Has anyone ever just walked away mid-treatment?

AtlantaGreg
AtlantaGreg Member Posts: 6 Member
edited June 2023 in Anal Cancer #1

Somewhat of a rant (sorry) but frustrated (try to condense this): Stage 1 anal cancer. Doctors came up with my generic treatment before my scans were even done saying the "5 weeks of radiation and two weeks of chemo" are standard now for this (stages 1,2 and maybe more it seems). I don't see how one cookie-cutter treatment plan fits all or most people with this. Last week had to go through a MRI, PET, and having a chemo port put in, in one week, right before treatments started this week.

Scans actually came back good - no indication of anything on the MRI, and the PET scan came back "clean" except for the one small area where the tumor had been (was removed during a recent hemorrhoid operation, so the tumor isn't even there). So, you'd think the treatment might be adapted somewhat based on scan results.

Everyone says their radiation treatments only take a few minutes at best (the actual radiating part). Monday I had to leave as their machine broke down. Yesterday, I was in the machine no less than TWENTY minutes worth of multiple "hits". Bad back from an old car accident and I was in a lot of pain by the time I got off the table. Today even longer as the machine needed something last minute before the long treatment even started. I'm told "Your treatments take longer than others" with no specific reason why (stage ONE??). Can't even put a pillow under my back as they say it will cause my alignment to be "off" enough to effect the beams.

I do have a meeting with the doctor on Friday, but if they can't shave off some time on this table, I do not see how I can endure this daily for 5 (+?) weeks. I won't even be able to walk due to the back going through this daily halfway through. I'm about to finish a week of chemo via port and not kidding, I'm tempted from this experience to just walk away after a couple of weeks of radiation and leave it at that and hope nothing is in there that will come back. Has anyone else stopped treatment midway through due to complications or physical limits?

Comments

  • Dodiefae
    Dodiefae Member Posts: 41 Member

    Hopefully your doctor explains why you need the regular treatment when you say the tumor isn’t even there. But it sounds like the PET scan picked up something? I doubt your insurance company would approve the treatment unless there was a legitimate reason.

    Talking about radiation. one day the power went out in our region while I was on the table being radiated. After the power came back, they had to let other people go ahead of me because they needed to figure out exactly where things were at when the power went out. I could hear people on the phone with ?? for quite a while. I must have been in limbo for a good 45 minutes. Today I find it amusing, obviously I didn’t at the time.

    Hang in there….

  • AtlantaGreg
    AtlantaGreg Member Posts: 6 Member

    The PET scan didn't really pick up anything. Lots of "unremarkable" comments on it (meaning, nothing). It did slightly light up where the Rectal tumor had been removed, but it having been removed in itself could cause an area that lights up. Nothing in blood work shows cancer cells. Nothing on other scans. Did talk to him today and he DID explain the inner workings of how this particular machine works but there is no way to trim down the treatment times - only to TRY a painkiller before the treatment to ease the pain. Answers? Yes. Solutions? Not really.

  • Lynejo
    Lynejo Member Posts: 21 Member

    You diagnosis sounds exactly like mine..and your questions about treatment,

    im wondering what you did, how you are now.

    .I haven’t started treatment yet have postponed it twice, doing research on this Crazy seeming protocol

    yet.. the first Oncologist at my local hospitals cancer center also acted so cavalier and cookie cutter

    i be gone to a More Cancer centric Institution. Fred Hutch UW Cancer Care much more professional and caring… however SAME Protocol !

    imresearching yet another Institution but not expecting much difference.

    so wondering same as your post heading…can I start then just quit if it’s just too much for me


    thanks,hope you respond I realize it’s been months ago for you and I hope you are well

  • feckcancer
    feckcancer Member Posts: 189 Member

    Hi,

    Treatment is 'cookie cutter' at the moment because it has been proven to work the best.

    Anal cancer can be a curable cancer with this treatment which is why they use it.

    People that have other cancers would LOVE to be us, the treatment is fast and furious but doable, over quickly then you start healing. Hope you start soon and stick it out.

    100% worth it. I've been NED from stage 3 with lymph node involvement for 8 years now and the treatment was absolutely worth it for the joy of seeing my first granddaughter born and waiting for the birth of the 2nd now.

    Lots of people don't get given a 2nd chance at life after receiving a life-threatening diagnosis like cancer.

    You might not think so now but you are blessed. After you have finished treatment and are feeling a bit better go and volunteer at your local cancer centre and you will see why.

    Take care. Stay strong.