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mommyof2kds
mommyof2kds Member Posts: 519
edited March 2014 in Colorectal Cancer #1
HI everyone, I have some concerns and would like some opinions. I am planning for my ileostomy reversal on the 22nd. I have had it since June 2nd. I was diagnosed with stage 3 rectal cancer. I was just told by a distant relative who is a oncologist that I should avoid getting a reversal because of the high risk of re-occurance and that if I get a reversal it will be harder to treat, and maybe I should get a colostomy. What are your views on this, my oncologist didn't mention anything like this to me. I feel so confused right now, has any of you been told this... Thanks Petrina

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  • jsabol
    jsabol Member Posts: 1,145 Member
    #2
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    Get more info
    What disturbing information to get so close to surgery; can you make an appointment to clarify this with your onc before surgery? does the site here, either the Helpline or Information section, offer any more info? I do not have any info myself; hope you find the answers you need.
    Regards, Judy
  • lesvanb
    lesvanb Member Posts: 905
    #3
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    Ask your doc
    I agree with Judy about how disturbing to get this common right before your surgery, and to get more info from your doc. I have a friend who was dx with stage 3, had an ileostomy and had the reversal last spring. He is doing well other than the normal adjustments, which can be troublesome. So far, he is pleased he got the reversal.
  • mommyof2kds
    mommyof2kds Member Posts: 519
    #4
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    lesvanb said:

    Ask your doc
    I agree with Judy about how disturbing to get this common right before your surgery, and to get more info from your doc. I have a friend who was dx with stage 3, had an ileostomy and had the reversal last spring. He is doing well other than the normal adjustments, which can be troublesome. So far, he is pleased he got the reversal.

    Thanks guys for your input,
    Thanks guys for your input, yes it is very disturbing... I am wondering if anyone else heard such a thing.
  • Patteee
    Patteee Member Posts: 945
    #5
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    I am confused
    stage 3 rectal
    I am confused
    stage 3 rectal with an ileostomy
    mine was stage 3B colon with a colostomy
    so I am coming from my experience and wondering if there is a difference

    never ONCE did my oncologist or colorectal surgeon at Mayo (who did the initial resection and take down of colostomy 6 months later) - neither ever mentioned that a reattachment of colon ends would make future treatments more difficult.
    and
    what did he mean by high risk of re-occurance? Granted the risk is there, but it is not a given. What have you heard about chance of re-occurance? I come from more of a glass is half full attitude- as in, 70+ percent of NO re-occurance and thanking God I was one of the lucky ones who could have my colostomy reversed.

    I think it is a good idea to revist this with your oncologist- specifically, maybe ask him, if the cancer rears it's ugly head again, will it matter if I had the reversal or not? If it comes back, will it be in the same area and therefor more difficult to treat? I wonder if this is what your relative was getting at.
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #6
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    Many Opinions
    I would go for another opinion. That wasn't the best thing your "distant" relative could have told you. It seems that very many people have had reversals with no problems. You know how it goes, some oncologists have different ideas of how to treat cancer. One may say there is no hope while another will say, not a problem and they get rid of the cancer. It doesn't seem to me that you are giving your relatives opinion any more weight or credibility just because they are a relative, correct?
    -phil
  • mommyof2kds
    mommyof2kds Member Posts: 519
    #7
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    PhillieG said:

    Many Opinions
    I would go for another opinion. That wasn't the best thing your "distant" relative could have told you. It seems that very many people have had reversals with no problems. You know how it goes, some oncologists have different ideas of how to treat cancer. One may say there is no hope while another will say, not a problem and they get rid of the cancer. It doesn't seem to me that you are giving your relatives opinion any more weight or credibility just because they are a relative, correct?
    -phil

    Heh Phil, I just think that
    Heh Phil, I just think that if getting a reversal was not a good idea, I think my oncologist would have told me so, he is an amazing doc and I trust him. I just didn't need to have this hanging over my head now. I guess the only thing I can do , is to bring it up to my doc and see what he says. I was just wondering if anyone else heard such a thing
  • mommyof2kds
    mommyof2kds Member Posts: 519
    #8
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    Patteee said:

    I am confused
    stage 3 rectal
    I am confused
    stage 3 rectal with an ileostomy
    mine was stage 3B colon with a colostomy
    so I am coming from my experience and wondering if there is a difference

    never ONCE did my oncologist or colorectal surgeon at Mayo (who did the initial resection and take down of colostomy 6 months later) - neither ever mentioned that a reattachment of colon ends would make future treatments more difficult.
    and
    what did he mean by high risk of re-occurance? Granted the risk is there, but it is not a given. What have you heard about chance of re-occurance? I come from more of a glass is half full attitude- as in, 70+ percent of NO re-occurance and thanking God I was one of the lucky ones who could have my colostomy reversed.

    I think it is a good idea to revist this with your oncologist- specifically, maybe ask him, if the cancer rears it's ugly head again, will it matter if I had the reversal or not? If it comes back, will it be in the same area and therefor more difficult to treat? I wonder if this is what your relative was getting at.

    I believe that 70% is about
    I believe that 70% is about the same risk of re-occurance percentage that my oncologist stated. Yes, I had rectal cancer and have a ileostomy, not sure what the difference is in why you have a colonoscopy, I know it has to do with location. My surgeon has the colon already connected to the small part of the rectum that I have left. The ileostomy was for healing purposes. Maybe he is giving my colon the break to heal and thats why the ileostomy. I don't know, I never even thought to question it.. Thanks for your info... Seems like nobody has ever heard of this.. makes you wonder where some people get their info.. start to feel good about the prognosis and someone puts something else on my mind...
  • Patteee
    Patteee Member Posts: 945
    #9
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    mommyof2kds said:

    I believe that 70% is about
    I believe that 70% is about the same risk of re-occurance percentage that my oncologist stated. Yes, I had rectal cancer and have a ileostomy, not sure what the difference is in why you have a colonoscopy, I know it has to do with location. My surgeon has the colon already connected to the small part of the rectum that I have left. The ileostomy was for healing purposes. Maybe he is giving my colon the break to heal and thats why the ileostomy. I don't know, I never even thought to question it.. Thanks for your info... Seems like nobody has ever heard of this.. makes you wonder where some people get their info.. start to feel good about the prognosis and someone puts something else on my mind...

    no you are right- I had a
    no you are right- I had a colonoscopy because my initial cc surgery was an emergency- she told me then she would reconnect me when I was done with chemo. The colostomy was on the left side, ileostomy is on the right. My surgeon actually said before the take down surgery that I may still have an ileostomy, depended on if she got a good connection when she went back in. And the ileostomy would have been done to give the colon time to heal.

    I can't imagine the info your relative gave you- it doesn't make any sense. First, I would have thought that info would have come from your surgeon, not an oncologist. Personally I wouldn't give a whole lot of weight to an oncologist (over the phone), even if he is a relative :) I mean really- reversals of colostomys and ileostomys happen all the time. The only thing I can think of is IF there is a reoccurance and IF it is in the same area- that MIGHT make it hard to treat. But not sure I understand why it would be just because you ditched the ileostomy-
  • mommyof2kds
    mommyof2kds Member Posts: 519
    #10
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    Patteee said:

    no you are right- I had a
    no you are right- I had a colonoscopy because my initial cc surgery was an emergency- she told me then she would reconnect me when I was done with chemo. The colostomy was on the left side, ileostomy is on the right. My surgeon actually said before the take down surgery that I may still have an ileostomy, depended on if she got a good connection when she went back in. And the ileostomy would have been done to give the colon time to heal.

    I can't imagine the info your relative gave you- it doesn't make any sense. First, I would have thought that info would have come from your surgeon, not an oncologist. Personally I wouldn't give a whole lot of weight to an oncologist (over the phone), even if he is a relative :) I mean really- reversals of colostomys and ileostomys happen all the time. The only thing I can think of is IF there is a reoccurance and IF it is in the same area- that MIGHT make it hard to treat. But not sure I understand why it would be just because you ditched the ileostomy-

    Makes no sense to me either,
    Makes no sense to me either, but I did out a email in to my oncologist, just because I need peace of mind about getting this done.. Thanks Patteee..
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    #11
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    mommyof2kds said:

    Heh Phil, I just think that
    Heh Phil, I just think that if getting a reversal was not a good idea, I think my oncologist would have told me so, he is an amazing doc and I trust him. I just didn't need to have this hanging over my head now. I guess the only thing I can do , is to bring it up to my doc and see what he says. I was just wondering if anyone else heard such a thing

    Hmmm.....
    A re occurence comes from a cell or cells that might have been left behind or the mutation of a single cell gone wrong, not from a resection.....Maybe the scar tissue involved is what he is talking about on recovery and not re occurence...re occurence due to a resection makes absolutely no sense medically to me but Im not a Dr...I would ask him next appt....Good Luck to you
  • kristasplace
    kristasplace Member Posts: 957 Member
    #12
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    Confusion thickens...
    Petrina, i am with you about being overwhelmingly confused. As you know, i'm researching going the diet route, and the more i look, the more it's difficult to really understand what's going on. I'm trying to listen to what high profile oncologists are saying, and many of them say the same things about diet being the key, but i haven't yet heard that reconnection will cause recurrence. I'm hearing all kinds of new numbers as far as recurrence goes; that 90% of cancer survivors get a recurrence, or a new primary eventually.

    I'm one of those people who did not have a pleasant takedown, and i'm pretty sure i have a recurrence, BUT...i would do it again. I suffer, but i suffered with the bag too, just in a different way. You may have the scaring like some of us have, you may get severe constipation, you may not have a single problem at all. If you want my opinion, i would go for the takedown. Well, i did! lol! Of course i wasn't holding the information you have.

    One of my biggest questions about the information i'm receiving now, is why our doctors don't tell us everything we think they should. Apparently, doctors are so controlled by the AMA, they can lose their license by practicing medicine outside the AMA standards. I guess this includes their personal opinions, or dietary recommendations. Now i know why my onc recommended i see a nutritionist when i asked questions about diet.

    Good luck with your decision, Petrina. Like the others have said, shop for information from other sites. I haven't looked at the Gerson site yet, but it's been highly recommended to me to have a lot of info about cancer. www.gerson.com

    Hugs!
    Krista
  • PGLGreg
    PGLGreg Member Posts: 731
    #13
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    Miscommunication?
    I wonder if your oncologist relative understood that you already had the ileostomy. Maybe he thought you hadn't been operated on yet and you had to decide between a colostomy and a reversible ileostomy. That would make sense of his comment, because if you are to have a permanent colostomy, the surgeon can remove more tissue and have a better chance of getting all the cancerous cells. But I doubt that is relevant now that you've had your operation. Like others who have commented, I have a hard time understanding how reversing your ileostomy could increase chances of a recurrence. But ask your surgeon.

    --Greg
  • mommyof2kds
    mommyof2kds Member Posts: 519
    #14
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    PGLGreg said:

    Miscommunication?
    I wonder if your oncologist relative understood that you already had the ileostomy. Maybe he thought you hadn't been operated on yet and you had to decide between a colostomy and a reversible ileostomy. That would make sense of his comment, because if you are to have a permanent colostomy, the surgeon can remove more tissue and have a better chance of getting all the cancerous cells. But I doubt that is relevant now that you've had your operation. Like others who have commented, I have a hard time understanding how reversing your ileostomy could increase chances of a recurrence. But ask your surgeon.

    --Greg

    You guys are awesome.
    Thanks guys, at least I know now that I am not the only one who thought it was odd. I'll ask my oncologist just for piece of mind before the take down. You guys are awesome.
  • mommyof2kds
    mommyof2kds Member Posts: 519
    #15
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    PGLGreg said:

    Miscommunication?
    I wonder if your oncologist relative understood that you already had the ileostomy. Maybe he thought you hadn't been operated on yet and you had to decide between a colostomy and a reversible ileostomy. That would make sense of his comment, because if you are to have a permanent colostomy, the surgeon can remove more tissue and have a better chance of getting all the cancerous cells. But I doubt that is relevant now that you've had your operation. Like others who have commented, I have a hard time understanding how reversing your ileostomy could increase chances of a recurrence. But ask your surgeon.

    --Greg

    You guys are awesome.
    Thanks guys, at least I know now that I am not the only one who thought it was odd. I'll ask my oncologist just for piece of mind before the take down. You guys are awesome.
  • mommyof2kds
    mommyof2kds Member Posts: 519
    #16
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    mommyof2kds said:

    I believe that 70% is about
    I believe that 70% is about the same risk of re-occurance percentage that my oncologist stated. Yes, I had rectal cancer and have a ileostomy, not sure what the difference is in why you have a colonoscopy, I know it has to do with location. My surgeon has the colon already connected to the small part of the rectum that I have left. The ileostomy was for healing purposes. Maybe he is giving my colon the break to heal and thats why the ileostomy. I don't know, I never even thought to question it.. Thanks for your info... Seems like nobody has ever heard of this.. makes you wonder where some people get their info.. start to feel good about the prognosis and someone puts something else on my mind...

    I mean 70% chance of no
    I mean 70% chance of no re-ocurrance.
  • mommyof2kds
    mommyof2kds Member Posts: 519
    #17
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    mommyof2kds said:

    I believe that 70% is about
    I believe that 70% is about the same risk of re-occurance percentage that my oncologist stated. Yes, I had rectal cancer and have a ileostomy, not sure what the difference is in why you have a colonoscopy, I know it has to do with location. My surgeon has the colon already connected to the small part of the rectum that I have left. The ileostomy was for healing purposes. Maybe he is giving my colon the break to heal and thats why the ileostomy. I don't know, I never even thought to question it.. Thanks for your info... Seems like nobody has ever heard of this.. makes you wonder where some people get their info.. start to feel good about the prognosis and someone puts something else on my mind...

    I mean 70% chance of no
    I mean 70% chance of no re-ocurrance.
  • mommyof2kds
    mommyof2kds Member Posts: 519
    #18
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    mommyof2kds said:

    I believe that 70% is about
    I believe that 70% is about the same risk of re-occurance percentage that my oncologist stated. Yes, I had rectal cancer and have a ileostomy, not sure what the difference is in why you have a colonoscopy, I know it has to do with location. My surgeon has the colon already connected to the small part of the rectum that I have left. The ileostomy was for healing purposes. Maybe he is giving my colon the break to heal and thats why the ileostomy. I don't know, I never even thought to question it.. Thanks for your info... Seems like nobody has ever heard of this.. makes you wonder where some people get their info.. start to feel good about the prognosis and someone puts something else on my mind...

    I mean 70% chance of no
    I mean 70% chance of no re-ocurrance.
  • mommyof2kds
    mommyof2kds Member Posts: 519
    #19
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    Spoke to my oncologist. He
    Spoke to my oncologist. He told me that having a reversal does not increase your chance of a re-ocurance and if the cancer re-occurs, it will be easier to treat if you have had a reversal rather than the ileostomy. so this makes alot of sense to me. I don't know what kind of oncologist my cousins husband is, but I am glad he is not mine. LOL
  • Patteee
    Patteee Member Posts: 945
    #20
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    mommyof2kds said:

    Spoke to my oncologist. He
    Spoke to my oncologist. He told me that having a reversal does not increase your chance of a re-ocurance and if the cancer re-occurs, it will be easier to treat if you have had a reversal rather than the ileostomy. so this makes alot of sense to me. I don't know what kind of oncologist my cousins husband is, but I am glad he is not mine. LOL

    yeah!!!

    yeah!!!

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