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Anal squamous cell - why no research?

desertdreamer
Posts: 12
Joined: Dec 2004

I am told this cancer of mine is rare so there is no standard of care to treat it d/t no research on it. I am interrested in just how many of us are out there. Couldn't we start and movement, like breast cancer patients did, to get the research going? I believe there are allot of us but we are suffering silently. I'd like to hear from all with this "rare cancer" and see just what might be accomplished

AuthorUnknown
Posts: 1563
Joined: May 2006

When I enter "squamous cell carcinoma of the anus" into the Good search engine, I come up with 11,900 results! So, there must be quite a few of you out there. There are clinical trials in those results. I did not see any support groups in the results though. I run a website and support group for all rare cancers and I have not had anyone contact me with this cancer. So, you must be rare. If you go here:
http://www.nci.nih.gov/cancertopics/pdq/treatment/anal/patient, you will find several menu items to the left and the contents of the page for some general info.

michel
Posts: 4
Joined: Sep 2003

Hi. There has to be some research because I am in a type 3 clinical trial in California. As of this April(20005) will be 2 years since I finished treatment. Yes it is rare, but there seem to be more and more of us. When I was diagnosed in Dec of 2002 the was no one out the to email.

tfussell
Posts: 1
Joined: Aug 2005

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?

pjjenkins's picture
pjjenkins
Posts: 173
Joined: Mar 2009

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.

dasspears
Posts: 233
Joined: Feb 2009

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.

pjjenkins's picture
pjjenkins
Posts: 173
Joined: Mar 2009

I joke about having a skin cancer where the sun don't shine because of how often I mooned the world.

If I might be so bold as to ask, how long after your treatment did you wait to have sex? My partner was really put off by the sunburned appearance so we didn't try for months. I am afraid it is too late for me to use dilators, etc.

ACW189
Posts: 24
Joined: Feb 2009

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.

pjjenkins's picture
pjjenkins
Posts: 173
Joined: Mar 2009

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.

annelle
Posts: 1
Joined: Aug 2009

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
Posts: 5
Joined: Aug 2014

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

Annabelle41415's picture
Annabelle41415
Posts: 4358
Joined: Feb 2009

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

Kim

AJKK
Posts: 5
Joined: Aug 2014

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. :(

faith4ever1
Posts: 2
Joined: Aug 2014

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

 

z's picture
z
Posts: 1267
Joined: May 2009

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

AJKK
Posts: 5
Joined: Aug 2014

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

subu2628
Posts: 1
Joined: Mar 2009

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.

Sueberger
Posts: 3
Joined: Sep 2003

I absolutely do not understand this disease. My husband (now 42 years old) started a few years with another disease called Hydranitis Supportiva. After numerous surgeries and the doctors leaving open wounds, it then developed into anal cancer. He has been fighting cancer for the past year and half. On December 14 2004 we were then told it was terminal. Yes, we were told the same thing - it is a rare disease, both of the diseases he had. I am only 38 years old and have two young children. I don't understand why this type of cancer is not studied further. May God Bless You!

Jaelithe
Posts: 1
Joined: Feb 2005

I recently had a wide excision for squamous cell cancer of the vulva and perineum - I am waiting for a biopsy for Anal Intraepitheial Neoplasia as the vulval cancer was so close to my anus I want it checking out. Over here in the UK they say my cancer is rare too but is becoming more common and is related to HPV infection. I think it is not becoming more common, it's becoming more diagnosed. No-one wants to talk about cancers in these areas....I am very confused and have to push every step of the way ....they told me I got to wait 6 months for a biopsy!!!!!!!
Anyway a little rant from a new kid on the block

Andy5
Posts: 18
Joined: Oct 2004

You should not wait 6 months for a biopsy. What kind of treatment are they giving you? Standard is cisplatin, 5FU and radiation for vulva cancer which could also be same for anal cancer. Ask your doctor for a clincial trial search the website for your type of cancer. I don't still understand how to communicate with CSN cancer patients with CSN e-mails so I am very frustrated in sharing my knowledge of a very rare cancer. Even frequent users of CSN post messages don't understand how to use the CSN e-mails. I've given my own personal e-mail but CSN tells me not too. I'm frustrated. Be aggressive and pro-active in your treatement. I am a 31 months survivor of anal canal cancer IIIA, Grade 4 positive nodes. But secondary cancers and reoccurances are reality. HPV is the main causes of these cancers, vulva, anal, cervic, head/throat. Andrea "Andy"

AuthorUnknown
Posts: 1563
Joined: May 2006

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dasspears
Posts: 233
Joined: Feb 2009

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??

pjjenkins's picture
pjjenkins
Posts: 173
Joined: Mar 2009

I joke about having a skin cancer where the sun don't shine because of how often I mooned the world.

I had a vaginal wart for going on 25 years. No one told me it was HPV but now I suspect so and wished I hadn't told my doctor that I didn't want him to remove it because my partner and I didn't care. I don't think they knew then what they know now and that I probably should have had it removed. It did "dissolve" with the radiation so is now gone.

But I also have a mate who loves his steak and though I often have chicken instead, I am sure I have been way too much into red meats. I certainly also have weight and diet risks.

ACW189
Posts: 24
Joined: Feb 2009

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...

dasspears
Posts: 233
Joined: Feb 2009

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.

Andy5
Posts: 18
Joined: Oct 2004

Jaelithe from the UK There are clinical trial sites at the Kobler Centre and St Stephen's Centre, Chelsea and Westminster Hospital, 369 Fulham Road, London SW10 9TH
Phone: 020 8846 6504 Contact Jonathon Samuel
Ask him why you have to wait 6 months for a biopsy for your anal neoplasis discoverd when you had vulva cancer surgery.

Good luck!

ele
Posts: 6
Joined: Mar 2005

I was told in July 2004 after walking around for a few months with a tumor. I had surgury to have tumor removed and was told in recovery room I had cancer. Like you I lookde for answers but found very few. I had 2 rounds of chemo and 8 weels of radiation. I am still dealing with side effects,which somedays makes me a prisoner in my own home somedays. I think that ACS needs to help us with this rare form of cancer connect and have a movement. Because like breast cancer and colon cancer victums and survivors have little or no support. Here I am 4 months after treatment feeling lost, scared, and angry. And no one to talk to about my feelings. If my cancer had not been caught when it was I would have lost alot more then a tumor.

pjjenkins's picture
pjjenkins
Posts: 173
Joined: Mar 2009

I am now a one year survivor of this and had two rounds of chemo and radiation - if you are still in touch here, I would like to share some info.
PJ

dasspears
Posts: 233
Joined: Feb 2009

I'm 13 months out and it does get better - usually around the 6th month.

pjjenkins's picture
pjjenkins
Posts: 173
Joined: Mar 2009

I was diagnosed Dec. 2007 with squamous cell carcinoma of the rectum. The docs argued that it was "of the anus" though it crossed the dentate line. This led to treatment for squamous cell carcinoma of the anus with radiation and chemo but no surgery.

I think I am okay but am experiencing some problems I think are due to pelvic radiation.

Any of you still on this site?

KathiM's picture
KathiM
Posts: 7913
Joined: Aug 2005

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!

pjjenkins's picture
pjjenkins
Posts: 173
Joined: Mar 2009

My hats off to those who have subsequent CA - I haven't any - at least not yet.

Re post radiation sex, I think my problem came from partner who wasn't able to face the hairless sunburn I had "there" for months and when we tried, there was a blockage. I was due for a follow-up in a month and a half and now find there is total blockage and my ob-gyn doesn't want to do anything. I suspect it would be significant surgery and "reconstruction" and probably, because I am not young and a grandmother, that it would be considered "elective". I feel like the counterpart of guys with prostate surgery. But I wonder if anyone else has encountered this problem.

Re bowel problems, I find I have cyclical bouts with diarrhea - every 4-6 weeks or so. I kinda assume it some sort of internal healing cycle. It does seem to be decreasing in level of difficulty. Other than I try to be sure to have fresh fruits and veggies everyday and keep red meats to a minimum (not gone, however), I don't really watch my diet much. I also pretty regularly use Metamucil, Citrucel or a generic - though I am in a lapsed phase of this now. Struggling with winter doldrums! -That's my "excuse". (I am in Maine)

KathiM's picture
KathiM
Posts: 7913
Joined: Aug 2005

so might be your surgery....it was, after all, a direct result of cancer...ask your doctor to put in for it!!!!

Good for you on the diet! Sort of like babies, our systems have to be retrained, and some things just aren't worth the discomfort that comes later in the evening! I still 'sin' with some things (I LOVE cheese, for instance, and I am now lactose intollerant), but I do it in moderation and realize there will be the piper to pay. I enjoy EVERY bite!!!!

Hydration is a BIG factor on how well things go. This from my sister, as well. I drink Propel, which has the added plus of the B-complex vitamins, which are mood stabilizers.

The biggest resolver is time. Unfortunately, unlike with many other cancers, colorectal involves the most tricky part of our system...and one we use every day! And the bowel HATES to be disturbed in any way!!!

Wow! Maine!!! You guys are getting your share of 'winter weather'!!! I went to Holland for Christmas, and it was cold and icy...I skated on the canal out in front of the house...but, being a Southern California resident, I don't think I'd be able to handle it long-term....I'm a lizard at heart!

It sounds like you are doing it right. Fresh fruits and vegies, low red meats. I enjoy a 6 or so oz steak per 2 weeks...

Hugs, Kathi

momacork
Posts: 3
Joined: Mar 2009

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.

pjjenkins's picture
pjjenkins
Posts: 173
Joined: Mar 2009

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.

Nana b's picture
Nana b
Posts: 3015
Joined: May 2009

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. 

 

 

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