adjuvant chemo with ostomoy

4law
4law Member Posts: 110
edited March 2014 in Colorectal Cancer #1
Following radiation and 5fu chemo I had surgery a couple of weeks ago for rectal cancer - stage 2. All results were great - no spread - all lymph nodes were clean. I was told by oncologist I will need 6 months of adjuvant chemo (5fu and leucovorin). Problem is that I have a temporary ostomy that surgeon told me would be reversed in about 8-10 weeks post surgery. Oncologist wants to wait for reversal for 6 months, following chemo. This was new unexpected news that hit me pretty hard. I would prefer to have ostomy reversed as soon as possible and continue with chemo. Oncologist did not want to wait to start chemo until after reversal because he felt it would be too long a wait. I would prefer starting chemo soon (4 weekly sessions, followed by 2 weeks off) and have reversal surgery during a 2 week off cycle. Has anyone faced similar issues?

Comments

  • fedester
    fedester Member Posts: 753 Member
    hi 4law,
    well here was my situation, dx stage 11 no nodes involved had temp ileo, started chemo 5fu/leuv once a week for 26 weeks.started chemo july 04, had ostomy reversal 9/9. my surgeon an oncologist worked together to see if it could be done 1/2 way between treatments. i also wanted the reversal to be done before the new year so it would bee covered by insurance at a higher percentage. i was off treatment approx 2 weeks before reversal and then waited 2 weeks before going back on treatments. i was lucky with the whole thing not many side effects, blood counts were good also. the only thing my oncologist was worried about was diarrhea when chemo started again. after the reversal i did notice that i was more tired after treatment than before reversal because with the ostomy it passes thru your body faster because you are always going in the bag.
    hope this helps!!!!!!!!!
    ask if i can help again.
    all the best
    bruce
  • 4law
    4law Member Posts: 110
    fedester said:

    hi 4law,
    well here was my situation, dx stage 11 no nodes involved had temp ileo, started chemo 5fu/leuv once a week for 26 weeks.started chemo july 04, had ostomy reversal 9/9. my surgeon an oncologist worked together to see if it could be done 1/2 way between treatments. i also wanted the reversal to be done before the new year so it would bee covered by insurance at a higher percentage. i was off treatment approx 2 weeks before reversal and then waited 2 weeks before going back on treatments. i was lucky with the whole thing not many side effects, blood counts were good also. the only thing my oncologist was worried about was diarrhea when chemo started again. after the reversal i did notice that i was more tired after treatment than before reversal because with the ostomy it passes thru your body faster because you are always going in the bag.
    hope this helps!!!!!!!!!
    ask if i can help again.
    all the best
    bruce

    Bruce,
    I believe my oncologist is worried about side effects of chemo interfering with surgery for reversal. I don't mind a litle discomfort if it means reversal can be done sooner. When I heard that he wanted to wait 6 months (after being told by my surgeon it would be reversed by April 1), it hit me so hard I couldn't think straight and I wasn't well preapred with questions, etc. I will make an appointment to see him again, but I want to be better prepared with better questions -- I really don't want to wait 6 months if it can be done sooner. Drawing on your experience, do you have any suggested questions I should have ready, in order to make an informed decision? Thanks!
  • RunnerZ
    RunnerZ Member Posts: 185
    4Law,
    I am a 6 year survivor of stage 3 rectal cancer. I was fortunate enough that I did not have to have a temporary ostomy after surgery, although my bowel functions were more than a bit unpredictable for the length of my 6 months of chemotherapy and beyond. I would say recommend that you just follow your Dr.'s advice. I know an ostomy can't be easy, but many people on chemotherapy without an ostomy hav theri own brand of trouble. You should just be so happy form your stagin and prognosis, and let your body not have to stress over another surgery during the chemo. Your doctors have done well so far, let them finish the job!
  • 4law
    4law Member Posts: 110
    RunnerZ said:

    4Law,
    I am a 6 year survivor of stage 3 rectal cancer. I was fortunate enough that I did not have to have a temporary ostomy after surgery, although my bowel functions were more than a bit unpredictable for the length of my 6 months of chemotherapy and beyond. I would say recommend that you just follow your Dr.'s advice. I know an ostomy can't be easy, but many people on chemotherapy without an ostomy hav theri own brand of trouble. You should just be so happy form your stagin and prognosis, and let your body not have to stress over another surgery during the chemo. Your doctors have done well so far, let them finish the job!

    Hi RunnerZ -- thamnks for reply.
    Thanks for reply. My wife feels same as you. What kind of "troubles" do you feel may be possible if I insist on reversal along with chemo? Thanks
  • taraHK
    taraHK Member Posts: 1,952 Member
    I haven't really faced a similar issue -- my 'story' is similar to yours (rectal cancer; presurgical chemoradiation followed by surgery followed by chemo) except that I was stage 3 (one lymph node affected) and also I have a permanent colostomy. So, I didn't have to face any decisions about timing of reversal. I did have diarrhea during the chemo, so I guess that is one consideration. I was on 5FU + leucovorin. My side effects were pretty minimal (fatigue, nausea). Good luck with your discussions, deliberations and decision.
    Tara
  • neon356
    neon356 Member Posts: 137 Member
    I'd follow the Dr's advice and wait. Chemo can lower resistance, and slow down the healing process. Also, there's always the chance of post op complications such as adhesions, blockages, etc., which could cause even more postponement of your chemo. Having an ostomy isn't that bad once you get used to it, and six months isn't really that long a wait.
    Carl
  • jana11
    jana11 Member Posts: 705
    4law said:

    Hi RunnerZ -- thamnks for reply.
    Thanks for reply. My wife feels same as you. What kind of "troubles" do you feel may be possible if I insist on reversal along with chemo? Thanks

    One HUGE issue is that chemo slows your ability to heal.... which can cause HUGE problems recovering from an ostomy reversal. Talk to the surgeon, but I bet it will be a BIG problem.

    Good luck jana
  • kangatoo
    kangatoo Member Posts: 2,105 Member
    neon356 said:

    I'd follow the Dr's advice and wait. Chemo can lower resistance, and slow down the healing process. Also, there's always the chance of post op complications such as adhesions, blockages, etc., which could cause even more postponement of your chemo. Having an ostomy isn't that bad once you get used to it, and six months isn't really that long a wait.
    Carl

    Hi 4law and welcome from OZ. I was stage 2, surgery to remove most of the sigmoid and descending colon, then 6 months 5fu/leuc. I was fortunate enough to not need a colostomy. However, there is a lot of truth in the previous posts. The comments here about post op chemo and surgery during chemo are well founded. In my case I was told that chemo needed to be started as soon as possible. I had surg. aug. 03 then started chemo sept 03. Even after only one month post surgery I found that the wound took some time to heal. It did not cause many problems but was certainly sore for longer than it should have. My mobility was somewhat hindered. It stands to reason that chemo kills off good cells as well as bad and so must have an effect on fast healing...I was told this would be the case by my onc. and surgeon. I was also told that my chemo should be very tolerable...in fact I happenned to be the 1 in 1000 that had very bad side effects...it does happen. In the same way I was told that if I had an epidural for an anaesthetic during surgery I would probably fair better post op. Unfotunately once again I was the 1 in 1000 case that had a bad reaction....my epidural during the surgery did not work correctly.
    I tell you this because all of us react to surgery and chemo in different ways. Some tolerate it very well, others not so.
    Having said that I think your surgeon and oncologist take all of this in account in determining their course of action. I, personally would not like to go thru the bad experiences I had while doing a course of chemo and submit myself to surgery during the course of the chemo. Keep in mind that my experiences were not typical but "unusual". I guess it is fine for me to offer this advice even tho I do not have a colostomy..I admit I do not know what that is like. I think your surgeon and onc. are trying to errr on the side of caution....in your best interests.
    cheers from your friends in OZ, kanga n Jen
  • MJay
    MJay Member Posts: 132
    Hi 4Law~

    I certainly can understand your desire to have th reversal ASAP... I have a permanent colostomy and absolutely dreaded it before I had the surgery. I stared chemo 6 weeks after surgery and chemo successfully stopped me from healing. If it didn't stop the healing then it slowed it to such a rate that I did not notice any improvement.

    I did have diarrhea during chemo and the colostomy made it very convenient... if diarrhea can ever be convenient. I was never tied to the bathroom and I was able to empty during commercials so I never missed any of my shows. (It may be a small "bright side" butI will always find one).

    Knowing how I responded, I would advise waiting until you are done with chemo to reverse it. Maybe making a list of what is most important to accomplish first would make it easier for you to make and accept your decision. And, hey, you can always focus on the fact that at least you are able to get a revision. Some of us will have this for the rest of our lives. And coming from someone who fought the whole colostomy thing tooth and nail... it could be worse.

    Good luck.

    MJay
  • livin
    livin Member Posts: 318 Member
    Hi 4law. I understand how you feel. I was suppose to get my colostomy reversed in September of last year. Unfortunately I ended up having Liver Cancer in September so I could not get the reversal. I still have my colostomy now, presently doing chemo for the liver cancer so the reversal is on whole. My doctor said I could talk to the surgeon but he wants me to have at least 3 months chemo before I even think about reversal. I have come to the conclusion that I rather wait until I finish the 6 months of chemo I have to get for the liver cancer before they cut on me again. I don't want any set backs like infection to interfere with chemo. Livin