Anal Cancer

Blue Moon said:

Cancer of the anal canal

Hi everyone, I am new to this discussion group.

Last November my husband was diagnosed with cancer of the anal canal.  He was so bad that they had to do a colostomy right away so that he could eliminate.  He had lost weight and was down to 99 lbs.  He had to have 2 operations as the first one gave him peritonitis.  He also has a mucus fistula.  He has refused to have the chemo and radiation treatment.  He is in a lot of pain and is unwilling to take anything stronger than tylenol 3.

I need to give you a little more information about my husband in that he is not your 'normal average guy', he is of the belief that the body can heal itself given the right circumstances.  He has eliminated a lot of toxins from his diet including sugar, carbs, processed food etc.  we are also (and always have been) vegetarians (almost vegan).  While I find it very difficult to watch him suffer I am a strong believer in that it is (and has to be) his choice on how he wants to proceed with treatment (if any).

Because he has refused the chemo and radiation I find that the oncologist is not really interested - no follow ups have been scheduled and we are only maintaining contact with him because we requested it (not the oncologist).  I should add that we live in Canada.

What I am hoping to get from this group is information on what we can expect down the road.  I know this is a survivor group but you may have information you can share with me.  Right now my husband cannot sit and has to lie reclined most of the day.  I think the tumour is pressing on his bladder as he has to go to the bathroom frequently.  He cannot go out anywhere and can no longer drive etc.  Can anyone give me any insight as to how this might progress (given he is not taking any treatment).  How fast will this progress and in what manner?

He is 64 and I am his sole caregiver.

 

Many thanks everyone

Hi Blue Moon. I'm in Canada too (Vancouver Island), and am currently about to start my 6th and final week of chemo-radiation treatment. I was in VERY much the same situation as your husband pre-treatment (minus the colostomy). I couldn't sit, I couldn't comfortably walk, I couldn't drive, I had to lie down most of the time. I live alone, so this was all very difficult.

And, like your husband, I was very reluctant to proceed with conventional treatment for this. I too believe in the body's ability to heal itself. I pursued non-toxic alternative treatments for 3 months after my diagnosis (IV Vitamin C & mistletoe & other things), hoping to see some tumor shrinkage as has been recorded in some other cases with this approach. But the tumor got slightly larger in that period of time. Bowel movements had gotten very difficult because of tumor obstruction, and I was facing the prospect of colostomy surgery if I couldn't shrink the tumor. So I decided to do the chemo-radiation.

All I can say is, with 5 weeks now done, it has not been as bad as I was anticipating. The final week and recovery may be rough. I don't know yet. But so far no burned skin that I am aware of, no pain. And the tumor reduced noticeably after the first week. I can now drive, sit, walk normally, garden, etc. My side effects have been diarrhea and nausea, which has made it very difficult to eat during treatment. But I expect those GI problems to improve post-treatment.

Not trying to change your mind because I understand completely where the conviction to self-heal and to use alternative non-toxic approaches comes from. I respect it totally, and try to abide by that in my own life.

It's important to get a PET scan if he has not had one already so you will know exactly what you are dealing with in terms of stage. It might even influence your husband's decisions. In my case, doctors didn't know for sure until my PET scan if I was treatable or already palliative. PET scan showed it to be confined to mass in anal canal (i.e., no spread to nodes or other parts of body). And that PET scan result influenced my decision to go forward with the treatment, after no success from 3 months of IV Vitamin C. I was also desperate to shrink the tumor asap at that point.

Good luck and please keep us posted!

kim

Kim Gaia said:

Hi Blue Moon. I'm in Canada

Hi Blue Moon. I'm in Canada too (Vancouver Island), and am currently about to start my 6th and final week of chemo-radiation treatment. I was in VERY much the same situation as your husband pre-treatment (minus the colostomy). I couldn't sit, I couldn't comfortably walk, I couldn't drive, I had to lie down most of the time. I live alone, so this was all very difficult.

And, like your husband, I was very reluctant to proceed with conventional treatment for this. I too believe in the body's ability to heal itself. I pursued non-toxic alternative treatments for 3 months after my diagnosis (IV Vitamin C & mistletoe & other things), hoping to see some tumor shrinkage as has been recorded in some other cases with this approach. But the tumor got slightly larger in that period of time. Bowel movements had gotten very difficult because of tumor obstruction, and I was facing the prospect of colostomy surgery if I couldn't shrink the tumor. So I decided to do the chemo-radiation.

All I can say is, with 5 weeks now done, it has not been as bad as I was anticipating. The final week and recovery may be rough. I don't know yet. But so far no burned skin that I am aware of, no pain. And the tumor reduced noticeably after the first week. I can now drive, sit, walk normally, garden, etc. My side effects have been diarrhea and nausea, which has made it very difficult to eat during treatment. But I expect those GI problems to improve post-treatment.

Not trying to change your mind because I understand completely where the conviction to self-heal and to use alternative non-toxic approaches comes from. I respect it totally, and try to abide by that in my own life.

It's important to get a PET scan if he has not had one already so you will know exactly what you are dealing with in terms of stage. It might even influence your husband's decisions. In my case, doctors didn't know for sure until my PET scan if I was treatable or already palliative. PET scan showed it to be confined to mass in anal canal (i.e., no spread to nodes or other parts of body). And that PET scan result influenced my decision to go forward with the treatment, after no success from 3 months of IV Vitamin C. I was also desperate to shrink the tumor asap at that point.

Good luck and please keep us posted!

kim

Thank you so much for your long and informative reply.  All this information is very useful to me and I will try to encourage my husband to get a PET scan (he has had CT and MRI previously).  I am so glad to hear that you are nearing the end of your treatment please let us know how your healing progresses.

I will keep you posted on my husband.  Very many thanks

Blue Moon said:

Hi Kim

Thank you so much for your long and informative reply.  All this information is very useful to me and I will try to encourage my husband to get a PET scan (he has had CT and MRI previously).  I am so glad to hear that you are nearing the end of your treatment please let us know how your healing progresses.

I will keep you posted on my husband.  Very many thanks

Hello Blue Moon, my treatment was completed first week in March or around about there.  Just to say that it was a 6 week treatment and chemo took place for one week beginnnig my third week and then again in the 5th week.  Sounds like mp327 had the same treatment as that is the standard treatment.  I was diagnosed in the previous March but it was not until August last that they say it was diagnosed, however, these things can right themselves and mine was an ulcer just inside my anus....the thing is, that it is frightening, it creates mood swings and the treatment isn't light at all.  I never missed a day, too much life to go through yet.  You could talk about gaining a quality of life and love and family, that may help encourage your husband.  I do all the healthy things and did before I was diagnosed but I was not always like that and now I make my own yogurt, fermented vegies and damper, I try to stay away from bread and other fried food, chocolate and sugar as well, only falling off the wagon when its absolutely necessary to perk myself up.  Although my treatment was ended in March I still get very tired and I think it takes about a year to overcome.  After treatment my system was down so much that I got shingles, but I over exerted myself about 2 weeks into recovery and I think that is what made me a bit open to the shingles.  Still, there is so much life to be lived that it is hard to hold back.  Hope that may help.  

I have the same issue. Some women have tried dilators, estrogen cream etc. If you use key words stenosis, dilators, or vagina you might search this site and get some threads that might be helpful.