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Anal Cancer 5 year survivor

Posts: 8
Joined: Jul 2009

I was diagnosed with squamous cell carcinoma at age 47, in December 2003. I had been experiencing sharp, excruciating anal pain periodically for about a year. My surgical oncologist told me that was very unusual. He felt that the cancer was most likely the result of a positive PAP from several years prior (no anal sex, but many years of unprotected sex in the 70's and 80'). Though the staging level changed with each step, I believe I was ultimately classified as a Stage II, no metastasis. Less than a month later I had surgical removal. My surgeon was able to keep my sphincter muscle in tact with no colostomy, but the possibility was discussed in advance. They weren't going to give me pain meds in recovery until I insisted. My doc said it wasn't usually necessary. It was really painful to eliminate for a short time, but that improved fairly quickly. One month later, I began chemo and radiation. The first day was a few boluses of chemo and then a 5 day delivery through a picc line. I had 6 weeks of radiation (plus one week off at about week 4 for a little healing time). The chemo doctor decided that I would not require another bolus treatment during the last five days of radiation--just the picc line treatment.

As for what I experienced: I lost my appetite the whole time and developed a white film and mouth blisters during the chemo stages. I got very tired, but not as much as I thought I would. I drove myself to radiation treatment with no problem. My pelvis, gentiles, and buttocks became covered with peeling oozing skin (I ended up with a new bootie). And yes, it was very painful. I soaked in my tub several times a day and had to lay on the couch in different positions throughout the day/night. I tried to walk and do things, but I was too miserable to do much. My hips ached severely.

At one point I had to have an injection for a low white blood cell count. I really didn't have much nausea to speak of, just minor on occasion. My hair began to fall out by about the second or third week of treatment and I just shaved it off. When it is falling out so rapidly, it is hard to wash and detangle. The hair loss was patchy, not all areas went completely bald. I only wore a wig about 3 times total. I have a huge head and it was very uncomfortable. Besides, I found I had a nicely shaped dome. My hair went very gray/white when it grew back in. The gray lessened as a little as I recuperated. I was ticked off that I didn't eat much but didn't lose that much weight! The least this disease could have done is given me a better body. Oh well.

During the treatment, there were pain meds prescribed, I used Aveno oatmeal "salts" in my baths, and the doctor also gave me a special substance for mouth rinsing. I was actually more tired when treatment finished than I had been during treatment. It took about a year to get back to my old self (which is iffy anyway as I have a number of other chronic health issues). I made a point of doing stretches as soon as the skin healed and walking to get my energy back up. I saw the team of doctors at regular intervals for 5 years. My last round of exams, blood tests, and CT were all good. I have not had intercourse since this all began. My vagina pretty much closed up. One of the doctors gave me a box of different sizes of "stretchers" to keep things open, but admittedly, I seldom use them. My vaginal skin is still very sensitive, very susceptible to tears which I treat with Silvadene 1% cream when needed. I admit, I have some fears about a future sex life, but if the right guy comes along, I will give it the old college try. Speaking of college, after six months of healing, I returned to school and just received my BA degree from University.

I don't regret going through the treatment one bit. Life is so precious and I am happy to be around. Treatment ends and the negative symptoms subside. It isn't going to be easy, but when you come out on the other side, it is sooooo sweet!

z's picture
Posts: 1407
Joined: May 2009

Hi radarbaby,

I am an anal cancer survivor also, I completed tx on 6-3-09 and show ned to date. Its great to see long time survivors of anal cancer. Thank you for sharing your experience. Good news makes me happy. There is now an Anal Cancer discussion board, which was started by JDuke. Come and visit some time. I wish you well Lori.

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