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Just Diagnosed

pamela_preib's picture
pamela_preib
Posts: 51
Joined: Nov 2012

Wow, this has just been a whirlwind for me. I was sent in early (age 48) for a colonoscopy after a nasty bout of diverticulitis. I was so surprised to get a call back with a cancer diagnosis. Right now I feel like the hardest part is all about waiting. I got the call on November 17th after having the colonoscopy two weeks earlier. I was referred to Huntsman Cancer Institute and will be working with a very renowned surgeon there. Unfortunately I won't even get to consult with him until Dec. 6th of next week. All anyone has been able to tell me thus far is that it looks small and they are optimistic. Having been thru melanoma before I am familiar with all of these panic feelings, but it is still very hard to sit around and wait. They were originally concerned that this started as bladder cancer so I was sent in for ct scans as well as a cystoscopy to rule that out. Thank God no signs of any cancer there. I think this all stemmed from blood that had showed up in urine test. At least they are being thorough. I have no idea what stage I am at and was wondering how they test for that? With melanoma is was measured as to how deep the tumor was set, but I'm confused as to how that is measured in this circumstance. Does a PT scan tell the docs that?

The urologist from Huntsman was able to shed a little light on things for me. I was so freaked out about the idea of surgery in that area after reading a few stories. He told me that my doctor is not surgery inclined and radiation and chemo are options. I wasn't sure how I felt about that. But with all your success stories I'm feeling a lot better. This sight was so helpful. I was up at 2:00am and couldn't sleep and decided I'd go down and try and find a support site. I read Gigi's story and wow. I went to sleep and woke up feeling so much more confident.

The other part of this anal cancer thing is the stigma attached. At first I was calling it colon cancer out of embarrassment. I've gotten better at being truthful as the first time I confided in a friend from work her respone was "well at least it's not anal cancer, I have a friend..." and she went on to tell a horror story. Honesty is the best policy I've found when sharing my predicament. This site is incredible.

-Pam

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

Welcome, Sorry you had to find us. My general surgeon said that if you had to have cancer, this is the curable one. I have no evidence of disease after completing treatment 6-30-09. I was a stage II NOMO, the cancer was at the anal verge.

I feel better than I have in years, allbeit, I quit smoking before treatment and I'm sure thats a good reason I feel better. Keep us posted, and I wish you well. Lori

Marynb
Posts: 1134
Joined: Aug 2012

Hi Pam,

I am sorry about your diagnosis. It is good that you have found this site. I don't know anything about Huntsman, not being from that part of the country. Just make darned sure that the treating physicans specialize in anal cancer. I understand the stigma that you feel. I do think we all need to come out of the proverbial closet on this one sooner or later, to raise awareness. You can honestly say that you have rare gastrointestinal cancer. That always works for me.

Waiting to see doctors must be tough. This cancer is usually very treatable and has a high cure rate. I think for the most part, radiation and chemo is the accepted protocol. Surgery for this cancer is quite rare in the USA.

Pam, you will be in my prayers. Try to sleep well and eat good nutritious food while you are waiting for treatment. Make sure that you use this time to do your homework on hospitals and doctors. You should get the best treatment possible. Cure rates do vary by hospital.

Everyone here is very helpful and will be here for you. You can and will beat this!

Hugs.

Mary

7243
Posts: 223
Joined: Feb 2011

So sorry this is happening...however huntsman is a great center and in fact at least one of the physicians at huntsman works on the NCCN anal cancer guideline working group! This is such good news for you.

Waiting is tough ... But rest assured there is no huge rush. You have time and it took years for the cancer to grow, so although the 6th seems so far away ... It will come.

A big hug to you!

Ps: get ahold of the NCCN anal cancer guideline to read And be prepared for your appointment!

Marynb
Posts: 1134
Joined: Aug 2012

Hi. I am wondering about what you said about taking years for the cancer to grow. I have wondered about that. Is that true? Wondering how fast this grows and spreads. Thanks.

7243
Posts: 223
Joined: Feb 2011

My oncologist encouraged me to take some time gathering information as There was no "immediate" threat ... I was stage I. Now not many weeks or months but a couple weeks. He told me it takes time for cancer to develop. For example it takes years for dysplasia to develop into invasive cancer ... A tumor.

I know this is somewhat vague and all cancers are different. I read a book when first diagnosed that was so helpful ... Written by a physician. I recall he emphasized taking a deep breath and slowing down in the early diagnosis phase in order to gather all necessary info and to make a treatment plan that is based on evidence. We want to move quickly to get started fighting and because we're so darn afraid and anxious... But a measued approach is wise!

I suggest you discuss this with your oncologist ... He/she is you best resource and all cancers and cases are unique!

Xoxo

mp327's picture
mp327
Posts: 2895
Joined: Jan 2010

I'm always saddened to see another newbie join this group, but I am glad you have found us for support. I'm sure you have lots of questions at this stage of the game and I hope you'll ask us. We'll try to answer any we can, based on our own experiences. We are not doctors, but sometimes we know more than they do! I would first suggest that you visit the website for the National Comprehensive Cancer Network (NCCN.org) and register so that you can view and print out the most current treatment guidelines for anal cancer. They are very informative and will allow you to ask many questions of your docs with some idea in advance what the answer should be. Also, the website analcancerfoundation.org has a lot of good information. One more that you should check out is analcancerhelp.info. The information on that site was compiled by a friend of mine who is an AC survivor and was gathered from other survivors such as myself.

Chemo/radiation is the standard protocol for treatment of anal cancer, so your doctor is on the right page. To stage your tumor, you will most likely have a PET scan. You didn't mention whether or not your doctor has ordered one for you. If not, I would definitely ask for one. While the chemo/rad is rough, it is only for a short period of time, usually 5-6 weeks, and most folks get through it without serious complications. That's where we come in. We can help you get through it with a minimum of side effects, as we've been there, done that.

My approach regarding telling people about my cancer has been one of knowing who my "enemies" are. In other words, I have been somewhat selective as to who I've told--only people who I can trust to not be judgemental. It's up to each individual and you'll know the right thing to do for yourself. As you've already learned, some people can be quite insensitive.

I am over 4 years post-treatment now and am feeling quite good. I am very active, as I am a runner and weight train. I completed my first marathon last April! For the most part, I have no permanent side effects from the treatment, minus the occasional blip. So, I hope after reading everyone's comments here, you will be feeling much more positive about this journey you about to take. You have every reason to be hopeful that after treatment is done, you will be living your life without cancer. I wish you all the best and hope you'll keep us posted as things progress towards day 1 of treatment.

RoseC's picture
RoseC
Posts: 503
Joined: Jun 2011

Hi - Welcome to the group. So glad the chance of bladder cancer turned out to be nothing. You're in a good (actually, excellent) group to be in - the folks here are wonderful and will help you through anything and everything.

My stage was determined through a biopsy and Petscan. Between the two they were able to diagnose me as stage 2.

Anal cancer is totally curable. There are side-effects from the chemo-radiation treatments ranging from mild to severe - but the cancer is not only treatable but curable.

As for the stigma, yes, it's rather tough. I just pointed to my middle section and told people it was 'somewhere down there' and no-one asked anything further. Course I work with mostly guys, so it's likely they never would ask anything further. Just point to the nether region and they go completely silent. :)

sandysp's picture
sandysp
Posts: 786
Joined: May 2011

Patience is a virtue I did not come by naturally. But it is a very good virtue indeed at this stage of your diagnosis, and determining who will treat you and how.

I was given some very bad advice by two prominent physicians that I needed surgery - a colostomy procedure. I am very glad a friend called and friend and a Colo rectal surgeon called me and told me if he had what I had he would go to Memorial Sloan Kettering and he was head of the colo rectal surgery department in an excellent hospital in a large metropolitan area in Connecticut!

Because our cancer is very rare and very treatable, I think all the advice Martha and others have given you is excellent.

I hope you are in an early stage and perhaps what they are talking about is appropriate. I was stage 3 or T2N1. I am very grateful it was caught in time. My last treatment was August 15th 2011. Like you, my early scans revealed some other scary stuff that just helped me realize how lucky I was to just have anal cancer.

All the best to you! I benefited greatly by staying close by this board. Others will tell you that this point in time was the most difficult. It was very hard for me. Once you are on the right course of treatment for your particular cancer diagnosis (mine was squamous cell, for example) you'll feel like you are on your way to getting better and you will be.
Sincerely,
Sandy

geneviasue's picture
geneviasue
Posts: 89
Joined: Oct 2012

I hate that your diagnosis has brought you here but I'm glad you found this site. This site is amazing and the people here are like family. They will hold your hand (figuratively speaking) through each step if you need it and will guide you through each hurdle. I know personally that sometimes just knowing that someone else was facing the exact same cancer and treatment I was made it easier to bare. It gives me someone who truly understands everything. That's who we will be for you too.
Embarrassment? I'll tell you a funny story..I mean crawl under a table story. On the day of my diagnosis, I texted my pastor and shared the diagnosis. He asked if he could share it on our prayer line. I agreed without thinking about how he would word it. Yea, you guessed it. He used the word ANAL in a church email. I think my friends thought I would leave town after that but I guess that was the shock I needed to realize that honestly that was exactly how I needed to say it. I did ask him not to mention it from the pulpit that way though..in case of visitors. lol. I really think it's far more uncomfortable for others than it is for us. We have a cancer to kill and we really don't care what we call it as long as we call it GONE!!
I'll keep you in my prayers and feel free to reach out anytime..to anyone here. We are in this together.

God Bless
GiGi

lizdeli's picture
lizdeli
Posts: 521
Joined: Jul 2009

Welcome with my regrets that you need to be here though. This is an amazing forum and everyone will be here to help you through it. I mirror what the others have already posted. The "stigma", well I still find myself whishpering from time to time when someone asks me what type of cancer it was. It's the "look" I get that after I tell someone. Actually it's a blank stare and then my mind wonders what they are thinking. About a year after I finished treatment, I was asked to speak to our church congregation. I have to admit, I somewhat fibbed in church...sort of. I described it as "colo-rectal" in nature. I just couldn't stand in from of 300 people and say "anal cancer". I've become more open about it and less concerned with what other people think, but it takes time. What is much more important than all of that is the fight we put up against the beast. Only those that go through it can understand.

I hope you get your treatment plan outlined for you soon so that you can move forward and defeat this horrid beast of a disease.
Wishing you strength and healing,
Liz

Cheyenne's picture
Cheyenne
Posts: 72
Joined: Apr 2012

I was diagnosed with anal cancer also after a routine colonoscopy. It was caught in the very early stage. I did have surgery and it wasn't as bad as my anticipation of it. I was able to start chemo/radiation just short of 4 weeks after the surgery. The news of the cancer came on March 29th. I had the surgery on April 10th. Treatment started May 6th and ended June 11th. The worst was absolutely the waiting. That and losing a lot of hair. But if that's the worst side effect, I can't complain! Good luck to you.

pamela_preib's picture
pamela_preib
Posts: 51
Joined: Nov 2012

Thanks to everyone here. This is my big week. I get my first meeting with my surgeon for a consult on Thursday the 6th. Have no idea what's in store. It's going to be a long week but I will be busy working and trying to get ahead of my holiday shopping just in case. I know you all have probably had the same feelings I have had lately at one point or another. So helpful to hear your stories. It's funny how I just get overwhelmed with emotion at times out of the blue. I don't feel such despair since reading this site. You are all very impressively strong women and such great mentors. I know if I have questions along the way I will find answers thru all of you. I will keep you posted when I get my next step on Thursday. Did any of you take anything for sleep. I have issues with anxiety so take Xanax occasionally for driving freeways, etc. My primary doc told me to try that for sleep. It seems to help but I'm not sure I want to be taking Xanax every night as it can be habit forming, but I guess all sleep aides are habit forming. I work at our public library and plan to try and keep a few shifts a week thru all this so sleep will be important. Thanks again for all of your support. It so helps to know I am not the only one going thru this battle. :)

mp327's picture
mp327
Posts: 2895
Joined: Jan 2010

Thursday will be a big day for both of us, as I go for my first follow-up in 6 months with my colorectal doc. I hope it will be a good day for you and me!

I'm sure you are feeling overwhelmed right now, being bombarded with so much information. After diagnosis and before treatment was a rough period for me--life was a blur. If I can make one suggestion, it would be to have someone go with you to your appt. on Thursday to take notes. It is hard to absorb so much information and remember what was said. This way, you can focus on asking your questions while someone else can record the answers.

As for sleep aids, I was prescribed Ambien while going through treatment. I did not like taking it and tried not to as much as possible. I'm sure there are better meds than that one, which can have some scary side effects. I was also given Ativan to help with nausea and found it to be wonderful in relaxing me and inducing sleep, so that might help you.

Please let us know how Thursday goes and what will take place next for you. This will all be okay in the end (no pun intended!).

7243
Posts: 223
Joined: Feb 2011

Sending support for this difficult week! Hang in there.

I was so anxious and did not sleep well for months...here is what worked for me.

I was usually so tired by the end of the day of fretting, worrying, or due to treatment, I often times fell asleep on my own (if I couldn't I would take benedryl or Motrin PM). I would place an ambien and water next to my bed and when I woke around midnight, I would immediately take the ambien, put in my earphones and listen to guided imagery for sleep or positive affirmations and I would fall asleep for at least 5 or 6 good hours.

I also too Xanax as needed for anxiety.

Guided imagery helped me soooo much. Bellruth naperstek has a "cancer pack" of CDs that I loaded on my itouch and listened to during chemo and during radiation treatments ... When I was actually on the chemo chair and when in the rad treatment. The imagery focuses your mind on the radiation beam and the chemo and helps you visualize the process .... The radiation one was almost exactly as long as my treatment. Guided imagery and affirmations not for everyone but it helped me.

Guided imagery available through healthjourneys.com

Be strong! Xoxo

pamela_preib's picture
pamela_preib
Posts: 51
Joined: Nov 2012

I'm going to contact my primary care doctor today and get a prescription for Ambien. My mother and my friends all say it works wonders at even half a pill. The Xanax just isn't doing it for me. I'm still waking up every hour on the hour. Thanks for your input. Two more days to more information...

-Pam

islandgirlculebra's picture
islandgirlculebra
Posts: 135
Joined: Dec 2012

I just wanted to say that a wonderful nurse told me she "hates" Ambien because it's addictive, and she switched me to Restoril, which she said is not so addictive. I took that during my treatments and the months afterward and it helped immensely with sleeping. She also told me that sleep is vitally IMPORTANT because that is when your body heals. I also had to take oxycotin for pain relief from the radiation and that really made me sleep like a baby. (With no addiction problems afterwards). My best wishes to you - you can see from this network that there are many survivors of this cancer and you will be one of them!!

wiveliscombe
Posts: 47
Joined: Feb 2010

So sorry for your recent diagnosis but you have found a great place for info. and support. I was diagnosed in April 2012 and like all of us was very scared. I particularily was worried as I had just lost my husband to cancer and the thoughts of facing this battle alone was overwhelming but the people on this site were so helpful and comforting that I felt more able to fight. My treatment went OK and I finished it at the end of June. I was feeling good and was able to take my delayed trip to England in August with no problems.
The treatment is brutal but try to stay positive, get prepared and keep a sense of humour and you will get through it. Keep us informed.
Louise

pamela_preib's picture
pamela_preib
Posts: 51
Joined: Nov 2012

Okay, so I had a mole show up on the side of my toe that came out of nowhere. I'm a melonoma patient mind you so I do not ignore these things. I called my dermatologist, explained my angst and she got me in within two days. My dermatologist heads up the Huntsman board and I can't even remember her title but she knows her stuff. Her name is Sancy Leachman. She ended up taking a biopsy and dang that hurt. Stuck the needle in my toe and just took a chunk. Anyways, she pulled up my reports and she wants me to go back to my plastic surgeon/melanoma doc from Huntsman to see if he can perform moh's with this. Have you ever heard of such a thing? I see my colorectal surgeon on Thursday so I will definately ask him is this is a possibility given my location. I'm thinking not, but it was nice to hear there are even more options. In the meantime, my toe is throbbing and I'm thinking "enough already".

mp327's picture
mp327
Posts: 2895
Joined: Jan 2010

What type of cancer did the biopsy show on your toe? My husband has had mohs surgery a few times for basal cell. I hope this is not more melanoma in your case. You have enough to deal with right now!

pamela_preib's picture
pamela_preib
Posts: 51
Joined: Nov 2012

I just got the biopsy on my toe done today so I won't have those results for about a week. I had MOH's surgery on my face for melanoma two years ago. The thing I'm confused about is that she thinks you can have MOH's surgery done to treat anal cancer when it's squomous cells caused by HPV which is what caused mine. I've just never seen anything on this board about a treatment like that.Just wondering if anybody had had any experience with that. From what I can tell from reports I have invasive squamous cell carcinoma but it also says in situ on what report. I have no idea where I'm at. It is in the dermis for whatever that means. I just don't know that MOH's down there is going to be an option and will be interested to find out.

mp327's picture
mp327
Posts: 2895
Joined: Jan 2010

I can't really answer all of your questions, but I will tell you that from everything I've ever read about carcinoma-in-situ of the anal canal, it it not treated with chemo/radiation. However, if your report says "invasive squamous cell carcinoma," this seems contradictory to me, leaving me somewhat confused. So, I think you have a lot more questions to ask your doctor(s). I know that some people diagnosed with anal cancer have had their tumors excised and clear margins have been achieved (which sounds like MOH's surgery was used to me, but I'm not sure). However, I think most of them go ahead with chemo/rad to make sure any rogue cells are killed off. Anal cancer can be a sneaky beast and every effort should be made to rid a person of all bad cells.

I would say you and your doctors need to nail down whether or not you do have full-blown cancer or carcinoma-in-situ first, as like I said above, the treatment may be different. Also, I would seek a second opinion before getting any surgery to remove the tumor, the issue being whether or not radiation would be advisable afterwards if it found to be necessary. I would definitely ask the doctor who treated you for the melanoma if she's ever treated anyone else for anal cancer with the MOH's procedure and what their outcome was. You don't want to be a guinea pig here. Do your research and see if there is anything on the internet about this from a reputable source, of course. It would seem a good idea to me to have your colorectal doctor or other doctor(s) consult with your doctor who is considering the MOH's procedure. They really all need to be on the same page and in agreement as to the best treatment for you. I wish you all the best and hope you'll keep us posted.

pamela_preib's picture
pamela_preib
Posts: 51
Joined: Nov 2012

Well, I am just going to wait until tomorrow's appt. A woman could drive herself crazy trying to translate all these medical terms. I will hopefully have a one line, clear and concise, early and treatable diagnosis tomorrow. Thanks again everyone for all of your support. I feel like I'm chasing a ghost right now. I'm off to play with my horse and do a little Christmas shopping to keep my mind off it and stay busy. 10:00am tomorrow can't come soon enough.

pamela_preib's picture
pamela_preib
Posts: 51
Joined: Nov 2012

Well I will have a definate answer tomorrow but my report does read "Invasive Squamous cell carcinoma of the anus, minute focus invading into dermis at base of biopsy". There is a 2nd bullet point that reads "Focus of in situ squamous dysplasia" which leads me to believe the tumor is cancer and there is dysplasia as well that needs to be treated. Guess I will find out tomorrow for sure. Thank you so some clarity. I'm sure I will be back on the board shortly looking for more guidance.

mp327's picture
mp327
Posts: 2895
Joined: Jan 2010

I am not a doctor, but it sounds to me like you are interpreting the report correctly. It is possible to have both a tumor and dysplasia. I hope you get some concrete answers tomorrow. Good luck!

pamela_preib's picture
pamela_preib
Posts: 51
Joined: Nov 2012

Got a clear diagnosis from my colorectal surgeon today. The only thing not in yet is the results from my chest ct scan which he sent me on to after our appt. I am stage 1 which is what I suspected. He referred to it as stage 1 invasive anal cancer. My tumor is about 1 to 1.5 cm and I got to see it's ugly image today. Surgery is not an option because of placement which is in the canal. He set me up with my radiologist for Monday and my oncologist on Wednesday of next week. I feel relieved and scared all at once. Definately going to be a different holiday season for our family. It all feels so real now. I'm a cancer patient! Can someone remind me where the site for needed items for treatment might be? I know I saw it but can't seem to find it now. I was also going to ask if any of you kept your jobs working with the public thru the chemo portion of treatment. I work at a library with my hands all over dirty books and lots of public contact. Thank you and so glad you are all here.

Marynb
Posts: 1134
Joined: Aug 2012

I am glad that they found your cancer early. Hopefully, soon this cancer will be history soon. There is a list, but I am not sure where to find it. For now, I would tell you to get a handheld shower, some soft undies that you can cut, some soft sweatpants or something like that, or skirts. Later on you will want some aquaphor cream, or whatever your hospital recommends. That is about all that I can think of. For me, the handheld shower was essential. I hope you get started soon. Waiting is tough. I had my first round of chemo finish up on Christmas eve. Thank
God that they found it and you have family to support you. All will be well, soon.

mp327's picture
mp327
Posts: 2895
Joined: Jan 2010

I think you got some very good news in that you are Stage 1, which is very treatable. I have seen pics of my tumor and refer to it as my "barnacle," which is what it looked like to me. It sounds like next week will be a busy one for you, but you'll begin to feel like you are doing something to get rid of this thing as you get a treatment plan nailed down by your docs.

As for your work environment, you will be exposed to a lot of germs. It probably goes without saying that the less exposure the better, but if you must work, can you wear latex gloves to do your job? Having hand sanitizer at arm's reach will be a necessity. And as much as I hate to say it, having a surgical mask on hand may not be a bad idea for use when someone who is obviously suffering a cold or other malady comes near. I know someone who wore a mask anytime she went out in public while in treatment.

I will try to find the list on here and bump it up to the top of the topics for you.

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