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Anal Cancer - Treatment Quandry

waspcracker
Posts: 8
Joined: May 2009

I'm a 59 yr. old woman, diagnosed with Stage IIIA anal canal cancer in Sept. 2008. The original tumor was the size of a large green olive and was joined to a lymph node that was golf-ball sized. There was spread to a second lymph node (small sized) outside the colon, but no spread to the groin lymph or anywhere else.

I completed treatment (30 days of radiation and 2 cycles of mytomycin & 5-FU) in Dec. 2008. I tolerated the treatment very well until the last week, when I ended up in the hospital for 11 days, neutropenic and with mucositis throughout my GI track, causing persistent watery diarrhea. Add to that the severe radiation burns. Ugh. All told I was out of work for 3 months during treatment. I have an extraordinary employer and tremendously work colleagues; they supported me in every way possible and carried my workload during those months. I am unspeakably grateful. My husband and friends have also been steadfast, full of humor and compassion.

I'm now 4 months post-treatment and feeling great, other than some minor fatigue and vaginal stenosis. I'm back full-time at my demanding but stimulating job. The original tumor is gone, along with the small lymph node outside the colon. The large lymph node is down from a golf ball to a pea-sized nodule that may or may not contain some live cancer cells (the scans showed some activity, but were not definitive.) Therein lies the problem.

I've had all the radiation possible. My medical oncologist recommends 3 more rounds of chemo to blast any possible remaining cancer in the pea-sized lymph node. I went to another medical oncologist for a second opinion since 3 more rounds sounded brutal. That oncologist said absolutely NO, the chemo could (in his words) "blow out my bone marrow." He recommended a tissue biopsy and, if live cancer cells are found, a permanent colostomy. However my surgeon refuses to do a biopsy since he thinks he'll just get fibrous tissue and won't be able to reach the suspicious area.

Now what??? I've decided to go to Sloan-Kettering for a third opinion. I'll be seeing a colorectal surgeon and a medical oncologist. Meanwhile I'm spending days gathering all my medical records to send to Sloan-Kettering. Fortunately my employer and work colleagues remain steadfast and are pulling strings to smooth my way at Sloan.

Has anyone else out there experienced this kind of uncertainty? Has anyone been through Sloan-Kettering? How about colostomies? Apparently my "pea" is attached to my tailbone. If I have a colostomy the tailbone will also have to be removed or resected. Ow. I've never found anyone else who has had anal cancer. Are you out there?

lisavaughan
Posts: 7
Joined: May 2009

Diagnosed with this cancer in May of 2006. Although the doctors told me I had a 95% cure rate I felt they had barely any experience with this type of cancer. I also got thru the treatment very well. The radiation killed more than expected. I now have severe osteoporosis and my teeth are also damaged as a result of the 42 rounds of radiation. My anal tumor was the size of a tennis ball. The radiation also damaged my upper intestines along with part of my colon. I had intestinal surgery to remove part of my upper intestines and part of my colon two years after my diagnosis. The temporary colostomy which I was told would be removed after my initial treatment of three months is still attached and will be there for the rest of my life. Radiation destoyed my cervix, anus/rectum, my vagina (no sex ever), my bones, teeth and skin and put me in menopause at age 39. They went after it very aggressively and left enough scar tissue to kill a horse. I also had three rounds of chemo with the mobile bag I had to wear for five days straight each time. Kept my weight up with ensures. Never been so sick. No words to describe it. My colorectal surgeon performed outpatient surgery for biopsies of my anus/rectum under anesthesia every two months for two years. Results of biopsies due to scar tissue were always so suspicious the pathologist had to send them away. Never found anything though. I always got the impression the Colorectal surgeon was hoping to find some cancer so he could remove my anus/rectum. A few months ago I had a colonoscopy and additional biopsies. Found nothing suspicious. It took a 4 month long hospital stay after my intestinal surgery to recover. Because I did so poorly after this surgery I was checked thoroughly and xrayed almost daily. Doctors were confused with my intestinal recovery and kept blaming it on the cancer. My oncologist visited me in the hospital and assured me with all the CT Scans, MRI and Xrays if I had a tumor they would have found it. Colorectal surgeon didn't have his head screwed on straight and wouldn't admit it was his surgery that was causing all the problems.

During my initial cancer treatment the pain was so severe I was wearing 150/mg fentanyl patches. The radiation I received to melt this tennis size ball tumor also melted my insides. Swelling so bad I ended up wearing a catheter so I could urinate. I had a colostomy and a catheter while undergoing radiation and chemo. I was told my liver would be protected during radiation but now have several lesions although after three years I've been told they're nothing to worry about.

Make sure they keep a watch on your colon and upper intestines. Very sensitive to radiation. Almost two years after my treatment I started to look malnurished. Thought the cancer was back but it was gangrene in my intestines which they misdiagnosed as an intestinal infection which put me in the hospital for 10 days. Treated with cipro and discharged. Within 24 hrs. I was throwing up and back in the emergency room with a diagnosis of a mass on my loop (small intestines melted to my colon). My colorectal surgeon thought I had the flu and was going to send me home. I refused and finally they diagnosed me with a blockage which turned out to be gangrene by the time they opened me up. At 5'2" I lost down to a weight of 83 lbs. Had a feeding tube the entire time. They didn't have a clue what was going on with me. I was dying of malnutrition; my husband did some research online and found out I should be given a supplement of optimental thru my feeding tube. I stated putting on weight and they sent me home with the nose tube for about two weeks. I began throwing up after that time and rushed to the emergency room. The ileostomy they gave me to allow my intestines to heal was reversed and my colostomy was opened back up. My entire family was down during this time b/c they thought I was a 'goner.' If you get a colostomy....always remember the high precent of it herniating. My did and I was told it was corrected during my intestinal surgery although I have my suspicion b/c it appears to have the same bulge as before.

I'm fine now. I weigh about 113 lbs. Scarred up a bit and a bathing suit is out of the question though. My colorectal surgeon told me he's looking for a 5 year deadline before he can consider me cancer free. My oncologist told me 2 years with this type of cancer. I have an appointment with my oncologist in June. I'll keep you updated if you like.

Keeping a heathly immune system is important. I thought to myself...oh my God, I had cancer with a huge tumor which they got rid of but now my intestines weren't absorbing nutrients so how can I continue to ward off any recurrence with a very weak immune system. The colorectal surgeon who refused to attempt a biopsy should be shot. Radiation can destroy it if you're allowed additional treatment. But a biopsy should be taken regardless...if only to reassure you. It's your body and your life....you do what feels right. Don't let them wait until it's obvious. If your blood work is okay and your white blood cells are within a normal range....still get it biopsied and removed if necessary. Squamous Cell in the anus has a very small recurrance so get it all. As you know....we all have cancer cells but when diagnosed with cancer and treated we don't like to hear of any being active...regardless of amount. I just discovered some small lympnodes in the back of my neck. I ask my family physician the other day about them and he said b/c of the location they are probably a result of a cold I recently had. I'll ask my oncologist on June 4th....my next appointment. Wish me luck.

You'll be fine. Anal cancer is very treatable, even at Stage 3. Stage 1 & 2 have a 95% cure rate and Stage 3 has a cure rate of 85-90%. Odds are very much in our favor. This type of cancer is comparable to non-hodgkins disease which is also 95% curable. Both respond very well to treatment.

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