What to expect with no treatment

Blue Moon

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

mp327 said:

Blue Moon

Blue Moon, I copied and pasted my comments to you from another thread.

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, with 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.

Thank you mp327

Thank you for taking the time to reply to me.  I too totally understand the oncologyst's position on this matter; it's just that no contact is like severing ties and we are afraid to do that.  I have tried to look up anal cancer and progress if left untreated but have found very little.  If you have a site in mind please let me know.

I will keep you posted and thanks again

ACinNC

PET scan

I think Kim's idea of pursuing a PET scan would give you a clearer idea of what he is facing without treatment.  An MRI and CT, while both useful, do not show how deeply lymph nodes are involved or metastasis to liver or lungs or beyond.  Those 2 tests can show size of nodes or masses that would indicate involvement but since they don't "light up" as on a PET scan you don't know for sure.  And occasionally a normal sized node will light up on a PET scan that would be overlooked on a CT scan.

I resepct everyones right to determine how they will live or die.  But if he is not fully aware of what is involved with this cancer, the oncologist should tell him how things would likely progress so that he can make a decision to treat before it gets to the point that he would be only able to get salvage therapy if he changes his mind. And a PET scan would help the doctor give him a clear picture at this point.

I would think that the oncologist would at least keep him on as a patient in case he needs palliative care.

cbviau

Blue Moon said:

Thank you mp327

Thank you for taking the time to reply to me.  I too totally understand the oncologyst's position on this matter; it's just that no contact is like severing ties and we are afraid to do that.  I have tried to look up anal cancer and progress if left untreated but have found very little.  If you have a site in mind please let me know.

I will keep you posted and thanks again

Pain

His pain alone should give you valid insight to all the questions the two of you may have.

mp327

Blue Moon

Blue Moon, I copied and pasted my comments to you from another thread.

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, with 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.