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New - Stage 2 N0M0 - diagnosed March 10, 2010

Chris3
Posts: 53
Joined: Mar 2010

Hi everyone. I’m so glad I found you (thank you, Joanne!). I am a 52-year-old female diagnosed on March 10th 2010 with Anal Cancer Stage 2 N0M0. Tumor is in the muscle but has not broken through the wall. I have a consultation appt on Mar 16 with a ColoRectal Surgeon. I am trying to obtain as much info as possible as soon as possible so I can have intelligent, informed questions to ask at my upcoming doctor's appt. I have joined this group and the Rare Cancer Alliance group to get valuable information from those that have been through (or are going through) this Pain in the Butt Cancer, rather than just the very clinical basic info (definitions and such) found on some cancer websites. Then, I am hoping to “Pay It Forward” by helping new members that come after me. I have read most of the postings, and have already found some very valuable information (i.e. vaginal dialators, spare sets of clothing, etc.). Some of the lingo being used is foreign to me, but I’m sure I will pick up the language quickly. Here are some questions I have: 1. What kind of questions should I be asking the Colorectal Surgeon and the Radiology Oncologist in order to determine their expertise? Now that I see what a rare cancer this is, I am worried about the level of experience with this type of cancer. 2. It sounds like some of you had radiation first, and then surgery. Others sound like they had surgery and then the radiation. How is it determined which procedure comes first? Is it best to try and shrink the tumor first before surgery? Or is it best to just get the dang thing out of there as soon as possible? 3. Radiation: External or Internal or both? 4. Recovery from surgery: I live alone in a 2-story house with only 1 bathroom on the second floor. Am I going to need to find an interim place to stay with everything on one level? Will I need to have someone stay with me? 5. My last pap smear was normal, but since HPV is linked to anal cancer, should I also worry about cervical cancer? (My heart goes out to women who tested positive for HPV, but was never tested for anal cancer.) There are so many questions and so little time. I really appreciate any input you wonderful, strong, inspiring people can give to me. Chris

z's picture
z
Posts: 1251
Joined: May 2009

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

Chris3
Posts: 53
Joined: Mar 2010

Lori,
Thank you for sharing your experience.

I do have one other question: My GI doctor referred me to see a Colorectal Surgeon first rather than an Oncologist. Was that your experience?

With much appreciation,

Chris

z's picture
z
Posts: 1251
Joined: May 2009

Chris,

I thought it was a hemroid, so I saw my gyno, who reffered me to a gastro who said it could be a hemroid, who reffered my to a general surgeon who said that is not a hemroid, where I had a colonoscopy and biopsy to dx my cancer. I was then reffered to a onc, who wanted to treat me with the standard nigro treatment.

At that time I wanted a 2nd opionion and went to a very well respected colo-rectal surgeon. After the colo-rectal surgeon examined me and we discussed my treatment plan, in which, he totally agreed with, I started the standard treatment. I have only had biopsys. Now if my surgeon had wanted to remove the cancer, I would have done that, but also would have followed up with the standard chemo/radiation to remove any cancer cells that were still present in my body.

Lori

sissy310
Posts: 300
Joined: May 2010

Z and Chris - I found it interesting to see that you were moved around a bit before they found something. I did go to my MD first and he gave me suppositories and such for hemorrhoids and even felt around and said there was one big one, the colo-rectal surgeon also did investigate and said yup, hemorrhoids and scheduled the surgery. I went back at one point to my regular MD thinking I might have had a prolapse because I had one in 2002 and it felt the same but he said no (even did a pelvic). Through all this neither one saw the tumor until I had the surgery and they went in. That does not give me much confidence and from what I am reading with your posts here being an educated patient who is armed with information and asks questions is the best way to go. My brother (who is in remission right now with myeloma) told me to request a PET scan to be sure it did not spread. Do you think I should do this? Marilyne (aka Sissy)

mp327's picture
mp327
Posts: 2847
Joined: Jan 2010

I would think your doc would have to order a PET scan for you to stage your cancer. Before doing any treatment, they need to know what they are dealing with, such as lymph node involvement or spread to any other organs.

mp327's picture
mp327
Posts: 2847
Joined: Jan 2010

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!

lil lady
Posts: 36
Joined: May 2009

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

z810840b's picture
z810840b
Posts: 212
Joined: Jan 2010

hi chris-I went to a colorectal surgeon for a colonoscopy and he found it.I did not need surgery.I was told 20 years ago thats how it was treated...but not today.He became my main doctor with oncologist and radiologist.They all worked together,but colon dr. was the boss.The treatment wipes you out,but its only for 6 weeks.It is very treatable and odds are very good.Good luck

pjjenkins's picture
pjjenkins
Posts: 173
Joined: Mar 2009

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
Posts: 53
Joined: Mar 2010

You all are so wonderful to reply so quickly due to my upcoming appt. I have also gotten good information reading the other postings. I'm sure I will have more questions in the upcoming days, weeks and months.

You all give me strength and hope.

Chris

Chris3
Posts: 53
Joined: Mar 2010

You are all so wonderful to reply so quickly due to my upcoming appt. I have also gotten good information reading the other postings. I'm sure I will have more questions in the upcoming days, weeks and months.

You all give me strength and hope.

Chris

Chris3
Posts: 53
Joined: Mar 2010

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

z's picture
z
Posts: 1251
Joined: May 2009

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

mp327's picture
mp327
Posts: 2847
Joined: Jan 2010

Chris--

I had some really crazy dreams while I was in cancer crisis mode too! I couldn't shut my mind off, awake or asleep! I wasn't on a forum during that time, so no one was there to help me get down the mountain. But I'm so glad you aren't going down alone and we'll even serve up some hot chocolate for you when you reach the bottom!

Chris3
Posts: 53
Joined: Mar 2010

Tuesday afternoon I saw the Colorectal Surgeon for a consultation. He seemed smart, competent and kind. At least he seemed kind until he snapped on those latex gloves. Yikes!

Anyhoo, he has referred me to a Medical Oncologist. He also comes highly recommended. The plan (at this point) is radiation/chemo mix... just a couple more tests and scans (CT & PET)to make sure. My appt with the Med Oncologist is scheduled for Wed. 3/24.

I just want to move things along briskly (but also making informed decisions) so this thing doesn't have more time to grow!

Thank you all again - you are the best!

Chris

Wendy L
Posts: 1
Joined: 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!

z's picture
z
Posts: 1251
Joined: May 2009

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's picture
mp327
Posts: 2847
Joined: Jan 2010

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!

JDuke's picture
JDuke
Posts: 443
Joined: Nov 2009

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
Posts: 53
Joined: Mar 2010

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

mp327's picture
mp327
Posts: 2847
Joined: Jan 2010

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!

pjjenkins's picture
pjjenkins
Posts: 173
Joined: Mar 2009

Hi, Chris,

I hope your first day has gone smoothly. Please tuck your fanny pack (you have one I assume) in well tonight though I have not seen that any of us had any significant problems with them... they can be just plain annoying.

The jello idea I really like! I had some nausea but not until late in the week and that first week was not bad - the meds work! I did work at the beginning of my treatment and only stopped because my family insisted that get the rest they think I needed and I didn't resist their loving care and kindness- indeed feel sure it was part of why I got through it all as well as I did.

May your treatment go well and your results be like most of ours!

Keep us posted,

Priscilla

z's picture
z
Posts: 1251
Joined: May 2009

Hi Chris,

I couldn't wait to get started either. I had my mom come over my 1st day of chemo. I was just so scared to have the chemo. The 1st time I cried after my dx was the day I asked my mom to come over on my 1st day of chem., I guess the reality finally hit me, that I had cancer. After the 1st day I adjusted rather quickly, and tolerated the chemo very well. I only took the nausea meds twice. I ate a lot of soup, which was soothing and tasteful. I also drank a lot of water.

You mentioned the trial had cisplatin, I haven't heard of the other Cetuximab. Another anal cancer survivor has been treated with the cisplatin and 5FU, she had lymph node involement also. I had the myto and 5FU as you will be having. My onc said he prefers the myto, due to less incidence of colostomys and therefore meaning less recurrance. Although the cisplatin has proven to work also, I beleive theres only about a 4% difference in the stats for recurrance using the cisplatin instead of the myto.

It sounds like you have lots of support and drs you like. I think the scariest part is not knowing how it will feel, but after you realize that the chemo is tolerable, you'll be fine. I know when I went to get hooked up for chemo, there were as young as 18 year old patients, and as old as 80 years olds, and I knew if they can do this so can I. I wish you well, and keep us posted. Lori

lizdeli's picture
lizdeli
Posts: 520
Joined: Jul 2009

Hi Chris,
I am the person who had Cisplatin vs. Mitomicyn (never could spell that). I did not get anythig called Cetuximab though. Of course I had the radiation as well. I had a lymph node light up in the pelvic area as well, it was about 6mm in size. My tumor was 2 cm in size. I finished treatment in Sept 2009 and my first follow up in Dec 2009 came back good with no signs of cancer. NED as well call it (No Evidence of Disease). I don't think Cisplatin is hte trial, but the Cetuximab must be part of it. I had very little side affects from the Cisplatin, fortunately. The treatment in general is not easy, radiation can be tough as you get closer to the finish line for treatment. But you will get through it and there will be lots of people here to help you.

Wishing you well and a speedy and successful 6 or 7 weeks of treatment.
Liz

Chris3
Posts: 53
Joined: Mar 2010

Hi Liz,

I'm glad the Cisplatin protocol worked well for you. I just didn't feel comfortable with the change. I had read the same studies that Lori mentioned in her post. My Med Onc said there was a newer study that showed Cisplatin comparable to Mitomycin but he never showed me the info. The Cetuximab (aka Erbitux) is supposed to starve the cancer cells of their blood supply. It has been used successfully with squamous cell cancers of the head and neck, so the theory is that it may be effective on the squamous cell anal cancers. And while the Cisplatin was on Wk 1 & 5, the Cetuximab would need to be administered weekly on Days 1, 8 , 15, 22, 29, 36, 43 & 50. I just wasn't onboard with waiting an extra week, so I just decided to stick with 5FU/Mitomycin.

I like the tip about the Jello - I will definitely make sure I have some handy in the fridge. It does sound like it would be something the would be very soothing to the stomach.

Thanks again to all.

Chris

Chris3
Posts: 53
Joined: Mar 2010

Hi All,

Yesterday's inaugural chemo and radiation treatments went great. No adverse reaction to either of the treatments. (They said I may crash a little bit on Day 2 - on Day 1 I received some steroids which probably gave me a little energy boost.)

The worst part of the day was when my cousin and I went to a nearby restaurant for a light dinner. The restaurant is also a local brew pub. It about killed me to sit in that place without ordering a beer!!!

Take care.

Chris

mp327's picture
mp327
Posts: 2847
Joined: Jan 2010

Hi Chris--

I'm so glad that your first day went well with no problems. Gradually, you may begin to feel fatigue coming on, so get plenty of rest and drink PLENTY of fluids! I would also recommend beginning to gargle with water and salt or baking soda to prevent mouth sores. I wish you continued good days!

z's picture
z
Posts: 1251
Joined: May 2009

Hi Chris,

I'm happy your 1st day went smoothly. Now the cancer is getting its due medicine and it will be gone soon. I know my 1st chemo day, we ordered a pizza and my mom and friend and her baby came over. I asked my friend to bring the baby, because the baby made me feel happy. I know that by about the 3rd or 4th day I started to get tired, with the combined effect of both the chemo and rads fighting the cancer. I was fortunate that I was able to take off work for 2 months. I know I was always tired before my dx. After treatment was completed and all the chemo/rads out of my system I started to feel better than I have in years. I wish you well. Lori

z's picture
z
Posts: 1251
Joined: May 2009

Hi Chris,

I'm happy your 1st day went smoothly. Now the cancer is getting its due medicine and it will be gone soon. I know my 1st chemo day, we ordered a pizza and my mom and friend and her baby came over. I asked my friend to bring the baby, because the baby made me feel happy. I know that by about the 3rd or 4th day I started to get tired, with the combined effect of both the chemo and rads fighting the cancer. I was fortunate that I was able to take off work for 2 months. I know I was always tired before my dx. After treatment was completed and all the chemo/rads out of my system I started to feel better than I have in years. I wish you well. Lori

winnipeg
Posts: 24
Joined: Apr 2010

Chris if there is any difficulty with your case, you can tell your doctors that I am 2.5 years out from a diagnosis of Stage 4, liver mets, no nodes, and was got into this condition with chemo: Carboplatin, Taxol, and Xeloda (oral 5-FU). My full remission, due to lingering disease near my anus, was reached a year ago. My liver's been clean since 6/2008. This was proven with a 4-hour laparotomy on 3/13/2009, which is an open liver surgery, during which cancer was assiduously sought but not found.

Winnie

Onc: Dr. William Stanton III, San Diego, CA area code (619).

sissy310
Posts: 300
Joined: May 2010

Last Friday I had some hemmoroids removed due to bleeding and pain. Unfortunately the surgeon found a tumor and removed 'most' of that. Had it biopsied and it turned out to be a squamous cell tumor. I do not know what stage, what size, where it was located or anything yet. Had a colonoscopy in 07 and that was clean except for one polyp so this started occurring from that point until now - only do not know when. Started having hemmoroid issues in May of last year around the time of my son's wedding - off and on, bleeding etc. Did not get worse until the last few months. I have appts in the next couple weeks with more specialized color-rectal surgeons (one from the Univ of Minnesota) so I started to investigate and research everything I could about anal cancer and found this site. What a blessing it is. I wish it did not exist however because I realize all of you are going through your own trials but it is a blessing to be able to hear what everyone else has and is going through, what to expect, what to look out for, what to ask and simply for the camaraderie and support that resonates through these posts. I'm right now just scared...not sure what to expect, fearing that it has spread. I suppose I have to wait until I see the surgeon next week as a follow up and then meet with two other 'more experienced' surgeons with this type of cancer. The reason I'm meeting two is my regular MD wanted me to have a choice as to who I'd feel more comfortable with...for me I just want to get going and kick it's butt. I'm 62 btw and never had HPV. Okay, that is about all I have to say right now. I am writing down a lot of information from this site from all of you to take with me to these meetings and will continue to come on here and read as well as research some more. My heart and prayers are with you all.

z's picture
z
Posts: 1251
Joined: May 2009

Hi Sissy,

Sorry you had to find this site. Welcome. Its great that the surgeon was able to remove most of the tumor. I completed tx on 6-30-09, and so far theres NED (no evidence of decease). I was dx Anal verge cancer stage II NOMO. I went throught the standard nigro tx. Dr. Nigro found this tx years ago, and it is considered the standard tx for anal cancer. Remember anal cancer can be cured. That was the 1st thing my general surgeon told me after telling me this looks like squamous cell carcinoma. It sounds like you have good drs on your side and they will tell you what to do next. Another site with great information about anal cancer, and anal cancer survivors is the rare cancer alliance web site. If you google it, you will find it and have to register, and it will take up to 48 hours to get a log in. Keep us posted. I wish you well. Lori

sissy310
Posts: 300
Joined: May 2010

Thanks Lori for your information and support. I truly am sorry we all have to be in this site but am thankful that we share some common bond to support one another through all this. When I started to research all this after finding out yesterday morning it was squamous cell, the information out there can really freak you out if you do not know where to read or go. Finding this and reading what others went through has helped markedly. Did read about Dr. Nigro. Dx I am assuming means diagnosis? Tx? What does that mean? Treatment? I will learn as much as I can and be as supportive to everyone in here as well. Right now I am waiting to hear what the numbers are so I have some baseline to work with. I will go in and register on the site you suggested as well. I'm one of these who believes you can't learn enough about anything (much to the dismay of my regular MD). Thanks for responding. I'm still learning how to maneuver in this site. Be well, Marilyne

pjjenkins's picture
pjjenkins
Posts: 173
Joined: Mar 2009

Hi, Sissy,
Sorry that you got our diagnosis...dx... but the thing to keep in mind now is that a large majority of us beat this thing.

I remember those first few days... a numbness and bit of denial right along with the internet searching for information. Lots of quick learning and scariness. I started my venture at age 64 and just had my followup for second year past treatment ...tx... and have NED (No Evidence of Disease).

You sound like you have one of the best traits with this disease- willingness to learn and readiness to be a partner with your doctors. Always ask questions! Advocate for yourself!

Last statistic I heard is that fewer than 5000 people get this each year so it is rare. This site is a treasure trove of info and I always thank Joanne who started it a half year ago.

You mention surgeons. I think a good gastroenterologist and medical oncologist are your likely next referrals. Since you had surgery, I don't know if radiation is in your future. Most of us had radiation and chemo. Few of us have had surgery - at least on this Board.

Whether one works through tx or not depends on a number of variables. I stopped working about two weeks into treatment but did a few outside things anyway (I was running for office and attended training sessions for that). But mostly I had treatments in the morning, breakfast afterwards with my mate, slept til soup for lunch and then movies etc for the rest of the day. My husband was working from home and had few assignments during that time so he made me watch lots of interesting stuff with him. My daughter became our chief cook and bottle washer (her church friends prepared and froze 30 meals!!) and lots of church friends cooked many meals. I was blessed. Most folks here didn't have all these supports.

Come back often and ask quesstions here, too.

Best of Luck-
Priscilla

sissy310
Posts: 300
Joined: May 2010

Thank you for your upbeat comments, advice and for putting a little lift in my heart. Right now I just feel like I do not KNOW enough. I'm one who needs information, more information and then some. When I had my hysterectomy in 1995 (prolapse,no cancer) I read so much and learned so much I was sure I could perform the surgery on myself. :-) But this is different and from reading everyone's posts, it is a 'fight' so to speak that includes everyone: self, doctors, family, friends...and I'm beginning to understand now that this type of venue where more support and friendship is gleaned and grown is also important, not just for me but for all of us. I'm not a taker, I'm a giver so it was hard for me to come into this site because I knew in seeking the information I would have to open myself up and actually say out loud what was going on. I still have not told many of my friends here in this state but told my two best friends in another state I originally lived. I want to wait to hear what the depth of this is as I still do not know much. It is all so new. I believe the surgeon got 95% of it and mentioned I had to have the rest burned out. My brother (who suffers from myeloma) also suggested a PET scan which I will bring up when I ask the surgeon what course of action he plans on taking. My two greatest fears right now is that it spread, was very large and that it went to other parts of my body. I think if I can alleviate at least the latter one I can relax somewhat. I am happy to hear that you are two years NED...I'm starting to love those letters...Thanks again. I will continually look in here to see if I can be of help to others as well once I learn what all this entails. Thank you. Be well. Marilyne

pjjenkins's picture
pjjenkins
Posts: 173
Joined: Mar 2009

Somewhere here on the board there is a reference to a study showing that PET scans have an edge over CAT on observing any metastasis. I will see if I can rustle it up this weekend or maybe someone else remembers where it is cited.
Priscilla

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