Our Stories

ACW189

Thank you JDuke for starting this new discussion board. I've gravitated to CSN periodically during my treatment but found Anal Cancer discussions going on all over the place under CRC and "Other Rare Cancers". So I've spent time on another site. Good to be back.

I thought it might be nice to start a topic where we can all post our stories rather than follow each separate discussion thread. So here goes:

54 years old; experienced none of the common risk factors other than suspecting HPV (only three sex partners in my lifetime -- only takes one I guess..)

Dx - January 09 Stage I NOMO

Tx - surgery February 09 and rad/chemo April-May 09; 28 fractions radiation with mitomycinC during first and fourth week.

Late effects - hospitalized one week after treatment ended for neutropenia & UTI (common), abscess and fistula (resulted in a fistulotomy Nov09), leg muscle fatigue and low back & hip pain (exercise & yoga help alot). Also, intestinal issues come and go (4-5 x's per day right after treatment--it gets better). Close watch on diet, lots of water and exercise help. No major issues with vaginal or rectal stenosis.

Advise for newly diagnosed - 1. Read NCCN anal cancer treatment guidelines 2. Research on PubMed 3. Check out other discussion boards "Rare Cancer Alliance" 4. Demboro (spelling?)soaks during radiation as soon as skin begins to break down are a must and warm baths and sitz baths are extremely helpful.

I'll stop and welcome others to follow.
acw189

z

Story
I am a 50 year old female. I live in Florida. I have HPV, I smoked and I didn't eat right for the last 2 years. I also was out in the sun boating for the last 4. I never used sun screen. I thought I had a hemroid and put off going to the doctor. It started in 10-08, and I didn't go to the doctor until 4-09. I thought I would just go to the gyno for my papst and be told how to treat my hemroid. The PA told me this is not a hemroid and referred me to a gastrologist, who said this could be a hemroid, who then referred me to a general surgeon. The general surgeon said I'm 95% sure this is squamous cell carcinoma. I had a colonoscopy and biopsy and yes it certainly was cancer. From there I went to the oncologist, radiologist, and correctol surgeon. I was Stage II NOMO Anal Verge Cancer. I had the 5FU for weeks 1 and 4 24/7, with 1 infusion of mitomyicin on the 1st week. I had 30 radiation zaps. I completed treatment 6-30-09 and have had the pet-ct, biopsy and dres, that all say there is ned. I have my next pet-ct scan on 5-10. I have certainly learned a valuable lesson, in that denial is not good for you. I was in such denial, that I didn't even believe the general surgeon when he told me that he was 95% sure it was cancer. Denial could have killed me had I not gone to the doctor. Now I tell my family and friends if you think something is not right then have it checked out. Early detection is what saves many lives. Also early screening.

Lori

SueRelays

z said:

Story
I am a 50 year old female. I live in Florida. I have HPV, I smoked and I didn't eat right for the last 2 years. I also was out in the sun boating for the last 4. I never used sun screen. I thought I had a hemroid and put off going to the doctor. It started in 10-08, and I didn't go to the doctor until 4-09. I thought I would just go to the gyno for my papst and be told how to treat my hemroid. The PA told me this is not a hemroid and referred me to a gastrologist, who said this could be a hemroid, who then referred me to a general surgeon. The general surgeon said I'm 95% sure this is squamous cell carcinoma. I had a colonoscopy and biopsy and yes it certainly was cancer. From there I went to the oncologist, radiologist, and correctol surgeon. I was Stage II NOMO Anal Verge Cancer. I had the 5FU for weeks 1 and 4 24/7, with 1 infusion of mitomyicin on the 1st week. I had 30 radiation zaps. I completed treatment 6-30-09 and have had the pet-ct, biopsy and dres, that all say there is ned. I have my next pet-ct scan on 5-10. I have certainly learned a valuable lesson, in that denial is not good for you. I was in such denial, that I didn't even believe the general surgeon when he told me that he was 95% sure it was cancer. Denial could have killed me had I not gone to the doctor. Now I tell my family and friends if you think something is not right then have it checked out. Early detection is what saves many lives. Also early screening.

Lori

I am 51 years old.....and
I am 51 years old.....and want to re-empahsize to NOT disregard symptoms. I literally had a pain in my cheek muscle. My bofriend said "maybe you pulled a muscle doing pilates"....seemed reasonable. Never went away, and eventually kept me awake at night. Called obgyn, was referred to colonoscopy...which was to be done in several weeks. Then blood showed up in my stool.....called and requested an earlier colonoscopy. Although the doctor who performed it said there wa basically nothing notable, and sent me to ultrasounds etc.....he called within a couple of days to tell me I had anal cancer. COMPLETE SHOCK!!! This was in April 08. Did the chemo/rad. Then through scans they watched a spot on my lung, whcih eventually grew....biopsy in October of 08 came back cancer again....but a completely different type. NEVER SMOKED! So had a 1/5 of my lung removed on New Years Eve of 08. Decided I wanted all cancer out of me in 08! But come to find out THIS New YEars Eve....the anal cancer has mets to my liver. Liver resection next week. I have had a pain in my side for a year!!!! They thought it was my gall bladder....tested...no....bone scan, all kinds of crap, and not until my one year lung scan did it show this tumor right where my pain has been!!!! I KNEW something was wrong, but when your tests keep telling you there isn't anything, you start to question yourself. I should have kept pushing for more tests!!!
Anyway, we are hear to learn from one another, and I hope my story helps others!!!

dasspears

Me too...
I was 52 when diagnosed. I had been having a very stressful year prior to my diagnosis - was traveling alot with my job - not eating as well and probably indulging in too much wine. I noticed a change in bowel movements and then blood everytime I defecated. A colonoscopy performed 2 years earlier found hemorrhoids so I assumed one was acting up. I went to my ob-gyn for annual check up and she noticed a growth but could not identify it. I then went to a colorectal surgeon - I saw her on a Monday and was in the hospital for surgery the following Monday.

It was squamous cell carcinoma - and while the tumor was removed, she could not get clear margins without weakening the vaginal wall. Chemo and radiation was prescribed. I had 5-FU and cisplatin in the first and sixth week of radiation. I was Stage I, no node involvement. Two years later, I still have intestinal issues depending upon what I eat, I fight with a fissure that is inoperable due to radiation damage so i use stool softeners and I am working through vaginal stenosis.

The chemo presented a problem with my red blood count and I had to have two transfusions and 3 eopgen shots. Then a bone marrow biopsy to determine why my counts were not returning to normal. Just more radiation damage.


For those just out of treatment, your energy will return - it may take some longer than others but it does get better. It honestly took 18 months before I could say that I felt 95% again. If I get overwhelmed or stressed, I do find I get fuzzy thinking but even that is getting better.

Laugh a lot, enjoy each day and do something for you!