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

kezaus
Posts: 6
Joined: Aug 2010

I'am looking for someone who is recovering or recovered from anal cancer and after going through treatment of radiation and chemo then a reacurrence of the cancer so then a colostomy.My mum has been going through this for 12 months now 5 weeks ago she had the colostomy done we are waiting to go back to the specialist next week to see what kind of treatment she still has to have cause the pathology results from when they done the surgery showed no lymphnodes were infected but it wasn't within the margins.I guess i'm looking for someone out there who has been through this how did it go for you are you well?has the cancer stayed away? how's life living with a bag?are u able to get on with your life?I surpose i'm looking for hope 12 months ago when my mum was first diagnosised with this type of cancer we were told it's a non agressive cancer it normally stays local it's a type of skin cancer,it grows very slowly.They said a 95% cure and its rare to grow back,they said this type of cancer responds well to radiation thats why its used as a main form of killing the cancer.Now i feel i really don't know anymore i tryed being hopefull but now i feel i was nieve cause all the radiation seem to do is cause more damage and long term pain and the tumor came back within 6 months of finishing treatment and now that she's had the surgery and the anal canal and anus taken out and it's still ont in the margins .I guess i always felt she was going to be ok but now i'm not so sure and i'm scared i'm looking for hope to see someone else has gone through this and survived. I'am thankful for anyone who can help.

mp327's picture
mp327
Posts: 4105
Joined: Jan 2010

I know of a couple of people who were treated for anal cancer and ended up with permanent colostomies. One of them is a member on this board, but inactive right now. I know from communicating with these two individuals that there are challenges in living with a colostomy, but for the most part a normal life resumes. I'm sorry that your mom has had to have this surgery, but I hope that she has a good recovery and can easily adapt to her new normal. I hope that the remainder of any cancer cells can be effectively eradicated and I hope you'll let us know what the next step in her treatment is. I wish her all the best.

kezaus
Posts: 6
Joined: Aug 2010

thank you so much for replying it's hard to find people to talk to who are going through the samething as my mom it also helps so much to be able to read everyone eles story i will keep in touch as of the next step thank you

BWK
Posts: 23
Joined: Jul 2010

Kezaus,

You responded to one of my earlier posts and I am appreciative of the information you've put on the discussion board.

My husband has also had his cancer recur. It showed up on a recent PET scan that he had last week. Originally the person who worked in his office made it sound like there wasn't a problem. But, long story short, there is. He will have a colonoscopy with biopsy tomorrow and we'll learn then how they want to proceed. Everything I've read makes it sound like he'll have to have a colostomy.

One good bit of news I can pass on to you is this. My husband works with a man who had Stage IV colon cancer and has a colostomy. That was 11 years ago, so this gives me hope. He lives a very normal life. I don't know if I'm comparing apples to apples with the two different types of cancer, but at least it's something, right?

Anyway, I will keep you posted on anything I learn that might be of help to you.

Barbara
p.s. Don't feel bad about thinking you were naive - anal cancer is rare and I don't think they know a lot about it compared to other cancers..................

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mp327
Posts: 4105
Joined: Jan 2010

I was so hopeful that your husband's PET scan was clean, but now it sounds like it wasn't--am I interpreting this correctly? I want to wish him the very best with the scope and biopsy tomorrow and I'll keep hoping and praying that instead of tumor recurrence, whatever showed up on the PET scan is simply radiation damage. Please let us know.

z's picture
z
Posts: 1401
Joined: May 2009

Hi Barbara,

On my 1 year follow up pet-ct, I showed anal activity. The suv uptake was 4.3, my oncologist said that because I had a biopsy 1 month prior that it was inflammation. I pray that your husbands pet scan is just showing scar tissue and inflammation. Lori

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mp327
Posts: 4105
Joined: Jan 2010

Barbara, Lori's post reminds me of my own recent situation. I had a PET scan back in May that showed no activity in my anal area. However, I had an SUV of over 7 in my upper vagina, which is higher than what my anal tumor showed on my staging scan before treatment 2 years ago. Of course, I was very concerned about this, but my doctors felt it was inflammation. My med onc ordered another PET scan for me for two months later, which I just had last week, and the activity previously seen in the vaginal area was completely gone. My conclusion in all this is that PET scans are so sensitive that they can pick up inflammation, which may be hard to distinguish from cancer. Inflammation can happen so easily in the anal canal, when you think about all that takes place there. Radiated skin does not heal well, plus the blood vessels in that area are much closer to the surface now and can easily get irritated and bleed. This inflammation can show up on a PET scan. My hope is that Richard's biopsy will show no cancer cells, only irritation/inflammation.

BWK
Posts: 23
Joined: Jul 2010

Lori,

Thanks for this info! I will definitely post the results when we find out.

Barbara

BWK
Posts: 23
Joined: Jul 2010

Martha,

Thanks for checking in. We are gravely disappointed as you can imagine. I'll let you know the biopsy results.

Barbara

BWK
Posts: 23
Joined: Jul 2010

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

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mp327
Posts: 4105
Joined: Jan 2010

My thoughts and prayers will be with Richard and you.

sandra malone
Posts: 31
Joined: Apr 2010

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!

kezaus
Posts: 6
Joined: Aug 2010

i'am so sorry to hear about your husband's reacurrence i hope that it just inflammation and thicking of the skin that is showing and it drives you crazy the waiting 7-10 days for biopsy results just think positive sometimes it's the only way to get through it is your husband suffering from alot of pain from the radio damage?yeah i have heard some people that have colostomy's and are still ok over 10yrs later but i'm not sure exactly what cancer they have had.thanks for keeping me updated on your husband and i will keep you informed of my mom's progress maybe we can help each other out by sharing the knowledge of this horrible cancer i hope all goes well for him and there is no cancer back but just radio damage thanks

kezaus
Posts: 6
Joined: Aug 2010

i forgot to say what i learnt when the cancer came back for my mom the doc said when the tumor comes back in the same spot where the skin is damaged it would be hard for the area to heal because the skin cells are so damaged and my mom already had radio a couple of months ago so they said thats why the colostomy is done and then with the anal canal and anus taken out there is less chance of the cancer coming back i know my mom wasn't too happy about this operation but in the end it's given her more of a chance to beat this cancer and the onething she does not miss is the pain that she used to have from the radio

baotze52
Posts: 8
Joined: Aug 2010

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

kezaus
Posts: 6
Joined: Aug 2010

hi thanks for replying i'am so sorry to hear everything you have been through the colostomy operation is enough but all the complications you had i'm sure you have a great outlook of life now and your right life is too short and being able to still be alive is more important and the colostomy surgery does give a less chance of the cancer coming back so has it been 2yrs now since your operation? has the cancer stayed away?and i'm curious after you had surgery for the colostomy did you have clear margins on the pathology of the tumor and anal canal did you have to have any other treatment like more radiation or more surgery ?

baotze52
Posts: 8
Joined: Aug 2010

Hi, Kezaus:

It has been 20months since my first surgery. In fact, I am going to have my 4th PET/CT scan tomorrow morning. I am doing well so far,
Gosh! I am so anxious right now. Hopefully I have get another negative result from the scan. I did have clear margin from the pathology report, Clear but narrow margin. That is another reason I am watch my body closely. I have been followed up by my Med. Oncology every 3-4 months. Drs at the hospital discussed my case in their tumor board meeting. They came up with a conclusion that I don't need chemo because there is not a lymph node was involved and I am not qualify for another round of radiation due to previous Rad.tx for cervical cancer. I will let you know my PET result as soon as I have it.

Stimpy
Posts: 5
Joined: Aug 2010

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.

baotze52
Posts: 8
Joined: Aug 2010

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.

mp327's picture
mp327
Posts: 4105
Joined: Jan 2010

Hi baotze52--

I just wanted to congratulate you on getting a clean PET scan! That's great news and no doubt, a huge relief for you. May all future scans be clean for you as well!

z's picture
z
Posts: 1401
Joined: May 2009

Hi,

Great News with your pet scan results! I am always anxious with my scans, and I know it is such a feeling of relief. I know my whole mental well being changes every time. Lori

baotze52
Posts: 8
Joined: Aug 2010

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.

baotze52
Posts: 8
Joined: Aug 2010

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.

Amy48
Posts: 1
Joined: Sep 2010

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's picture
mp327
Posts: 4105
Joined: Jan 2010

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.

pjjenkins's picture
pjjenkins
Posts: 173
Joined: Mar 2009

May you always have this result....PJ

Rashidhps's picture
Rashidhps
Posts: 1
Joined: Aug 2017

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's picture
mp327
Posts: 4105
Joined: Jan 2010

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
Posts: 1250
Joined: Oct 2011

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

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