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Hi, I am a new member

sandie0709
Posts: 1
Joined: Nov 2008

HI
My name is Sandie and I just signed up today and I would like to like to know if anyone has had or has Anal Cancer, especially if it has spread. I do have and has spread to the lymph nodes.
I have been looking for a Cancer support site and a friend of my husband directed me to this one. Hope to talk to anyone!!
Thanks!!

sramirez
Posts: 6
Joined: Nov 2008

Hi Sandie:

I was diagnosed with anal cancer this last summer. Have undergone chemo & radiation. Just had a second biopsy and waiting on results. Tumor doesn't look like it's completely healed. Hoping I don't have to face radical surgery (colostomy).

It's a difficult cancer to discuss. When you say what type you have folks look at you like they're not sure what to say. I don't fit the 'criteria' for anal cancer, so I'm in the 10% of folks who just "got it". My mother had breast cancer, so obviously I thought that's the type of cancer I had to worry about.

My radiation was very painful. Chemo not so bad. May have to face more chemo for my next treatment option.

Feel free to reply anytime.

S. Ramirez

sramirez
Posts: 6
Joined: Nov 2008

Hi Sandie - how are you doing? You've been on my mind since I found this site. My current biopsy report came back this week - CLEAR! Yea! I was so shocked over the news I didn't know how to react. Now just the worry that it will resurface - but I guess we'll have that worry forever.

What is your next course of treatment? Mine was diagnosed at Stage II and caught before it had spread. It was sitting very low and I could feel the tumor, so was lucky I caught it quickly.

S. Ramirez

zjrosenthal
Posts: 45
Joined: Dec 2008

Hi Sandie and sram....I was diagnosed with anal cancer last June. Right between stages 2-3 with the possible involvement of lymph node. Was treated August and September with chemo/radiation and the chemo wasnt bad but the last few weeks of radio and the few weeks after were pretty difficult due to radiation side effects which were cumulative. On my last exam in December I was told that the doctor only found scar tissue so I may have beated it! I was treated at Mem. Sloan Kettering cancer center in NYC and they are wonderful there, very skilled and also very supportive. If you are having radio I suggest you follow a low residue diet religiously, it helps. Also ask about lidocaine and a spray called Radia-klenz...it helps a lot with the sides. I also have some concerns about the possibility of the cancer returning but am trying to think positive. I had 25 regular radio treatment then 3 extra zaps right to the tumor. They used a new kind of radio that bends the beam around surrounding structures like the bladdar and lessens damage. I think it is called IMRT. Also the chemo was mitomysin given with a push plus 5 days of continuous infusion with 5FU. They put in a mediport so I could go home with the chemo bottle in a waistpack. There were 2 courses of chemo duing both the first and last week of radio. My radio oncologist said that she had only one patient with a tumor smaller than mine that needed surgery and that she hadn't gotten the extra 3 "zaps". Hope this helps and please respond to let me knwo how you are doing.

wje630
Posts: 14
Joined: Nov 2008

January 10, 2009

Hi Sandi:

I am new to this forum also. There are not a lot of people who post on here who have or had anal cancer. My onocologist said it is rare with a 4% of people diagnosed.

I was diagnosed in February of 2005 after having a growth removed. My surgeon thought it was some sort of polyp and I had thought it was just some kind of hemmorhoid? Anyway, when my surgeon called me and told me it was cancer, he was as surprised as I was.

Although it was Stage II, the chemo radiologist thought I could forego the chemo and just do the radiation so that is what we did. I had 7 weeks, 5 days a week. They did the tatoos on both my back end and my pelvic front because he said that the lymph nodes are so close in that area. There is not much area betweem where the anal growth was and the wall of the vaginal area. I'm not using the exact medical terms of course, but hopefully you will get the idea. Because of radiation in the pelvic area, after about 3 weeks, I got really red and raw both in the front and the rear. They gave me creams to help, but truthfully they did not help much. I was also experiencing loose stools and so I was a pretty sore lady from the front to the rear. They told me to just wear some men's boxers and loose clothing, like sweat pants.

The reason I am telling you all of this is that my radiation onocologist did not prescribe for me the dilators to use during my treatment. I didn't realize how much difference there was in my vaginal opening until after I had healed from all the soreness. I was told it was scar tissue that had formed from the treatments. When I did mention that when my fiance and I tried to have sex, it was so painful I could hardly stand it. After a few months with no relief, I went to my gynocologist and she suggested surgery to remove the scar tissue. THAT was not a good idea...my radiation doctor said I should have waited until I was completly healed which would have been about 2 or more years. Oh well, the damage had been done by that time. My radiologtist had suggested I have sex several times a week or I could just use a dildo if I wanted. Unfortunately, it was still painful even after the surgery.

I am using vaginal estrogen tablets and I just now bought a set of dilators I found at a site on the internet. It has been 3 years since I finished my treatments and all the CAT scans I have had since then have been clear. Although I am so grateful for
that, I am still sad about how much my relationship has suffered because of the changes in my body. I know I am fortunate to have done so well with my treatments.

If I had to do it all again(God forbid) I would use the dilators all during my treatment. It may be too painful at some point, but the idea is to keep yourself pliable and not let it have a chance to grow any scar tissue. Hope this isn't too graphic or too much info, but I have been trying to find someone out there who could relate to my problem and let me know if eventually the dialators will work even after all this time.

Good luck to you on your treatments, If you have any more questions or I can be of any help, just let me know. God bless, and good luck on your treatment.

zjrosenthal
Posts: 45
Joined: Dec 2008

I had treatment for anal cancer that finished in mid Sept. I was told to use the dialators starting about 6 weeks post treatment. THey seem to be working and I am also using liquibeads 3 times a week plus lubricant (store brand) its cheaper then KY before relations. I usually use the liquibeads the day before and the lubricant before penetration during relations. I hope this helps.

harleyrider's picture
harleyrider
Posts: 6
Joined: May 2008

I was diagnosed in June of 2007 and underwent 4 rounds of chemo (each one week long) with 5 weeks of radiation between the last two treatments. It was not a fun time. I became extremely dehydrated with each chemo treatment and weathered the radiation well until the skin sluffed off in my groin. I was stage II - no surgery.

The good news is that I am cancer free right now but what I am learning from reading these posts is that I don't think I am reporting enough information to my doctors. I just figured it was all "normal." I am speaking of some of the pressure I feel even when I don't have to have a movement and I have a lot of pain in my legs.

Post radiation I was told to use a dilator and I did faithfully. Still do - but what bothers me is that my husband won't have sex with me. We have tried a couple of times and it did hurt - and it may hurt - but I would like to try and get past that. He thinks it will hurt me and he can't seem to overcome it and I am running out of ideas. I do believe that intimacy has nothing to do with sex and sex doesn't have to involve penetration. But that hasn't helped us much. I don't want to spend the rest of my life without having sex - and it surprises me that I feel that way.

I have never heard of the liquibeads and not sure where I will find them - but I will look.

The entire journey has been very challenging. My sisters deserted me - and friends I didn't know came out of the woodwork. Now I worry about what effects the radiation has had and will have over time - any insight into that journey?

zjrosenthal
Posts: 45
Joined: Dec 2008

Harley...you can usually find liquibeads in the "feminine lubricants" section of any large drug store. If you can't find it, then ask the pharmacist who will usually know where to find it. (I try to ask a woman and tell them that it is a lubricant then they will direct me to the right section.) Liquibeads is actually a moisturiser rather than a lubricant. Lubricants are water soluable and can be used to make penetration easier during intercourse. I use the liquibeads 2-3 times a week usually a day before intercourse then the lubricant on him and I before penetration. I hope this is not too much info but so many people are afraid to talk about this and it is necessary to be educated after this treatment. I told my hubby that he is part of my therapy! (he liked that) and we have had to experiment with various positions so I wont get too irritated. We are learning to communicate on a deeper level than ever and that is a blessing. My doc said that penetration cant damage anything and just to do whatever I am comfortable with. Hope this helps.

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