Treatment Centers/Anal Cancer

sfsnc

Hi, all - admittedly, never did I think I’d be doing a Google search for anal cancer…of course, I don’t think anyone has that as a bucket list item. Since this cancer has nowhere near the the “press” as other cancers, I know it’s important to be treated at places where they see more than one of these cases a year.

Can anyone provide some recommendations on where they received treatment? Pros/cons…likes/dislikes? I’m leaning towards MD Anderson in Houston, but would love to hear what others have to say.

And, a million thank you’s for this group. I must have a 100 screenshots with specific items circled. Even though this is the most scared I’ve ever been, it’s comforting to know that others have made it through.

eihtak

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

sfsnc

Katheryn, thank you so very much for your reply. I can't even wrap my head around all that you've been through and your positive attitude comes through in your words. I can promise you that when I go down the "why me pity path", I will think of you.

The treatment of this seems fairly standard, but I think so much depends on the team of doctors and I think it's also important to be with a cancer center who sees this regularly and knows the best ways to treat all the side effects. It's wonderful that you had someone that had come from MDA and could give you wonderful care. I want to stay at home so badly for treatment, but my faith has been shaken in the doctors here.

I'm relying heavily on my faith to get me to the right people.

Again, I can't thank you enough for reaching out and for helping me to see that I can make it through to the other side.

pializ

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

pializ

https://csn.cancer.org/discussion/comment/1701389#Comment_1701389

Hi Katheryn!

Lovely to see you here once again! Whenever I see one of those who helped me so much at the outset, it brings a smile to my face.

Glad you are continuing to do ok despite all that has gone on.

Kind regards

Liz

sfsnc

https://csn.cancer.org/discussion/comment/1701396#Comment_1701396

I laughed out loud at your "candy crush" comment! My boys and husband know that whenever I'm really stressed I play that game...my son asked me yesterday what level I was on now. Ha! I have my CT and PET scans set up for next Thursday, so I'll live in my world of denial for just a little bit longer. Of course, the transanal excision I had a few weeks ago doesn't leave me much room for denial...wish I'd had the sheepskin info prior to that surgery for sure. Liz, do you mind me asking what stage you were? Thanks1

pializ

https://csn.cancer.org/discussion/comment/1701405#Comment_1701405

I was stage 3B. The primary tumour and lymph node in the mesorectum and another against the pelvic wall (which actually wasn’t an enlarged lymph node as initially thought, but it was my ovary, only discovered almost a year later as it hadn’t responded to treatment and I had umpteen scans to explore why).

Yep! Candy Crush is good for focus when stressed. Also jigsaws & currently I find crochet is my go to at times of stress. I already had a thick sheepskin before treatment. It really did help. Also, some slippery fabric, dress lining type, think satin feel. That’s really handy when getting in and out of the car as it helps you swivel.

Good luck with the scans

DinainOH

https://csn.cancer.org/discussion/comment/1701389#Comment_1701389

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?

redgar

DinanOH

First you are not in denial. It’s good to be realistic, but optimistic as well. IMO people focus too much on what “stage” their cancer was identified as being in. Try to remember this is just a system for classifying the cancer so doctors can use it as a guideline for treatment. My cancer had metastasized to a lymph node, which was the way I found it (so perhaps a fortunate thing?). The tumor itself in my anus was tiny. Because it had spread to a lymph node in my groin it kicked me up a notch on the stage chart. It doesn’t necessarily mean that treatment can’t or won’t work for you just because it’s a higher stage. There seems to be misconceptions about stages. Without getting out my paperwork I can’t even remember exactly what stage I was diagnosed at, 3 something.

I’ve done a ton of research on this cancer. There is much less out there about it because it is rare, BUT it’s becoming more and more “popular” as a result of HPV and the aging population that is susceptible to HPV. So treatments are improving constantly. It is actually a “curable” cancer, as much as any cancer is curable. It’s always with you, but you “live” with it.

I’m 71 and counting. Every year older I get will put me closer to new treatments as I see it. I finished my chemo and radiation last Spring, PET scan was clear in Jan. I am suffering primarily from the fallout from the radiation. It damages your rectum, anal canal and vagina. Stenosis is just a part of it…proctitis is what I’m suffering from now and not one of my doctors even warned me about it and none of them seem to really know how to treat it either..again its a rarer result of the intense radiation. Radiation is the gift that keeps on giving, as one doc told me, and it will cause flare ups in your body for years. I thought I was out of the woods for bowel issues and then suddenly I started having bowel incontinence, diarrhea (explosive) and vaginal burning. I found out this is all because of the radiation and that these symptoms (called chronic proctitis) normally don’t appear until a year or more later. So I’m doing what I can, taking Imodium daily, eating healthy and getting through it.

My humble advice (we’re all different) is read as much as you can about your own situation and symptoms. Don’t count on the doctors. I had to push to get physical therapists for my pelvic issues (soreness, stiffness…for months I couldn’t sit cross legged and it’s still difficult). Because it is a rarer cancer docs just don’t have as much experience w/it and don’t really know all the fallout that the radiation may cause. At one time, not so many years ago, there wasn’t a treatment and you automatically had to get the “bag”….they’ve come a long way in a short time and will continue to advance rapidly as they understand how to treat to better.

I have a friend with a different cancer, he has had 1/2 of his stomach removed, he was told he would probably die in a year, that was 18 years ago! He’s taking a chemo pill which didn’t even exist when he was first diagnosed, and has been living a full life. His doc said he could only drink 1/2 a glass of wine….so he drinks 1/2 a glass at a time!

What helped me the most was the accidental introduction of someone who had the same cancer and had gone through this treatment. She was the one that told me what to expect, she was the one that kept me from panicking when I was going through the treatment and after.. The doctors didn’t prepare me at all…she got me through it. We communicated via text and though she just lives next town over, I’ve never met her. We made a lot of “butt” and “****” jokes and spared no words in our descriptions of what was happening. It made all the difference to have someone to talk **** to.

I’m on this forum to help others get through this (and you WILL get through) and to help myself get through. Butt buddies are the best!

Feel free to reach out anytime.

Lynejo

https://csn.cancer.org/discussion/comment/1701394#Comment_1701394

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