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Anal Cancer

Chrisluvsfairies
Posts: 7
Joined: Jan 2009

Hi is anyone out there who is a anal cancer survivor? I just finished Chemo & Radiation in the begining of December. The Dr says my new PET scan shows no cancer so I am so grateful. I still get tired easily and have some "chemo brain" but all in all doing well.

zjrosenthal
Posts: 45
Joined: Dec 2008

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
Posts: 7
Joined: Jan 2009

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!

ACW189
Posts: 24
Joined: Feb 2009

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...

Chrisluvsfairies
Posts: 7
Joined: Jan 2009

You will be ok. It is rough but you will make it. The chemo for me was Nausea pretty bad but the meds help quite a bit. I didn't lose my hair just thinned out a bit. I was warned that the radiation would be brutal but,to be honest it wasn't as bad as I anticipated. I did have burns to the whole private area it was like a severe sunburn. It did heal pretty quickly. You must tell the Docs if any pain ect.. there are things they have to help.
No I was off work for the first week of Chemo as they had me in the hospital for that and the week after as I just didn't feel well enough to work. Then I was off for the last week of radiation and a few days after as I was just too sore.
I am doing pretty well now Its been 8 weeks since my last radiation. I still get tired easily and have some strange bouts of diarrhea but, all in all I'm just grateful that its over. I am to get checked Pet scan & Exam every six months now.
Everyone is different how they handle the treatments you may not feel well enough to work for a while. I work at a desk so not too strenuous.
When I got my diagnoses I vowed to live my life as normal as possible.
You will be ok. God Bless.
e-mail me anytime.
chrisluvsfaires@yahoo.com

dasspears
Posts: 233
Joined: Feb 2009

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
Posts: 467
Joined: Jan 2009

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.

dasspears
Posts: 233
Joined: Feb 2009

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.

lisavaughan
Posts: 7
Joined: May 2009

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!

kihonkumite
Posts: 14
Joined: Oct 2013

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

pializ
Posts: 255
Joined: Nov 2012

Hi there! So sorry for your need to find this site, but as you are here, welcome.

There is a specific protocol for anal cancer which is outlines on the NCCN website.  You will need to register to view the details. I would be looking for a second opinion. Sometimes, although rarely, it is necessary to have a permanent colostomy, but in addition to chemoradiation. 

As I say, I would definitely be seeking a second opinion.

Meanwhile, this is a fantastic site to obtain support. I am so glad I found it prior to starting my treatment last December.

Liz

mp327's picture
mp327
Posts: 2820
Joined: Jan 2010

Definitely get that second opinion at MSK.  Our friend, Sandy, who is in this support group, sings high praises for Dr. Martin Weiser at MSK.  Perhaps she will chime in with more information about him and the medical team at that facility.  I would definitely not take the opinions of the first two doctors as the final word.  Many people are diagnosed with this disease in Stage 3 and still receive the usual protocol of chemo/radiation with no need for surgery and do quite well.  As one of our other posters mentioned, please go to the website for the National Comprehensive Cancer Network at www.NCCN.org and register.  You can then view the most current protocol guidelines for the treatment of anal cancer.  Get familiar with them before you have the appt. with the next doctor.  They will help you come up with a list of questions to ask. 

As for those doctors telling you that you would need a colostomy because of the location of your tumor, I am skeptical of that.  Radiation can be very precisely targeted, sparing surrounding tissue from irreversible damage.  The chemo is given as a boost to the effectiveness of the radiation, as it makes the cancer cells more vulnerable to the effects of the radiation.  I don't know what specialties these doctors are in, but please keep in mind that many doctors are very unfamiliar with this disease because it is rare.  A specialist is definitely should definitely be consulted. 

What kind of workup have you had so far?  Staging is usually done after a PET scan.  If you can provide more details of what you have already undergone in the way of staging/testing, that would be most helpful.

We will support you here, so please come back and share with us.  We can help you in ways the doctors can't because we've been there.  I wish you all the very best.

sandysp's picture
sandysp
Posts: 734
Joined: May 2011

It's great that you are getting a second opinion from Sloan. I had much the same diagnosis as you, with two doctors telling me to have surgery right away.

They did not know what they were talking about.

I had Doctor Weiser. He is wonderful. I had chemo and radiation and am cancer free. Everything else is still in tact.

I saw a Physical Therapist and a Women's Health Psychologist for the damamge done to my vagina. As a result, that is almost perfect again too.

Don't give up.

I am happy to go to your appointment with you if I can arrange my calendar.

Good luck,

Sandy

Wa
Posts: 4
Joined: Jun 2009

Hi there - I am a stage 4 rectal cancer survivor and was diagonsed 2 years ago (April, 2007), when I was 36 yrs old. I worked out regularly, ate well and have never been overweight. My diet did NOT consist of red meat, or fatty foods and my main vice was an occassional glass of wine. Also, this was not genetic (as we also did genetic testing). Regardless, I was shocked when I was diagnosed; I went through 5 weeks of 5FU, Oxciliplatin, etc, concurrent with 5 weeks of radiation. I then had surgery (Aug, 2007) and rcvd a temp ileostomy; I continued w/ another 12 weeks of 5FU and then had a reversal on the ileostomy (Feb, 2008).

In June of 2008, I went in for a routine Pet/CatScan and rcvd some of the worst news of my life, the cancer at mets and they had found 2 tumors in my liver. I underwent 4 rounds of chemo (CPT11, Avastin & 5FU). I then had surgery at UCLA Pleger Liver Institute, by one of the best surgeons and continued with another 8 rounds of chemo. I am now Cancer Free. My main concern has been my diet, I am still trying to find my footing with the right foods. I went to a "cancer" nutritionalist, but she was straight out of college and basically xeroxed a nutritional worksheet and called it a day. I am hoping someone out there who has had a similar experience can assist me in finding the right foundation for my diet.

I take a multi-vit and probiotics. About 9 inches of my colon and 1/2 of my rectum have been removed, so there is little to no storage capacity for BM's. Please, if there is anyone out there, please advise re: your diet plan. Thank you in advance and good luck with your own cancer challenges. Cancer CAN be cured, through a great medical team, good family and friends and most of all by "Pray and Faith".

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

Sounds like me last year.
I, too, kept being told the blood was just an internal hemorroid but because of discomfort I insisted on colonoscopy being done early ( I was 64 and 3 years left before next "routine" colonscopy due. Sure enough, they found a tumor crossing the dentate line between anus and rectum. Called it rectal and changed it to anal.

I had two rounds of mitomycin and 31 radiation treatments and healed pretty well - back to most normal activities 3-4 months after end of radiation. The meds to control pain and nausea, etc. worked quite well. I had only of few bad days and my family and friends were unbelievably supportive. In retrospect, what I remember most is not the discomforts but the every afternoon movies with my husband (in our bedroom with a projection screen on the wall). I feel very very very lucky.

That said, I am not the old me. My vaginal walls have evidently fused and I am seeking any info I can about this problem. My ob-gyn is inclined to do nothing. I have fairly regular rounds of diarrhea. At first I actually had some incontinence issues but this has subsided. I am very anxious whenever my digestive system is upset and have not found any where enough info on the after effects of pelvic radiation.

Looking for this after effect information is what has made me finally get on this site!

How far into treatment are you now?

lisavaughan
Posts: 7
Joined: May 2009

The 42 rounds of radiation destoyed my cervix, scar tissue so bad I'll never have sex again. I have a permanent colostomy. The radiation also fused my upper intestines to part of my colon. This blockage turned into gangrene which followed with emergency intestinal surgery to remove a foot of my upper intestines and about 8 inches of my colon. Radiation, at 39 years old, put me into menopause and I'm now being treated with severe osteoporosis. Scar tissue is really, really bad in my anus and rectum. The colostomy can never be reversed.

Guess I'm lucky otherwise. I had a tennis ball size tumor and after three years I'm still cancer free, but not without its consequences.

Please Note: It took two years after completion of my radiation treatment before the damage to my intestines was discovered. During and after my treatment of chemo and radiation, my colorectal surgeon was taking biopsies every two months under anesthesia for two years. The intestinal blockage was either overlooked during that time or it happened instantaneous one day. I only know I was in the hospital for 10 days being treated for an intestinal infection. Within 24 hrs. of my release I was back for emergency surgery and a 4 month hospital stay. Please Note: Stage 3 cancer requires harsher treatment compared to stage 1 or 2. The cure rate doesn't fall that much though. I was told I had a 95% chance of survival although it varied among my doctors. Some said 95%, others would tell me between 85 and 90%. After three years....I've only had the initial treatment of chemo and radiation for the cancer/tumor.

momacork
Posts: 3
Joined: Mar 2009

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
Posts: 14
Joined: Nov 2008

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.

vickie55
Posts: 3
Joined: Mar 2009

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
Posts: 233
Joined: Feb 2009

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!

vickie55
Posts: 3
Joined: Mar 2009

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.

dasspears
Posts: 233
Joined: Feb 2009

In hindsight, I wish I had taken time off. I just took vacation days for chemo. Fortunately, the company I work for and my boss were very sympathetic and I was able to work 1/2 days or whatever I needed. I really think if I had taken more time off, I would have healed faster and probably conserved more energy. Oh well, it's behind me now! (pun intended).

ACW189
Posts: 24
Joined: Feb 2009

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
Posts: 233
Joined: Feb 2009

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.

Sandra C
Posts: 5
Joined: Apr 2009

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?

JJCCCC
Posts: 1
Joined: Oct 2011

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??

waspcracker
Posts: 8
Joined: May 2009

I'm new to this network but unfortunately not new to anal cancer (diagnosed Sept. 2008 with Stage IIIA). I just posted a long-ish comment/question, but don't know if it will show up in this anal ca network. Can someone tell me how to read your earlier posts? Thanks, waspcracker in Philadelphia.

coletski
Posts: 4
Joined: May 2009

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.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

Hi! I have a very rare aggressive type of uterine cancer (UPSC), and am currently undergoing radiation (28 rounds + 3 internal). I did some research and am VERY glad that I am having IMRT (Intensity Modulated Radiation Therapy) instead of the more common CRT (Conventional Radiotherapy). Although this research deals with the external pelvic radiation and accompanying protocols for my particular cancer, I hope that these results will be comforting to you, as it sounds as if anal cancer radiation is in the same region and has the same types of complications that we deal with in uterine cancer. IMRT reduces the 'friendly fire' complications to surrounding tissue and organs DRAMATICALLY! If your insurance will cover the greater cost of IMRT, that's the radiation you should fight to get.

Here's the gist of the research I did & a URL if you want to read the whole thing:

Results: The initial 24 patients were treated with CRT and the subsequent 27 patients were treated with IMRT. Two patients in each group were treated to extended paraaortic lymph node fields per protocol for lymph node involvement. All patients in the IMRT group and 20/23 pts in 3DCRT group received intracavitary HDR brachytherapy. All patients completed their prescribed course of RT. No patients in either group experienced any grade 4 toxicity. Patients treated with IMRT experienced significantly less grade 2 or greater gastrointestinal toxicity (30.4% vs. 3.7%, p = 0.007), as well as less genitourinary toxicity (8.3% vs. 0%, p = 0.13) than did those treated with CRT. No differences in hematologic or skin toxicity between treatment groups were observed.

Conclusions: Radiation in combination with sandwich CT chemotherapy for UPSC had less toxicity when delivered via IMRT compared to CRT. This difference was statistically significant for GI toxicity, and approached statistical significance for GU toxicity.
The reduction in GI toxicity is of particular importance, as GI complications are a common dose limiting toxicity in UPSC patients. Further follow-up and prospective study with dose escalation is warranted.

Author Disclosure: J. Vainshtein, None; S. Mutyala, None; N. Thawani, None; R. Hannan, None; R. Yaparpalvi, None; S. Kalnicki,
None.

( http://download.journals.elsevierhealth.com/pdfs/journals/0360-3016/PIIS0360301608017008.pdf )

coletski
Posts: 4
Joined: May 2009

Thank you so much, your answer to me really is helping. There's not many people with this experience with IMRT so it's good to hear that you felt it made a difference. All the bet to you, Colette

waspcracker
Posts: 8
Joined: May 2009

I'm a 59 yr. old female and am 4 months out from 30 rounds of IMRT (plus 2 cycles of chemo--mitomycin & 5-FU). I'm very, very glad I had IMRT. The treament was intense, caused burns, and vaginal & anal stenosis, but is much less damaging than the earlier form of radiation. I'm starting to use the vaginal dilators along with estrogen cream. Healing has been rapid for me.

coletski
Posts: 4
Joined: May 2009

I am so happy to hear that, everyone on this site is so amazing, I hope I can be that brave. Having the 3D conforming I think is what you are refering to as conventional? I think I will go for the IMRT though it is a hardship to go far away. I just want the least damage and best team of doc's. Thanks again

waspcracker
Posts: 8
Joined: May 2009

(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?

MANCE_LEGSTEEL's picture
MANCE_LEGSTEEL
Posts: 1
Joined: May 2009

I'LL BE STARTING CHEMORADIATION MONDAY 5/18/09. APPRECIATE ALL THE INFO. 5-fluorouracil, mitomycin, and concurrent external beam radiotherapy for treatment 30 days radiation with concurrent chemo first 4 and last four days. I am very athletic and obviously depressed about the whole PICC line thing. I guess that should be the least of my worries, hey? I have been working out fairly regularly even through diagnosis stage. Prior to that over 100 miles weekly on road bicycle. I will more or less create a journal here for anyone interested in the male side of this cancer and it's treatment.

skinor
Posts: 1
Joined: May 2009

I was diagnosed with anal cancer Feb 2008. I had the same treatment as you will be receiving. The PICC line is very important. With the treatments you may become dehydrated and your veins are not that great therefore the PICC line will help. The first two weeks are ok but get rest. Other tips that may help is to get Aquaphor and use alot on the burn areas. When the burns get real bad, get a prescription for silvadine cream. Drink alot. Stock the house with electrolyte drinks. I had alot of nausea, vomiting and diarrhea but the drugs helped. The nausea continued for about 5 months after completing treatment. I lost about 25 lbs. Avoid depressing shows on TV or reading anything depressing. Watch only funny shows to keep your spirits up. Because you become weak, you may lose muscle from inactivity. The treatment is hard but before you know it, it is over and for the most part, you will be back to your old self. I will check this site for your process.

waspcracker
Posts: 8
Joined: May 2009

Sorry to hear you'll be going through this. I had a port installed (rather than a PICC) just under my right collarbone and have been very happy with it. I wince every time I see nurses fishing for veins in the poor souls without ports. The only upkeep is getting the port flushed out every 4-6 weeks so clots don't develop. I can do my usual yoga practice with no problems. Lying on my stomach doesn't work too well, and the port bugs me when my car shoulder/seat-belt has to go over it, but that's about it. Re/ the treatment, I too am very active and--previous to the anal CA Stage IIIA diagnosis--have never really been sick. Don't push yourself. Expect the chemo & radiation to sap your energy, and give into it. Just coast through; take pain & nausea meds regularly before the pain & queasiness build up. Sleep a lot. Keep us updated. This is a different kind of road race.

balletbertha
Posts: 3
Joined: May 2009

I had the same treatment and finished 3/27/09. I flew throught the first 3 0r 4 weeks, then got realy tired and my skin kept getting redder. I found I was able to control diarrhea with a BRATTY diet. Talk to the dietician where you go, mine was a major help.
I ended up buying lots of loose cotton pants (I went to the thrift store). I still don't use toilet paper (I use a squirt bottle with water and then blot with a washrag).
I was lucky enough to have family come stay with me, and for the week after the treatment was over, I lay on the sofa. That's when the red skin started to peel and I needed the pain pills and had no appetite You need to plan for this week. I ended up losing about 20 pounds, most of it in weeks 4 to 6.
The good news is that I feel great now. Defecation is still a little painful (feels like I ate too many peppers). I have a PET scan in the near future to let me know if all the cancer is gone. My advice: Drink 80 ounces of water/day while on radiation treatments, start using aquaphor or whatever cream they gave you NOW. Get lots of rest, be lazy (it actually helps with the pain). Remember this treatment is short; I have a friend whose been getting chemo for 2 years.
God bless, good luck, we're all with you

Jann Landess
Posts: 3
Joined: Jan 2010

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

skmonty
Posts: 1
Joined: Jul 2013

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's picture
Lorikat
Posts: 551
Joined: Jul 2011

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

 

shoji
Posts: 2
Joined: May 2009

Hi,
I have advanced anal cancer. I have had chemo & radiation. There is residual cancer according to doctors. I can also still feel the lump. I have not had biopsy yet but when I do have it & if it is still cancer (which according to doctors is most likely) I have to make up my mind quickly about surgery. I would like people's opinions on whether resection is the best way to go when cancer is advanced. There is not evidence of spread but I was not given any mri or pet scans. My doctors are very reluctant to do them. I wonder if they know something I don't. I am going to have pet & radiation scans done through another center. I hope it will give me more info. The residual cancer seems to be growing. I also have a fistula which also complicates it. My pain is under control but it never went away all through treatment. They want me to have resection whether it has spread or not. They say there is no evidence of spread to lymph glands. Ct scans are not showing any. I have had a lot of problems recovering from surgery in the past. The doctors are all for surgery. I am worried if it has spread the surgery might debilitate me so much that my quality of life might be terrible. Are there many survivors of over 5 years of people with advanced anal cancer and I wonder what the chances that it has already spread.
I hope I have covered most of it. It is difficult doing normal things let alone having these types of decisions to make. Also, I know this is difficult but what usually kills -the actual anal cancer which my doctor said when it spreads goes to the bladder & is a terrible way to die or through spread to liver & lymph. Would having the surgery stop a really painful cancer or would a resection be done later if need be.
Thank you for any help.

zjrosenthal
Posts: 45
Joined: Dec 2008

I was treated seemingly successfully with chemo and radiation last fall. However after hearing Farrah Fawcett's story I would not hesitate to have surgery if my cancer returned. A permanent colostomy would be worth it to save my life.

phillyAC
Posts: 6
Joined: May 2009

Yup, It's been almost 17 years since I went through the same protocol for treatment as most of you - UGH! Radiation, 5FU and Mitomycin (spelling is probably wrong, but you all probably know what it is by now). I was 42 at the time of diagnosis - never thought I'd still be involved with so many effects after so many years had gone by, but radiation is rotten from start to finish! Menopause, vaginal atrophy (sex? what's that?) Radiation really does a number on your body and for many years after treatment stops. My docs didn't talk about any of the side affects especially long-term possibilities. Now I'm finding out about fecal incontinence and doctor's don't know what to do about it.

Don't misunderstand, I'm very grateful that I've had these past years with my children, husband and family, but with the good comes the bad and now my quality of life has become that of a recluse. I had a rectosele 2 months ago, now I'm on 2 "new" meds, fiber drink and no dairy products (what I'd do for an ice cream cone or a Starbucks Mocha Venti with lots of whipped cream) ..... I haven't seen any improvement after two weeks - what's next?

Hang in there folks - there's always something new to learn

rc dobbs
Posts: 2
Joined: Jul 2009

Although my cancer was not anal, I did have radiation in the pelvic area with all the 'wonderful' side effects of burns, etc. I also went through 12 months chemo. In 2000 I had a hysterectomy and small bowel resection due to radiation scarring. After surgery I was told everything looked great and off I was sent. After about three years I started have severe bouts of diarrhea (20+ times a day), lost weight, extreme fatigue, forgetfulness and just plain felt like crap. I finally found a new doctor who would listen to my everday woas. What she found in doing bloodwork was I had no Vitamin B12, my homocystine level was off the charts and I was in a state of depression. She explained that with the bowel resection, my body was not absorbing the B12 thus causing many of my symptoms. Of course I was never told any of this would happen. Anyway, I am now on B12 shots, take folic acid, aciphex, otc antiacids and antidepressants. I will also do sublingual B12. All this has helped but the thing that made the most difference in the bathroom issues (besides being very aware of what you eat) was Activia yogurt! I had tried probionic capsules that did not seem to work, but I noticed a huge improvement after about 1 week of eating the yogurt. Where was Jamie Lee Curtis for so many years?
Precautionary measures to take are ALWAYS know where the bathrooms are, sit in aisle seats whenever possible for planes or movies, don't eat out in restuarants if you are planning on doing anything afterwards, have very understanding friends and carry an extra pair of undies in your purse for those surprise moments!

zjrosenthal
Posts: 45
Joined: Dec 2008

What is a rectosole if you dont mind my asking? So far the radiation effects have not been too bad...dialator 2x a week, liquibeads the same, vagifem and estrace 2x a week and ky for intimacy.....such fun!!! Well I too am grateful that I seem to have beaten the cancer.
(treated last fall)

ACW189
Posts: 24
Joined: Feb 2009

A rectocele is where the vaginal wall protrudes into the rectum and the lining between them becomes very thin. I too have a rectocele but have been told it's very common and no measures to correct it have been suggested -- even when I asked. There was some concern about the radiation effects on the rectocele--possible hole in the wall, but no issues occurred. All is good...just saw the surgeon and he said my case was "uneventful".

Spunky07
Posts: 2
Joined: Jul 2009

Hi, was diagnosed with anal cancer T2N0M0 on June 9th & am scheduled to begin a 6 week regiment of chemo & radiation on Aug 10th. Besides what I have already read here, are there any tips any of you can give me for preparing for this treatment. And I also want to say thank you to all on here - you have shared what the doctors won't say - all I keep hearing or reading is "everyone is different..." I'm aware of that, but it is frustrating when no one wants to tell you the real truth of what "might" be one of the consequences I'm facing. I'd rather be prepared for the "what ifs" than totally blind-sided. Also if there is something I can do now to help me get through this period, I'd love to hear it. Thanks.

duckyann
Posts: 162
Joined: Jun 2009

I just finished treatments on June 10, 2009. I had 33 radiation treatments with mitomycin/5FU the 1st & 5th week. I will tell you what happened to me I got mouth sores, nausea, diarrhea and extremely tired from the chemo and radiation. There are a couple of things you could ask your doctor for if this happens; Magic Swizzle (numbing mouthwash), make sure you swish and gargle with salt water (3-4 times a day) this will help, have imodium on hand, make sure you ask for pain pills (don't wait until your pain is too bad) and you might have to watch what you eat. Lots of carbs and not so much veggies and fresh fruit. My second round of chemo I did not get the mouth sores, my doc. gave me a prescription for duflicon (I think that is the name) and it prevented it, I did however get very sick during this time and lost 7 lbs in 4 days. Make sure that you drink plenty of water and gatorade if you are not eating properly. I ended up having to take a week off of radiation because my diarrhea got so out of hand. Also, you will want to make sure that they give you some kind of silver sulfadine for the burns on your butt. You can not use this with in a couple of hours of radiation. May I ask why they are waiting so long to start your treatments? I was diagnosed on March 16, 2009 and started on April 20th and I thought that was a long time. Did you get a PET scan done? I would be more than happy to answer any questions you might have. You do have to keep in mind that people do handle the treatments differently. Hope all goes well for you.

duckyann

Spunky07
Posts: 2
Joined: Jul 2009

I was concerned at how long it was taking them to get going - once I knew it was cancer I just wanted to get at it and get it out! (I'm not a very patient person - but I'm learning to be) Diagnosis was from a biopsy. So far I've met my radiation oncologist, had the CT simm with tattoos, a CT scan, MRI & a couple of other consults. I'm scheduled for a PET scan, vaginal ultrasound, to meet my medical oncologist (when I'll find out what kind of chemo), to get a PICC line put in and then 6 weeks of treatments with chemo in 1st and 6th week. The radiation is using helical tomotherapy (is this what some referred to as IMRT?) which is supposed to lessen the side effects and I've signed on to a clinical trial. I was told it takes this long to get everything scheduled & planned and I was not to worry - that this was normal. In hind sight (pun intended) would applying some of that silver sulfadine or aquaphor for a few days prior to beginning radiation treatments - kinda like the idea of a sunscreen prevention - help prevent the burns? Hmmmm... Thanks for the reply and best wishes.

duckyann
Posts: 162
Joined: Jun 2009

I am sure that the radation you will have is IMRT. That is what I had. May I ask where you are getting you treatments? What state you are in? I am in Pennsylvania. I did not have an MRI or a vaginal ultrasound but I did have the CAT and PET Scan. I did not have a pic line I have a Port a Cath. I would not use the silver sulfadine before radation. I used a lotion called Special Care Cream for about a month before I had radation. Not sure if you doctors would have it or not but it is a lotion with a bunch of vitamins in it. Maybe if they have something like that you should use it. You probably won't know what Stage you are in until after you get your PET scan results. Well if there are any other questions I can answer for you I will be happy to. Please keep in contact with me as you go along with treatment and let me know how you are doing.

Best wishes to you also.

zjrosenthal
Posts: 45
Joined: Dec 2008

I finished Chemo (5FU and mitomycin) two courses and 28 radiation IMRT treatments last fall. So far so good. My last exam showed no cancer. Be aware that radiation results continue for months after treatment and as long as the tumor keeps shrinking it is working. I was a bit upset when the tumor wasnt gone right after treatment but that is normal I understand. I was treated at Mem Sloan Kettering and they were wonderful. A low residue diet (very limited fiber) is best throughout treatment and helps a lot with preventing diarrhea. Also when going to the bathroom, especially during the last few weeks of radiation and for the first 2 weeks after when the burns are at their worst, I used a water bottle with warm water, (the kind with the top you usually drink from) and sprayed myself while voiding and after. There is also a wonderful product called RadiaKlenz that your doctor can get or you can order online. It is not cheap but really helps to clean you after the bathroom. I also used silverdene(sp) but it must be removed before radiation or it will cause worse burns. The treatment is not easy but it sure beats surgery and if it saves your life like it did mine, it is worth it. Personally I did not find the chemo to be too bad. They can give you antinausea drugs if necessary and also stuff for mouth sores if that becomes an issue. Be sure to use the dialators after treatment and also topical estrogen and moisturizers.
The doctors dont always order all of the things mentioned above so be sure to ask for them.
I agree that you should begin the pain meds before pain gets too bad as they work better that way. Hope this helps.

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