Just diagnosed

mbh97766

I'm a 50 year old female who has just been diagnosed with anal cancer. I had a mass removed which apparantly was the size of a walnut and just had a CT scan today to see if it has spread. Recovering from that minor surgery was quite painful and in reading everyone's posts, it appears to me that I get to experience that (those) sensations during my treatment period. Oh goodie!
I am meeting with my radiologist on Monday the 22nd, and I was wondering if some of you could guide me with what I should expect, what to ask about, etc... This is all so overwhelming.
What about alternative treatments? Has anyone tried any of those? If so, what kinds? Did they work?
The data for cure and survival using the western medicine protocal is so positive, I hesitate to veer from that course.
My biggest concern at this point is the short term and long term effects of radiation on such a sensetive area of my body. I'm frightened by words like "vaginal dialators", "depends diapers", etc....

mp327

Hi mbh97766--
I'm sorry you have found yourself with a need to be here, but you are among friends and people with whom you can discuss such issues as vaginal dilators and adults diapers. I assure you that none of us are afraid to discuss these things. As for your meeting with the radiation oncologist, I would ask specifically what side effects to be prepared for and what types of medications he/she prescribes to deal with them. You will want to know how often he/she will see you (my rad onc saw me weekly at the beginning, then twice a week towards the end). Your skin will need checking often to make sure you are not getting burned. Do you yet know what type of chemo you'll be getting? Standard is Mitomycin and 5-FU on weeks one and five. I know you are overwhelmed right now and I would recommend having someone accompany you to your doctor's visits when you have so many questions. Write down everything you want to ask and have whoever is with you right down the answers. It's very hard to take it all in, so having someone go with you will help. I want to wish you the very best. This is not an easy journey, but many of us have been there and are doing well, so keep a positive attitude and come here as often as needed for support. We are here for you.

Martha

z

mp327 said:

Hi mbh97766--
I'm sorry you have found yourself with a need to be here, but you are among friends and people with whom you can discuss such issues as vaginal dilators and adults diapers. I assure you that none of us are afraid to discuss these things. As for your meeting with the radiation oncologist, I would ask specifically what side effects to be prepared for and what types of medications he/she prescribes to deal with them. You will want to know how often he/she will see you (my rad onc saw me weekly at the beginning, then twice a week towards the end). Your skin will need checking often to make sure you are not getting burned. Do you yet know what type of chemo you'll be getting? Standard is Mitomycin and 5-FU on weeks one and five. I know you are overwhelmed right now and I would recommend having someone accompany you to your doctor's visits when you have so many questions. Write down everything you want to ask and have whoever is with you right down the answers. It's very hard to take it all in, so having someone go with you will help. I want to wish you the very best. This is not an easy journey, but many of us have been there and are doing well, so keep a positive attitude and come here as often as needed for support. We are here for you.

Martha

mbh97766
Hello, Welcome and sorry you have to be here. When you go for the rad appt. they might go ahead and take some scans and tattoo you (very small) to align you properly for the zapping. I had the standard myto and 5fu along with 30 radiation zaps. Of course you will not feel the zaps, but with the accumulation of zaps over a period of time you will have side effects. You will be able to get pain meds and you should ask what type of creams you may use. My radologist gave me bag balm, (used on cow utters), which was very soothing. I would take a bath go get zapped and then come home take a pain pill and apply the bag balm. I was able to handle it fairly well. I have not heard of alternative treatments for anal cancer. I know that I finished tx on 6-30-09 and so far I shown ned (no evidence of disease). I wish you well and please come back and ask more ?s whenever you want. You may also do a search on subjects within this discussion group that may be helpful. Lori

nonichol

welcome
Welcome to our elite club, sorry you had to join us. This is the place to be to find out how to deal with and deter some of the side effects of treatment. I read a lot of the older post when I first came and got a lot of suggestions that way.
I would not veer from the standard method of treatment. As I am sure the docs will tell you this is a curable cancer. The worst things for me during treatment were very painful bowel movements and towards the end the fatigue. I think the fatigue was even worse the first two weeks after treatment. But recovery has been quick to follow.
I finished treatment Aug. 27th. I am back to work and keeping up with my old schedule.
The most helpful thing for me was sitz baths, especially after a BM. I used Black tea for my baths. I thought the tea was weird suggestion, but in week three I was willing to try anything. The tea helps draw out some of the burn. Also, be sure to have your pelvic and rectal region dry before your treatments.
Another thing that was hard to deal with was the fact that others (non anal cancer) people did not understand the situation, that is where this site came in and is so helpful.
Best wishes,
Norma

mbh97766

nonichol said:

welcome
Welcome to our elite club, sorry you had to join us. This is the place to be to find out how to deal with and deter some of the side effects of treatment. I read a lot of the older post when I first came and got a lot of suggestions that way.
I would not veer from the standard method of treatment. As I am sure the docs will tell you this is a curable cancer. The worst things for me during treatment were very painful bowel movements and towards the end the fatigue. I think the fatigue was even worse the first two weeks after treatment. But recovery has been quick to follow.
I finished treatment Aug. 27th. I am back to work and keeping up with my old schedule.
The most helpful thing for me was sitz baths, especially after a BM. I used Black tea for my baths. I thought the tea was weird suggestion, but in week three I was willing to try anything. The tea helps draw out some of the burn. Also, be sure to have your pelvic and rectal region dry before your treatments.
Another thing that was hard to deal with was the fact that others (non anal cancer) people did not understand the situation, that is where this site came in and is so helpful.
Best wishes,
Norma

Thanks for the welcome
I feel so blessed to have this forum available to me. My anxiety level, as I start this journey, is very high mainly due to so many unanswered questions. Being able to read each of your experiences helps me to be prepared. I am sure that throughout this process I will be asking alot of questions and seeking alot of advice on many issues. I've already learned so much from you guys, my notebook is filled with legitimate questions for my radiologist that I would otherwise never know to ask. It has been my experience that we must be our own advocates and we have the right to demand certain things things that may not be presented as options. I will get through this with the loving support of my family and friends, and now support from this community as well. Thank you all,
Darcee

sissy310

Hello. I'm sorry you have
Hello. I'm sorry you have to be in here with this diagnosis but you could not be in a better place for advice and counsel from the wonderful people on this forum. I say this from experience as I'm only 3 months out from treatment and this forum was here for me every step of the way with advice and experience information and just caring. I know everything is scary right now because you do not know what to expect. The radiation portion of it for me was to be set up with a 'mold' and they did tat me because I was worried I would have to have magic marker on me all the time so I opted for three red dots on my pelvis. After that I had 33 radiation sessions. You get used to the timing and the atmosphere - I used to count sometimes the zaps to keep me occupied - or bring a small teddy bear or trinket someone gave me. Don't worry about the vaginal dilators or depends diapers or other things. Start a crisis kit like I did with all necessary items you 'might' need throughout this. I called it my ACCK bag (Anal Cancer Crisis Kit). It had a pair of pants, some underwear, wipes, lemon drops, protein bars, creams, and anything else I could think of that I might need at some point. I only used half of it. Many of the side effects I learned could or could not happen and I felt safe knowing I had the right tools in case they did, some of them completely avoided me. So do not worry to much about the what will happen, prepare yourself for it, but take it one day at a time.

And always always always come in here for advice or to vent or to let us know how you are doing. This forum was my lifeline throughout treatment and even now and I appreciate it so much. We're all here to help you get through this. Marilyne

z

mbh97766
Hello again,

I see you have a man in the photo with you, is that your husband? Rather than use a dialator you may use your husband. I am single and had to use the dialator, but would much rather have used a man. The purpose of the dialator is to keep the vaginal opening open, but if you have regular intercourse that will do the trick. The area shrinks as it gets treated due to the radiation. I know I wouldn't have had intercourse for at least 3 months after tx, as I was still healing. Everyone is different. I didn't have any trouble at the gyno for my papst smear either. I do not have incontinence problems. I am 51 years old, so your younger than me, and I never used depends. Although, its a good idea to be close to a bathroom, because you might have diarreha, and possible accidents if you don't make it to the bathroom in time. These side effects will ease with time after tx is over, and you begin to heal. Lori

mbh97766

z said:

mbh97766
Hello again,

I see you have a man in the photo with you, is that your husband? Rather than use a dialator you may use your husband. I am single and had to use the dialator, but would much rather have used a man. The purpose of the dialator is to keep the vaginal opening open, but if you have regular intercourse that will do the trick. The area shrinks as it gets treated due to the radiation. I know I wouldn't have had intercourse for at least 3 months after tx, as I was still healing. Everyone is different. I didn't have any trouble at the gyno for my papst smear either. I do not have incontinence problems. I am 51 years old, so your younger than me, and I never used depends. Although, its a good idea to be close to a bathroom, because you might have diarreha, and possible accidents if you don't make it to the bathroom in time. These side effects will ease with time after tx is over, and you begin to heal. Lori

thanks for the advise. I
thanks for the advise. I would much rather use my husband than a dialator. I know he would be understanding and gentle, he's a good husband. I just want his life to be the same as it was before. Why is it that I feel responsible for not only the quality of my life, but his as well? Why is it that I feel "guilty". Anal cancer seems to do that to people, other than different cancers. Anal cancer makes one feel "bad". Am I crazy or is it just the word "anal".?

z

mbh97766 said:

thanks for the advise. I
thanks for the advise. I would much rather use my husband than a dialator. I know he would be understanding and gentle, he's a good husband. I just want his life to be the same as it was before. Why is it that I feel responsible for not only the quality of my life, but his as well? Why is it that I feel "guilty". Anal cancer seems to do that to people, other than different cancers. Anal cancer makes one feel "bad". Am I crazy or is it just the word "anal".?

mbh97766
It is the word anal, the breast, correctol, lung, although not as curable, are easier to say to someone because they have heard of it before.

I had a primary lung cancer after the anal, as I was a 35 year smoker and quit after the anal dx on 5-4-09, and was dx with lung cancer on 9-23-10, while having the vats procedure. Before I went in for surgery the nurse who was assisting the dr came to me and said what kind of cancer did you have? I told her anal, I said its very rare, and she just nodded her head.

Please don't feel quilty, it is our bodies reacting to something abnormal going on. My anal cancer tumor pathology came back with HPV. The great news is this is a curable cancer, and thats the 1st thing my dr told me along with the oncologist and radiologist.

By the way, the lung cancer was caught at such an early stage due to the anal cancer screenings that the lobectomy is considered a cure. I didn't have to have chemo or rads, just a lobectomy, and the prognosis is 80% 5 year survival rate, just like the anal cancer. Now I'm 2 for 2, and I hope that will be all for me. I am just eating better and exercising now, and feel better that I have in years. I wish you well Lori.

mp327

mbh97766 said:

thanks for the advise. I
thanks for the advise. I would much rather use my husband than a dialator. I know he would be understanding and gentle, he's a good husband. I just want his life to be the same as it was before. Why is it that I feel responsible for not only the quality of my life, but his as well? Why is it that I feel "guilty". Anal cancer seems to do that to people, other than different cancers. Anal cancer makes one feel "bad". Am I crazy or is it just the word "anal".?

It's all about location
The fact is, people just don't want to talk about that part of their anatomy. It's uncomfortable for most people to discuss and therefore, feelings of guilt or shame are normal. I have gotten past that in the 2+ years since I was diagnosed. It's like my colorectal doctor said--"Everybody has one (anus)." My pic on this forum is of me wearing a tank top in a race that had 55,000 people in it that says "Anal cancer is a real pain in the butt." I got some looks, but also some people told me it was great that I was bringing attention to this disease. No, it doesn't bother me to talk about it anymore! You will get to that point also.