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