Anal Cancer

ACinNC

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

Blue moon

You've  got a lot to deal with.  I hope someone who is knowledgable about what happens if a tumor is left untteated will respond.  I didn't  choose that direction but my oncologist did tell me I  wouldn't  want to die that way.  Did you ask your onc about how things would progress.  I know there are others on this forum who have chosen not to treat.  They might know more.

You might get more responses if you write this as a new topic  instead of adding it to an older thread.

Blue Moon

ACinNC said:

Blue moon

You've  got a lot to deal with.  I hope someone who is knowledgable about what happens if a tumor is left untteated will respond.  I didn't  choose that direction but my oncologist did tell me I  wouldn't  want to die that way.  Did you ask your onc about how things would progress.  I know there are others on this forum who have chosen not to treat.  They might know more.

You might get more responses if you write this as a new topic  instead of adding it to an older thread.

ACinNC

Thank you for your response.  I have not asked the onc that question yet as my husband is always there and I feel I don't want him to be there for the answer - not at this time anyway.  I will add this as a new topic - thank you for your advice.

Kim Gaia

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

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

mp327

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

Blue Moon

I'm sorry your husband has been diagnosed with anal cancer.  As you already know, chemo/radiation is the standard treatment.  I was diagnosed in 2008 with a tumor that was on the line between Stage 1 and 2, which no spread to lymph nodes or other organs.  I am still here 10 years later, so I consider myself a success story.  I'm sure you have read up on anal cancer and its usual progression if left untreated.  Usual sites for distant metastises are liver and lungs.  There are also cases of bone mets.  As you can imagine, once the disease spreads to vital organs, treatment outcomes are not as good.

I am not defending the oncolgist's decision to no longer see your husband, but I can understand why he would no longer follow-up.  Basically, a doctor's hands are tied when a patient refuses recommended treatment.

I wish you and your husband all the very best.

Blue Moon

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

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

linda7408

milliebee said:

Is alternative to colostomy if chemo & radiation don’t cure it?

I finished chemo/radiation early April. Really sick with appropriately named 5-FU. Now am hearing different things from different docs. Radiologist said my May 22 post-treatment CAT scan was “fantastic.” Oncologist didn’t say much, but when i pressed him, he said “it was good,” without much enthusiasm.

Both told me the surgeon, who I’d met only once, before my initial PET scan (and told me then, when I asked, that with stage 4 anal cancer patients, they do “pallative care,” which freaked me out).

I know now I had/have stage 3c. The surgeon ordered a MRI July 13, which apparently showed lymph nodes gone and tumor greatly reduced, but she doesn’t know if what is left is tumor or scar tissue. She ordered a flex-sigmoidoscopy for next week. And said we’d do another in a month or six weeks to see if it’s growing or same. I asked her if she wanted to see May 22 CAT scan results to see if the July 13 MRI results had improved, but she said she didn’t need to. The sigmoidoscopy is her gold standard test.

There have been other issues with fluid in lungs (have a mild case of pulmonary hypertension), making it hard to breathe (much improved now) and hair getting thinner, both happening 2 1/2 months after last chemo, which i think caused both

The surgeon keeps mentioning she’d need to do a permanent colostomy or perhaps a resection because my anal tumor is actually high in my rectum. She said she has asked numerous surgeons at MD Anderson and other cancer hospitals if a temp colostomy, then a resection would be as good a cure as the permanent colostomy. I like and respect all 3 doctors, but am wondering if I should go to a cancer center for a second opinion? I read here about a specialist (non-surgeon) in recurrences at MD Anderson. My surgeon consults often with MDA surgeons, but didn’t know the oncologist some of you have mentioned.

i am so confused. My pulmonologist is my favorite doctor. First time I met him, he asked, “What did you hear?” from other doctors? I think it’s one of the best questions a doctor has ever asked me, because then, like now, I felt like I was living in the Tower of Babel. (He also gives all of his patients his cell number so we can text or call whenever we need him).

Is it because there are so few anal cancer patients that treatments have not changed in decades? I’ve been seatching online for hospitals that seem to deal most frequently with anal cancer, and can’t seem to find any standouts. Somebody suggested Vanderbilt, but i’m told it and others are focusing more on prevention through the vaccine.

Sorry to write so much. But I don’t know what to do. And the surgeon’s comments make me feel that it’s urgent to do the two sigmoidoscopies to compare them, and then decide on which surgery to do if cancer is still there.

How fast does anal cancer grow?

 

 

 

 

 

alternative to colonoscopy

That's it could go anywhrea tough one. I had rectal cancer and they did the surgery half way rhough. If you wait, it could go anywhere.  Especially if MD Anderson agreed.

I had only a small amount left in the rectum that they remofed and it wtill spread. If you don't, at least get scans every couple month at least.

 

pimmento

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

Radio and Chemo

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.  

Brendaklein

vigina

it's been over 7 months since my last radiation. Vigina still not the same. Sex hurts, I feel awful for my husband. I didn't want to give up on that part of my life. What to do??

 

Mollymaude

Brendaklein

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.