good luck with the second opinion and with whatever decision you feel is right for you. If you do decide on radiation first you may want to check out the anal cancer board and what the ladies have posted on there too regarding how radiation affected them.
  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    Options
    Helen321 said:

    I'm 42 so I'm not sure I'm
    I'm 42 so I'm not sure I'm at a point where I want to try to live with a lifelong ostomy. I feel like we should do the radiation and at least give it a try. I had the option of total removal first round and I opted out. Such a hard decision as it can change my entire life. I have to wait a few days to go to sloan so I think I'm going to spend the weekend just relaxing and not worrying about it.

    Dear Helen
    Each person has to weigh their own life situations and beliefs when making their decisions. One size does not fit all.

    As long as you are confident in your decision, then go for it. Just never go back later and wonder 'what if'. There is no answer to that question, so it is not worth asking.

    Wishing you best outcome.

    Hugs,

    Marie who loves kitties
  • tommycat
    tommycat Member Posts: 790 Member
    Options
    smokeyjoe said:

    I have no advice to offer
    I have no advice to offer you, just want to wish you good luck with the second opinion and with whatever decision you feel is right for you. If you do decide on radiation first you may want to check out the anal cancer board and what the ladies have posted on there too regarding how radiation affected them.

    Helen
    I too, like Smokey Joe, pop over to the Anal Board because the people there have some of the same problems/solutions to the radiation fallout.
    The radiation will shrink the tumor, so that's why the Dr. wants to do it first. It worked for me, but that whole area was very painful for a long time, and I feel fortunate that I had an ilestomy for a year so it could cool down before the resection.
    Good luck~
    TommyCat
  • Helen321
    Helen321 Member Posts: 1,459 Member
    Options
    Sundanceh said:

    Helen
    I did radiation and chemo prior to my rectal resection. The premise was to shrink the tumor with radiation to allow enough clear margin and still be able to resect the two pieces. I did not have much wiggle room that separated me from a colostomy - it came down to a few centimeters difference between the two worlds in the end.

    The radiation did some damage for sure. The insides of your intestine will eventually slough up during a BM - think of how a snake sheds its skin. It's unnerving at first, because you don't know what it is or what's happening. Eventually, you figure out what it was.

    There was a six-week cool down period after the radiation before surgery to allow for some healing...but the window is time sensitive here...if you wait too late after the surgery, scar tissue builds up and could alter the surgery...it seems 6-7 weeks max is the norm here.

    And of course, they resected me successfully....there was no temporary or permanent ostomy. However, the problem here is that with all the radiation and a big surgery, the colon, rectum and anal areas "never get to rest."

    They get used every day and with all of that inflammation etc. etc. it is very painful and there are a whole host of issues in recovery. It was about 2-years before the bowel could even begin to try and re-train itself.

    For the next 2 years after that, it was a series of hit and miss periods....after 4 years, it finally become what it was going to be. There are still days where things can become unhinged and there are issues.....but it's no longer the norm as it was during those new formative years.

    Most people do better than I do here - at everything. My case is never close to the norm whether surgery or treatments...

    I think if I learned anything from the experience, I see why they do the "temporaries." It's to rest the colon and give it a chance to heal.

    With only a couple of centimeters to play with, I was afraid my temp would turn perm, so I asked them to resect instead.

    I've recurred a couple of times since then...and I've done 4-major surgeries - 55x radiation treatments to the rectum and lung....and 51x of all kinds of chemo.

    I've netted a recurrence despite all of the medical things done to me and with all of the various lifestyle changes that I've tried as well. I've just found that there is no single answer to cancer - no panacea for cancer - and absolutely no guaranteeds that anything you try will 'cure.'

    Only time will tell you that - only time will tell all of us that.

    Still, one has to fight for the 'hope' that each fight will result in a win - or in cases like mine, some extensions of life in between the fighting.

    My only suggestion would be to weigh the evidence from your doctors - research enough to understand what you are being told - and then go with your heart on what you feel is the best decision for you. If you do that, then you can never truly go wrong - or be wrong.

    The premise of radiation is more for shrinking the tumor to allow for resection than for eradicating it.

    Surgery is always the big stick that we wave - and sometimes we do radiation after a surgery as additional insurance....like in my case with the lungs.....we did surgery first to extract then went with radiation.

    With the colon and rectum, radiation would be first, followed by the surgery...so it's a little reversed.

    In my opinion, you would not want to do surgery first - and then radiate...none of my medical team thought that was the proper protocol...when I think about it, I still could not agree more.

    Best of luck with your decision.

    -Craig

    Thanks Craig! I am never
    Thanks Craig! I am never the norm either with anything, that's what's driving me crazy. Doctor says I'm following the 90, I end up the 10. Now he's saying 99 and so I'm hoping I'm in that 99. If there is a side effect to medication, I get it. If there is a .2 percent chance that people get nauseous, I get nauseous. My body does its own thing. It doesn't respond well to medications. I hardly take them. This time, for once, I want to be the 99. I'm going to see what Sloan says and weigh my options.
  • Helen321
    Helen321 Member Posts: 1,459 Member
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    tommycat said:

    Helen
    I too, like Smokey Joe, pop over to the Anal Board because the people there have some of the same problems/solutions to the radiation fallout.
    The radiation will shrink the tumor, so that's why the Dr. wants to do it first. It worked for me, but that whole area was very painful for a long time, and I feel fortunate that I had an ilestomy for a year so it could cool down before the resection.
    Good luck~
    TommyCat

    Thanks Tommycat. I'll pop
    Thanks Tommycat. I'll pop over there. The doctor feels the radiation will damage the anus.