Dumb question but WHY do side effects vary so much person to person?

AtlantaGreg Member Posts: 6 Member
edited November 2022 in Anal Cancer #1

First post (sorry, might be long): A had to have a hemorrhoid operation about 3 months back. The Colon surgeon found what the thought was a "wart" near the hemorrhoid and removed it during the operation, and sent it in to be biopsied. Came back positive for Cancer, allegedly a stage 1, but did reach the sphincter muscle (no damage during surgery). Doctor wanted me to see an Oncologist for further testing and talking.

It's been a whirlwind since. Two Oncologists, a handful of visits. They both "think" it's stage 1, but I'm finally getting my scans this coming week (MRI and PET) I guess to confirm this or see if it's spread anywhere else. Have to have a port put in for the chemo treatments this week as well. Yeah... two scans and a port surgery in one week and the following Monday my daily treatments start for chemo and radiation. Allegedly two, 5 day stints of carrying a chemo pump around on 1st and 5th week, and 5 weeks (give or take) of radiation. I guess this may change a bit if the scan results come back poorly, but the "buzz words" the doctors have been using at least seem to indicate they "think" it's still a stage 1.

I thought joining a Facebook group about this would help, and in some ways it did. But one thing that really has me completely freaked out is the sheer RANGE of how people have reacted to this same treatment. Some people post about the chemo/radiation not really having a huge impact on their life aside from a few bad days. Others talk about massive diarrhea constantly, and a few talk about having to go into the hospital "weeks" after treatment ended due to complications. I'm not going to lie - in some ways I'm getting enormously freaked out by some of the stories. Not to sound negative, but my life has never been one where doctors come into a room starting off a sentence with "Hey... good news!". Instead I always seem to be that guy who hears, "Oh... you're that one in 100,000 that this didn't work on!", etc. :-(

I don't have family here. Over the years my friends have moved away for jobs or whatever, and I have ONE friend here who's nice enough to have volunteered to take me to my daily treatments. But I don't want to ask much of them beyond that. They have their own life/issues to deal with, too. The fear of the unknown is starting to make my stomach feel like it's walking across the grand canyon on a thin rope and I can't stop thinking about it.

I've stocked up on some oncology drinks, items for a low-impact and high protein diet, etc. But still scared ***less that I'm going to wind up with huge radiation burns in my rear, or as what I read in a few instances, hearing a doctor tell me later I'll have to wind up with a colon bag, etc. Short of prescription medications, I have no clue how to calm down about this. Sorry for the long rant and playing my violin ... just wondering how anyone else gets through all of this on the mental side??


  • Gigi757
    Gigi757 Member Posts: 1 Member

    I am Stage 3 and just finished my treatments in October. The same course of treatment that you’ll begin soon. 6 weeks of radiation/5 days a week; chemo pump for 96 hours during weeks 1 and 5.

    I recommend deep breaths. No joke. Your life has been forever changed and you’ll feel very much out of control.

    You’re right about the side effects being different for each person. I had few side effects (early) from radiation and drove myself to every treatment. Fatigue caught up with me between weeks 2 and 3. The radiation burns between weeks 5 and 6. I wish that I could say that it wasn’t bad. I’m 5+ weeks out from treatment and still recovering. Radiation was definitely the worst part of my treatment. You feel absolutely nothing during it but it’s definitely working on you.

    Chemo wasn’t as bad as I had anticipated. Most of those weeks I was ok but would get sick by the end of the week. Your medical oncologist’s office should go over everything to expect. It’s sucks but is manageable. You’ll be glad for your port. I had a PICC but it does the same. You’ll have lots of bloodwork done.

    I would suggest writing everything down. I kept a calendar on my phone but also a paper one. There will be MANY appointments. You’ll also have questions for both of your oncologists. The chemo impacted my memory a bit. I found writing my questions (and side effects) down very helpful.

    I hope this has been helpful. It sounds like you’re in good hands. Just take it day by day (and some days, hour by hour). Deep breaths.

  • AtlantaGreg
    AtlantaGreg Member Posts: 6 Member

    Thank you for the comments. I just dread the "after the treatment it all kicks in" stuff I read. I'm just hoping through it all that there's no permanent damage to "that area" from the treatments. I find it odd that I'm reading people in stages 3 and sometimes 4 have the same treatments as those in stage 1? It sounds so cookie-cutter to me.

    Either way, I've pre-prepared as much as I can. Mentally I need a break. I'll just have to listen to the doctor's tips and those people are giving and just wait to see how things have an effect on me.

  • McG
    McG Member Posts: 14 Member

    I was also stage 3 and had the same chemo/radio as you and Gigi. I believe different stages have the same therapy regimen because it's what our type of cancer responds to.

    Yeah, when-the-treatment-all-kicks-in thoughts are scary now. When they do kick in it won't be so scary. When they are over the relief will kick in and, poof!, it's all behind you.

    I wouldn't worry about permanent damage the anal area. I certainly didn't have any. Radiation there is no fun but it doesn't cause permanent damage.

    If you live in area where it's medically or recreationally legal, one thing I STRONGLY suggest is cannabis. Edible, smokable or vapable, it's a wonder drug for cancer patients!!

    Hang in there and keep us posted. You may be short of real life friends but you have lots of them here who understand what you are going through.


  • AtlantaGreg
    AtlantaGreg Member Posts: 6 Member

    Thank you for the comments. Regarding legal medical cannabis, I'm in GA. They are VERY strict here and only just passed a law for a very limited (1 type of item) product. You have to register to get it and get a card from them, and even then, so far, there's no where where you can buy it (duhhhh). Here is their blurb online about it: "Georgia is a medical cannabis low-THC oil patient registry state, which means there is a lawful pathway for patients registered with the Georgia Department of Public Health, after certifying with a doctor or physician, to purchase and possess 20 ounces or less of low-THC oil."

    So doesn't sound like that's going to be an option for me. Not sure if the "oil" would help anyway. Will discuss with my doctor about other options. Thanks again.