Anal Cancer

Me too Chris
I am an anal cancer survivor. Was treated at Memorial Sloan Kettering in NYC with 28 radiation treatments plus chemo. In Dec. the surgeon examined me and found only scar tissue so I think I have beaten it! How are you doing. Are your burns healed yet? I also still need naps and have some chemo brain stuff still.

Chrisluvsfairies said:

Pain in the behind
Hi Yes my burns have healed pretty well. I just pray that all of the cells got "nuked" so it wont come back. I had two rounds of Chemo (first one was hospitalized for the five days) the second round I had a portable pack of 5FU. That stuff made me nauseous to the point that I lost 25 pounds. I had 32 radiation treatments with a one week break as the burns were getting too bad. I did use pain killers that did help me.
I kept going to the Dr with hemorrhoids but it got so painful that I knew something was wrong. The surgeon did a colonoscopy and found the cancer. I was diagnosed in July 08. I am 49 years old and told myself in the beginning That I would do my best to keep on leading a normal life. I am back to work full time and pray that I will feel normal soon. yes this has been a pain in the butt! How old are you? Wasn't this embarrassing? So many Docs checking out my behind!

Just diagnosed with anal cancer -- help?
I am 54 year female. Had hemorroids but never issue for me until recently. Routine colonoscopy found T1-T2 anal cancer. Just in the beginning stage of labs, tests and medical appointments. No risk factor connection -- I'm just lucky, I guess. Anxious about the treatment and what is typical for most AC survivors. I'm told I will start 5 1/2 weeks radiation 5 days/week along with chemo 1st and 4th weeks. Lots of questions. First, tell me honestly what were your side effects ---how bad did it get? Were you able to work through the entire treatment or when did you stop working? More later...

ACW189 said:

Just diagnosed with anal cancer -- help?
I am 54 year female. Had hemorroids but never issue for me until recently. Routine colonoscopy found T1-T2 anal cancer. Just in the beginning stage of labs, tests and medical appointments. No risk factor connection -- I'm just lucky, I guess. Anxious about the treatment and what is typical for most AC survivors. I'm told I will start 5 1/2 weeks radiation 5 days/week along with chemo 1st and 4th weeks. Lots of questions. First, tell me honestly what were your side effects ---how bad did it get? Were you able to work through the entire treatment or when did you stop working? More later...

I had anal cancer
I am a 54 year old female - diagnosed with anal cancer in November 2007. As of tomorrow, I will be one year out of treatment and cancer free. I was lucky in that my cancer was caught eary - did have a tumor less than 2.5 cm and that was removed. Had 2 rounds of chemo - one before radiation began and the last round during the last week of radiation. I had 6 weeks of radiation. My chemo treatments were 5FU for 96 hours using a pump then 4 days of cistoplatin. My hair thinned considerably and I just shaved my head so it would all grow back in at the same time - the Beetlejuice look just didn't suit me.

Worst part for me was radiation! The nausea from chemo was controlled really well. If you follow the radiation technician's suggestions regarding using lotion, etc., it goes better. But you will still be burned and in pain so take the pain meds - helps with the healing process. It took me about 5 months for things to "turn around" - had problems with diarrhea, some control issues. I hated the fatigue part because I tend to be a high-energy person. Also had chemo brain for about 6 months.

It's been a year and I am 90% healed - have occasional bout of diarrhea for no reason and sometimes I get tired if I overdo it. I did have problems with my red blood count coming back up due to damage to my bone marrow from radiation. I tend to be anemic but that really took a toll. During treatment, I did have 2 transfusions and 3 rounds of epogen shots.

If you have ANY questions - let me know. I'm happy to be a supportive ear!

tiny one said:

colon cancer
I was diagnosed with stage 3 colon cancer Feb 1,07. I had had blood in my stool and sometimes pain when I would have BM's for at least 8 years. A colonoscopy found a polyp. I had a resection, and temporary ileostomy. I went thru 5 1/2weeks of chemo and radiation. I had a pump so chemo for that 5 1/2 weeks, was 24/7. I received 5FU. Then I received 6 months of chemo twice a month. They would do chemo on Monday then hook up the pump and 2 days later I would be unhooked. This chemo drug was oxiplatin. Treatment was pretty easy on me. Side effects were minimal fatique, a little nausea, minimal neuropathy in hands and feet. Hair thinning, alot of senstivity to cold. Not many skin issues from radiation until later. I had reversal done Dec 07. The reversal was a lot rougher than the cancer treatment. I am cancer free, last chemo was Oct 31st of 07. Radiation I wish I would never had done. I have shortening in the vaginal area and narrowing in the rectal area. There is scar tissue which makes sex painful if not possible. The reversal leaves me with frequent bathroom issues and alot of soreness. This is they think due to radiation. I didn't work and am retired. I am 50 years old.

radiation
The radiation caused narrowing in the vaginal area and rectal area also. Did your doctor talk with you about graduated size dilators? They do help. I finished treatment 2/08 and still have some bowel issues depending upon what I eat.

I to just finished treatment
I to just finished treatment stage 1 squamous cell carcinoma of the anal. Five weeks radiation first and last 5fu and mito. Still waiting for recheck go to onco tomorrow. My thoughts and prayers are with everyone on here.. I am three weeks out of treatment. Was way sick a week ago could not even think of feeling like I am now. Feel better everyday. Somewhat getting back to normal. Some stomach pain and bathroom bouts, pain but so much better than a week ago. I will post more after seeing onco tomorrow. All of my thanks and love to everyone.

wje630 said:

Anal Cancer Survivor
Hello:

I am so glad to find that more people are posting on this site. You are right, there is not much information regarding Anal cancer and what you can expect from treatment.
I was diagnosed in March, 2005. The cancer was Stage II and the chemo onocologist decided that I would do allright with just the radiation therapy. I had 7 weeks of radiation treatment with a week off toward the end to let my skin rest. I had a hard time with the soreness, they did radiation both in my pelvic area(to treat the lymph nodes just in case) and of course, in the rear. I never thought I would get tatoos, but in this case, I had no choice.

My biggest problem after treatments has been the vaginal narrowing and scar tissue. My OB/GYN did surgery to remove some of the scar tissue as I was so small, I couldn't have intercourse without a lot of pain. My radiation onocologist was not happy with me for having the surgery. He felt it was too soon after my treatments and he said my OB/GYN should have checked with him before doing the surgery. Oh well, it was too late by then. Anyway, it did help some,but it is still painful. My radiation onocologist told me I would probably always have this problem. We use plenty of lubrication and I did buy a set of the dialators, but I know I will never be back to my old self, sexually. I guess it's a small price to pay for hopefully getting rid of the cancer forever.

I used to have the CAT scan every 6 months, but since my last one in March 2007, I only have it every year now. In fact, today I went in for my yearly scan. Won't know the results until next week, but feel very optimistic.

If I were to give you all any advice it would be to insist to your doctor to prescribe the dialators for you and even though it is painful, use them regularly to prevent this afteraffect. Of course you will have to heal somewhat, but if you are able and your doctor says it is OK, just have sex a couple of times a week, you might not enjoy yourself, but in the long run you and your partner will benefit from it.

I sincerely wish you all a speedy recovery and remember, there are those of us who know just how you feel, so please ask questions, read all you can on the subject, and talk openly to your doctors about your fears.

Best of luck and God bless.

Anal cancer
It has been alittle over a year since my treatment and I am so tired still and I still feel depressed because I have no energy. I work 4 days a week, 10 hrs a day and I know that gets me down but I have to work. I am having pressure high up now,,not at the rectum like I first noticed, but up within if that makes any sense. It comes and goes, the longest being 3 weeks everyday. My last MRI was good and today I go for a colonoscopy. My Dr told me that the test was necessary every 3 yrs when you have had anal cancer. I am 54 yrs. old and feel as though I am 80. Does anyone feel this way?

dasspears said:

Anal Cancer
Yes, Vickie55 - I do. I am 54 - I finished treatment 2.25.08 and I am also tired. I work 5 days a week but honestly, my energy only lasta 4 days a week. I just had a bone marrow biopsy this week because my red blood counts have not come back to a normal level. I have a sense of urgency with bowel movements and sometimes I have control and sometimes I do not. I have been told that the situation gets better with time so I have heart in that regard. In the meantime, this cancer is so not fun!

Being Tired!!!
Nice to meet you! I am sure all of this will get better in time, although my behind tells a different story. I can relate with you all the way about control. The colonoscopy went well yesterday with one polyp being removed, the Dr. could not turn the camera around once inside me due to scar tissue from the radiation but he said even with that not being done, overall looked good. Did you work while u received treament? My Dr. kept me out for 4 months. A good thing because couldn't have functioned at work.

vickie55 said:

Being Tired!!!
Nice to meet you! I am sure all of this will get better in time, although my behind tells a different story. I can relate with you all the way about control. The colonoscopy went well yesterday with one polyp being removed, the Dr. could not turn the camera around once inside me due to scar tissue from the radiation but he said even with that not being done, overall looked good. Did you work while u received treament? My Dr. kept me out for 4 months. A good thing because couldn't have functioned at work.

Being Tired
I haven't started treatments yet but my dr. has not made any attempt to talk about how treatments will affect work. He says, "everyone is different". Not much support in terms of advocating for time off. When did your leave from work start?

dasspears said:

Being Tired
My doctor said the same thing - everyone responds to treatment differently - it is important to listen to your body. The last 2 days of chemo and for 3-4 days after I was very tired. Radiation was not an issue until week 6 and then it was combined with chemo. Your doctor will probably talk with you more about when to take off from work the closer you get to treatment.

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?

vickie55 said:

Being Tired!!!
Nice to meet you! I am sure all of this will get better in time, although my behind tells a different story. I can relate with you all the way about control. The colonoscopy went well yesterday with one polyp being removed, the Dr. could not turn the camera around once inside me due to scar tissue from the radiation but he said even with that not being done, overall looked good. Did you work while u received treament? My Dr. kept me out for 4 months. A good thing because couldn't have functioned at work.

IMRT vs 3Dconforming
I'm not sure this will show up but I'm trying to make a decision on the type of treatment plan. Has anyone had the IMRT as I heard it makes a difference. Everything is really scaring me regarding the burns, vaginal area shrinking, etc...

I have been diagnosed with anal cancer stage 1, grade 1, well differentiated. The radiation they want to do on me is a 3D conforming, but if I travel I can have the procedure with the IMRT. I'm wondering if this has made a difference for anyone. I'm new to this site so not sure it will be seen. I am a 60 year old female.