Tumor and results

Conniebo said:

Tumor

well she got results today. It was squamous cancer. He 

thinks he got it all but thinks she should have 6 weeks chemo and radiation.  Pray it completely goes away

 

Hi, and welcome, although so very sorry there is a need to welcome yet another. I'm sure you and your daughter will find a great deal of support here though. It is good news that her doctor was able to give positive news regarding her surgery, and the fact that he is following up with the standard chemo and radiation says he is in line with protocol treatment. As mentioned, keep in mind the high success rate of treating this type of cancer.

I suggest reading through some older posts to get a feel for the issues and side effects that others have had, but do keep in mind that we are all different and also it is often those with concerns that post more often. I think its fair to say that this treatment is difficult, yet it is short by comparison to many others, and some have only manageable troubles throughout.

I will have both yourself and your daughter in my prayers as she moves forward. Please continue to post as someone will have some bit of helpful advice or tips to make her journey just a bit easier I'm sure. (Isn't it tough to be a mom?) Hang on yourself....we are with you!

katheryn

So sorry about your daughter. She is lucky to have you

Very sorry to hear about your daughter's situation, Conniebo. As a big sister to someone battling anal cancer, I know how terrifying it can be. My sister has always been like my child as I don't have any. 

I highly suggest looking at nutritional research for follow-up after the treatments. It is something I wish we had done sooner.

Best of luck in this journey that nobody wanted to take. Hugs and prayers to y'all.

I convinced my medical oncologist to let me have oral chemo.  Capecetabine(Xeloda) is 5 FU in pill form. One day 1 I had a mitomycin infusion and began the pills and radiation.  the pills are taken twice a day, 5 days a week concurrent with radiation.  For some reason, I did not have the final dose of mitomycin.  This is one of the protocols listed on the NCCN Guidelines. Therehas been some research(Memorial Sloan Kettering) suggesting that this protocol is less toxic and as effective as the original(40 yr old protocol) with a 5FU infusion.

Not everyone has the same side effects or experiences them to the same degree.  I had no appetite, became dehydrated(partly my fault) had bowel and bladder frequency and urgency, fatigue,,diarrhea,; I did not lose my hair, but it started to shed after the treatment ended.  I did NOt have mouth sores, or low white counts. It's  a miserable treatment, but only 5 1/2 weeks. Radiation is cummulative and the last two weeks  and a week or two later are very tougjh and then you begin to turn a corner as your body begins to heal.    Patience is required!

I was given vaginal dilators by the nurses.  I didn't even try to use them until after treatment.  If you can ,use them before treatment begins and continue  for the first few weeks before the area is too sore,There are physical therapists that specialize in pelvic floor rehab; they will help you with stretching and exercises to keep the vaginal tissuesmore supple.  It may take awhile, but with the proper help, your vaginia should not close up.

Please keep asking questions...there are many people on this site with alot of experience who can offer helpful advice for managing side effects.

As Martha mentionned, this is an excellent information source: https://www.analcancerfoundation.org/. 

i think you can have a dialator inserted during treatment to lessen this side effect.  check with your doctor, also ask about a full bladder during treatment to lessen effects.  

Not everyone gets the vaginal complications.  I have had no issues in that area.  It's the bowel issues and the neuropathy in my feet that are my biggest issues.  Sorry to hear about your daughter.  It isn't fun.  

Conniebo said:

Radiation/Chemo starting in two weeks

My daughter will start radiation/chemo in two weeks.  She is trying to convince the doctors to let her have oral chemo.  Radiation Oncologist is okay with it so she is waiting to hear from medical oncologist.  She met with radiation oncologist today and she is really upset with the things she was told today regarding side affects.  She will have 5 weeks radiation. The one thing that she heard today that has her so concerned it that there is a chance her vagina might close up?  Is that true?  She is young (47) and sex and her marriage are very important to her.  She is besides herself.  Can anyone give me adivce or information about what they are talking about?

So sorry that you and your family is having to go through this.  That it is no fun is an understatement.

I very clearly remember the early days during diagnosis; hearing all the possible side effects that I was facing was horrible.  I spent those appointments it tears; it was terrible and terrifying.  So my heart is so sad for how your daughter is feeling right now.

Unfortunately, vaginal stenosis (narrowing of the vaginal canal) is a common side effect, although as with all side effects, everyone's experience is different.  I was 39 when I was diagnosed and most definitely have fairly severe stenosis two years out from treatment, but there are other people on this forum that were clearly luckier than I.  Seeing a gynecologist that has experience with cervical cancer (very few are likely to have experience with anal cancer, especially in younger women) may be a wise choice at this point as I found my radiation oncologist to be only partially knowledgeable.

I will say, though, that I have never heard of the recommendation to use a dilator during treatment.  That seems like it would be incredibly painful and my understanding from everything I've read and been told is that it won't prevent it from happening as the radiation causes long-term/permanent changes to the tissue structure that require long-term use of a dilator to combat.

Lastly, the social worker in my cancer center recommended seeing a therapist that specializes in sex and while I have never been able to act on the suggestion, I've continued to think that it's something that would be very helpful.  She said that patients generally had very positive experiences and that it helped them a great deal.

xxsarahxx said:

So sorry that you and your

So sorry that you and your family is having to go through this.  That it is no fun is an understatement.

I very clearly remember the early days during diagnosis; hearing all the possible side effects that I was facing was horrible.  I spent those appointments it tears; it was terrible and terrifying.  So my heart is so sad for how your daughter is feeling right now.

Unfortunately, vaginal stenosis (narrowing of the vaginal canal) is a common side effect, although as with all side effects, everyone's experience is different.  I was 39 when I was diagnosed and most definitely have fairly severe stenosis two years out from treatment, but there are other people on this forum that were clearly luckier than I.  Seeing a gynecologist that has experience with cervical cancer (very few are likely to have experience with anal cancer, especially in younger women) may be a wise choice at this point as I found my radiation oncologist to be only partially knowledgeable.

I will say, though, that I have never heard of the recommendation to use a dilator during treatment.  That seems like it would be incredibly painful and my understanding from everything I've read and been told is that it won't prevent it from happening as the radiation causes long-term/permanent changes to the tissue structure that require long-term use of a dilator to combat.

Lastly, the social worker in my cancer center recommended seeing a therapist that specializes in sex and while I have never been able to act on the suggestion, I've continued to think that it's something that would be very helpful.  She said that patients generally had very positive experiences and that it helped them a great deal.

Radiation affects the bladder, bowel, vaginia and basically the tissues of most areas in the treatment field (ie below the waist) There are physical therapists that specialize in pelvic floor rehabilitation---they help stretch the area, train you inthe correct use of the dilators and deal with other problems including sexual issues.

Some women who were treated at MDAnderson began dilator use before beginning radiation and continued throughout treatment.  I was supposed to start eight after treatment, but was very sore and waited a month or two