Treatment Centers/Anal Cancer

Hi, and welcome (though I'm always sorry for the need)

You are right, being told you have a diagnosis of anal cancer can come as kind of a lonely slap in the face, yet here we are. I was initially dx with stage 3b anal cancer in 2011, after symptoms I somewhat ignored because life was happening finally got so bad, I knew I needed help. To be fair, my husband was very sick himself at the time, we had other family situations going on, an aging father, and more and so I kind of put myself on hold...big mistake!!

I live in Central Wisconsin and was treated through the Marshfield Clinic system with the protocol Chemo/Radiation regimen for that time. Cancer treatment is often changing, and I think it may have since then. It was tough, I won't lie, radiation to that area is no fun but in comparison to many other cancers the length of treatment is shorter and so that's a plus to keep in mind. Unfortunately (but it's all good now) due to the size and location of my tumor I also had surgery to place an ostomy...it was meant to be temporary but severe radiation burns and stenosis made a successful reversal not a great option. So yes, I've adjusted to that now too. A year after my anal cancer dx I was diagnosed with a rare unrelated breast cancer...treatment for that included a double mastectomy! Talk about getting used to the "new normal" ha...I had a whole different body! Anyhow, one way or another I kept moving on and in 2015 on a routine follow-up scan a mass was found in the left lower lobe of my lung...it was anal cancer metastasis! Yikes hello, stage 4. Luckily the mass was contained in that lobe and that whole lower lobe was surgically removed followed by chemo once again. Recovered and back to life, went back to college at 55 years old, graduated with honors, chasing grandkids around soccer fields and baseball fields, traveling and taking the good days with the bad because what other choice do we have really? Then, again on a follow-up in 2018 a new small mass was found on my airway (hilum) connecting to the lung on my already weaker left side...this time treatment was a very targeted course of radiation.

Knock on wood...as of today I'm doing well. There's been a few concerns that required further checks over the past few years but so far all is good. My body has taken its share of hits and some of that leads to minor on going side effects but really nothing too difficult to manage. I remember the day of that initial diagnosis and all the "what ifs" that ran through my mind, most of them all negative...I've learned now to say to myself "what if it all works out" "what if, at the end of the day my life is even better than before" "what if I just have faith"???

Believe me, it'll be rough at times, it's no easy walk both physically and mentally, and even after treatment is done and your poor tired body is on its way back to healing, there's that little bit of worry that if it happened once, will it happen again. It may, but then you'll handle it like you will now.

Sorry for the ramble, but as to your original question on where for treatment...if MD Anderson works for you that's a wonderful choice. It just didn't work for me to travel at the time, but I lucked out that my radiation doctor had come from that facility and was a help in getting a quality second opinion without my need to travel there. It turned out I was set to receive the same treatment here as I'd have gotten there, yet close to home, family, and supportive friends. Don't ever hesitate to ask for one, many doctors even encourage it.

As you continue, please keep in touch with questions and concerns as this is something that can be tough to feel truly supported except by those who have been there. This forum offers lots of tips and tricks to make the hard days just a little better and I know that I'd have been lost without them over the years! I will keep you in my thoughts for successful treatment and manageable side effects as you move forward.

katheryn

Hi sfsnc!

yep! It’s not exactly the most talked about cancer & until diagnosed I never gave it a thought that it could exist! I finished my treatment for a 3 b presentation almost 10 years ago. I found this group to be amazing for support and knowledge of how to get through such a peculiar journey. I also went through many old posts to gain information to prepare me. Because so many kind people shared their experience & allowed me to be prepared, my oncologist said that my proactive approach helped me have a ‘better experience & ability to cope’. I had a few wobbles of course, but I got through it (as will you). My portable bidet became a new best friend in the process. A thick sheepskin rug doubled over allowed me to sit more comfortably and I took snacks to radiotherapy whilst I whiled away the time by playing Candy Crush. I wore my long summer dresses though it was winter so that I could go commando though I bought some okish skirts and self supporting stockings (that didn’t)so back to the long dresses.

Please keep us informed on your progress & good luck

Hi! I was originally diagnosed last year as stage 3C. I ignored symptoms due to a demanding job and fear of being out of work if I didn't get my job done. It is very stressful for me because I had been out of work in 2010 after being laid off and it took me 2 years to find a job again. I'm an older worker. So I work VERY hard to meet all the demands of our sales people. I took care of that but didn't take care of me since I have always been very healthy. I think God put things in my way to push me to go to the doctor. Someone rear ended me and I was a little sore so I went to the doctor. I was misdiagnosed or just didn't appear to be anal cancer at that time. I was told it was a bleeding hemorrhoid so I carried on since I was moving in 2 weeks and had lots to do. The cream I was prescribed by the NP wasn't working but Omicron hit and I then had to go out of state to close down a storage unit I had for too many years! But I said to myself that when I get back I need to make another appointment because it isn't getting better and getting worse. That's when I was told instantly it was anal cancer, biopsied to confirm and then had radiation/chemo treatment.

My scans had been good and the doctor didn't feel anything with a physical exam. I had a scan back in March where there was some concern in my lungs but they decided to do a full CT scan 4 months later. Before that could happen, I felt the lymph node in my groin swelling and tender. I also thought I felt a lump in my anal area so I met with the doctor. He didn't find anything in his physical exam but ordered a PET and CT. Found there are 2 spots on each lung and I need to have chemotherapy. So I am stage 4 now!

The what ifs are running through my brain. I'm in a city with good healthcare but could move to go to MD Anderson or Mayo in Rochester. I am a remote worker and don't own a home so could be relatively easy for me. When I tell people, they seem to write me off already. I'm on disability at work now due to fatigue and my stressful job besides a stressful living situation at the moment with tenants above me.

I am scheduled to start chemo here on 8/17 and can't get in to MDA until 9/11. I am wondering if the treatment would be any different at this point. In one breath the oncologist says people can work during treatment if they can tolerate it but then in another it sounds like I have 20-30% chance that this will work! Those don't sound like good odds! I'm meeting with him again this week to get more questions answered. I have no one to help me and don't want to be a burden to friends. You are lucky if you can find one who is willing to help when you tell them you are now stage 4! I guess I can't blame them but a phone call to see how you are doing would be nice!

I want to start care as soon as I can and only delayed until 8/17 because I was supposed to be on vacation this week celebrating my 60th birthday. Yay! Not to be dramatic but if my chances of achieving positive results with this round of chemo are slim, then I would like to move to a state where Dignity in Dying is available. I honestly don't see any need to continue treatments to see if they work and suffer if it is futile. And now a good soul is burdened with my issue and I'm not even family. I feel it is too much and have always taken care of myself.

So my question is, being stage 4, how have you been surviving and how long has it been since then? Do you still need intensive treatment? Do they give you a certain number of years to expect a certain level of quality of life? I know everyone's details are very different and what care they have access to near home.

I'm just mulling all kinds of scenarios around. At work they want to announce I am out indefinitely. I made it sound like they have already decided I'm dying! Am I in denial?

I agree that it’s optimal to go to a facility that treat Anal Cancer regularly

i considered MD Anderson & City of Hope and because I live in the Northwest I chose Fred Hutch/ UW ( Seattle Cancer Care Alliance

They have exceeded my expectations!

Amazing GI Oncology department with Specialized Anal department

Drs Stacy Cohen & Ed Kim are brilliant, skilled oncologists and they’re Support Staff & Integrative Medicine are too notch

i