Rare Cancer Stories
Share |
Home   Support   Story   Forum Support   Info   News & Clinical Trials   Cancer Dictionary   Events Calendar   SiteMap   Twitter   Facebook

Squamous Cell Carcinoma Anal Cancer

My Journey by Gabby (Beady) - March 3, 2007

Join 'Gabby' on our Anal Cancer Support Forums

I am a 40 year old female and a single Mom to a 12 year old daughter and 1 year old son.  I also coach competitive soccer and foster dogs for rescue societies.  My story is told below, as it happened.

July 28, 2006:
I went to the doctor 10 weeks ago for treatment of a hemorrhoid that would not go away.  He referred me to a colorectal surgeon to plan surgical removal of the 'hemi'.  I had a colonoscopy and the doctor took 1/2 the growth that was on the edge of my anal sphincter.  There was no growth through the wall of my rectum and no other symptoms.  He sent the tissue off to pathology.

When the pathology was complete, my doctor told me that what I have is like a 'skin cancer', only on my butt???  It is a mildly differentiated squamous cell anal cancer.  What kind of luck do you have to have to get this?!   It is very rare, which makes it somewhat scarey to me.  The surgeon says that I will have radiation as my only treatment, although I've read that they also do chemotherapy for this.

I'm feeling pretty overwhelmed right now and hope its not worse than he says that it is.

October 12, 2006:
I finally got everything figured out!  I was staged at T2n0m0.  It was awesome knowing that I had no node involvement or mets. (Man, I'm sounding like a veteran aren't  I?)

After having a CT and Pet scan, and tons of cancer markers, I was asked to participate in a phase I clinical trial (aka: one step above a 'lab rat'!).  I had 4 days of light chemotherapy; 1/2 standard dose of 5FU (96 hour infusion) and Mitomycin C, concurrently.  I also had 12 days of radiotherapy; 1/2 dosage as well.  I also donated 4 liters of my blood and had the squamous cell cancer antigen 'turned on' to fight my cancer via my own immune system. I was given four 10cc vials of the 'gene stuff',  on a weekly basis, over a 4 week period.

My radiotherapy was intensity modulated radiation therapy (IMRT).  My treatments were 14 seconds on the front and the same on the back.  While the radiation wasn't a walk in the park, considering the cancer's location, it was doable. I lived in the bathtub with baking soda and wore the baggiest clothes that I could find. I found that putting cold cream in the fridge provided the best relief.  My doctor strongly encouraged me to take extra calcium, for life, after I was done. As women, we are prone to osteoporosis anyways and radiation only compounds this.

Twelve days after I started the treatment, I was declared NED (no evidence of disease).  I am currently on a 3 week break.  On the 23rd, I'm getting 4 more days of the chemo and 12 days of the rads.  Then I'm done, yeah!!!

I had a sore 'bum' for a few sleeps but am feeling awesome.  My blood counts have been stellar, as have my platelets, etc..  I will be finished with my treatment on the 7th of November and I'm so looking forward to closing this chapter on my life, although, it will always be in the back of my mind.

At first, I wanted to preserve my fertility and so I had my reproductive organs protected during the first round of radiation. Since then, I have decided that I don't ever want to risk this occuring again.  I was told that secondary cancers usually show up in the reproductive organs; so, today, I had a 10 second dosage of high rads to the ovaries, tubes and uterus.  I won't ever have another child, which I'm dealing ok.

Summary:

The chemo wasn't so bad.  I didn't take any pills for nausea because I didn't really feel a need for them.  My hips were a bit sore,and still are, from the radiation; so I'm doing yoga and biking.  They are getting better each day.  I never lost my hair although I lost my pubic hair from the radiation. Its come back in a bit but I look more like one of those 'Chinese hairless dogs'!

I tried to keep myself as positive as I could and I counted down the days until I was done with the treatment.  While I found the treatment to be pretty tolerable, physically; the emotional scars of having lived through something like this can sometimes be life-altering.

I immediately started volunteering to help others.  I wanted to get involved, somehow, and learn as much as I could about this disease.  My oncologist asked me if I would be interested in mentoring other patients just starting treatments.  So, I became a  'buddy'.  It was so fulfilling and fun, at the same time. Sometimes things are easier to deal with if someone is with you that's 'been there and done that'.

My particular anal cancer did not sensitize to the HPV antigen.  I, also, had NO risk factors for it.  I'm not HIV positive and I'm only 40.  The 'normal' age for this type of cancer is 63.  I learned that men have a higher rate of cure, as opposed to women, with this type of cancer.  The good news is that anal cancer, although quite rare, is also highly treatable.

I have a wealth of knowledge from this experience and would love to keep in constant touch with all of you 'rare babies' as well.  My oncologist said that this cancer makes me a red dog in a litter of brown puppies and there's a reason for it all !!  If anyone has any questions or just wants to have a chat, please see me at the Anal Cancer Forums.

Best of luck to all of you guys....Life really does rock !!