How did I get here???

Annabell
Annabell Member Posts: 2 Member
edited June 2023 in Anal Cancer #1

Hello all! I am a 53 yr old mother of 3 recently diagnosed with stage 2A SCC of the anal canal. My days since have been full of phone calls to insurance copanies and cancer treatment centers, doctor's visits, diagnostic testing, and an occasional breakdown. How I got from I think I broke a hemorrhoid to I have a tumor aka a beast ... lol ... in my butt has me baffled and scared.

I am wondering, has anyone had or considered having Proton Beam Therapy for radiation treatment? I am looking into it at John's Hopkin's. I was told by my Colorectal Surgeon that it is not the first-line method of treatment for anal cancer, but I read an article on the NIH website discussing its use on the beast. Do I have to do the first-line treatment? I know all good questions for an oncologist. This is what happens when one must sit and wait on an insurance authorization to make an appointment.

Thanks for listening 💜

Comments

  • MesquitePoet
    MesquitePoet Member Posts: 10 Member
    #2

    It's not a first line treatment- IMRT radiation is, but MD Anderdon is also doing it. As these are major cancer centers that are leaders in developing innovations later adopted by the rest of the country, it seems a reasonable option, if you feel it's right for you after talking to doctors and doing research.

    I just completed the Nigro protocol with IMRT, but plan to consult with MD Anderson next year once I'm on Medicare. I like their attention to survivorship issues.

  • Annabell
    Annabell Member Posts: 2 Member
    #3
    https://csn.cancer.org/discussion/comment/1700140#Comment_1700140

    Hi Poet, thank you for commenting. I haven't looked into MD Anderson yet. I'm hoping to say somewhat close to home. That made me wonder, I imagine the ride home from therapy is going to be grueling. How many people stay in hotels closer to the cancer center? Probably quite a few, but that can be pricey!

  • MesquitePoet
    MesquitePoet Member Posts: 10 Member
    #4
    https://csn.cancer.org/discussion/comment/1700144#Comment_1700144

    There are sometimes funds available to help with temporary lodging/housing if your treatment center isn't close to your home. You are going to need a full bladder and it's preferred your bowel is empty too for radiation treatments. That can be tough to juggle, especially in the second half of treatment. I wouldn't want to have a long drive.

  • drpearl
    drpearl Member Posts: 28 Member
    #5
    https://csn.cancer.org/discussion/325664/how-did-i-get-here

    My thoughts exactly "how did I get here?!?"

    51 mom of 3, thank goodness they are all grown now!!!

    I hope you found a care team that you feel is doing things the right way for you. My team was great, except for the dietician, she lacked in helpful options, a handout on how to combat diarrhea and constipation didn't do any good, I needed to get real nutrients in my body and couldn't eat hardly anything. Finally found muscle milk shakes and choc almond milk worked when dairy didn't. I ate scrambled eggs and oatmeal most days because my hubby made them and stood over me until I ate.

    Nerve thought this would happen to my family. I have ZERO family history of ANY chronic diseases. Being overwrought was really the only family concern and I'd gotten my weight under control 2 years before all of this!

    I'm finally feeling half normal this week, down to one Norco per day and a few tylenol or a cbd pill. I am just now able to take in the info about what the heck just happened to me! Starting family therapy to ensure my amazing caregivers "chauffeurs and chefs" are going to be ok after what they endured on my behalf. One of the worst things was seeing the pain on their faces from my drugged stooper laying on the couch for what seemed like an eternity! We're starting to find a laugh here and there, I'm taking bites of more foods here and there.

    Trying to think to the future in a positive but mindfully cautious way.


    Best of luck to you, I hope you are coping.

  • HV22
    HV22 Member Posts: 3 Member
    #6

    I had a team of specialists at MDA that included radiation oncology, gastro oncology, gynecological oncology, colorectal surgical oncology and supportive care. At most institutions, the teams all work together to formulate the best plan for your individual cancer.

    I was blessed with friends and friends of friends on MDANDERSON campus that helped me take advantage of everything that was and still is available.

    Best of luck. Stay strong.

  • sfsnc
    sfsnc Member Posts: 5 Member
    #7
    https://csn.cancer.org/discussion/comment/1701113#Comment_1701113

    I'm headed to MDA in a few weeks to meet with their team, have the CT/PET scans and listen to what the recommend as the best course of action. MDA is certainly far from where I live, but I've heard they're the best. To say I'm scared might be the understatement of the year, but I'm hoping for the best.

  • HV22
    HV22 Member Posts: 3 Member
    #8
    https://csn.cancer.org/discussion/comment/1701387#Comment_1701387

    They have housing options at MDA.

    I would recommend getting referral for pelvic floor therapy as well.

    This is a horrible treatment, no doubt about that, but you can do it. I was terrified, but pushed through it. Prepare everything you can ahead of time and trust in your care teams.

  • sfsnc
    sfsnc Member Posts: 5 Member
    #9
    https://csn.cancer.org/discussion/comment/1701464#Comment_1701464

    Thank you! Just added “pelvic floor therapy” to my list of notes. The doctors may see my list and refuse me as a patient. I’m a bit of a researcher/planner. :)

  • Lynejo
    Lynejo Member Posts: 21 Member
    #10
    https://csn.cancer.org/discussion/325664/how-did-i-get-here

    Annabell what did you end up doing , how has that worked out and how are you now?

Discussion Boards