Anal squamous cell - why no research?
Comments
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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.0 -
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.0
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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!0
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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 block0 -
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"Jaelithe said: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 block0 -
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!0 -
Dear Andy,Andy5 said: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"
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Dana
CSN Dana0 -
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.0
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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.michel said: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.
Any words of encouragment?0 -
squamous cell carcinoma of the anusele said: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.
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.
PJ0 -
squamous cell carcinoma of the anustfussell 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?
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.0 -
anal squamous cell - rectal squamous cell - anyone still around?
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?0 -
I'm in the same boat....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.
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.0 -
Anal squamous cell...Andy5 said: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"
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??0 -
Effects.....ele said: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.
I'm 13 months out and it does get better - usually around the 6th month.0 -
4 years post-treatment...pjjenkins said:anal squamous cell - rectal squamous cell - anyone still around?
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?
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!0 -
1 Year Post TreatmentKathiM 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 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)0 -
HPV or diet or???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??
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.0 -
skin cancer where the sun don't shinedasspears 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.
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.0 -
It bears checking...breast reconstruction is covered....pjjenkins said:1 Year Post Treatment
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)
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, Kathi0
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