Newly Diagnosed

I was just diagnosed with anal canal cancer.  This is all going so quickly, and I don't think it has really set in yet...  

I am inspired by the stories I have read of fighters and thrivers and plan to embrace the strength and positive attitudes.  Thank you to each of you for taking the time to share your stories, because there is so little information online about this diagnosis and the unknown is so very scarey.

I have not read much about the phase I am in of assessing the situation and making decisions.  I have met with my oncologist and met with a surgeon yesterday, who says that although my growth is small (about 1cm) and tempting, he would not operate due to the risk of damaging the sphincter along with other complications of surgery.  I have accepted that chemo and radiation are the standard treatment and really never gave surgery a thought, but have family members who would like to see me avoid radiation.  I believe that surgery would include radiation and chemo anyway.. so first choice made.

My CT Scan thankfully shows no sign of metastases in the nodes or surrounding organs, but my oncologist wants a PET Scan to verify.  That is scheduled in two weeks and in the meantime I will be getting a port and getting ready for treatment.  

My concern now is that my case seems different in that I had two squamous cell cancers removed within two months from my calf and shoulder.  My dermatologist was the one who thought this might mean something more was going on and sent me to get a colonoscopy.  Is there some connection between the growths and does that signal metastases?  My doctors don't seem to know yet and I was wondering if anyone else had a similar experience.

Thanks again for being here.  I don't feel alone!

Maggie sent you a hug.
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Welcome to the club no one wants to be part of...BUT here are the most wonderful caring friends you will ever meet. Sorry to make your acquaintance this way.
I just did a quick Google of skin cancer and HPV, and yes, apparently they can be related. Learn something all the time. As you may know, HPV is the prime reason for anal cancer, (and others). I commend your dermatologist! Did they test your skin cancer for HPV, do you know? I doubt that it signals mets though, especially since your scan was neg.
There has been surgical excision of very small tumors, with close monitoring and chemo only, no radiation. HOWEVER, it depends on where in the canal it is, and if the surgeon is very experienced. It also requires checking margins frequently, so that results in follow up biopsies. My cancer nurse colleague wondered if I would have considered that option, had it been posed to me. Radiation effects can show up later and affect people differently. I still don't know if I would have chosen that route, but it was 5 years ago, and progress is ongoing. It should only be considered if the physician is confident it will spare the sphincter permanent damage. Not to throw a monkey wrench in your decision, but yes, it is being done sometimes thus avoiding radiation.
Another option that is infrequently offered, (because not all facilities have it), is brachytherapy. Replacing the final radiation treatments that "hone in" with internal treatments. This confines the radiation to the canal and helps spare the vagina. I was lucky enough to have this option, and am able to have sex with very little stenosis issues.
Did they give you prep instructions for your PET scan? I had very specific instructions, and you want the very best images possible. Also, have them burn a CD for you, they will use it for planning, and be sure to keep it for yourself later. I recommend that everyone keep copies of everything, and it is much easier to get them one by one than try to get them later, especially if your dr. retires, moves, etc. Is it obvious I am a nurse, lol.
I know your head is spinning, but we are here for you, so don't hesitate. Someone is on here 24/7, it seems like. I was up at all hours, and seemed to get immediate responses. And yes, I am 5+ years out, and doing well!
4 people like this comment
Thank you! All very good advice and I will begin collecting copies of all my results. I am overwhelmed, but am appreciative of any knowledge I can gain that will help me be my own advocate and manage my own care instead of just staring straight on like a deer in the headlights! Which is how I feel right now.
So happy to hear you are doing well and 5 years out! I'll get there!
Welcome to this AC blog, great support group even if you wish you didn't have to join. I have no answers for you on the squamous cell on your calf and shoulder, but this is the same cell and I feel quite sure there is a connection. Your dermatologist was on the ball, must be one of the good guys.
This is a very difficult time to be going through, and difficult to get information about this cancer on the web. I really needed this group and it helped me so much I cannot begin to describe! Take care, we are here for you!
Maggie likes this comment
Thank you!
I am never happy to see a new member come into our group, but I welcome you and am glad that you have found us. There's a wealth of information here and the support is absolutely the best. Ask a question and you'll get answers for sure! As for the connection between the cancer found on your calf and shoulder, I'm not sure about that, but perhaps this is a sign that you are more susceptible to this type of cancer. However, as you know, most cases of anal cancer are HPV-related.

I'm glad your CT scan showed no mets, a very good sign, and that you are most likely Stage 1. As you've already mentioned, chemo and radiation are the standard treatment. While it is absolutely no fun, it is totally doable. I was treated in 2008 for Stage 2 with 2 rounds of chemo and 6 weeks of radiation and here I am, 10 years later, doing quite well. I remember being quite fearful before treatment, but once it started, it helped a lot to know that I was finally doing something to fight the disease. I hope it's the same for you.

I highly recommend registering on the site for the National Comprehensive Cancer Once you do a quick registration, you will have access to the latest guidelines for the treatment of anal cancer, along with lots of good information about the disease. Knowledge is power and it will help you in discussions with your doctors.

You are definitely not alone here--we will do our best to help you through this--just tell us what you need! I wish you all the very best and hope you'll keep us posted as you move towards the beginning of treatment.
3 people like this comment
Thank you and yes, I am ready to get started with doing something about it! My PET scan is not for 2 weeks, and I just want to get it done.

Thank you for the advice, I will register, and also for your words of encouragement. 10 years, that wonderful!
Smurf likes this comment
Hi Alicia, Like you I found this group also just recently and recently diagnosed. I had a fissure that id been treating for 2 years,then a lump popped up on my lymph gland which drove me to the dr. I was sent to a surgeon,he did a biopsy and came back as squamous cancer. I'm getting my port put in this week with treatment starting next week,6 weeks of radiation,with 2 rounds of chemo.I'm thankful to find and talk with other people going through the same thing. I've made up my mind to be a fighter in this bump in my life and come out stronger than ever and you will too.
Alicia, Smurf like this comment
Hi Sandy, as others have said, I am sad to meet you this way. I am meeting my radiation oncologist tomorrow and getting my port put in on Tuesday, but don't have a start for my treatment yet.
My doctors are telling me it will just be an annoying bump in the road of life as you have said and I am trying to embrace that attitude, but it almost doesn't seem real yet... One day at a time..
Welcome to this unique site. I felt so blessed to have found it when I was diagnosed. I just completed treatment 10/8/2018 and now trying to cope with post treatment issues and accepting the new normal. I applaud you for wanting to take some control and at least educating yourself as you are meeting with your medical team. The fighters on this site have gone through everything you are about to and will be a great help to you as they were for me. I am still learning so much as I continue to read all the replies to the postings. As for the other squamous cells on your skin, could be related or not. Hard to tell. We are here to share whatever issues you may have. I was my own quarterback throughout the whole process and chose my team after I obtained several opinions (3 different oncologists and 4 different radiation oncologists). I inquired all options from types of chemo to types of radiation and associated side effects of treatment options. If it helps to throw stuff out on this blog before u move forward with decisions, we are here for you.
Maggie likes this comment
Hi Alicia....looks like we are close in treatment time. I'm just starting week 2 today. We could stay in communication if you would like?
I would like that very much, Cheryl. As I just said in reply to your last post, you make me laugh and I think that's a good thing!
I had my simulation for radiation today and meet with my oncologist on Friday after a PET Scan. My first radiation is scheduled for Dec 27th.
Did your side effects start right away, or is two weeks about when they set in?
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Vital Info


November 29, 2018

Hot Springs National Park, Arkansas 71913

April 18, 1963

Cancer Info

Anal Cancer

Skin Cancer

Squamous Anal

November 17

Stage 1

0.1 - 1.0 cm



Genesis Cancer Center

February 15

None for the anal (I have always had irritable bowel) except 2 squamous skin on calf and shoulder and my dermatologist told me to get a colonoscopy because the outside can signal what going on in the inside,


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