New - Stage 2 N0M0 - diagnosed March 10, 2010

Chris3
Hi,
Welcome, Sorry you have to be here. I was diagnosed at Stage II NOMO Anal verge cancer. I completed treatment 6-30-09 and have NED (no evidence of decease). I went through the standard treatment of 5FU 1st and 5th week, along with 1 infusion of mytomicin, and 30 radiation zaps. My cancer was at the perianal opening going inside. The verge is part of the margin.

1. If your cancer is on the muscle they might not want to do surgery, because they don't want to damage the muscle.
2. Standard Treatment chemoradiation. No surgery Depends on where the tumor is and how big.
3. External Radiation IMRT very precise as to not damage healthy tissue
4. Only biopsy no recovery time needed. I took off work for 2 months, but took care of myself. I live in a single story, but I think you could use the stairs.
5. I had a normal pap at the same time I was diagnosed.

I have been diagnosed with HPV in the tumor, not from the paps. My understanding is that HPV lays dormant until the immune system is compromised. I know before my dx I had smoked for 35 years, ate poorly for 2, and didn't exercise. I have since quit smoking on 5-7-09, and am eating better. I need to start exercising now. I have only given my personal experience, from what I've been through and read from other posters. Your dr. should explain everything to you and answer all your questions so that you feel confident with your treatment plan. I hope I helped you. I wish you well. Lori

Hi Chris
I'm so sorry your circumstances have brought you here, but glad you have found a support group. I am also on Rare Cancer Alliance and will look forward to seeing you there.

I was diagnosed in June 2008 with T1/2NOMO (my tumor was right on the fence between a 1 and 2), so we have that in common. I did NOT have any type of surgery, either before or after treatment, and I would think that surgery would not be indicated in your case either. The standard treatment approach for this cancer is chemo/rad for Stage 2. The fact that you have been referred to a colorectal surgeon does not mean you are in for surgery, so please do not worry about that until you have your consult. You are wondering about the level of expertise with your doctors--well, I would just flat out ask them how many cases of anal cancer they have previously treated and how familiar they are with the standard protocol (called Nigro protocol after the doctor who developed it). I would highly recommend registering on the website for the National Comprehensive Cancer Network (NCCN) and printing out their guidelines for the treatment and follow-up of anal cancer. This will give you very good information and will help you make a list of good questions for your doctors. You might even want to take them a copy. As for the radiation, internal or external, you will most likely be getting external beam radiation. One very important question to ask the radiation oncologist is what type of radiation. You want to receive Intensity Modulated, as this will cause much less damage to the surrounding tissue and more effectively target the tumor itself. I would insist on being treated with this type of radiation! I really don't think you will be having any surgery, so will not address your questions about living alone in a 2-story house. Just be prepared for some fatigue issues and also make arrangements to have someone drive you to treatment every day should you not be up to it, especially towards the end. As for the HPV connection and cervical cancer, we all need to keep up with those annual gyno exams and pap smears, especially with a diagnosis of anal cancer. I'm sure your medical oncologist will hook you up with appropriate pain and nausea meds--do not hesitate to take them! Also, ask your radiation oncologist for any creams or lotions to apply to your skin to reduce burning and discomfort--but be sure to have all traces of such removed from your skin prior to getting treatment every day. I hope I have not bombarded you with TMI, but I'm sure you have many questions right now and hopefully, some of them have already been answered. Please let us know what your schedule is and keep us posted. I wish you the very best!

mp327 said:

Hi Chris
I'm so sorry your circumstances have brought you here, but glad you have found a support group. I am also on Rare Cancer Alliance and will look forward to seeing you there.

I was diagnosed in June 2008 with T1/2NOMO (my tumor was right on the fence between a 1 and 2), so we have that in common. I did NOT have any type of surgery, either before or after treatment, and I would think that surgery would not be indicated in your case either. The standard treatment approach for this cancer is chemo/rad for Stage 2. The fact that you have been referred to a colorectal surgeon does not mean you are in for surgery, so please do not worry about that until you have your consult. You are wondering about the level of expertise with your doctors--well, I would just flat out ask them how many cases of anal cancer they have previously treated and how familiar they are with the standard protocol (called Nigro protocol after the doctor who developed it). I would highly recommend registering on the website for the National Comprehensive Cancer Network (NCCN) and printing out their guidelines for the treatment and follow-up of anal cancer. This will give you very good information and will help you make a list of good questions for your doctors. You might even want to take them a copy. As for the radiation, internal or external, you will most likely be getting external beam radiation. One very important question to ask the radiation oncologist is what type of radiation. You want to receive Intensity Modulated, as this will cause much less damage to the surrounding tissue and more effectively target the tumor itself. I would insist on being treated with this type of radiation! I really don't think you will be having any surgery, so will not address your questions about living alone in a 2-story house. Just be prepared for some fatigue issues and also make arrangements to have someone drive you to treatment every day should you not be up to it, especially towards the end. As for the HPV connection and cervical cancer, we all need to keep up with those annual gyno exams and pap smears, especially with a diagnosis of anal cancer. I'm sure your medical oncologist will hook you up with appropriate pain and nausea meds--do not hesitate to take them! Also, ask your radiation oncologist for any creams or lotions to apply to your skin to reduce burning and discomfort--but be sure to have all traces of such removed from your skin prior to getting treatment every day. I hope I have not bombarded you with TMI, but I'm sure you have many questions right now and hopefully, some of them have already been answered. Please let us know what your schedule is and keep us posted. I wish you the very best!

new diagnosis
Hi Chris I was dx on april 09 had standard chemo and radiation stage 2 with no lymph node involvement did not have surgery you will probably need to have some help toward the end of treatment especialy if you are taking pain med you don't want to be driving. I have had 2 rectal ultra since the end of my treatment and there is no evidence of tumor I wish you luck just hang in there you will get through it

new to diagnosis
Hi, Chris,
While I am sorry anyone has to deal with cancer of any kind, I am glad you have come to this site. The Anal Cancer discussion board is a benefit most of us didn't have. It is most helpful even after becoming a survivor of almost 2 1/4 years- which I am.

My colorectal guy and the radiation and medical oncologists discussed surgery vs. no but the medical oncologist said it should be only if needed after the chemo and rad treatments. A large percentage of us do not need surgery at all. I did not need it.

I live in a part of the country where there are not a lot of cancer centers and we had one with "the newest" equipment so I got external radiation with the kind of focused beam the minimizes damage to surrounding tissues. I find it a good sign that I cannot remember what kind this is.... or is it just my age showing?

I had my colonoscopy the day before my 64th birthday and woke up to be told I was scheduled for a CAT the following day, my birthday, for a suspicious tumor in my rectum. Then, its being Christmas time and all, I didn't learn the diagnosis for until Jan. 4 - about 2 1/2 weeks later. There was some confusion about staging and my husband and I hoped House (TV doc) would be on the tumor board. Bottom line for me was a "melt down" just before starting the standard 25 -31 radiation treatments with 5FU and mitomycin the 1st and 5th weeks. I only felt better after a long teary discussion with an experienced oncology nurse - they are truly angels!

Treatment went smoothly basically and ended in early March with a clean PET in May. If all goes relatively routinely for you, you will being feeling better by mid summer. There are lots of details about the journey in these posts.

I wish you all the best and hope we'll see you regularly so we can cheer you on.

Priscilla

Chris3 said:

The dream I had last night...
Just woke up and what little I can remember of my dream is this...

I'm at the top of a mountain ski slope. It is crowded with other skiers preparing for their runs down the mountain. I'm stressed out and confused - I'm thinking "How the hell did I get up here? I don't know how to ski!" Someone comes over when they notice my distrss and asks "What's the matter - don't you know how to get down?" I say "No. I haven't skied in years and I don't even have any equipment." In the next scene, I am wearing a pair of bright red ski pants. Then in the next, I have on a ski jacket. When I look at it, at first I think it is bright red too and I think "Great, I look like a crazy Santa Claus." But, then I realize it isn't red, it is actually shocking fuchsia pink - it doesn't match - it totally clashes. I look crazier than a crazy Santa Claus! "Oh well. At least I'll be warm in case I fall." Then, someone else skies up and hands me a little Igloo thermos with a handle on it. As I am holding it, they start to pour in a somewhat thick liquid. I say "What is this?" "It's orange juice." "I'm supposed to ski all the way down this mountain carrying a jug of orange juice???" "Yeah, you're probably going to need it." Then, I woke up.

Thanks for providing the ski pants, ski jacket and orange juice to get me down the mountain!


Chris

Dream
Chris,

Isn't it funny how dreams work, that was very funny and for you to attribute this dream to the support your getting is awesome. I wish you well. Lori

Wendy L said:

Also stage 2 N0M0 diagnosis Mar 2010
I have just been diagnosed as well. I have a lot of confidence in my chemo oncologist and radiation oncologist. Have been for my "fitting" for radiation treatment and am ready to go with the exception of having a surgeon install the port for the chemo. The oncologists are ready to begin on the 29th and the surgeon had me scheduled for the port on the 31st. We are trying to push forward on that date. I am anxious to get this going so that I can be done with it! I was reading symptoms of others. I too thought I had hemis...no such luck!

Wendy
Hi Wendy,

Welcome, Sorry you have to be here. I was Stage II NOMO Anal Verge Cancer. I completed treatment 6-30-09, and so far I have NED. I felt the same as you I just wanted to get it started. I was initially dx on 4-23, but I wanted a 2nd opinion, so I didn't start tx until 5-18. I thought I had a hemi, and went to the gyno after about 5 months of trying to treat it myself. The gyno pa said that is not a hemi and reffered me to a gastronologist, who said it could be a hemi. He then reffered me to a general surgeon who did my coloscopy and biopsy and yes indeed it was anal cancer. I wish you well. Keep us posted. Also you might want to check out the rare cancer alliance web site. It takes 24 hours to get a log-in. Theres a lot of Anal Cancer surviovors there. Lori

mp327 said:

Hi Wendy
I'm so sorry that your circumstances have brought you here. I hope you will find the support you are looking for here--we are all here to help. As for thinking you had hemis, I'm sure that's how the majority of us begin this journey. I hope it didn't take you long to get a correct diagnosis and that you can get your treatment started on the 29th. Please keep us posted as to when you get your port and begin chemo/rad. I wish you the very best!

Wecome Wendy
I am sorry you had to search us out, but happy we are here for you. I know many of us would have benefitted from this form of support when we were first dx'd. You will get good information and support, a winning combination, as you go through this unexpected event in your life from the members here and the site Liz mentioned, as well. Knowledge is power, so arm yourself with as much as possible.

I too, shrugged my symptoms off to hemis. I think that is a reoccurring theme amongst us and the medical field as well. Hopefully we can work to change that, and I believe this forum is a step in the right direction.

I hope that your treatment starts soon and that it is smooth, swift and successful!!! Please check back often and don't hesitate to ask anything that comes to mind.

Best regards,
Joanne

Chris3 said:

Staging change to T2N2M0
Hi everyone,

Sorry about the long absence between posts. I feel like I climbed into the top of one of those 4-story high water park slides and I've been whipping through the twisting, turning, rapidly-declining tube for the past 2 weeks!

Anyhoo - I've met my entire "team" of doctors and I feel comfortable with each of them. I had my CT & PET scans and unfortunately that showed a positive hit in one of my pelvic lymph nodes. Totally sucks but it is what it is. I got my port put in on 3/31. That went well except that the anesthesia really did a number on me. I was not prepared to be so loopy and wonky for so many hours afterward!

My Medical Oncologist proposed putting me into a Trial but it would have pushed everything back an entire week, and required additional tests and I wasn't comfortable with the drug substitution (instead of the standard 5FU & Mitomycin, it was 5FU w/ Cisplatin and the addition of Cetuximab). I just wanted to get the show on the road - I didn't want this "thing" to have an extra 7 days to have it's way with me!

So, everything starts rolling tomorrow 4/5. I am nervous and have been thoroughly reading all the posts and taking notes on all your wonderful suggestions for drugs and creams, etc. The plan is to stay working but we will take that as it comes and see how I feel. And, as a just in case, I'm planning on going to look at wigs on Thursday if I have enough energy.

Despite all the research, I still feel ill-prepared for this coming week but I have a wonderful group of family and friends that are completely dropping their normal routines to help me through this.

Once again, I appreciate the invaluable information provided on this board. And just as important as the information is the inspiration and strength given by those of you who have made it out the end of that huge water slide tube and are wading in the cool blue water at the bottom.

Chris

Wishing you the best!
Hi Chris--

I know how you feel about just wanting things to get underway. I couldn't wait to get started with chemo/rad--I figured the quicker it starts, the sooner it ends! I'm glad you feel comfortable with your doctors, as I think that is very important. Sorry to hear about the lymph node lighting up on your scan, but it will get zapped and no longer be a concern! I know you are very anxious and don't quite know what to expect on day 1, but it should go well for you. I had no problems my first day and felt fine, just a little tired that evening. I did have issues with morning nausea, so I always made sure I had a big bowl of jello in the frig waiting for me every morning. I would eat some of that upon waking up to get something on my stomach and that helped a lot. As soon as my stomach settled, then I could eat breakfast. Plus the jello is just another way of getting more fluids, which you want to make sure to get plenty of! Please let us know how it goes and remember we are here to help you get through this!