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Squamous carcinoma

Dasani1003
Posts: 7
Joined: Jan 2010

Hi folks. I am here to post to get some information for a friend.

She was just diagnosed with a squamous anal carcinoma. I know that these are usually an adenoma, but her's was caused by a botched surgery many years ago, so this sort of cancer in this location is rare. She is in the very early stages of investigation (CT & MRI to be done in the next couple of days) and will see the cancer/surgical specialists later this week.

What sort of things should she be asking? My Dad had this cancer last year and decided to not take the radiation treatment because of risks of incontinence and damage to the bladder. Are there other significant risks to radiation, chemo and surgery? We realize that there is a possibility that she will require a permanent ileostomy as the tumor is 2 cm above the anal/rectal junction.

Typically this type of tumor responds well to radiation. Can anyone tell us about how that went for them? They have talked to her about the radiation and doing or not doing the surgery depending on what she wants to do.

Any personal experiences and information would be greatly appreciated.

Thanks.

I love cats's picture
I love cats
Posts: 3
Joined: Jan 2010

I have just finished chemo and radiation for squamous cell carcinoma of the anus. I thought I had inflamed hemorrhoids. I had surgery, but they couldn't take all of the tumor, as it was imbedded in the sphincter muscle. The Drs. said they've had pretty good results with chemo and radiation.

I had an exam, and the Dr. said everything felt normal, he couldn't feel the tumor. He had me take a pet/ct scan, (just had it today), so he could see the lymph nodes.

I have scarring in the anal area, now, and have to use a stool softener every day. Even then, it sometimes hurts when the stool moves.

I have been a little nervous regarding the chemo and radiation.

KathiM's picture
KathiM
Posts: 7907
Joined: Aug 2005

That was me...lol...squamous cell carcinoma in the first rectal fold.

I had a 2 inch tumor, and my treating docs didn't know quite which treatment path to follow....this was anal cancer in the rectum...

So, lucky for me, they decided to choose the type of cancer, not where it was. Chemo with 5FU and cisplatin. Rads concurrent. Their main goal was to reduce the tumor size so that I had the best chance of saving my spinchter.

It worked so well, that by the time I saw the surgeon (who, BTW, specializes in 'low bowel resections'....VERY important!!!!) there was nothing left to see of the tumor. We decided, based on my age (49) and my family situation (2 special needs kids) that we would go ahead with the resection, so I had a J-pouch procedure...removed my rectum, sigmoid colon and fashioned a new rectum from my descending colon. Total hysterectomy at the same time (I wasn't using this organ anymore, and it made the field for the resection easier to see). 5 years later, it's still doing well, and much of the time, I sort of forget about it....lol...till I eat something on my 'naughty' list...like beans...

What to ask...well, ask if there is a surgeon you can be referred to that specializes in low bowel resections. Ask what the recovery time is. My advice is to find someone who can give you an answer other than 'well, of course you will have a permanent ostomy'.

Also, it is my understanding that anal cancer is not usually treated with surgery, at least not the first go-round. My full blood sister had anal cancer 2 years after my cancers (I had breast 6 months after the rectal). She was treated with INTENSE radiation, and chemo. It was rough, but she is cancer free.

Hugs to your friend, and to you for caring enough to ask for advice....suggest she join here...it's a great support family....

Hugs, Kathi

phillyAC
Posts: 6
Joined: May 2009

In 1992 I was diagnosed with 2cm squamous carcinoma just at the opening of the anal canal. The options were the same - (2) rounds of 5FU and Mitomycin chemotherapy, which I did at home, during the same time I also did radiation 5-days a week for 8-10 weeks, which was stopped a couple of times because of radiation burns. I learned to pee and poop while my butt was in warm water - cut the pain to zero.

Sitz baths are very soothing and relaxing. I did go into menopause at 42 and that was from the chemo, so be prepared for that addition to side effects. I'm 59 now so talk to your doc about ALL the possible side effects that are long-term. Radiation & chemo are still having long term effects on me so keep asking questions, what about vaginal drying and shrinkage. Sexual changes a very likely and being prepared for them can keep your current and/or future relationships intact.

It's been a long time since I've had to think about anal cancer, but I'm grateful for my docs at Jefferson University Hospital in Philly for saving my life and giving me time to enjoy my family - yup, there are side effects, but finding good docs that listen to you and care about you as a person can give you a future with the least amount of changes. Check into all your options and don't be afraid to ask questions - you are paying them to do their jobs and you should be a satisfied Cancer Survior when you are finished with treatment.

Just a side note: find yourself someone like a psychologist to trust and talk to openly - it's a very private place for cancer and most folks have a hard time talking to anyone about this part of their bodies so do this for you as a person so you can heal from within.

Bless you on this journey!
I'll be here if you need someone to talk to!

KathiM's picture
KathiM
Posts: 7907
Joined: Aug 2005

And it sounds like you are doing well...YEA!

Hugs, Kathi

Gemlady113
Posts: 2
Joined: Aug 2009

Last month I received the news that my 5cm. tumor was gone, with just scar tissue remaining. Wonderful Christmas present. I will be 65 in March. However: I also did the 2 bouts of Chemo at home but 23 of the 33 recommended radiation concurrent, 5 days a week. After 23 I was the color of an eggplant with skin hanging off me in strips. I refused any more radiation. For that reason my oncologist feels that I will have reoccurance that they can be on top of and take care of with minor surgery, IF it comes back in the same place.
I was so weak I requested Physical therapy to get strong again. That's working, but my pain levels have increased.
When I quit radiation, I curled up on the couch for almost a week, trying to get my head around the whole thing. Dying wasn't what scared me, we're all going to die. Having gone through my best friends cancer with her, 8 years ago, my fear was the suffering I watched her go through. I decided that if my cancer was going to go away, God was going to have to do it. I had done about all I could. If God wanted me to be cancer free, he'd take care of it. If he didn't nothing the docs could come up with was going to help.
Your right about the Physcologist thing: but where do you find one who has the experience of dealing with this kind of cancer?
I think I will make an appointment ASAP and discuss these issues with my Oncologist. I wish he weren't so damn young.....
You write a good letter, Thank you

NewLife2008's picture
NewLife2008
Posts: 5
Joined: Feb 2009

Hi there GemLady....
Your letter brought back some very painful memories for me, as I also have suffered from Anal Cancer in 2008. Our stories are very much alike when in comes to the radiation issue, but I wanted to check to see if you were using the newer radiation called I.M.R.T. It is more advanced in its technology so it provides a more "spot-on" approach with less damaged area around the tumor. It is more costly, and some insurances will not pay for it, but it is worth discussing.
I had Stage 3 Squamous Cell Carcinoma (Anal Cancer)with 2 tumors that I believe developed from a history of frequent hemmorhoids...that's my opinion on how they developed because I dont fit any of the profiles. I had 2 rounds of 5-fu & mytomycin each over 1 weeks time at home, and 35 rounds of radiation (IMRT). I had to stop with only 7 rounds left because it became so very painful, like an extreme sunburn. The doctor decided to take a break for one week and then resume treatments, but I somehow developed an infection and had to be hospitalized for several days. Once the infection was clear, I returned to finish the 7 rounds with no problems. There was a break of at least 2- 2 1/2 weeks between the treatments. Is that maybe a possibility for you to finish your treatments?
I hope the info on the I.M.R.T. will be of some help to you. I know how very hard it is, but don't let cancer win the fight. You can do it! I have been cancer free for 17 mos now & I count each day I have a special blessing.
Blessings on your journey to wellness!

Dasani1003
Posts: 7
Joined: Jan 2010

Philly - thanks for the advice. My friend really appreciates this!

marki_g
Posts: 5
Joined: Jan 2010
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Dasani1003
Posts: 7
Joined: Jan 2010

So my friend saw the surgeon and she is going to have just the lump removed. It is in a location where they can save the sphincter muscles. If it turns out to be completely localized she will not need follow up chemo or radiation. Things are looking up for her. The surgery will be a day surgery and her Mom and sister are coming to help her out. Thanks for all your stories. They have helped tremendously.

lizdeli's picture
lizdeli
Posts: 522
Joined: Jul 2009

Dasani
That is great news about your friend. So happy for her and those that are supporting her through this.
Liz

JDuke's picture
JDuke
Posts: 443
Joined: Nov 2009

friend got good news. I hope the surgery completely takes care of it and that she is quickly on the mend. Thank you for being there for her, support is so important in frightening times like this.
Blessings,
Joanne

KathiM's picture
KathiM
Posts: 7907
Joined: Aug 2005

That there is nothing more than this!

Thank you for the update!!!

Hugs, Kathi

ACW189
Posts: 24
Joined: Feb 2009

That is good news. Be sure your friend reads NCCN guidelines and asks her doctor to describe any invasive characteristics. My tumor was very small Stage I, no lymph nodes or mets but because it appeared to be invasive I still had chemo/rad following surgical removal. Best to be careful. I'm 10 months out of treatment and feeling great! Cancer free.
ACW.

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