Anal squamous cell - why no research?

momacork

anal cancer squamous cell
I am 45 female was diagnosed in November 08 I had no reason to get this cancer and was also told that this was very rare. My onco was very surprised the first time she saw me as I had none of the pre-conditions to get this. Non smoking, no HPV or HIV, only been in a couple of relationships my entire life, however cancer runs strong in my family. I had six weeks radiation and week one mito & 5FU and week five. Had a very hard time with the Chemo and was hospitalized for three weeks as my blood levels dropped very low and had bad reation to Diluadid.

subu2628

tfussell said:

I've just found out that I have a 4cm long tumor in my rectum - squamous cell. A surgeon reviewed it and they are sending me to a onocologist. The CT scan showed no spread.

Any words of encouragment?

Encouragement - squamous cell rectal cancer
I was diagnosed with the same cancer 5 years ago- it was 5 cm. I was 50 years old and otherwise healthy. I was treated with radiation and chemo and didn't have surgery. So far so good- The longer you go without a reoccurence the more unlikely it will return.

pjjenkins

momacork said:

anal cancer squamous cell
I am 45 female was diagnosed in November 08 I had no reason to get this cancer and was also told that this was very rare. My onco was very surprised the first time she saw me as I had none of the pre-conditions to get this. Non smoking, no HPV or HIV, only been in a couple of relationships my entire life, however cancer runs strong in my family. I had six weeks radiation and week one mito & 5FU and week five. Had a very hard time with the Chemo and was hospitalized for three weeks as my blood levels dropped very low and had bad reation to Diluadid.

anal squamous cell - mitomycin/5fFU
so with diagnosis less than two months apart and the same treatment, we are indeed sisters in this.

What is Diluadid? It does sound as though you had a really tough chemo treatment time!

I feel so glad to find others here as early searches on the internet indicated only about 200-300 people have had this diagnosis since the 1930s! As there are several of us here, I thank God for the electronic age we live in! Most of us must have checked in here at one time or another.

I had some difficulty with anemia and had a couple of transfusions. The treatment center here really focuses on outpatient and since my kids (now 28, 26 and 23) worked out for me to have 24-7 care with their dad, I had wonderful care.

I ended up allergic to something - whether it was the antibiotic they put me on or one of the CA drugs, I hope we will never know! I just remember being sick, sick, sick. Thank God for the painkillers and anti-nausea stuff they have now.

Have you found perineal, buttock skin problems to be bad? I have joked with my oncologists that the medical guy gave me curly hair and the radiation guy just gave me a sore bottom! I finally saw a dermatologist this week who confirmed that part of the problem is cellulitis though my PCP originally said no. But then I saw her in between the worst cycles. Thanks to a poster here who indicated her husband had had a bout with this. Am now on an antibiotic for 2 months and back to see her again.

BTW, I only saw the dermatologist after waiting 6 months for the appointment. I had had some precancerous lesions removed from my face and leg decades ago and have been concerned about how squamous cell works. She found nothing suspicious - thank heavens.

ACW189

dasspears said:

I'm in the same boat....
I'm one year out and have the same issues. I did have surgery to remove a small tumor. My vagina walls narrowed so I'm using estrogen cream and graduated length dilators to stretch them. I also have bowel problems - I have to watch what I eat - raw vegetables are an issue with me. I take Miralax daily for softness & regularity so I don't develop anal fissuers since that wall narrowed also. I'll be happy to swap stories with you.

New anal cancer diagnosis
I've been checking different areas of the discussion board and I'm finding this topic is scattered around. I stumbled across this area. Other discussions going on under "Rare and Other Cancers". I was diagnosed in January with T1 anal canal cancer - squamous cell. No lymph nodes or mets. They excised the lesion along with a hemorroid. I'm scheduled to begin chemo/rad to "mop up" any remaining cells. Would love to hear how you got through treatment and what were the difficult issues. I'm scheduled for 5 12/weeks radiation 5 days per week along with chemo (5FU & MitC) 1st and 4th week. I too have cancer in the family and both my mother and twin sister have had skin cancer (squamous cell). I don't have any of the risk factors either.

ACW189

dasspears said:

Anal squamous cell...
I'm a 13 month survivor!! Fortunately, I had Stage 1, no node involvement. I have met 2 others with the cancer yet none of us have the risks associated with this cancer such as HPV. I wonder if diet is not a factor??

anal squamous cell
Interesting thought. Why diet? What about environment. There's the link to arsenic, but I wasn't sure how anyone would be able to find out if they were exposed...

pjjenkins

ACW189 said:

New anal cancer diagnosis
I've been checking different areas of the discussion board and I'm finding this topic is scattered around. I stumbled across this area. Other discussions going on under "Rare and Other Cancers". I was diagnosed in January with T1 anal canal cancer - squamous cell. No lymph nodes or mets. They excised the lesion along with a hemorroid. I'm scheduled to begin chemo/rad to "mop up" any remaining cells. Would love to hear how you got through treatment and what were the difficult issues. I'm scheduled for 5 12/weeks radiation 5 days per week along with chemo (5FU & MitC) 1st and 4th week. I too have cancer in the family and both my mother and twin sister have had skin cancer (squamous cell). I don't have any of the risk factors either.

Actually, April 6 will be 13 months since last radiation. I had 31 doses of radiation, week long chemo - same - 5FU and mitomyecin. So far, all clear on the cancer front. I am scheduled for PET scan on May 4 and sigmoidoscopy in June and feel quite sure the results will remain good. My biggest remaining problem is the side-effects of radiation. My medical oncologist gave me curly hair but my radiation oncologist gave me a sore bottom!

The treatment itself was not bad in retrospect. I don't know what I would have done without the painkillers and anti-nausea regimens (I lost 30 lbs.) and the incredible TLC of my family and friends. The time flew and by 8 weeks after treatment I traveled to my daughter's 600 miles away. Don't get far from a bathroom though!

I am still thinking long and hard about my fused vaginal walls- reading and posting, etc.
My narrowed bowels make for more frequent BMs but except for occasionally sore hemorhoids, and AFTER lots of diarrhea bouts and occasional constipation, my body and I are cooperating well on this. Not so, however, the skin of my whole pelvic floor and part of my buttocks.

The latest problem developed over the last several months and a long-awaited visit with a dermatologist (six months before she could see me) was well-timed because she could see evidence of cellulitis. I am now hoping that a cycle of burning hot skin, fever, headache is going to end. At first I didn't connect the fever and headache with the burning skin but the last two rounds make it clear. I just thought I was catching every bug that came through this winter.

I am mostly retired working now as a substitute teacher which permits me to turn down jobs when I don't feel good. I thought maybe my immune system was still compromised because I was catching everything- also blamed my young grandchildren for being generous with germs.

Bottom line, I feel good and think I am cancer free but would like more readily available info following radiation treatments like a number of us have had.

dasspears

ACW189 said:

anal squamous cell
Interesting thought. Why diet? What about environment. There's the link to arsenic, but I wasn't sure how anyone would be able to find out if they were exposed...

Why diet?
According to my colorectal surgeon, smoked and cured meats have been linked to colon cancer and could be linked to anal cancer as well. Who knows? I try to eat fresh foods and organic meat/chicken.

annelle

ACW189 said:

New anal cancer diagnosis
I've been checking different areas of the discussion board and I'm finding this topic is scattered around. I stumbled across this area. Other discussions going on under "Rare and Other Cancers". I was diagnosed in January with T1 anal canal cancer - squamous cell. No lymph nodes or mets. They excised the lesion along with a hemorroid. I'm scheduled to begin chemo/rad to "mop up" any remaining cells. Would love to hear how you got through treatment and what were the difficult issues. I'm scheduled for 5 12/weeks radiation 5 days per week along with chemo (5FU & MitC) 1st and 4th week. I too have cancer in the family and both my mother and twin sister have had skin cancer (squamous cell). I don't have any of the risk factors either.

squamous cell anal cancer
I was diagnosed with SC anal cancer in 2005 after a routine colonoscopy. The first oncologist I saw had to look it up in his book (that's how rare it is) and told me my chances without chemo and radiation were only 5% recurrance. He was wrong. I underwent yearly biopsy's and they were all clean. Last spring I was having pain in my abdomen on my left side and diarrhea so i went to my family doc and he ordered a CT scan and the rest is history. My cancer had spread to a lymph 'area' right in front of my spine in my abdomen. I underwent 8 weeks radiation and 3 chemos. I get another PET scan in three weeks and to be honest, am very nervous. I just now looked my diagnosis and turns out I have Stage 4 cancer. My hair is still thinning (started 5 weeks after chemo) but I got some shampoo (Nioxin) that is supposed to help with that. I too, am still fatigued and relived to hear everyone else is too. It took about 8 weeks to get rid of my chemo brain, but I don't feel normal yet. I too take Miralax every night. It helps. Best of luck to all of you out there. Let me know how you're doing.

AJKK

pjjenkins said:

squamous cell carcinoma of the anus
my diagnosis was initially squamous cell carcinoma of the rectum - but the docs argued it was of the anus - in any case I am now a one year survivor and anxious to talk about the after effects of radiation in this area -
in particular, my vagina walls have evidently fused - an obvious problem.
and I have bowel problems with frustrating frequency.
Otherwise, I was lucky not to have surgery.

Detection? Symptoms? Who diagnosed?

Can you please share what symptoms led you to be screened and how your were diagnosed? Worried Mom. Thank you. 

AJKK

pjjenkins said:

squamous cell carcinoma of the anus
my diagnosis was initially squamous cell carcinoma of the rectum - but the docs argued it was of the anus - in any case I am now a one year survivor and anxious to talk about the after effects of radiation in this area -
in particular, my vagina walls have evidently fused - an obvious problem.
and I have bowel problems with frustrating frequency.
Otherwise, I was lucky not to have surgery.

Detection? Symptoms? Who diagnosed?

Can you please share what symptoms led you to be screened and how your were diagnosed? Worried Mom. Thank you

Annabelle41415

AJKK said:

Detection? Symptoms? Who diagnosed?

Can you please share what symptoms led you to be screened and how your were diagnosed? Worried Mom. Thank you. 

Thread

This is a really old thread.  Could you please post a new one to let others help?

Kim

AJKK

Annabelle41415 said:

Thread

This is a really old thread.  Could you please post a new one to let others help?

Kim

Hi not sure if you were

Hi not sure if you were reaching out to me. Brand new to the site and don't know how to start a new thread.

Nana b

pjjenkins said:

anal squamous cell - mitomycin/5fFU
so with diagnosis less than two months apart and the same treatment, we are indeed sisters in this.

What is Diluadid? It does sound as though you had a really tough chemo treatment time!

I feel so glad to find others here as early searches on the internet indicated only about 200-300 people have had this diagnosis since the 1930s! As there are several of us here, I thank God for the electronic age we live in! Most of us must have checked in here at one time or another.

I had some difficulty with anemia and had a couple of transfusions. The treatment center here really focuses on outpatient and since my kids (now 28, 26 and 23) worked out for me to have 24-7 care with their dad, I had wonderful care.

I ended up allergic to something - whether it was the antibiotic they put me on or one of the CA drugs, I hope we will never know! I just remember being sick, sick, sick. Thank God for the painkillers and anti-nausea stuff they have now.

Have you found perineal, buttock skin problems to be bad? I have joked with my oncologists that the medical guy gave me curly hair and the radiation guy just gave me a sore bottom! I finally saw a dermatologist this week who confirmed that part of the problem is cellulitis though my PCP originally said no. But then I saw her in between the worst cycles. Thanks to a poster here who indicated her husband had had a bout with this. Am now on an antibiotic for 2 months and back to see her again.

BTW, I only saw the dermatologist after waiting 6 months for the appointment. I had had some precancerous lesions removed from my face and leg decades ago and have been concerned about how squamous cell works. She found nothing suspicious - thank heavens.

AJKK. Very old post

This post is from 2004,   the person may not even be alive.  To start a new topic, the button is right above the first post on the list. Left hand side  under search and under the words COLORECTAL CANCER. 

 

 

faith4ever1

AJKK said:

Detection? Symptoms? Who diagnosed?

Can you please share what symptoms led you to be screened and how your were diagnosed? Worried Mom. Thank you. 

Yes, I can share.  I was

Yes, I can share.  I was diagnosed with Anal cancer and am 7 months from my last treatment.

 

z

AJKK said:

Detection? Symptoms? Who diagnosed?

Can you please share what symptoms led you to be screened and how your were diagnosed? Worried Mom. Thank you. 

AJKK

There is an anal cancer discussion board all on its own with tons of information.

Cici1gm

z said:

AJKK

There is an anal cancer discussion board all on its own with tons of information.

Anal cancer discussion board

what is the link to the anal cancer discussion board? My 69 year old sister was diagnosed late Jan.  She has had her 2 chemo treatments and 30 radiation treatments.  She also had a severe reaction to the 5 FU which she will NEVER receive 5 FU again. she had her final radiation mid March. She still is having quite a few side effects.  Diarrhea (though not as frequent) but daily, no appetite,  hands shaking tremendously, dizziness, and as she says "my brain isnt making sense".  I have not been able to find much on long term effects of 5FU.  SHE WENT FOR HER first CT scan follow up today and sees oncologist tomorrow for results.  looking for answers and prayers for her. I hope you or someone else that sees this might be of some help THANK YOU!

Trubrit

Cici1gm said:

Anal cancer discussion board

what is the link to the anal cancer discussion board? My 69 year old sister was diagnosed late Jan.  She has had her 2 chemo treatments and 30 radiation treatments.  She also had a severe reaction to the 5 FU which she will NEVER receive 5 FU again. she had her final radiation mid March. She still is having quite a few side effects.  Diarrhea (though not as frequent) but daily, no appetite,  hands shaking tremendously, dizziness, and as she says "my brain isnt making sense".  I have not been able to find much on long term effects of 5FU.  SHE WENT FOR HER first CT scan follow up today and sees oncologist tomorrow for results.  looking for answers and prayers for her. I hope you or someone else that sees this might be of some help THANK YOU!

Links

Anal Cancer forum - http://csn.cancer.org/forum/196

Cancer Society Network forums - http://csn.cancer.org/forum

Cancer Society Network home page http://csn.cancer.org

Good luck to your sister. 

Sue 

greshamlady

pjjenkins said:

Actually, April 6 will be 13 months since last radiation. I had 31 doses of radiation, week long chemo - same - 5FU and mitomyecin. So far, all clear on the cancer front. I am scheduled for PET scan on May 4 and sigmoidoscopy in June and feel quite sure the results will remain good. My biggest remaining problem is the side-effects of radiation. My medical oncologist gave me curly hair but my radiation oncologist gave me a sore bottom!

The treatment itself was not bad in retrospect. I don't know what I would have done without the painkillers and anti-nausea regimens (I lost 30 lbs.) and the incredible TLC of my family and friends. The time flew and by 8 weeks after treatment I traveled to my daughter's 600 miles away. Don't get far from a bathroom though!

I am still thinking long and hard about my fused vaginal walls- reading and posting, etc.
My narrowed bowels make for more frequent BMs but except for occasionally sore hemorhoids, and AFTER lots of diarrhea bouts and occasional constipation, my body and I are cooperating well on this. Not so, however, the skin of my whole pelvic floor and part of my buttocks.

The latest problem developed over the last several months and a long-awaited visit with a dermatologist (six months before she could see me) was well-timed because she could see evidence of cellulitis. I am now hoping that a cycle of burning hot skin, fever, headache is going to end. At first I didn't connect the fever and headache with the burning skin but the last two rounds make it clear. I just thought I was catching every bug that came through this winter.

I am mostly retired working now as a substitute teacher which permits me to turn down jobs when I don't feel good. I thought maybe my immune system was still compromised because I was catching everything- also blamed my young grandchildren for being generous with germs.

Bottom line, I feel good and think I am cancer free but would like more readily available info following radiation treatments like a number of us have had.

My daughter has been

My daughter has been diagnosed with squamous cell carcinoma of the rectum -- 5" tumor, stage 3.  In two days she will be at week 3 of radiation.  She had 5FU infusion for 4 days at the beginning of this and will get 4 more days at the end.  She has already lost 30 pounds and has not appetite.  Did you ever get an appetite?  When did the tumor start to shrink?  Did you require surgery?

 

greshamlady

subu2628 said:

Encouragement - squamous cell rectal cancer
I was diagnosed with the same cancer 5 years ago- it was 5 cm. I was 50 years old and otherwise healthy. I was treated with radiation and chemo and didn't have surgery. So far so good- The longer you go without a reoccurence the more unlikely it will return.

My daughter, age 50, has been

My daughter, age 50, has been diagnosed with this.  She has already lost 30 lbs. and she is just ending her 2nd week of radiation.   No appetite.  Tumor presses on tail bone and causes constant pain even with pain meds.  How did you get through this period?  When did tumor start shrinking?

greshamlady

KathiM said:

4 years post-treatment...
Mine was squamous cell in the first rectal fold. DX was 12/2004. I, too, was told there was no treatment protocol. I had pre-surgical chemotherapy and radiation therapy.

I had my entire rectum removed, as well as my sig colon and a total hysterectomy. I had a 'new' rectum fashioned from descending colon. WHEW! Sounds pretty radical, but today I will match my plumbing up against anyones!!!!! I still watch what I eat, but other than gas from certain foods, I'm great! Cancer free, both on the rectal CA and the subsequent stage II breast cancer, 6 months later.

It was a trial and error situation with the sex. I had MAJOR dryness troubles, add to which I am taking Tamoxifen for the BC. BUT, time healed even that, and as long as I get 'ready' (I'm blushing..lol), sex is once again enjoyable.

Please feel free to e-mail me here...

Kathi

My full sister was dx'ed with rectal/anal cancer 2 years after me. She was treated only with chemo and rads...she is still experiencing some troubles, but she says they are resolving, just like with me....a tincture of time, and some loving patience is the key!

My daughter was diagnosed

My daughter was diagnosed with rectal squamous cell carcinoma and is in the beginning of the chemo/radiatio.  A lot of constant pain even with pain meds and lost 30 pounds.  When did your tumor start to shrink?  Did you lose appetite and if so did you get it back?  Where were you treated?

 

Thanks.