CSN Login
Members Online: 4

Colostomy After Anal Cancer

BWK
Posts: 23
Joined: Jul 2010

My husband was diagnosed with anal cancer a year ago (squamous cell). It may have recurred (we will know within a week after several tests). Has anyone had this experience and if so, can you tell me if you had to have a colostomy? Any info you can give me about colostomy would be appreciated.

mp327's picture
mp327
Posts: 2820
Joined: Jan 2010

BWK--

I'm sorry that your husband is going through this and I hope that it turns out not to be a recurrence. I believe the standard protocol for recurring anal cancer is APR with permanent colostomy. I do not have a colostomy, so I really can't give you any info about what it's like to live with one. Perhaps your husband will get good news and won't have to worry about this--that is my hope for him.

BWK
Posts: 23
Joined: Jul 2010

Thanks so much for taking the time to reply. I think you're right about the standard protocol. I will try to keep up adding info to this website once we get some results. I know how much it helps me, and I'll keep all of you informed so you too can gather knowledge.

z's picture
z
Posts: 1250
Joined: May 2009

Hi BWK,

I have not had a recurrance. I have also read where you would have to have a colostomy. But now a days with the MOHS surgery, where they take the tissue until they find clear margins, while in the operating room, I wonder if they have ever tried that yet on a anal cancer patient with a recurrance. I sure hope one day that will be the alternative for recurrances. Hopefully, the tests will be negative for cancer. I will have you and your husband in my prayers. Lori

lizdeli's picture
lizdeli
Posts: 520
Joined: Jul 2009

Hi Cancerite,
Just curious, since you had surgery first was your tumor small and the treatments just pre-cautionary? I didn't have surgery first, just the chemo and brutal radiation. I'm having some symptoms now that sound like proctitis. I'm over 10 months out of treatment and just beginning some of the sypmptoms. Of course I'm scared even though many have reported the same post treatment symptoms. My next CT scan is two weeks from today, so I'm on edge as I usually am around CT time. Hopefully it will turn out to be normal post treatment stuff like proctitis. We'll see.
Liz

mp327's picture
mp327
Posts: 2820
Joined: Jan 2010

Liz--

I am almost 2 years post-treatment and continue to have bouts of bleeding and occasional severe irritation of the anal area. It always freaks me out, but is always explained to me by my doctors as proctitis. I'm sure your symptoms are due to this as well. As my rad onc explained to me, the lining of the intestines are much thinner now and the blood vessels are closer to the surface, thus leading to episodes of bleeding with hard BM's or foods that irritate. I'm sure you CT will have good results and you can breathe easier.

BWK
Posts: 23
Joined: Jul 2010

Liz, my husband, like you, had the chemo and radiation first. We won't know until they do a biopsy of this mass whether or not it's a recurrence. If it is, I think we're looking at resection surgery APR with permanent colostomy. I will let all of you know the prognosis as I learn it. Best of luck to you - fingers crossed.

BWK
Posts: 23
Joined: Jul 2010

Thanks so much for this info. I think you're right about the possibility of more radiation (depending on exactly how much my husband was given with the first go-round). I'll keep all of you posted after we get some results. They definitely say it's a mass, though, so I don't think it's proctitis. More later......Thanks to everyone for responding. Barbara (for my husband Richard)

BWK
Posts: 23
Joined: Jul 2010

Lori, I think once the cancer comes back that the standard protocol is APR with permanent colostomy. I'll keep all of you informed. Thanks to everyone who responded to my question. Barbara (for my husband Richard)

kezaus
Posts: 6
Joined: Aug 2010

hi iam not going through this personally but my mum has been trying to fight this horrible cancer for 12 months now she was told 95% cure and we are still waiting for that she had the 6 weeks of radio chemo she left with alot of scar tissue damage and thicking of the skin then about 3 months later the pain kept getting worse and all the doctors she spoke to said it was radio damsge pain she had a biopsy to see if all the cancer cells were gone and they said there was no cancer cells the redio seems to kill the tumor but with in 3 months the pain got worse and she knew something wasnt right and it wasnt the tumor had grown back in the exact same place and because of the skin damsges there it would not heal and u have more of a chance of it coming back so she was booked in for 4 weeks to have a colostomy this was on the 28 of june 2010 its now been a month since her surgery and she is ok the surgery is a big operation the first week was the worst it took alot out of my mum we look back now and wonder if she should of even done radio treatment her strengh is picking up everyday and her bag is working great i think it just take sometime to get used to the bag but they say most people can go on living a normal life having colostomy and you would be surprised how many people have them and you wouldnt even know it.theres only onething we are abit concerned about they said the pathology came back good after the operation but the cancer is still within the margins we dont understand this because the anal canal and anus was removed we see the specialist ina weekstime and hopefully we know more then they have said maybe more radio or surgery to remove part of the tailbone sometimes just when i think she might be finally over this something else happens i just want her to beable to get back to having her life back cancer free and pain free .I dont know if this helps you but this is my story and yes the colostomy is a big life changing operation but if means you have less chance of the cancer coming back then maybe its worth it i wish you and your husband all the best i hope it all goes well him and you i know how hard it is watching someone you love so much go through this terrible disease and to live with chronic pain is just heart braking all we can do is be there for them

BWK
Posts: 23
Joined: Jul 2010

Kezaus,

Thank you so much for this information. All knowledge is power! It has been really helpful to read what you've written here. I will repost after I have more news about my husband.

Again, many thanks.

Barbara

baotze52
Posts: 8
Joined: Aug 2010

I am new on this board, But I think I can help by share some of my experience 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

BWK
Posts: 23
Joined: Jul 2010

Thanks so much for this information! It's so helpful to hear from someone who has been through this surgery. I really appreciate your encouragement and the fact that you took the time to respond to me.

Salud!

Barbara

sissy310
Posts: 300
Joined: May 2010

Hello...was perusing the site on colostomies and came across your post which gave me information I needed. I have stage IIIa anal cancer, finished treatment three months ago. Post scan showed a small mass that was left, possibly scar tissue but when colo-rectal dr did dre and scope -- said it was a mass, possibly residual from original tumor. He's waiting four weeks and checking to see if radiation shrinks it some more. If not, then a biopsy and if that comes back positive, he's talking about an APR. I'm terrified of that outcome but if it saves my life it's something I will have to do I suppose. I was looking for some 'positives' if there are any with this and I was glad you wrote what you wrote. I know a few others on this site and other sites have colostomies and are doing fine and living their lives, it's just hard when you have to possibly face this yourself. Thank you for your open and honest information. Marilyne

baotze52
Posts: 8
Joined: Aug 2010

Yes, There are very few people like us have to go through surgery such as APR but one thing for sure, It is life saver. I still remember that sometime 2 years ago, I was in the same lonely place as you now. Scarred to death, Tried 2nd,3rd opinions, from west coast to East coast. Just couldn't face myself going to have such major surgery. didn't know where to turn to for real mental support. But the reality is, like I mentioned before, Radiated bowel could take a bit longer to move after surgery. other than that, Just like other surgery, You are not going to feel a thing during surgery and afterword, you will be provided with pump to control the pain. Let me tell you, I did not feel particular pain any more than post c-section or hysterectomy. If you do need APR, I truly think you are going to be fine. I am doing so well now. Today,In my view, Colostomy just another way to go to bathroom. I was told by my surgeon no need to irrigate my bowel. So, Really, not much extra work than most people do. One thing though, I do need to remind you, Before my APR,I have hired a handyman to put in a sink right next to my toilet bowl (I bought at Home Depot ) Because you will need something within your reach to wash all the stuff while you try to clean your pouch. If you have anymore questions please don't hesitate to ask me, I am very glad that I can be any help during you difficult time. Baotze52.

sissy310
Posts: 300
Joined: May 2010

Wow Baotze52...thank you so much for all this information. You have no idea how it put my mind at ease. I too was trying to figure out if I should get 2nd or 3rd opinions and what to do (I might be counting my chickens before they hatch in that I'm not 100% positive it is residual tumor but the body language and tone of my colo-rectal surgeon just made me feel like he was not confident and was 'preparing' me for what most likely will happen. I searched all over the internet for some other stories but found little. I appreciate your offer to talk about this and will surely take you up on that. I have another appt on Dec 9 with the colo-rectal surgeon and he will again do a dre and scope to see if Harvey (I named my tumor) has shrunk more. If not, then a deep biopsy will be done and from there depending on the biopsy results, I am assuming if cancer still there, he will schedule an APR. I was more upbeat the few days before seeing my oncologists where they said the tumor went from 20.something to 3.3 and that was a good sign but the colo-rectal guy, while he said the treatment shrunk Harvey a lot still left something behind - my heart sank. It was just another step I had to digest and am still trying to cope with it. I have my moments. Some moments I have a pity party and other moments I am coping and moving forward trying to keep busy until I hear what the next step is. So, trust me, your post brought a little light into my life right now. I appreciate it. Glad to hear that you are doing well with this - I too had a hysterectomy and c-section so I know what you mean by the particular pain. I know this is an odd question to ask and if too personal please forgive me but was your hysterectomy vaginal or abdominal? Reason I ask if I have a theory as to why I had HPV anal cancer but was never diagnosed with HPV in any of my paps. They did a vaginal hysterctomy on me and an A/P repair (repair of prolapsed uterus by removal and lifting my bladder and rectum which also prolapsed with the uterus). I often wonder now if somehow when they did that repair, some HPV cells migrated to the rectum/anal area and here I sit today. Then I start to think maybe if I had not had the hysterectomy maybe it would have been cervical, uterine or ovarian cancer. Like Gilda Radner used to say "It's always something!" Thanks for all the info. I'm sure I will be talking to you again. Be well, Marilyne

baotze52
Posts: 8
Joined: Aug 2010

I have to apologize for not getting back to you earlier. I was really busy taken care of my parents this week. Now I am back, First, to answer your question, My hysterectomy was abdominal. I think your theory does make sense to me but I am afraid it will take many many years to come before researcher to proof that you might be right. I too was not diagnosed with any HPV either through pap smear. Anyway, For me, I believe the single biggest factor cause this disease besides HPV is " stress ". Both times when I was diagnosed with cervical cancer and anal cancer, I was under tremendous stress. the second time especially, I got laid off from a job I loved for so many years. It was very tough transition for me to go through so many changes at this age. I am sure it contributed to me getting anal cancer . Stress can really weaken our immune system as we all know. Before we can really find out the real cause, Might as well cut down our stress first. I wish the best will come soon for you at the end this uncertain situation. My thoughts and prayers are with you.Baotze52

sissy310
Posts: 300
Joined: May 2010

No worries about not responding...I know what it like to have filial responsibility for parents. I agree with you that many cancers are stress related, then our immune systems kick out basically. I think with anal cancer too it might be too much pressure from hemi's or fissures that continually bleed and not heal. Who knows. I do hope at some point someone finds out the causes and tries or succeeds in alleviating all of this. My thoughts and prayers are with you as well. Be well. Marilyne

VickiCO's picture
VickiCO
Posts: 934
Joined: Oct 2008

I was dx'd in Oct 2008 with stage 3 rectal cancer -tumor 2 cm inside the anus. This was primary, not a recurrence, even though I have previously has cervical and uterine cancers. I went through 30 radiation treatments, multiple chemo rounds, and two surgeries. I lost all the rectum and 18 inches of colon. My surgeon was able to initially reconnect the colon to the sphincter muscle, but then stenosis set in (hardening of the colon muscle due to all the radiation damage.) After 9 months of living in the bathroom - literally 30-40 trips a day - and not being able to even grocery shop without an accident, wearing depends, etc, etc, I finally opted for a permanent colostomy. It changed my life. I have a life now. Truly, you get used to it pretty quickly. Yes, it's different and I wish I didn't have to have it, but compared to my life before, and the fact that I am even alive, it's a small thing to deal with. There are good suppliers who will help you (I use Edgepark with the Coloplast products because that is what my insurance dictates. They are great!), and my ostomy nurses are the best.

Don't let fear follow you. I am proof that having a colostomy is not the worst thing out there.

Many Hugs, Vicki

mp327's picture
mp327
Posts: 2820
Joined: Jan 2010

Thank you for posting this. I think I speak for those of us who have faced anal cancer and know the potential always exists for necessary colostomy down the road, this helps to calm our fears. I'm glad you are doing well and enjoying life again.

z's picture
z
Posts: 1250
Joined: May 2009

Hi Vicki, I know rectal cancer is treated differently than anal. The treatment you have had makes me feel like they covered every avenue so that the cancer will not come back. I know if I couldn't leave the house I would have to have a colostomy. I am happy you have a life now, and can live a new normal life. Lori

TMac52's picture
TMac52
Posts: 358
Joined: Aug 2010

Hi My Name is Tom,
I am a 52 year old man. I have always kept myself in pretty good shape In July of 09 I was dx'ed with stage 3 rectal cancer. It was missed on a routine colonascopy 9 months earlier so I was shocked to say the least when I was told there was a 3cm mass. I emeadiatley had a port installed and started 5fu chemo pump and 28 radiation treatments to shrink the tumor away from my sphincter. The side effects I had from the radiation was the worst thing I have ever had to edure. I couldnt finish the treatments I made it through 22 and they stopped them. I still think there was a mistake made with the dose but couldnt prove it if i wanted to. anyway I was suppossed to have surgery after 8 weeks but I was still too sick from the radiation they had to wait another 5 weeks. Finally. I underwent an APR and now have my very own permanent colostemy. I thought I was going to have a temp that would be reversed but when I came out of surgery I was told that the tumor was still attached to the sphincter and i would have had a problem with incon plus would have had to have two more surgeries down the road. So it was decided by my surgeon at the time to proceed with the perm colostemy. I am very happy and grateful to be alive the colostemy works just fine and I accepted it right away. I think the acceptance is a huge key to feeling better. I am now 3 months out of surgery it has been rough I am not going to lie. But I am finally feeling better. I return to work this week thank GOD. I'm going out of my mind watching Dr.Phil and Oprah on TV. It helped to read some of the stories on this site and some of the people that responded to your post were awesome. I am new to this site but am learning alot from it. The colostemy is not fun but it's now a way of life. 6 weeks after surgery my pathology report came back and found no lymphnode involvment at all and I was re-diagnosed with stage 1 rectal that had all been removed by the surgery. This was obviously good news to everyone. I was given the option to do the follow up chemo and chose to do it. I think human error has touched me enough and don't want to take any chances. I started 5fu and oxy this past monday I am scheduled for 8 treatments every two weeks. I feel good about my prognosis but I know how baffling this disease can be, mostly from reading the honesty of people on this site and the discussion boards. I hope your husband does not have to have the APR but if he does there is alot of us that have been through it that would be glad to help if we can. There are times with cancer that you feel like giving up, I think all patients feel it at one time or another during treatment. But we have to have the knowlege that we can do it. There are people that have done it before us to prove it. We can not give up!!!!!!! I am sending you my prayers and hope in some way that I can help. Tom

VickiCO's picture
VickiCO
Posts: 934
Joined: Oct 2008

I've had my colostomy for a year now...it does get better. Or rather, you do get used to it. Hey, we have the best jokes though....now when someone says "Butt out", we can say "YEP! That's me!"

TMac52's picture
TMac52
Posts: 358
Joined: Aug 2010

Thanks vicki I read your profile and added you to my friend list it's such a pleasure to meet you.

mp327's picture
mp327
Posts: 2820
Joined: Jan 2010

Thanks for sharing your story with us. I think it's good to hear about peoples' experiences with permanent colostomies, given the fact that any one of us could face APR surgery at some point in time. It helps to relieve some of the fear associated with an ostomy. To know that someone has made the adjustment and doing just fine is good to hear. I wish you all the best.

TMac52's picture
TMac52
Posts: 358
Joined: Aug 2010

Thanks MP!!! :) and to all who commented on this post it was really helpful to me and i'm sure to it's author. Merry Christmas!!

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network