Anal cancer not cured with chemotherapy and radiation. Desperate to find alternative to colostomy

Fighting_4_Mike

I'm very sorry to hear of your husband's diagnosis and residual tumor.  I can certainly understand your desire to find a treatment alternative to the colostomy.  Unfortunately, that is the standard procedure when there is a recurrence or residual tumor and I am unaware of any other options.  However, I have not researched current clinical trials.  In your husband's situation, I would probably contact Dr. Eng at MD Anderson in Houston, Dr. Berry at University of California San Francisco, or Dr. Martin Weiser at Memorial Sloan Kettering. 

My heart goes out to your husband and you.  I can only imagine how difficult this is.  I hope you'll keep us posted. 

Fighting_4_Mike said:

Thank you so much for your

Thank you so much for your feedback.  You are absolutely correct, surgery seems to be the only option but he is having a hard time accepting that and I want to make sure I leave no stone unturned.  I will absolutely check out the treatment centers you listed.  Thank you so much for replying. I am new to this website but I am quickly learning it's almost like a family of patients and caregivers.  Thanks again and take care.

Hi there! 

I am sorry about your situation. It's not what any of us want to hear. I understand that a colostomy is the next stage if the chemo radiotherapy has only partially worked. However, I also understand that radiotherapy continues to work for about 6 months, & that it is after this time that a colostomy would be performed. If that is necessary for your husbands survival, there are a couple of people at least here who would be of support I am sure. I think you will find a colostomy group on this site. 

Again, I am sorry that you are both in this situation, but  the statistics indicate a good success rate with salvage surgery. 

Best wishes

Liz 

 

Second opinion

At MSKCC where I was treated, they were very cautious since the scar tissue resembles the tumor so closely. So I would definitely recommend a second opinion and like the suggestion of a biopsy, if possible. But maybe another scan and another doctor reading the scan. I was told that three oncologists had to approve my scan before they declared the mass that remained to be scar tissue.

Good luck,

Sandy

Dear Friend,

I am a 49 year old male with rectal cancer after radiation, chemo, surgery and permanent colostomy. When my cancer was removed 10 weeks after the end of radiation, there were no living cancer cells in the specimen. The radiation and the chemo destroyed them all. I read it in many places that you should wait at least 10 weeks after radiation. On my MRI it looked like nothing changed, but all the cancer was dead. Anal cancer usually responds even better. Get biopsies and other opinions, before deciding about surgery and don't let yourself pressured early into it. I am young, recently married and a colostomy is not the end of the world if it has to be. Life is precious in any shape and form.

Laz

I'm so very terrified of

I'm so very terrified of recurrence and came across this info. The original link was posted by Martha.

 

http://www.advaxis.com/news/detail/194/advaxis-announces-phase-12-trial-of-adxs-hpv-in-anal

Helen321 said:

As a person who has had the

As a person who has had the surgery (my rectal cancer was on top of my anus), I wish I could tell you an alternative but I can't and so I will tell you this.  . . Life doesn't stop because you have a colostomy, life does stop if you don't stop the cancer.  One year out of the surgery, I am happy, healthy and living my life as I normally would.  It's just something you get used to.  At first, it's depressing.  The first week home you want to rip the bag off and you spend a lot of time feeling sorry for yourself, then you go through a period of depression.   Then one day, you go outside, you realize hey I'm okay, I'm alive, I'm out having a good time and no one knows and life moves on.  It took me three months to get to this point.   I don't even think about the bag anymore.  Through experimentation with different bags and accessories, I've mastered the necessary supplies to make life function (there are two piece bags that are easy peasy, they let you just change and go).  The only problem I am having is pain when I sit.  My job requires me to sit a lot and things are very painful sometimes due to over sitting.  I hear it takes five years for it to go away and sometimes it doesn't go away.  Your husband is going to be fine.  Don't beat yourself up overthinking it.  The best part is, he'll be here so you can see him and touch him.  That's what counts, not how he poops.

Helen321.....

Hi, I don't remember seeing an earlier post from you so if I missed it sorry! Welcome, it sounds as though you are doing well. I also have a colostomy (3yrs now) and agree......easy peasy, and life does go on once you let it!

There is an adjustment period, and some people deal with related issues that make that more difficult, but I too am fortunate to be doing well and living an active healthy life. Until you are living with an ostomy though it is really hard to wrap your head around the whole idea since we have been programmed since birth to learn one way to poop! Lol Glad to hear from you and I wish you continued health.

Oh, I often still sit on a soft pillow btw.

katheryn

Helen321 said:

Hi Katheryn. I am from the

Hi Katheryn. I am from the colorectal board since I had rectal cancer but I cross over to the anal and gynelogical boards because most colorectals don't end up with colostomies.  The gyno boards are great for vaginal issues from radiation.  My rectal tumor was right on top of the anus so I lost the whole area.  My turning point was when I switched to a two piece system and now the discovery of barrier strips. Food is still an issue but things are getting better. Slowly I'm adding back fiberous foods. A year ago I never thought I'd be in such a good place.

 

Thanks for the welcome! 

Helen321.....

Hi, you are wise to float between boards to get well rounded advice. I also read posts on other sites, but seldom post. I was treated for breast cancer as well so post occasionally there.

A helpful site for people with ostomies is   C3Life   there are links to manufactureres for free samples and some really great and encouraging people that post there. I do attend an ostomy support group in person and it is so helpful to be part of a group of people who I can talk to face to face in the same boat as I. Also the UOAA (United Ostomy Association of America) holds meetings all over the country and has some great on-line support too. I usually use a two piece system as well and LOVE the barrier strips from Coloplast. They, Coloplast, just came out with a new system this late spring called MIO and the wafer is very much like the strips......I just sent for a sample but have used the smaller "cap" version before.

What I eat seems often not as much an issue as when I eat, although there are some foods I avoid. I have always followed a somewhat disciplined diet anyhow so now use that same philosophy to control my output as not to disrupt my day too much.

Clothing is the thing that frustrates me the most I think, as I have also had a double mastectomy with no reconstruction.....thankfully I am creative!

Hope this post was not too "off topic" for others but we all have similar yet unique concerns.

katheryn