Tumor and results

Conniebo

my daughter had a quarter sized tumor removed from right inside her anus 2 weeks ago. The doctors office called her this afternoon and said the pathologist called the doctor and the doctor wants to see her in the morning before he goes into surgery. Should we be worried? Has anyone had this happen? I need to be strong for her but I would like some knowledge going into tomorrow.

mp327

Conniebo

I certainly understand your concern.  You do not have much information at that point, which can lead to lots of questions and anxiety.  I wish I could give you lots of helpful information at this point, but not knowing what your daughter's pathology report shows makes that difficult.  I will tell you this, however.  Anal cancer has a high rate of successful treatment with the standard treatment of approximately 6 weeks of chemo and radiation.  I went through that treatment in 2008 and I am approaching the end of 9 years of survival in good shape. 

If you wish to learn more about anal cancer, my first suggestion would be to check out the website for The HPV and Anal Cancer Foundation.  Here is a link to their website address:

https://www.analcancerfoundation.org/

I urge you, however, not to cross any bridges before necessary and until your daughter talks to the doctor.  I send all good thoughts for her. 

Conniebo

mp327 said:

Conniebo

I certainly understand your concern.  You do not have much information at that point, which can lead to lots of questions and anxiety.  I wish I could give you lots of helpful information at this point, but not knowing what your daughter's pathology report shows makes that difficult.  I will tell you this, however.  Anal cancer has a high rate of successful treatment with the standard treatment of approximately 6 weeks of chemo and radiation.  I went through that treatment in 2008 and I am approaching the end of 9 years of survival in good shape. 

If you wish to learn more about anal cancer, my first suggestion would be to check out the website for The HPV and Anal Cancer Foundation.  Here is a link to their website address:

https://www.analcancerfoundation.org/

I urge you, however, not to cross any bridges before necessary and until your daughter talks to the doctor.  I send all good thoughts for her. 

Thank you

thank you for the information and kind thoughts. I will let you know how it comes out.

Conniebo

mp327 said:

Conniebo

I certainly understand your concern.  You do not have much information at that point, which can lead to lots of questions and anxiety.  I wish I could give you lots of helpful information at this point, but not knowing what your daughter's pathology report shows makes that difficult.  I will tell you this, however.  Anal cancer has a high rate of successful treatment with the standard treatment of approximately 6 weeks of chemo and radiation.  I went through that treatment in 2008 and I am approaching the end of 9 years of survival in good shape. 

If you wish to learn more about anal cancer, my first suggestion would be to check out the website for The HPV and Anal Cancer Foundation.  Here is a link to their website address:

https://www.analcancerfoundation.org/

I urge you, however, not to cross any bridges before necessary and until your daughter talks to the doctor.  I send all good thoughts for her. 

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

 

eihtak

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

 

Conniebo....

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

mp327

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

 

Conniebo

I know this was not the result you were hoping for, but your daughter's doctor is doing the right thing by ordering the chemo and radiation as extra insurance that all of the cancer will be gone.  The treatment is very effective, so both of you should be very hopeful!  Keep us posted on when she begins treatment and how things are going.  We are here to support you and help if we can!

Wellzen

So sorry about your daughter.

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

Conniebo

mp327 said:

Conniebo

I know this was not the result you were hoping for, but your daughter's doctor is doing the right thing by ordering the chemo and radiation as extra insurance that all of the cancer will be gone.  The treatment is very effective, so both of you should be very hopeful!  Keep us posted on when she begins treatment and how things are going.  We are here to support you and help if we can!

Thank you all I will keep in

Thank you all I will keep in touch as things progress

Conniebo

eihtak said:

Conniebo....

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

Thank you so much

Thank you so much

Wisteria83

Conniebo

Hi, and welcome.  What a great mom you are for searching out info for your daughter here.  It might be a good idea for your daughter to join in as well, if she's up to it, however, there have been plenty of folks here acting as advocates for loved ones who for one reason or another just couldn't, or didn't want to join themselves.  When I read your first post, I expected what the dr. was going to say...they generally don't ask to see a patient in person to give them good news, and I can almost bet that you expected the same thing.

Kathryn and Martha have both given great advice to you so far, and when I joined this group several months ago, they did the same for me.  They have both been here a while and are very knowledgeable about this particular type of cancer and it's treatment.

Your daughter's doctor will likeley be ordering different tests now, such as CT and/or PET scans and MRI's in order to stage your daughter's cancer.  Waiting for those test results is nerve wracking too, but staging is an important part of the work-up.  This way, you, your daughter and her medical team will be able to know exactly what needs to be done to treat her appropriately.

My recommendation is that you read through some of the older posts here, so you have some idea of what to expect going forward.  If you or your daughter have any questions, please don't hesitate to ask.  No question is silly, and no subject is off limits, as you will see by reading what others have written.

I have gained so much from being here.  I've truly never "met" a nicer group of people who are willing to help.  Best of luck to your daughter as she begins this journey...and stay tough, mom.  Your daughter is lucky she has you looking out for her.

Hugs,

Wis

thrivingdaily

Very sorry to hear about your

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.

Conniebo

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?

tanda

conniebo

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/. 

Ohmy

I used the vaginal dilator

I used the vaginal dilator through the six weeks of treatment and I continue to use it three or four times a week.  It was painful the last week of treatment so a lidocaine gel was used prior to insertion.  I read this blog through out my treatment and learned lots of useful tips.  The best advice is to get some spray bottles and boxer shorts.  Keep the area clean and let it breathe.  I remember reading the treatment is brutal but doable.  Very true.  Some days I just read the blogs to remind myself I could do it.

Phoebesnow

Dialotors

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.  

Ohmy

I used the dilator during

I used the dilator during treatment.  Thanks for reminding me about the full bladder.  My doctor insisted my bladder be full for each treatment.  It protects the bladder and the intestines from radiation.  

LindaBaehr

Side 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.  

Ohmy

I healed up quite well.  I

I healed up quite well.  I think using the dilator kept me from getting the vaginal issues and I don't have any bowel problems except the occasional constipation.   I understand others are suffering so I try not go on about how good I feel  7 months post treatment but it really does get better.

xxsarahxx

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

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.

tanda

Ohmy

Great that you are doing very well.  I think it is important that you share that news,  It shows that  many people experience side effects in different degrees of intensity and have had different problems during and after treatment.  It provides hope!

When i was first diagnosed, I was terrified of the treatment effects and even more upset about the long term effects; I knew I could  get through the treatment(it was only 5-6 weeks) but I thought the long term effects would completely ruin my quality of life forever.  Reading this list and some other sites (Blog for a Cure) I realized that many are doing well and for many there is a "new normal" which is manageable.  So please share the good and the bad and the ugly!

tanda

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.

xxsarahxx

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