looking for a success story someone who's recovering or recovered from anal cancer and colostomy

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  • pjjenkins
    pjjenkins Member Posts: 173
    baotze52 said:

    My PET-CTscan today the result is negative. I feel so relieved.
    I was wonder have you asked your Mom's surgeon about the reason why can she have a clear margin from the surgery? Especially there is not even a single lymph node was involved. For my case, According my surgeon, the reason I was left a " close margin " it was because one site reached my tail bone so he couldn't cut any further, Pathology report says 1mm from my positive tissue. That's why it's called " close margin " . My Oncologist didn't think I need chemotherapy. So far I had 4 PET-CT Scan already, They all turned out to be normal. So far so good. Although I still have this anxiety like most cancer survivors about uncertainty of what potential this disease could bring me to, Still, I have to be grateful and try to enjoy my life when I can. I will certainly keep your Mom in my prayer, If you have any more question please don't hesitate to ask me, I am so glad if I could be any help to you and her.

    May you always have this result....PJ
  • Stimpy
    Stimpy Member Posts: 5
    baotze52 said:

    Anal cancer and Colostomy
    I am new on this board, But I think I would like to share my story with you. I am 53 yrs old female. Had cervical cancer about 16 yrs ago, After my hysterectomy, Pathologist found a tiny tumor in one of lymph node which put me through 5 wks of radiation treatment. 16yrs later, Oct. 2008 I was diagnosed again with Anal cancer. This time I can't have radiation tx as an option, so I was given another surgery - Abdominal Perineal Resection to form a Colostomy. Unfortunately, due to previous invisible radiation damage to my bowel, After surgery I had real tough time due to blockage and sluggish movement of my bowel, I had 2 nd surgery 3 weeks after the first to unblock my intestine. During that time ,I could barely eat or drink, It went on for two months. Right before my surgeon was planning for the 3rd surgery, All of the sudden my bowel started to move, During that time I have lost a lots of weight and most time was extremely dehydrated, I Was given PICC line to keep me alive. Before surgery, I was extremely concerned about colostomy, poop bag and all that......After have gone through nearly starve to death experience, You know what? I am so happy today, At least, I can eat and I am alive. Colostomy became my least issue, Once you get used to it, the bag is so easy to take care of. During this hot summer I am always in my short and nobody even notice the bag. During my sickness, I truly found out that life is too precious to waste, Don't let Colostomy scare you, Prepare your surgery well, Be aware! Your radiated bowel may take longer to recover than you anticipated.I wish your husband all the best, Please let me know if you have any more question that I can help you with.
    Baotze52

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    Kezaus
    Posts: 34
    Joined: Jul 2010

    God Bless you. I am very
    God Bless you. I am very concerned that I will need a colostomy soon. I just can't control my bowels much anymore. I was diagnosed in 2000 with Anal cancer. My side effects showed up 8 years after my diagnosis. I was treated with chemo & radiation. But I am alive, I just dread thinking about a colostomy.
  • Amy48
    Amy48 Member Posts: 1
    baotze52 said:

    Thanks for your support
    I have been reading all your stories and opinions about this cancer. I am a very private person and since my case is so different then most of you. Not only I had two cancers I also didn't have chemo/rad instead I had colostomy as my treatment. I was hesitated to write in the beginning But you ladies have been such meaningful inspiration for me. I admire your courage and kindness, By the third day I was on this board, I just decided I have to share my story even if I can only help one person , It's worthy. It really takes a sick person to understand what another sick person is going through mentally and physically. Thanks for all your support. I am here to stay.

    Colostomy surgery
    I am new here & was just looking for info. My friend was diagnosed with colon cancer in April. The cancer was so close to the rectum to avoid a total coloscopy & permanent bag he on June 1 started 5 weeks of radiation & chemo. He had the surgery on august 16 & was told it was successful. A stage 3. They removed 4 lymph nodes, he has a temp bag, after 1 mo. Recovery he is to start chemo for 5 months then they will reverse the coloscopy. The problem is he has been in horrific pain. He was discharged from hospital on august 21 but has been back twice. He got an infection & they had to remove the staples so mow he lies in bed with an opening from his belly button to his crotch, 2 inches deep & 1 inch wide. He has visiting nurse twice a day. He has to wear diaper for leakage & the dr. Is not sure spincter is working. I do not understand why they can't give him meds for the horrific pain. Anyone suffer this?
  • mp327
    mp327 Member Posts: 4,440 Member
    Amy48 said:

    Colostomy surgery
    I am new here & was just looking for info. My friend was diagnosed with colon cancer in April. The cancer was so close to the rectum to avoid a total coloscopy & permanent bag he on June 1 started 5 weeks of radiation & chemo. He had the surgery on august 16 & was told it was successful. A stage 3. They removed 4 lymph nodes, he has a temp bag, after 1 mo. Recovery he is to start chemo for 5 months then they will reverse the coloscopy. The problem is he has been in horrific pain. He was discharged from hospital on august 21 but has been back twice. He got an infection & they had to remove the staples so mow he lies in bed with an opening from his belly button to his crotch, 2 inches deep & 1 inch wide. He has visiting nurse twice a day. He has to wear diaper for leakage & the dr. Is not sure spincter is working. I do not understand why they can't give him meds for the horrific pain. Anyone suffer this?

    Hi Amy!
    I'm sorry to hear about your friend. I don't have any information that would help you, except I would suggest that you also post on the colorectal board. There might be someone there who has had a similar experience. I wish your friend the very best.
  • sandra malone
    sandra malone Member Posts: 31
    BWK said:

    Richard's PET Scan
    Martha,

    Yes, it's a long story about how the girl at the doctor's office told him about his results. I called and got the report faxed to me, and Richard then called the doctor. He actually told him it had recurred (the doctor didn't make it sound like it could be anything but). Let's hope he's wrong. I will post the results as soon as I know. Thanks for keeping up with us!

    Barbara

    pet scan
    i am 8 months into remmission from rectal/anal/ canal cancer.iwas stage 1.praise God.BUT YUO REcIVED THIS KIND OF TEST RESULT OVER THE PHoNE!
  • Rashidhps
    Rashidhps Member Posts: 1
    APR with end colostomy

    Hi,

    i was diagnosed with ano-rectum cancer, 

    i had gone through radiation+chemotherapy and then it was planned for APR surgery with an end colostom.

    it been 6 month now, its working apsolutely fine by the grace of GOD,

  • mp327
    mp327 Member Posts: 4,440 Member
    Rashidhps

    I welcome you here and I'm glad to know that you are doing well post-chemo/radiation and APR surgery.  May you continue to be well!

  • eihtak
    eihtak Member Posts: 1,473 Member
    anal cancer, ostomy, recurrance, but YES...good today!

    Hi,

    It seems all of our stories have similarities, yet differences unique to ourselves.

    I was initially dx in 2011 with anal cancer stage 3b (pelvic lymph node involvement). I received the protocal chemo / rad. treatment and before starting had ostomy surgery (loop) which was intended to be reversed once healed. The radiation damage was severe and after consulting a specialist the decision was made to keep the ostomy permanent as the chance for success was VERY poor. In 2011 at a follow-up PET scan, I was NED on the anal cancer but dx with a rare breast cancer and had a double mastectomy. Then, in 2015 another follow-up led to the dx of recurrance of the anal cancer with mets to my lung and I had surgery to remove the lobe in which it was contained followed by aggressive chemo once again.

    Through ALL of this, having the ostomy has been little if really any problem. I'll admit, the initial adjustment period may have had some trying moments, but once into a regular routine, it all seems quite natural to me. Everyone is different and will need to find their "groove" so to speak, but my life is full and definately not limited due to having an ostomy. I am active, chase grandkids around ball fields, hockey rinks, and water parks, in fact hitting up some pretty awesome waterslides myself!

    APR surgery is a bit different than what I had (I still have my anus and rectum but it is "out of commision")...my colon was pulled through an incision in my abdomen to create the stoma, so the healing recovery time was much quicker. Since I did have my ostomy "prior" to the radiation part of the treatment, I dealt with related issues that way. The radiation caused my internal organs to swell and literally pushed about 5inches of colon out the stoma resulting in a very large prolapse that could not be treated during chemo due to risk of sepsis! Fortunately, the prolapse corrected itself a couple weeks after radiation and I have had no problems since.

    I so agree with others who mention the great support on this forum. Our doctors (hopefully) know their thing, but unless they have personally experienced some of what we go through on a day to day basis, it is just not possible to relate to what we have to deal with. I was not part of this during my first year (now approaching 7 years ago) and it sure would have been a Godsend, had I not felt so lost and alone at that time.

    I do wish everyone more good days than not so good as they move forward in health!

    katheryn