likelihood of returning

Hi. My wife (43 this year) was diagnosed with anal cancer in 2003. She had intense radio and chemotherapy to the area. It was diagnosed as a form of squamous cell, slow growing in the lab. She spent years trying to recover from the treatment, having to have infections drained etc and in all that time she kept saying it felt like it was still there. Oncologists disagreed and scans revealed nothing. In 2009, a biopsy of a small lump revealed it was on the move again and more aggressive treatment was suggested. She had her rectum removed, a portion of bowel, a colostomy and a large section of tissue was removed from the front abdomen and grafted to the rectum area to fill in the gap.
Lymph nodes were removed in the area and sliced for analysis. They contained no cancer cells. For the first time in
seven years she has put on weight and feels better. The lump was about the size of a pea, which is surprising for the amount of pain she had. A CT scan performed last week showed no cancer YET. However, from what I believe, the scans cannot detect a single or a small cluster of cancer cells? Our fear is that just a few cells could have wandered off to another area of the body. With so much tissue being removed around the pea sized lump, am I correct in assuming this is unlikely to become cancerous again? She has been through so much and just really wants to know if this is likely to be it now?

Thank you

[29sillygirl]

Hi there,
I am a 3 yr survivor of anal cancer.  Sounds as though your wife and I went through similar treatment when first diagnosed.  My radiation and chemo therapy lasted six weeks, and was only interrupted once when blood vessels in leg started to leak.  At the end of treatment, the chemo caused renal failure, and I had cdif, so a week in MD Anderson followed.

I think my cancer might have been more aggressively treated as it was stage IIIb and had spread to wall of vagina before caught.  Doctors told me it was a fast growing squamous cell carcinoma.  But what was unfortunate for me is that a colonoscopy done about 9 months before I self referred to surgeon, did not uncover it.  

Like your wife I went through about two years of a painful healing process. I am so very glad she had you by her side through her treatment.  I am very sorry it returned.  It would seem after the treatment she has had it would not return.  I am not an expert by any means.  Just a fellow survivor.  

When I tried to get out of the latest test my doctor wants: a barium enema (colon too brittle for colonoscopy now), he said it was the only test that would give him a picture of what is going on in rest of colon.  We are at a higher risk of colon cancer after anal cancer.  In my case, he didn't want to do a biopsy of anal area. Not sure why.  Maybe because I look ok.  LOL.  I think I am the only person on the planet who gained weight following cancer treatment.  

To me: a biopsy is the only definitive test of tissues.  You are right about scans: my doctor said as much.  Very helpful, but other tests more definitive.  To answer your last question: with the huge amount of surgery done on your wife, second time around, there should be very little tissue that could become cancerous.

It is grand to hear she is putting on weight.  Such a good sign!  She is a very strong woman.  Her will to live and your constant loving support,  play a big part in her full
recovery.                

[29sillygirl]

Hi there,
I am a 3 yr survivor of anal cancer.  Sounds as though your wife and I went through similar treatment when first diagnosed.  My radiation and chemo therapy lasted six weeks, and was only interrupted once when blood vessels in leg started to leak.  At the end of treatment, the chemo caused renal failure, and I had cdif, so a week in MD Anderson followed.

I think my cancer might have been more aggressively treated as it was stage IIIb and had spread to wall of vagina before caught.  Doctors told me it was a fast growing squamous cell carcinoma.  But what was unfortunate for me is that a colonoscopy done about 9 months before I self referred to surgeon, did not uncover it.  

Like your wife I went through about two years of a painful healing process. I am so very glad she had you by her side through her treatment.  I am very sorry it returned.  It would seem after the treatment she has had it would not return.  I am not an expert by any means.  Just a fellow survivor.  

When I tried to get out of the latest test my doctor wants: a barium enema (colon too brittle for colonoscopy now), he said it was the only test that would give him a picture of what is going on in rest of colon.  We are at a higher risk of colon cancer after anal cancer.  In my case, he didn't want to do a biopsy of anal area. Not sure why.  Maybe because I look ok.  LOL.  I think I am the only person on the planet who gained weight following cancer treatment.  

To me: a biopsy is the only definitive test of tissues.  You are right about scans: my doctor said as much.  Very helpful, but other tests more definitive.  To answer your last question: with the huge amount of surgery done on your wife, second time around, there should be very little tissue that could become cancerous.

It is grand to hear she is putting on weight.  Such a good sign!  She is a very strong woman.  Her will to live and your constant loving support,  play a big part in her full
recovery.                

[ed34]

Thank you. My Wife kept going to the Doctor believing she had piles but they were diagnosed as skin tags. After about a year, she went for a routine operation to resection her rectum, to remove a pile and the skin tags. It was then that they noticed a very small lump next to her anus, which was sampled for biopsy. They believe they caught it early. Her radiotherapy was very aggressive, they basically let off a nuclear bomb in her pelvis. This was why they couldn't simply stitch it from the colostomy, they had to take lots of tissue from her abdomen to patch it, the original tissue was too scarred. The radiotherapy left her with no skin whatsoever around her bottom and vagina, it was raw flesh and was continually coated with gauze coated in special creams.
After her colostomy surgery she was recovering fine but I noticed she was speaking rubbish and kept dozing off. I told the sister that something was wrong, but she said it was the meds. I sneaked out and found her consultant and said I wasn't happy and without question he came to examine her. Immediately he ordered her to ITU and they found her lungs weren't absorbing enough oxygen. She was sedated and put onto life support and I was told she wouldn't make it through the night. A lung specialist explained that there was a trial drug which has saved some patients, but not all. I listened to the details and signed the consent form. She had the medication for about an hour but then her heart went into Atrial fibrillation and so they stopped the infusion. Her heart recovered and her breathing improved. After 3 days she was off life support but due to the A-F she had suffered a large stroke on the left side of her brain. Her right side was paralysed, she couldn't feel needles being pushed into her skin. I felt aweful for signing that agreement and still blame myself. Thankfully, her speech returned to normal, and she gained some feeling in her limbs. I spent weeks, giving her small tasks to do with her hands/fingers. I kept getting her to use her arm and leg in many different ways. I believed that the brain just needed to be retrained to know which connection is which. After about 2 months she was knitting which is an idea I got her into for the dexterity. She can now walk normal and do everything she could do before, but it was such hard work for both of us. I think she is still very scared about the cancer and waiting for the recent results from the CT scan was a nightmare for her. Waiting for those 2 weeks to hear is terrible.
I know cancer is really a terrible thing, but believe me it's so good to speak to people who understand what you are going through. I am really pleased to hear you are doing so well. The weight thing is definitely a great sign to me. I hope it stays away and I will definitely pray for you.

Take Care.

[29sillygirl]

What an ordeal.  Isn't it ironic that with all the modern medical technology, that we still seem to have to be our own advocates? Fight for care when docs say all is fine?  I don't dwell on these things anymore.  Day at a time.  Relish the small pleasures.

So awful for you to be placed in position of signing for trial drug.  Then again. No real choice was there? Do let the blame go.  She would have died if you hadn't taken action.

You are  the second person I've spoken to who has had a significant other with with anal cancer.  I only joined forum to find others I could talk to.  Dropped out once as there were no others.  And some of the posts were beyond me!    My prayers will be with both of you.