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Anal Cancer

lizdeli's picture
lizdeli
Posts: 520
Joined: Jul 2009

I have looked through the site and found there isn't a specific site for anal cancer. I can see that it is somewhat in the Colorectal cancer category. There is a misconception that anal and rectal are the same type of cancer, which they aren't. The treatment is different as well as a few other things. So I thought I'd start a category for those of us who have anal cancer. This type of cancer is rare and there aren't as many support groups. Hopefully we can form one here.

Liz

pinker
Posts: 1
Joined: Oct 2009

I was diagnosed with anal cancer Sept. 24, and have not started treatment yet...i am so discusted...confused...mad etc etc. why does it take so long to get started...i now have a date for a pic insertion Oct.21..what will happen why are there not books...directions discriptions of treatment...is anyone there?

lizdeli's picture
lizdeli
Posts: 520
Joined: Jul 2009

Hi,
I am not sure why it is taking so long for your treatment to start. Where are you being treated? I started everything within one week. I was treated at MD Anderson Cancer Center in Houston. Did they tell you what stage you were at - tumor size, lypmph node involvement? Have you had your CAT Scan and/or PET scan? Reason I ask is because a lot of that could have something to do with the delay. Hopefully they have explained the treatment to you - how much radiation (# of treatments) chemo etc.

Let me know about this and I can help you understand what to expect. I know this is scary, I was terrified. I was diagonsed on 7/15/09, flew to Houston on 7/25 and began treatment on 8/5/09. Finished treatment on 9/11. Now waiting till Dec for results.

There is a light at the end of the tunnel. Anal cancer can be cured! Keep that in mind. The treatment usually lasts about 6 weeks. The first few aren't bad at all. Toward the finsih line (last two weeks) radiation affects begin to get bad. I can tell you what to expect, some things I did, etc.

I am here to help so please don't hesitate to reach out. Also, try to avoid reading all the internet stuff. It will make you crazy and much of it is unfiltered. Just remember this cancer can be CURED!

Liz

lizdeli's picture
lizdeli
Posts: 520
Joined: Jul 2009

Pinker
Here is another site that I think you will find helpful. There seems to be more people on there who have experience with anal cancer. There is a difference between anal and colon cancer and posts about anal get mixed in with colon.

I visit this other site more frequently. Good support group. I'll look for you there as well.

http://www.rare-cancer.org/forum/viewforum.php?f=121

dana789
Posts: 12
Joined: Jul 2009

There is an active yahoo group for anal cancer. I subscribed to that when I was undergoing treatment, and it was very helpful. But, always remember that the people who post on groups like that are more likely to have had problems and bad side effects, so don't assume you're going to get all the side effects that you read about there! Everyone's experience is different.

For me, chemo was worse than what I was expecting, but radiation was not as bad. I worked part time throughout my entire treatment and only needed pain meds to sleep at night. There are people on the yahoo group who had pretty bad burns from the radiation, but mine were tolerable. My doctor also told me to expect to stop working after about 3-4 weeks because I'd be on pain meds 24/7, but that never happened. My burns were never much worse than a bad sunburn.

But on the chemo, I was expecting my hair to just thin a bit, but instead I lost all of it. And the chemo caused horrible mouth and throat sores for me and a really bitter taste in my mouth. But some people either don't get that, or it's mild.

I was pretty exhausted the last couple of weeks of treatment, and I think that happens to everyone.

My treatment started in April 2009 and ended in early June. Mine had only spread to one lymph node. I had 35 sessions of radiation and 2 rounds of chemo. I just had my second follow-up exam today which confirmed that I am still cured and healthy!

Best of luck to you,
Dani

ACW189
Posts: 24
Joined: Feb 2009

I too was frustrated. I was diagnosed in January 2009 and didn't start treatment until April. I was referred to an academic teaching institute from my primary care physician at a smaller medical center. Therefore there was alot of time spent transferring and reviewing different records. The surgeon at my treatment hospital wanted to do his own biopsy even though he saw the pathology report and scans from the referring hospital. So that took time. He did a biopsy and removed the tumor which was on an internal hemmorroid. It was confirmed T1 No lymph nodes and no metastisis. I had radiation for 5 1/2 weeks along with chemo (a combination of 5FU and Mitomycin) which was administered the first and fourth weeks through a pump (total 96 hours per infusion)attached to a central venous port (called: Powerport)implanted in my chest.
The treatment wasn't too rough. Some nausea. However, they warned me that I'd feel worse following treatment before I'd get better and sure enough I ended up in the hospital for four days a week after treatment was done. I was neutropenic (spelling?) which means my white blood counts bottomed out. And I had a uterine infection. I recovered and started my way back nicely. Back to work a week later. I now have physical therapy to help with lower extremity muscle fatigue and tightness, expecially my hamstrings and groin area. I've also experienced an anal abscess and they're watching to be sure there's no fistula (won't go into this now...it's a rare occurrence following surgery.

My advise is to go to respected sites such as American Cancer Society, Mayo Clinic, MD Anderson, American Society of Clinical Oncology or American College of Surgeons to get basic information. If you want to read research go to PubMed, NHI or NCCN.

dana789
Posts: 12
Joined: Jul 2009

I'm having trouble with tightness in my hamstrings and groin too, plus every time I do a lower body workout the muscles stay sore a lot longer than they used to. Is the physical therapist doing much more than you'd be able to do at home with a good stretching video? I might need to check into that.

Dani

dana789
Posts: 12
Joined: Jul 2009

I'm having trouble with tightness in my hamstrings and groin too, plus every time I do a lower body workout the muscles stay sore a lot longer than they used to. Is the physical therapist doing much more than you'd be able to do at home with a good stretching video? I might need to check into that.

Dani

teresa_in_missouri
Posts: 1
Joined: Dec 2009

I found that youtube helped me alot with educating myself about picc line insertion. Actually, my doctors tell me very little, and I learn alot from the internet and reading what other anal cancer survivors went through. Currently, I just finished my 2nd week of radiation, and my skin is tender and feels somewhat raw. What really scared me is that I read during the last weeks of radiation there is bleeding. My doctors have offered no creams, no pain pills, nothing. They just told me I would feel like I will have a sunburn. Crazy...isnt it?

ccmustang
Posts: 2
Joined: Oct 2009

Hi, my mother has just been diagnosed with anal cancer, she is 61. We start Radiation theraphy treatment on Monday. I was wondering if you could tell me what to expect?

lizdeli's picture
lizdeli
Posts: 520
Joined: Jul 2009

Hi. Glad you posted. I just finished treatment for anal cancer. 6 weeks of chemo and radiation. I have a spot in a rectal lymph node as well. Is your Mom getting radiation and chemo or just radiation? What size is the tumor? Has she had a CT and/or PET scan? I ask because all of that impacts the treatment.

First thing to know - anal cancer can be CURED! It responds very well to chemo and radiation. The radiation treatment is okay for the first few weeks. During the last two weeks it gets rough. There are external burns in the pelvic area and the rear. There could be itching as well from the burns. The doctors should be able to recommend creams and sitz bathes to help. There is also diaharria toward the last treatments. It can be bad. There are meds for that, encourage your Mom to take them, it helps a lot.

I also visit another site that has more anal cancer survivors posting. Here's the link:
http://www.rare-cancer.org/forum/viewforum.php?f=121

There are a lot of survivors on that site and the info is very helpful. Stay positive, this cancer can be conquered!
Where is your Mom being treated? This is a rare cancer and it's important to deal with oncologists who have dealt with it before.

God bless...think positive.
Liz

ccmustang
Posts: 2
Joined: Oct 2009

Hi Liz,

My mom's tumor is T2. She has had both CT/PET. It has not spread to any other area.

I'm not sure what to say to her. I try to talk to her about it, but it seems to only make her more sad. We are in San Jose and are going to O'Connor Hospital. Should I not talk about it and just let her talk to me when she wants? I really want to help her, but don't know what to do.

Her Oncologist is May Chen. We have our first official meeting with her on Monday morning and start Radiation Therapy in the afternoon. The Dr. says it will be both Radiation and Chemo, but have not really been told anything about the chemo. They said it would be a rough 6 weeks, but are confident that it will be cured.

Thanks for your reply, it's greatly appreciated.

Cheryl

dana789
Posts: 12
Joined: Jul 2009

re: the sadness, mine got better after I started treatment. I think it's because you're around other cancer patients in the waiting room, especially waiting for radiation every day. You start to see that most people are in pretty good shape, and it's not as bad as you thought it would be. And there's a real camaraderie because everyone's fighting the same battle. Plus, all the employees at the cancer center were kind, compassionate, and upbeat.

And keep in mind that this is a really embarrassing place to have cancer, and that kind of makes it worse for a while. There are only a handful of people who know what I had. I told everyone else it was colon cancer. I even told all the other cancer patients that.

lizdeli's picture
lizdeli
Posts: 520
Joined: Jul 2009

Cheryl,
The initial shock of the diagonis is frightening. I was a mess for a week. All I did was cry and my doctor put me on Ativan to calm me down. Once I found out about the treatment plan and heard from so many of the doctors that this cancer can be CURED, I went into fight mode. I think it's important for your Mom to know that she has a great chance of beating this compared to other cancers. And, it has not spread, the tumor size is small and it's not in her lymph nodes! That is wonderful news. I am giving you my email address. If your Mom or you need to talk to someone who has been through this I would be happy to do so. Email and we can exchange contact numbers. ldeli@comcast.net

I did not have a bad reaction to chemo, but that varies from person to person. I had the 27 radiation treatments and had 5FLU chemo via a pump in a fanny pack that I had to wear M - F 24/7. Then one day a week I had an IV of Cisplatin, another chemo. I never got very sick from the chemo, actually never threw up at all. Got queasy at times. There are medications for that. Your Mom may not feel like eating or she may. I got to a point where I could eat a little at time. It's important for her to keep up her strength and her blood counts. She has to be careful of infection while on chemo. Wash hands a lot, use paper towels to dry them versus a regular towel. I didn't even eat finger food (like french fries) with my hands, I used a fork. Fortunately I got through the chemo with good blood counts.

Mouth sores....I was told it could happen. In the first week my mouth starting hurting and so did my lips. I rinsed my mouth 4 times a day with warm water and baking soda and I put Abreva on my lips. I also used Sensodyne tooth paste (the others have alcohol which can irritate the gums). I got through it with no mouth sores. But again, it all depends and the type of chemo has different affects. I didn't lose any hair. A little thinning but nothing major. Sometimes the chemo for anal cancer is Mitomycn (can't spell it). I had Cisplatin instead. The combo of Cisplatin and radiation is apparently easier versus the others.

I know it's a lot of info and overwhelming. But you both will get through this. For now, I would just try to build up your Mom's confidence that this is a CURABLE cancer and it can be beat!!! My doctor's told me that if I had to have a cancer this is a good one because they have such a great success rate with it.

Please don't hesitate to reach out. I will keep you and your Mom in my prayers.

Liz

Clairemck
Posts: 1
Joined: Feb 2012

Hi is this forum still active

lizdeli's picture
lizdeli
Posts: 520
Joined: Jul 2009

We actually have our own discussion forum now. Click on discussion boards and then Anal Cancer. Lots of people on there and good advice.
Liz

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