Anal Cancer

duckyann

yodice600 said:

Newly diagnosed Anal Cancer!!
Can anyone help!!!!! I am truly scared to death!! I was diagnosed in October with Stage 2 Squamous Cell Carcinoma (Anal Cancer) after having surgery for what I thought were hemeroids.My horrible surgeon decided to try to be the hero and remove all of the tumor instead of biopsy, he never even mentioned that it could be cancer.So after waiting a week for pathology to come back, it came back bad! But now I had to heal from the trauma he put me through with such extensive surgery! I am about to start Chemo and Radiation this Thursday, Jan.7th. Mitomiacin and 5FU at beginning and end of 33 radiation treatments.I have read everyones horror stories with the vaginal narrowing, incontinence, extreme pain, etc. These are all very scary to me as I dont know how I will react. I am a 40 year old female with 3 children ages 18, 12 & 9. I have already been through a serious health scare 2 years ago. I was diagnosed with a very large skull base tumor. Had surgery and Gamma Radiation and all is well with that, thank god!! It was a benign tumor. If anyone has some words of wisdom for me I would really appreciate it!!
THANK YOU,
SCARED TO DEATH IN NEW JERSEY

Hi yodice600,
I am 7 months
Hi yodice600,

I am 7 months out of treatments for anal cancer. I also was Stage 2 and had 33 radiation treatments along with mitomycin & 5FU 1rst and 5th week of radiation. It is a very rough treatment but doeable. Make sure you take your medications and tell the doctors if anything is bothering you. Go on pain medications if necessary. If there is anything else I can answer for you please let me know.

Jann Landess

yodice600 said:

Newly diagnosed Anal Cancer!!
Can anyone help!!!!! I am truly scared to death!! I was diagnosed in October with Stage 2 Squamous Cell Carcinoma (Anal Cancer) after having surgery for what I thought were hemeroids.My horrible surgeon decided to try to be the hero and remove all of the tumor instead of biopsy, he never even mentioned that it could be cancer.So after waiting a week for pathology to come back, it came back bad! But now I had to heal from the trauma he put me through with such extensive surgery! I am about to start Chemo and Radiation this Thursday, Jan.7th. Mitomiacin and 5FU at beginning and end of 33 radiation treatments.I have read everyones horror stories with the vaginal narrowing, incontinence, extreme pain, etc. These are all very scary to me as I dont know how I will react. I am a 40 year old female with 3 children ages 18, 12 & 9. I have already been through a serious health scare 2 years ago. I was diagnosed with a very large skull base tumor. Had surgery and Gamma Radiation and all is well with that, thank god!! It was a benign tumor. If anyone has some words of wisdom for me I would really appreciate it!!
THANK YOU,
SCARED TO DEATH IN NEW JERSEY

Anal cancer & Alternative Options - Get "KNOCKOUT"
My husband had anal cancer last year and went through all the standard main stream treatment coming out with a clean bill of health in Feb 09.....subsequent to that it has returned only to show up in another part of the anal canal. His only option was for removal of the rectum and anal area (radical surgery) and then would be fitted with a colotomy bag...this was not an option that we choose to pursue at this time...so we have begun our search in the alternative world. There is a ton of info about treatments that CURE and/or help to maintain the cancer status for life as if in manageing diabetes. Be sure and check ALL YOUR OPTIONS because you do have many of them to choose from....

An excellent book to pick up that will get you informed about what your options may be is Suzanne Somers new book, "KNOCKOUT", where she interviews many doctors from all methodologies and wants to educate you and I about what is available and why it is that we are not getting better at cancer solutions. It is a MUST READ if you are at all interest in better health for yourself and those you care about.

If we had to do it all over again - we would have never done chemo and radiation to begin with - we would have looked outside the box for alternatives in the first place.

We are now pursuing a juicing and all raw food diet and are feeling terrific on that regime. We have learned that the cancer cannot live in an alkaline state (8.5 ph and above)...and that cancer loves feeding on the sugars that are in our bodies (acid state)...so our route for now is to drink these great tasting and satisfying juices and eat raw "living foods" until the cancer is gone...then we will continue that path but not quite so strict...Our diet for a healthy and long life will remain one with of lots of fruits and vegatables (at least 80% - 85%) and the other 15% - 20% we will be making the healthy choices as well. (ie: fish and maybe free-range chicken) - and I am sure that an occasional "spurge" every so often cannot not be all bad.

We are also meeting with many doctors who have alternative treatments available...tho we have not chosen one particular direction yet we will be making that decision in the very near future. We feel extremely postive about our new path through all the research we have done, the people we have met who have taken similar routes with great success and through asking for devine guidance through prayer.

My best to you in your quest to find answers that work for you.

Jann Landess

waspcracker said:

Anal Cancer - Treatment Quandry
(I posted this by mistake on the Discussion Board and am re-posting it here. Sorry for the repetition--I'm new to this form of communication.) I'm a 59 yr. old woman, diagnosed with Stage IIIA anal canal cancer in Sept. 2008. The original tumor was the size of a large green olive and was joined to a lymph node that was golf-ball sized. There was spread to a second lymph node (small sized) outside the colon, but no spread to the groin lymph or anywhere else.

I completed treatment (30 days of radiation and 2 cycles of mytomycin & 5-FU) in Dec. 2008. I tolerated the treatment very well until the last week, when I ended up in the hospital for 11 days, neutropenic and with mucositis throughout my GI track, causing persistent watery diarrhea. Add to that the severe radiation burns. Ugh. All told I was out of work for 3 months during treatment. I have an extraordinary employer and tremendous work colleagues; they supported me in every way possible and carried my workload during those months. I am unspeakably grateful. My husband and friends have also been steadfast, full of humor and compassion.

I'm now 4 months post-treatment and feeling great, other than some minor fatigue and vaginal stenosis. I'm back full-time at my demanding but stimulating job. The original tumor is gone, along with the small lymph node outside the colon. The large lymph node is down from a golf ball to a pea-sized nodule that may or may not contain some live cancer cells (the scans showed some activity, but were not definitive.) Therein lies the problem.

I've had all the radiation possible. My medical oncologist recommends 3 more rounds of chemo to blast any possible remaining cancer in the pea-sized lymph node. I went to another medical oncologist for a second opinion since 3 more rounds sounded brutal. That oncologist said absolutely NO, the chemo could (in his words) "blow out my bone marrow." He recommended a tissue biopsy and, if live cancer cells are found, a permanent colostomy. However my surgeon refuses to do a biopsy since he thinks he'll just get fibrous tissue and won't be able to reach the suspicious area.

Now what??? I've decided to go to Sloan-Kettering for a third opinion. I'll be seeing a colorectal surgeon and a medical oncologist. Meanwhile I'm spending days gathering all my medical records to send to Sloan-Kettering. Fortunately my employer and work colleagues remain steadfast and are pulling strings to smooth my way at Sloan.

Has anyone else out there experienced this kind of uncertainty? Has anyone been through Sloan-Kettering? How about colostomies? Apparently my "pea" is attached to my tailbone. If I have a colostomy the tailbone will also have to be removed or resected. Ow. I've never found anyone else who has had anal cancer. Are you out there?

Treatment Options
Dear Waspcracker,

I am new to the site and just posted some info on the routes we are taking for treatment. I just read through the rest of the posts on the site and saw that you have or had the same type of cancer that would require that part of your tailbone be removed along with the rectal/anal area....what did you decide to do and how are you doing today?

When we were given that option just recently and we have opted not to pursue that route until we had fully explored all our other options available...we have done some serious research about alternative methods and had come back with some very positive results.

We are changing our diet to green juicing and raw/living foods and so far are feeling great...we are also going to meet with some alternative doctors (found in Suzanne Somers new book, "Knockout", Interviews with Doctors That are Curing Cancer" - a great one to pick up and read and share with others).

Let me know what route you took and what lead you to that decision.

We were so bombarded with info in the beginning and didn't know which way to go...so we took the safest way, we asked for guidance from above and continued to be lead to these alternate methods which we are still pursuing.

Hope this finds you in great spirits and living a vibrant full life.

My Best and My Blessings to You,

Jann Landess

Jann Landess

ina2525 said:

I am a grateful survivor
Hi,

Three years ago,at age 59, I was diagnosed with early Stage 2 anal cancer. I had been feeling quite fatigued for the previous six months and three months prior to diagnosis, I began to have blood after a bowel movement. I thought it was hemmoroids.

The Gold Standard for treating anal cancer is called the Nigro Protocal (7-8 weeks of pelvic radiation and concurrent chemo, weeks 1 and 4). After the treatments, which were so rough, that towards the end of treatment, I was hospitalized for two weeks, so I could be hydrated, intravenously fed and have low blood counts treated, I had a small anal bump remaining. Both radiation and medical oncologists believed the bump to be scar tissue (all scans were negative), but for good measure, I had the scar tissue removed. It was negative.

I remain cancer free and grateful 24/7 for this miracle. During treatment, another miracle--I stopped cigarette smoking, without any withdrawal symptoms. I was a professional 38 year career smoker! Aside from smoking, my lifestyle had been healthy, but since this daunting experience, I am committed to doing whatever I think I need to do in order to not have a recurrance, or an other type of cancer. To this end, I am trying to digest Paul Pitchford's book, Healing with Whole Foods. He integrates principles of Traditional Chinese Medicine with the modern world. His writings are deep and thought provoking.

I beleive that a wholesome diet and exercise and healthy methods for coping with stress helps repair our immune system (damaged by cancer treatment) and also strenghens our immune system. I had worked out for 12 years prior to diagnosis and since healing from treatment (no mean feat, as many of you know), I've redoubled my gym workouts, learned how to practice yoga and am slowly moving towards a more plant based diet. I continue to take supplements, mostly antioxidents.

Like many who have posted, I have side effects, which I assume are for life: hip joints are stiff (yoga and gym work helps to keep this at bay); mild vaginal stenosis; anal pain on and off and I tend to fatigue easily (compared to my high energy pre-cancer self). However, I do continue to improve in all of these areas and in some ways, have never felt better in my life.

Another useful point of view on cancer (besides Pitchford, above) is in a book called The AntiCancer Diet, by Dr. David Servan-Schreiber. He was briefly mentioned on the TV show Extra! following commentary on Farrah's Story.

Blessings to all of you--those newly diagnosed, in treatment or recovering from treatment. You WILL feel better soon. There is a life after anal cancer. Yes, the treatment is quite difficult, but once I got through it, I felt I could endure most anything.

I was very, very lucky too to have excellant oncologists during and after treatment.

Anti-Cancer Diets
Thanks for the comments on your change of diet and your recommended reading - I will be picking up both books...we are also pursuing the whole living foods plan and doing green juicing as well.

Some of the things that we have found out is that cancer cannot live in an alkaline state...so we are doing all we can to bring the body up to a 8.5 ph until all the cancer is gone (we had a re-occurrence)....and are taking sugars (acid state) out of our diets for now since cancer loves to feed on sugar. After we are through all of this - we will probably go on a 80% raw and 20% other for the rest of our lives...(we have found some great recipes on living whole foods - they taste great, are filling and are very good for the body.

You may want to get the book "Alkalize or Die" (by Broody?)on Amazon - and another great read is Suzanne Somers newest book, "Knockout" Interviews with Doctors Who are Curing Cancer"...where she outlines and interviews with all types of doctors who are using methods in both alternative and conventional therapies for cure and for prevention....a great book for education of what is available to us so that we have choices.

One last thing we have found in our research is the importance of adding plant-based full spectrum enzymes when you get up in the morning on an empty stomach and then also before each meal. Whether you are raw or eating cooked/processed foods - enzymes is the key to a healthy life and body. There is a lot of research on enzymes - I was told about a book by Dr Howell, but have not read or picked it up yet (I have been told the more recent one he has published on enzymes is easier to understand, but there are many others on enzyme therapy, as well).

Hope your life and body is healthy and vibrant and will continue to stay that way,

My Best and My Blessings to You

Jann

hellohello

anal cancer
I'm a 50 year old female with anal cancer - Stage III and the size of a ping pong ball. Have completed 2 weeks of chemo and radiation. I had rectal bleeding one year ago and asked for a colonoscopy. They said because i had a colonoscopy 2 years ago (3 polyps removed) and 3 years before that time (2 polyps) - the dr said it must be hemorrhoids. Now one year later its cancer. What is the real survival rate. I'm terrified.

z810840b

yodice600 said:

Newly diagnosed Anal Cancer!!
Can anyone help!!!!! I am truly scared to death!! I was diagnosed in October with Stage 2 Squamous Cell Carcinoma (Anal Cancer) after having surgery for what I thought were hemeroids.My horrible surgeon decided to try to be the hero and remove all of the tumor instead of biopsy, he never even mentioned that it could be cancer.So after waiting a week for pathology to come back, it came back bad! But now I had to heal from the trauma he put me through with such extensive surgery! I am about to start Chemo and Radiation this Thursday, Jan.7th. Mitomiacin and 5FU at beginning and end of 33 radiation treatments.I have read everyones horror stories with the vaginal narrowing, incontinence, extreme pain, etc. These are all very scary to me as I dont know how I will react. I am a 40 year old female with 3 children ages 18, 12 & 9. I have already been through a serious health scare 2 years ago. I was diagnosed with a very large skull base tumor. Had surgery and Gamma Radiation and all is well with that, thank god!! It was a benign tumor. If anyone has some words of wisdom for me I would really appreciate it!!
THANK YOU,
SCARED TO DEATH IN NEW JERSEY

I know you are scared...and
I know you are scared...and you have a right to be scared.I finished treatment 17months ago and am doing well.I had 31 radiation treatments and two rounds of chemo. Insist on a pic line.It is not necessary to get a port.The worst part of the treatment was the burning and itching.(in vagina and anus)I'm not going to lie...the treatment is brutal.You will be very weak.Drink ALOT of water because you will get dehydrated.When I drank more,I felt better...stronger.Also the water neutralizes your urine in case you have burning.Use the aquaphor religiliously.The skin will break down and it helps.I'm told this is very curable...I pray every day that I am one of the lucky ones.When I used to go for radiation (the whole thing is 40 seconds) I used to try and focus in my mind killing that freaking tumor.Good Luck to you.If you need anything I'm here.

geotina

hellohello said:

anal cancer
I'm a 50 year old female with anal cancer - Stage III and the size of a ping pong ball. Have completed 2 weeks of chemo and radiation. I had rectal bleeding one year ago and asked for a colonoscopy. They said because i had a colonoscopy 2 years ago (3 polyps removed) and 3 years before that time (2 polyps) - the dr said it must be hemorrhoids. Now one year later its cancer. What is the real survival rate. I'm terrified.

New Board
There is a new discussion board directly for "Anal Cancer". It just started 1/25/10. Hopefully, everyone diagnosed with anal cancer will find a home there. Thanks.

teacherofkids

ina2525 said:

I am a grateful survivor
Hi,

Three years ago,at age 59, I was diagnosed with early Stage 2 anal cancer. I had been feeling quite fatigued for the previous six months and three months prior to diagnosis, I began to have blood after a bowel movement. I thought it was hemmoroids.

The Gold Standard for treating anal cancer is called the Nigro Protocal (7-8 weeks of pelvic radiation and concurrent chemo, weeks 1 and 4). After the treatments, which were so rough, that towards the end of treatment, I was hospitalized for two weeks, so I could be hydrated, intravenously fed and have low blood counts treated, I had a small anal bump remaining. Both radiation and medical oncologists believed the bump to be scar tissue (all scans were negative), but for good measure, I had the scar tissue removed. It was negative.

I remain cancer free and grateful 24/7 for this miracle. During treatment, another miracle--I stopped cigarette smoking, without any withdrawal symptoms. I was a professional 38 year career smoker! Aside from smoking, my lifestyle had been healthy, but since this daunting experience, I am committed to doing whatever I think I need to do in order to not have a recurrance, or an other type of cancer. To this end, I am trying to digest Paul Pitchford's book, Healing with Whole Foods. He integrates principles of Traditional Chinese Medicine with the modern world. His writings are deep and thought provoking.

I beleive that a wholesome diet and exercise and healthy methods for coping with stress helps repair our immune system (damaged by cancer treatment) and also strenghens our immune system. I had worked out for 12 years prior to diagnosis and since healing from treatment (no mean feat, as many of you know), I've redoubled my gym workouts, learned how to practice yoga and am slowly moving towards a more plant based diet. I continue to take supplements, mostly antioxidents.

Like many who have posted, I have side effects, which I assume are for life: hip joints are stiff (yoga and gym work helps to keep this at bay); mild vaginal stenosis; anal pain on and off and I tend to fatigue easily (compared to my high energy pre-cancer self). However, I do continue to improve in all of these areas and in some ways, have never felt better in my life.

Another useful point of view on cancer (besides Pitchford, above) is in a book called The AntiCancer Diet, by Dr. David Servan-Schreiber. He was briefly mentioned on the TV show Extra! following commentary on Farrah's Story.

Blessings to all of you--those newly diagnosed, in treatment or recovering from treatment. You WILL feel better soon. There is a life after anal cancer. Yes, the treatment is quite difficult, but once I got through it, I felt I could endure most anything.

I was very, very lucky too to have excellant oncologists during and after treatment.

I am interested in you research on foods. Have you read anything on the effects of wine and anal cancer. I read something about sugars in the wine. What things should I avoid to not have a reoccurance. I will definatly get the book you mentioned. I fear anything I put in my body now. Thanks

BeaRose

anal cancer
I am also a survivor. I finished treatments for third stage tumor at the end of Oct. 2010. I went back to work as a welder, in Feb. Four 8 hr. days for a few weeks, then 4 10's after. I am currently working 50 to 60 hrs a week now. I have been able to slowly resume riding my horse. It is still painful as my groin muscles are very tight but, after a few minutes they loosen up and it gets better. Unfortunately the chemo brain still rears it's ugly head on occasion. I am still having problems with uncontrollable diarrhea, and am awaiting surgery to repair a fistula some time in Sept. My surgeon said to enjoy my summer and let my bottom heal a little more first.

JJCCCC

Sandra C said:

I was off of work for about two months straight and on 1/2 days for about 3 months. I stared working fulltime about 8 months after treatment ended. I couldn't put "loose" clothes on comfortably for several months. I also urge all as someone furtehr up in this chain did, use dilators. I was in absolute shock when I found out what happened to my vaginal canal, I too feel as if I will never be the same in that area of my body.
MY STORY:
I too was diagnosed with squamous cell carcinoma of the ananl canal in January 2008, having 25 radiation treatments and a port installed for two weeks of chemo (5fu and mytocin?)The small tumor was caught very early (I noticed a consistent small groove in my stools, with no other symptoms) It was surgically removed with clean margins then I underwent rad and chemo. I was told by doing this they could assure me 99% that the cancer would not return. Got really, really sick lost all hair, about 30 lbs, and ended up in hospital with neutropenia for about 4 days. Not to mention the brutal radiation in both front and rear areas of the pelvic region which resulted in badly burned skin, infection throughout the entire time of illness, and wound management afterwards for about 3-4 months. I too had bad radiation proctitis, stil have but it is slowly diminishing, along with early menopause, terrible hot flashes, and inability to have sexual relationships because internally everything narrowed, I cannot even get an internal exam. I have been going to a physical therapist who specializes in this type of therapy, it is slowly, very slowly getting better with progressive dilation that I must do daily along with Estradiol inserted vaginally 2x's weekly. I am very thankful for early detection, but feel as if there was a lot that I did not know about as far as the effects to my body. Maybe I am an anomaly as my radiation oncologist reminded me frequently that the effects that I have had simply do not happen from the treatment that I had, even my hair falling out seemed odd to them. I complained throughout the entire treatment of terrible itching in my vaginal area, couldn't even sleep, it was terrible. Finally I had to ask for a culture in which they found an infection and further I had to ask to be referred to a wound specialist (for a large wound on my labia), a gynecologist, and ask about dilation. None of this was offered. I felt as if I was hung out to fend for myself. Also, they turned me loose following treatment completion and said only that I need to be followed by someone for five years, this was after I asked, it was not offered. Have others experinced the same?

Narrowing canal
Sandra, I was so glad to read your post this evening. I needed it!!!
I completed my treatments a year ago - October 11, 2011. I had 6 weeks of treatment -- 2, 96 hours of chemo in the hospital, the 1st and 5th week and 30 radiation treatments, 5 days a week. The Drs added 10 more radiation treatments focused on the left side because of spot that was found in a lymph nod. During the last weeks of my treatment, I too had terrible iching and burning in my private areas. Most nights,I was up at 2 soaking in an oatmeal bath to help sooth. I never felt like I got a lot support from the radiation oncologist - it didn't help there were 3 different Drs there during my treatment. They never told me of what side effects I may experience after treatment - I too was surprised to find my vaginal canal had narrowed and the left side had fused.
I went to a Gynecologic and Reconstructive surgeon --- today I had perinroplasty done - an out patient surgery. the purpose was to stretch and enlarge my canal. Now -- the wait to see if it was successful. If it was not, he suggests a surgery that he will graph skin into my vagina........not really convinced that I want to do that. I wished I had known I may be able to get help from a physical therapist. I now know I can check into the therapy next. How are you doing now?
I have had 2 clear biopsys and a clear pet scan done in the last year. I have a cat scan and chest x-ray scheduled for November. This has all been scheduled through my oncologist. He has been wonderful!!!
Any suggestions for my next step??

nlada

Anal cancer long term
Hello everyone! I'm probably a grandmother to everyone here fighting anal cancer. I was diagnoised in '99 with stage two bordering on stage 3. In those days it was almost impossible to find information online about this cancer. Mine was squamous cell carinoma and I was supposed to have to courses of chemo of 5 FU and Mitomyicin C along with 28 external radiation treatments with the possibility of several extra boosters at the end. Things did not go well. I developed problems which caused them to suspend treatment while I healed and then the decision was made not to do the second course of chemo because " the benefit I would get from it would not outweigh the risk" I finished up my radiation and received 5 boosters directly to the spot where the tumor had been. The long and short of it was I was clear of the cancer but soon realized that a lot of radiation damage had been done to my intestines, rectal, anal and pelvic tissue. I had diarreha 24/7 and fecal incontinance. After trying many medications was put on codiene and lomotil. This controlled the problems about 80% and gave me some life back. It was an uneasy truce till 3 years ago. At that time I developed an open ulcerate would in my pelvic region. It turned out that along with damage to the skin there, my pubic bone had received radiation damage too and had developed osteomylitis(bone infection). I ended up having two major painful surgery to clean everything up and then to move a flap of skin and muscle from my abdomen to the pelvic area to replace what they had to remove. I learned the hard why it is not also over with. In the last few months my already damaged anal tissue has been getting worse and I have now developed an ulcerated would at the anal verge.I'm waiting for the results of a biopsy.Thank your lucky stars that you didn't get this back then when they knew so little about it.

GypsyLaura

nlada said:

Anal cancer long term
Hello everyone! I'm probably a grandmother to everyone here fighting anal cancer. I was diagnoised in '99 with stage two bordering on stage 3. In those days it was almost impossible to find information online about this cancer. Mine was squamous cell carinoma and I was supposed to have to courses of chemo of 5 FU and Mitomyicin C along with 28 external radiation treatments with the possibility of several extra boosters at the end. Things did not go well. I developed problems which caused them to suspend treatment while I healed and then the decision was made not to do the second course of chemo because " the benefit I would get from it would not outweigh the risk" I finished up my radiation and received 5 boosters directly to the spot where the tumor had been. The long and short of it was I was clear of the cancer but soon realized that a lot of radiation damage had been done to my intestines, rectal, anal and pelvic tissue. I had diarreha 24/7 and fecal incontinance. After trying many medications was put on codiene and lomotil. This controlled the problems about 80% and gave me some life back. It was an uneasy truce till 3 years ago. At that time I developed an open ulcerate would in my pelvic region. It turned out that along with damage to the skin there, my pubic bone had received radiation damage too and had developed osteomylitis(bone infection). I ended up having two major painful surgery to clean everything up and then to move a flap of skin and muscle from my abdomen to the pelvic area to replace what they had to remove. I learned the hard why it is not also over with. In the last few months my already damaged anal tissue has been getting worse and I have now developed an ulcerated would at the anal verge.I'm waiting for the results of a biopsy.Thank your lucky stars that you didn't get this back then when they knew so little about it.

Surgery/Chemo/Radiation 1998
I am so glad I found this site. I have never been properly followed up and am experiencing numerous problems now. I was never told of side effects or what to expect since I had stage 3 with lymph node invasion. I think they really believed what they told me (30 % chance of making it 3 years). My rectum (or where it once was) is burning and hurting so bad. My bladder always feels on fire. Every one I have gone to doesn't know who to send me to. My feet are swollen and sore and now walking is getting harder. If anyone can tell me who to see to do follow up I would love it.

GypsyLaura

hellohello said:

anal cancer
I'm a 50 year old female with anal cancer - Stage III and the size of a ping pong ball. Have completed 2 weeks of chemo and radiation. I had rectal bleeding one year ago and asked for a colonoscopy. They said because i had a colonoscopy 2 years ago (3 polyps removed) and 3 years before that time (2 polyps) - the dr said it must be hemorrhoids. Now one year later its cancer. What is the real survival rate. I'm terrified.

Oh My
I am 52. I was told I had a hemmorrhoids for over a year and told I was making a big deal out of it. I went for a second opinion after a year of going to this internist and told I had rectal cancer, stage 3 with lymph node invasion and I had to have a colostomy with chemo being used everyday for 9 months and radiation for 6 weeks.
Sounds like we were both misdiagnosed.
Please do not listen to survival rate. I was given 30% chance of making it three years. That was in 1998.
A big hug from me to you. Kick its butt hon!

skmonty

Jann Landess said:

Treatment Options
Dear Waspcracker,

I am new to the site and just posted some info on the routes we are taking for treatment. I just read through the rest of the posts on the site and saw that you have or had the same type of cancer that would require that part of your tailbone be removed along with the rectal/anal area....what did you decide to do and how are you doing today?

When we were given that option just recently and we have opted not to pursue that route until we had fully explored all our other options available...we have done some serious research about alternative methods and had come back with some very positive results.

We are changing our diet to green juicing and raw/living foods and so far are feeling great...we are also going to meet with some alternative doctors (found in Suzanne Somers new book, "Knockout", Interviews with Doctors That are Curing Cancer" - a great one to pick up and read and share with others).

Let me know what route you took and what lead you to that decision.

We were so bombarded with info in the beginning and didn't know which way to go...so we took the safest way, we asked for guidance from above and continued to be lead to these alternate methods which we are still pursuing.

Hope this finds you in great spirits and living a vibrant full life.

My Best and My Blessings to You,

Jann Landess

I am 7 years out of

I am 7 years out of treatment.     I am having problems with my bladder.  due to radiation they say.  Just started to greem juice this weekend.   Never to late.   Have y

Lorikat

skmonty said:

I am 7 years out of

I am 7 years out of treatment.     I am having problems with my bladder.  due to radiation they say.  Just started to greem juice this weekend.   Never to late.   Have y

Hi!  Would you please start a

Hi!  Would you please start a new thread?  This one is really old!  Thanks

 

patrice58

lizdeli said:

was diagonised with 2.6 cm
was diagonised with 2.6 cm tumor on my anus and PT and CT scan showed a faint spot on the rectal lymph node. I went to MD Anderson Cancer Center in Houston and spent 7 weeks there being treated with 27 radiation treatments, chemo pack via cathither in my arm M - F and weekly IV treatment of cisplatin. Tomorrow will be one week that we've been home. I was prepared for the worse regarding the treatments. All in all it wasn't terrible. I didn't vomit at all. Had some days when I was very queasy and some days when everything I ate stayed in me for a 15 minutes max. Then I listened to the doctors and took the medicine to control the diaherria. It was better from that point. The radiation got tough toward the end and I came home pretty fried.

But, I am healing rather quickly. Still tired at times, a headache at night. But despite what I expected my bowel movements are almost back to normal. I did have a couple of weeks with an agonizing itch - worse than any other symptom and not much that could be done about it. That too has subsided.

For all of us with anal cancer - we are fortunate we have this type if we have to have a cancer. It is a curable cancer and as most of you know, the chemo/radiation ususally takes care of it. The reoccurrence rate is not high. I thank God everyday for that. To be told we have a curable cancer is a gift.

My doctors at MD Anderson are awesome. Anal cancer is rare and when I was first diagonosed in Denver, I was told it was rectal cancer. When I got to MD Anderson, they ran their own tests and it came back as sqaumous cell anal - per my onologist "that's good news". She sees a few cases a week of this type of cancer. Other doctors see, if they do at all, a few cases in their careers. I will be going back in Dec for my tests to see how well the treatment worked. Both my onocologist and radioligist were very optimistic that we will beat it.

So for any newbies going through this, once the shock wears off, please know that we are in a much better position than many others who are battling more difficult forms of cancer.

Good doctors, much prayer and a strong will to overcome the treatment after affects and my will to beat this. That is my recipe.

Please email me if you have any questions of if I can help in anyway.

MD Anderson

Hi,

I've been newly diagnosed  with anal cancer as of 9/26l I wondered if your insurance  paid for you to go to MD Anderson. I live in Ca. and I'm not sure where the best treatement centers are here. I know that it's important to have a great medical team. I'm overwhelmed by all of the side effects people are talking about, however I can see that it's different for each person. Thanks for sharing your story.

Patti

mp327

patrice58 said:

MD Anderson

Hi,

I've been newly diagnosed  with anal cancer as of 9/26l I wondered if your insurance  paid for you to go to MD Anderson. I live in Ca. and I'm not sure where the best treatement centers are here. I know that it's important to have a great medical team. I'm overwhelmed by all of the side effects people are talking about, however I can see that it's different for each person. Thanks for sharing your story.

Patti

Patti

I think we've met on another site, but I'm glad you have found this one too--there's great support here.  As for the best treatment centers, I would say that MDA is right up there.  Also, Memorial Sloan Kettering in New York City and University of California/San Francisco.  Since you are in California, I would urge you to check out their website and search for anal cancer.  There are some top-notch physicians there, one being Dr. Berry.  I know 3 people who have had him as their physician and all sing his praises.  Dr. Joel Palefsky is also located there and is a specialist in the treatment of anal cancer.  They have a very good team there, so it's worth checking out.  I have provided a link to their website for you.

http://id.medicine.ucsf.edu/analcancerinfo/

As for side effects, there can be many or few, depending on the individual.  Collectively, those of us on this site have probably experienced all of them.  Therefore, if you have questions about specific side effects, please ask--someone has most likely dealt with them.  We are here to help you and nothing is off limits that pertains to anal cancer, so just ask.  This site is a valuable resource that I wish I had had access to when I was undergoing treatment.  I realize how much easier my treatment time would have been if I had been able to speak with others who had already been through it.

I hope you'll keep us posted as things progress towards the start of your treatment.  I wish you all the very best.  You will get through this!

sandysp

patrice58 said:

MD Anderson

Hi,

I've been newly diagnosed  with anal cancer as of 9/26l I wondered if your insurance  paid for you to go to MD Anderson. I live in Ca. and I'm not sure where the best treatement centers are here. I know that it's important to have a great medical team. I'm overwhelmed by all of the side effects people are talking about, however I can see that it's different for each person. Thanks for sharing your story.

Patti

Go for it

Contrary to popular belief, most insurance companies are happy to pay for the hospitals with the best outcomes.

M. D. Anderson would be a great choice for you.

Don't worry about the side affects right now. The worst of them are much better than the cancer, which you should really try to get the best practicioners in the country to work on. It's such a rare cancer. It pays to go somewhere where they see it from all over the country and even the world.

I so hope you can pull off.

Maybe other people can tell you a good cancer center near you in California, but still, if I were you, I'd sell stuff to go to Texas if I had to.

Good luck and please keep us posted.

Sincerely,

Sandy

 

 

 

sandysp

Two years post tx

Congratulations on finishing treatment.

For me it took a long time to get beyond pain and fatigue, at least it seemed so at the time.

I am two years post tx and beginning to feel better than I have in many years, even though I have had set backs.

Try to keep moving. IT really helps and when you aren't moving, try to catch up on good resting. I've been resting and exercising more than anything else this year and I am thinking how lucky I feel to be able to move so much better than a year ago.

Good luck. I am 63 and feel like I am 40 from keeping fit now matter what.

Sincerely,

Sandy

 

kihonkumite

lisavaughan said:

Squamous Cell Anal Cancer (Farrah's Disease)
They don't work if scar tissue is too severe. I had 42 rounds of radiation to melt a tennis ball size tumor in my anus plus 3 rounds of chemo (carried a bag w/pump for five consecutive days each time). Radiation destroyed my anus/rectum and vagina beyond repair. I now have a permanent colostomy. At stage 3....the treatments will ultimately leave you damaged. The radiation also caused my colon and upper intestines to fuse together causing a blockage which resulted in gangrene. Surgery to remove part of both. Almost killed me. Wish my gyno would have caught it years earlier. Surgeon estimated it had been growing for about 5 years. Treatment put me in post menopause and I'm now being treated for severe osteoporosis. Destroyed my teeth also.

Cancer free after 3 years but still feeling the effects of my treatment. Otherwise I feel great. BTW....I was diagnosed at age 39. Never had anal sex but my husband did have anal warts when he was 19 while serving in the Marine Corps. He had surgery and was told he'd have the disease forever. Later he discovered the immune system usually wipes it out in about 5 years. He was married to his first wife for 10 years. They married at 19 and divorced 10 years later. She's now 49 and never been sick a day in her life. Go figure!

Your post Farrah's Disease

I was just diagnosed with this. I have another dr. appointment in a few days to see what they have to say, it's at Sloan. However, 2 dr.'s that a I trust said that my rectum will have to be removed and I will have to have a colostomy bag forever. I'm 61 and not at all ready for this diagnosis. One dr. said radiation/chemo won't work for me as it's in a diffiuclt spot.

Any insight?

Thanks so much.

Diane