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anal cancer

nigella
Posts: 11
Joined: Jun 2009

Hi everyone!
I have been very recently diagnosed with anal cancer and will start treatment on July 6, 2009, with radiation and chemotherapy, mitomycin and 5FU. Treatment was postponed because major drug suppliers have been out of mitomycin! I have annual checkups and colonoscopy Feb 2007 because of family history but cancer was missed until I complained of sore hemorrohoids in May 2009. Thank you for sharing your stories about what I am facing even though some of the side effects sound scary. How many of you lost your hair? Any words of encouragement or helpful hints would be appreciated. Thank you!

KC_survivor
Posts: 1
Joined: Jun 2009

I am 39 years old finished up my 6 weeks of treatment May 8th . I saw my OBGYN in November, noticed a lump in Jan, Saw my family DR. who thought it was just a cyst. I am a nurse so am not so easily appeased. He sent me to the surgeon of my choice who also thought it was a cyst, CT scan did not show anything. He said he would remove the cyst if it was bothering me, granted I had no symptoms, but is was bothering me knowing it was there. When he went to remove it, he suspected it was a tumor, so did not cut it, he "teased" it out and sent it for biopsy. stage 1-2, without any mets. Thank you God! They told me the same thing about not being able to find the Mitomycin, therefore they would use 5FU and Cisplatin, less than a week before treatment began they found it. Keep praying. I was very blessed. I did not loose any hair... on my head, did not really have any nausea. lost only 4 pounds total, and only missed 2 full days of work, Salt, pop, chocolate, and white bread tasted awful.go figure the things I shouldnt have anyway.. I actually feel guilty when I hear what others have gone thru. Radiation was done with IMRT which gives different doses of radiation to different areas at the same time, causing less damage to surrounding tissue. almost 2 months have gone by and am dealing with joint aches and weakness/shortness of breath when going up steps. All labs have come back pretty normal. Best of luck to you, Prayers, positive attitude and humor got me thru.

nigella
Posts: 11
Joined: Jun 2009

Thank you so much KC_survivor! The "prayers, positive attitude and humor" are thoughts to hold tightly. I had to quit work because my boss felt my job was too physically demanding with the picc line in. I appreciate your information and best wishes!

radarbaby
Posts: 8
Joined: Jul 2009

I just posted about my 5 year survival experience, so check that and other posts here for some info. Remember that everyone's body is different, so everyone's experience is a little different. I would recommend that you stick close to home as much as possible while going through the chemo/rad treatment periods and if you can have help for the last round of chemo is best. These combo treatment periods leave you particularly vulnerable to infection. I wasn't working during the treatment, but everyone is different. I went out once in a while, but not a lot and if anyone even suspected they might be coming down with something I stayed clear. I think I may have been on oral antibiotics too at one point. I was allergic to something with the picc line. As I mention in my post, frequent tub soaks with Aveno really help with the skin peeling and pain. Don't be afraid to ask for pain meds and to take them if you need them. Just remember that they may cause some constipation, though not always. Don't ignore anything. Contact your doctors with any problems so they can get right on it. Do you have anyone to help you? Don't be afraid to enlist friends if you need to. They can clean your house or run errands if you are unable to. Put people to work (within reason of course) and they feel they are really helping you. But don't lay it all on the same person, spread the tasks out so that no one person will be overburdened. This won't be easy. Just remember that YOU are your priority right now. And keep your sense of humor whenever possible. Anything that makes you laugh is a good thing right now. Remember that this is only temporary. You will feel better over time. Good luck!

nigella
Posts: 11
Joined: Jun 2009

Thank you so much for all your wonderful suggestions! I have many people praying for me. As someone once said, "This too shall pass." Thank you again for your thoughtfulness!

z's picture
z
Posts: 1258
Joined: May 2009

I was diagnosed with anal cancer Stage II NO,MO 3 to 4 cm. I completed treatment on 6-30. Standard Mito,5FU and IMRT. I did lose hair from Mito, but I have plenty left and my hair looks good. Mine was perianal invasive to the anal verge. My oncologist, radiologist, and general surgeon all reasurred me the cancer would melt away. I had a pet, pap, mamogram, and all came back normal. The pet of course showed the anal cancer. I have HPV and will find out this upcoming Monday what type it is. There are over 100 types, 30 of which are high risk for cervical and anal cancer. The immune system will destroy most of the HPV types. I used bag balm for the radiation burns. Bag balm is used on cow utters. Very soothing, my radiologist gave it to me. I didn't have to use pain pills until my 25th IMRT treatment. I had 30. I only have to take 1 pain pill every 6 hours, but could take up to 12 a day. My radiologist said I should be healed within 3 weeks. The chemo was tolerable, and I didn't take the nausea pills until my second cycle, and only took about 1 a day. I will keep you posted, and I have added you as a friend. I will not know if the treatment worked for several months.

z's picture
z
Posts: 1258
Joined: May 2009

I forgot to mention the mouth sores, due to the mito. I had sores on my tounge. I asked for the prescription for them. I received a mouth rinse and a pill prescription. They lasted about 2 weeks. They were the most painful experience from the chemo.

z's picture
z
Posts: 1258
Joined: May 2009

I forgot to mention the mouth sores, due to the mito. I had sores on my tounge. I asked for the prescription for them. I received a mouth rinse and a pill prescription. They lasted about 2 weeks. They were the most painful experience from the chemo.

z's picture
z
Posts: 1258
Joined: May 2009
z's picture
z
Posts: 1258
Joined: May 2009

I forgot to mention the mouth sores, due to the mito. I had sores on my tounge. I asked for the prescription for them. I received a mouth rinse and a pill prescription. They lasted about 2 weeks. They were the most painful experience from the chemo.

z's picture
z
Posts: 1258
Joined: May 2009

I forgot to mention the mouth sores, due to the mito. I had sores on my tounge. I asked for the prescription for them. I received a mouth rinse and a pill prescription. They lasted about 2 weeks. They were the most painful experience from the chemo.

z's picture
z
Posts: 1258
Joined: May 2009

I forgot to mention the mouth sores, due to the mito. I had sores on my tounge. I asked for the prescription for them. I received a mouth rinse and a pill prescription. They lasted about 2 weeks. They were the most painful experience from the chemo.

z's picture
z
Posts: 1258
Joined: May 2009

Nigella, Sorry I did'nt mean to create all those mouth sore messages. I didn't think it was working. The first day of chemo and radiation treatment was the scariest for me. After I experienced the effects of the treatment, I found it tolerable. I am thinking about you as this is your 2nd day.

The medicines the doctor can prescribe to you, if you have any side effects, work very well. (nausea, pain) Just let them know. By the way I'm 7 days out of treatment and all chemo side effects are gone. My radiation burns are healing very quickly, as the pain subsides daily. I found during treatment taking a bath was very soothing. I'll be thinking of you.

nigella
Posts: 11
Joined: Jun 2009

Z,Thank you so much for all your helpful comments and information. I am having mild nausea on day 3 but taking the pills. I'm so glad you are improving rapidly. It gives me encouragement; it has been hard to read about the people who have suffered so much. I'm also having IMRT radiation which I have to do with a full bladder.
Nigella, my user name, is the Latin name for a pretty flower in pink, white and blue called "Love in the Mist".
Thanks again for your concern.

z's picture
z
Posts: 1258
Joined: May 2009

Nigella, I am assuming your on the 96 hour pump, as was I. This is the standard treatment, and the one thats proven to work at 85% survival rate without the colostomy. The mitomycin and 5fu. Just remember that this is a curable cancer. All of my doctors, an ocologist, a radiologist and a general surgeon have stated that this cancer just melts away. If you are on the pump, as I was, I noticed that the day I had it removed, my attitude changed in a very positive way. It helped me to think that although this is an unpleasant treatment, I knew it would cure me.

I was never told to have a full bladder during radiation, but maybe its because of where my cancer was.

I think that if Farrah had went with the standard treatment of mitomyicin and 5fu she might have been okay. But because she didn't want to lose her hair I think she opted for just the 5fu and maybe the cystipan (sp?). On the documentary the doctor said that her losing her hair, was one of the considerations of what treatment she opted for. And I don't know if you watched the documentary, but at the last of her treatment she lost her hair, because she went with the more aggressive chemo, but it was too late.

As I stated before I did lose some hair, but have plenty left. As a matter of fact I just had my hair colored today. The beautician used a gentle color, not permanant. Its the same type I had put on my hair before treatment and it looks great if I say so myself.

You are in my prayers.

Lori

nigella
Posts: 11
Joined: Jun 2009

Hi Z
Your comments are so encouraging to me. I had some "on the edge" nausea and my body can't make up its mind whether to have constipation or diarreha. Yes, it was wonderful to have the 5fu pump off! I think we agree that healing is more important than a full head of hair as Farah had. So glad to hear that your hair is beautiful again!
Thank you for your prayers.

lacer00
Posts: 12
Joined: Jul 2009

Hi

I am a 53 year old female. I was diagnoised June 15, 2009 from a colonoscopy which was to check out what everyone thought was hemrroids. I started treatment on July 6. They were going to start me with a different drug but managed to come up with enough Mitomycin so they started my treatment. I have completed the first week of radiation and mitomycin and 5-fu 96 hours. I am just really tired and so far that is the only side effects I have had. The Doctor said it has been growing about 2 years in me. I am at stage IIIB. It was also found in my left groin lymph node. I just found this site so I hope to get insight from other on what to expect.

nigella
Posts: 11
Joined: Jun 2009

Hi lacer00
I wonder why it is so difficult to find enough Mitomycin for treatment here in the US. We searched the internet for the product including Canadian pharmacies after the doctor couldn't find a supplier. Fortunately the local hospital has enough for me! Have you read the other comments from the discussion boards about other people's experiences with anal cancer?
Best of luck and prayers for you as we continue our treatment!

duckyann
Posts: 162
Joined: Jun 2009

Hi Everyone,

This is the first time I have posted on this site. I have been reading everyone's posts. I am a 48 yr. old female and was diagnoised with anal cancer March 16, 2009, Stage I-II. I went through the typical treatments mitomycin and 5FU the 1st and 5th week of radiation. I had 33 IMRT radiation treatments. I ended up having to take a weeks break after my 2nd round of chemo due to severe diarrhea. I lost 7 lbs just on Memorial Day weekend. Altogether I have lost 16 lbs from the time treatment started until the end. I did not lose any hair but I did get mouth sores. I am now a month out of treatment. I did not work for 3 1/2 months. I started back to work 5 days after treatment ended. I seem to be healing quickly. I had my first follow-up appt. with my medical oncologist 3 weeks post treatment and he did a DRE and said he did not feel anything. I am wondering though, I still get itching and very mild pain in my anus. Does anyone know if this is normal? I will have a biopsy done on July 24 and I am extremely nervous about it. Well I hope to be able to answer questions for the new people that are here. Like everyone says everyone is different and reacts to treatments differently.

All of you are in my thoughts and prayers!

lacer00
Posts: 12
Joined: Jul 2009

It is amazing there is a shortage of mitomycin. The hospital here had enough to do my treatment also. What stage is yours? Mine is IIIB. the tumor is more then 5cm and the left lynmph node is involved. There are other small areas in the lungs but they don't think they are involved. I have read the other post and some have really concerned me. I was given a dilator and told to use it 2x a week. I have finished my fist week of chemo and 1/2 through my second week of radiation. I have a PICC line and will keep it in till the end. Sometimes my arm huts. I am already blistering and sore. I am working one job. I had two but I did let the other go for now. I am an accountant in a one person office so I need to work as much as possible. I am also going through a divorce so I need the money. with in a 3 week period my whole life feel apart. Lets keep in touch. Partners through this. you can e-mail me at lacer00@msn if you would like.

Take care and my prayers are with you.

I can do all things through Christ who strengthens me Phil 4:13

kams
Posts: 2
Joined: Jul 2009

My cancer was stage 2B, the tumor was 5cm and had penetrated the wall but hadn't quite reached the lymph nodes. My PICC caused blood clots, so if you have pain be sure to check that out. As for the dilator... use it. The radiation is tough on some very tender parts of your body and will hurt for a long time. Try using ice (not directly but wrapped in a towel). I think it took two years until I was actually comfortable. But it is like any sore, it gets better with time. Altho sex is still uncomfortable. It's been three years since my treatment. You have a lot to handle right now. Being sick, worried, fried, and having to work is a lot. My prayers are with you.

kams
Posts: 2
Joined: Jul 2009

I didn't lose my hair, but my doctors used Xeloda and Cysplatin. A friend gave me a German shampoo called Thymuskin that also helps protect against hair loss. (At least I believed that bc I didn't lose mine) By now you are familiar with how your body is reacting to the treatments. The Chemo makes you sick but can be managed with meds. The radiation is a cure that keeps on giving even after the actual treatments stop. It will hurt like crazy for a long time. It builds up and will take time to feel better, but you will feel better. I hope you are doing okay.

nigella
Posts: 11
Joined: Jun 2009

Hi All,
My anal cancer is Stage III with a 5.5 cm tumor. The pet scan shows it is likely attached to the vaginal wall.
Kams did you have surgery? or did your wall hold up? I'm not having any blistering yet but can feel the beginnings of a burn.
Lacer00, yes, we will keep in touch through our treatment. My prayers are with you. I'm so sorry you have so much going on in your life. I've been off work since mid-June because the boss won't let me work with a PICC line, probably afraid of liability.

lacer00
Posts: 12
Joined: Jul 2009

I am very fortunate both of my bosses are very understanding. i worked at a local grocery store as a cashier. been there one year befor this happened. I call it my theropy. There is still good in this world and I saw it everyday I worked. Any way I couldn't stand for long periods any more so I had to quit that job for the time being but they have told me if I feel up to it I can work and when then is all over my job will be there. I have made some really good friend through the store I miss it alot. my other boss is great except he keep letting me know that the next two weeks are the most important part of my job. I hope I can make it. I am fine in the morning but by mid afternoon I am tired and by thursday I am really tired. Friday it is all I can do to get up and go. some one in one of the post talked about ensure. I drink boost and the chocolate is not bad. Sometimes i freeze it and then let it thaw for a while and it is a slush. My mouth sores are bad on one side only right now.

nigella
Posts: 11
Joined: Jun 2009

Lacer I would send you an energy pill if I had one. I can't imagine the energy it takes to work every day. I miss seeing my coworkers too. Beginning of Week 3 and meeting with doctor. Saw pictures of my body and pathways of radiation. Very fascinating to see my own interior!!! Are you using the "bubbles" prescription for your mouth sores? How are you sleeping at night? Nighttime sleep is sporadic with me because of all the pit stops! I meet with a dietician every week as part of my treatment plan and am taking Whey your Way in a smoothie. Yum! She also recommends Boost or Ensure.

Do you know of any way to have all Anal Cancer posts in one location on the discussion boards?

lizdeli's picture
lizdeli
Posts: 521
Joined: Jul 2009

Hi Nigella
I was reading through the posts and noticed that your tumor was likely attached the vaginal wall. I was told the same thing. Were you able to avoid surgery? How were your follow ups? I don't go for my follow up until one month from today, but I'm worried becasue of the position of the tumor. My tumor is around 2.6 cm.

Thanks,
Liz

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