My Anal Cancer Experience

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  • jharig
    jharig Member Posts: 3 Member
    #22
    https://csn.cancer.org/discussion/317546/my-anal-cancer-experience

    Thanks so much for sharing. I’m beginning treatment next week and found this to be really helpful!

  • McG
    McG Member Posts: 14 Member
    #23

    When I posted my experience three years ago I hoped it would help others facing treatment. I'm so happy to see so many replies and kind comments.

    I'm just coming up on five years since start of treatment. Every scan, test and exam have been negative. I'll have one more CT and exam in a few months. I know they will be clear and I'll hit the magic five year mark and the docs will cut me loose. YaY!

    If you're facing it or doing it take it from me. Stay positive and time will pass. It will fade into the past...

  • kateril
    kateril Member Posts: 19 Member
    #24

    Thank you, McG. I'm doing my best to stay calm and positive as treatment date gets closer. I am shocked that anxiety attacks are coming over me in waves, out of the blue. I've never had anything like it, and it's weird. My GP has prescribed Ativan haha hope it helps.

  • bbee22
    bbee22 Member Posts: 13 Member
    #25

    congrats!

  • zetapup
    zetapup Member Posts: 10 Member
    #26

    dear kateril, i also had anxiety, very normal, i had care from a psych doc ( ativan and seroquel rx ) who was very helpful, fyi

  • zetapup
    zetapup Member Posts: 10 Member
    #27

    k : and there were side effects from pain plus psych meds too, constipation being main issue. someone mentioned driving themselves to rad sessions ... fyi, i myself leaned very heavily in a caregiver driver, and we used several plans for sudden pooping during even the shortest trip, to excellent effect. and all caregivers were very kind during flatulence, it was all part of the deal. no big deal thing, but convos ahead of time meant my distress was minimized.

  • kateril
    kateril Member Posts: 19 Member
    #28

    Thanks... we'll just have to see how I respond to things, and be ready for whatever comes. Not sure how I'm going to deal with pain. I have Tylenol, and an rx for percocet, which made me sick in the past when I took it.

  • CalinMi
    CalinMi Member Posts: 3 Member
    #29

    I go for mapping today and see the medical oncologist tomorrow... I am so scared but the information from the poster is so helpful.

    I didn't think about having a bowl movement to from or during treatment... Do I need to get adult diapers?

  • jharig
    jharig Member Posts: 3 Member
    #30
    https://csn.cancer.org/discussion/comment/1693588#Comment_1693588

    hi there! I’m on day 28 of my chemo/radiation treatment. My cancer was located low in the anal canal. I haven’t needed an adult diaper. I’ve had a lot of very loose bowel movements and was told to stay on a low fiber diet. Small meals definitely helped. I was given lomitril for diarrhea which helped reduce the number of spasms and spare me some pain. Everyone is different but I wanted to share that with you in case it is helpful. Best wishes on this journey.

  • CalinMi
    CalinMi Member Posts: 3 Member
    #31
    https://csn.cancer.org/discussion/comment/1693589#Comment_1693589

    Thank you for sharing. I'm going to have to make notes on the different medications for the side effects that have been listed by everyone. My cancer is also anal canal cancer but the radiologist told me after the MRI that it has spread to the "pelvic floor" and I am at stage 3.

    I think I may pick up a package of the adult diapers "just in case". Right now I am doing well with pads, but if it gets worse.... What do you eat that is low fiber?

  • jharig
    jharig Member Posts: 3 Member
    #32
    https://csn.cancer.org/discussion/comment/1693590#Comment_1693590

    Sorry! I spelled lomotril incorrect before; the generic name is diphenoxylate/atropine. Bananas, rice, applesauce, baked potato, toast … eggs and chicken for protein. I found the posts here to be very helpful (thanks to all of you out there!) so I’m happy to help anyone else if I can. This week is the toughest one for me so far but…. Three. More. Days!

  • Forbin
    Forbin Member Posts: 6 Member
    #33
    https://csn.cancer.org/discussion/comment/1691803#Comment_1691803

    I live in cali and am curious about the use of cannabis during treatment. I read conflicting reports about using with chemo- but after reading your post it sounds like the oncologist supported it?

  • McG
    McG Member Posts: 14 Member
    #34
    https://csn.cancer.org/discussion/comment/1693852#Comment_1693852

    Hi. In my opinion, supported by personal experience, cannabis is a wonder-drug for cancer patients. As I mentioned in my original post, it helped me so much dealing with nausea, pain, sleep, appetite and stress. I know two other people who used it during cancer treatments who say the same thing.

    Although no one on my medical team actually recommended cannabis they were all supportive of me using it since it was helping so much. There are zero conflicts when using cannabis and chemo at the same time. It's just the opposite.

    Since you're here in California where its legal I highly recommend you go to a legal dispensary and explain to the bud tenders your condition. If you haven't used cannabis products previously or not for a long time be sure and tell them. Much of today's cannabis is much stronger than a few decades ago. Besides marijuana to smoke or vape there are many different forms of edibles and drinks that will have the same effect. Experiment slowly to find the best dose. Believe me, you will be very happy with the results.

  • CalinMi
    CalinMi Member Posts: 3 Member
    #35
    https://csn.cancer.org/discussion/comment/1693589#Comment_1693589

    I will be going for my 3rd radiation treatment today and the pain level since yesterday has seriously gone up. How bad is t going to get? I think they have a an anti diarrhea drug in there somewhere but I don't need it, yet anyway. If anything I am having a problem even going... I need to know what to eat and am not getting a real answer from either medical or radiology...

  • daludo
    daludo Member Posts: 4 Member
    #36

    I just received diagnosis of anal cancer yesterday, following results of biopsy taken during colonoscopy. Still in a bit of shock but your post is very encouraging.

    surgery for removal of tumor is scheduled next week and will know more then, but based on fact the tumor is “golf ball sized” I’m guessing stage 2 or above.

    Since I’m probably looking at radiation & chemo, I’ve made notes of your practical advice.

    Thank you!

  • Scan47
    Scan47 Member Posts: 2 Member
    #37
    https://csn.cancer.org/discussion/317546/my-anal-cancer-experience


  • Scan47
    Scan47 Member Posts: 2 Member
    #38

    Hello, I am new to this forum and I think that I may have mistakenly posted instead of replying to a previous post made be a member of this forum. I believe the name is 'Grant' and I really appreciated his post about the whole anal cancer 'experience.'

    I have stage 3C Squamous Cell Anal Cancer and I have just finished my treatments on May 5, 2022. The chemo wasn't all that bad except for the infusion pump that I had to carry around 24/7 like a small child attached to my hip. The radiation side effects really didn't hit me until my last week and they are still lingering around today. It was the burning urine that tore my world apart! I didn't want to eat or drink anything that made me have to use the bathroom and so many suggestions and medications and creams were offered to me by the very helpful cancer team nurses and doctors. I even used to stand up in the bathtub to urinate because it would kill my vulva when the urine hit down there causing me excruciating pain. Finally, my son went and bought me a sitz bath that provided some relief and some THC helped me sleep better as well as helped me get my appetite back up to par.

    I didn't experience the painful bowel movements as I had to have an emergency colostomy bag attached to my large intestine because the tumor had blocked my anal cavity so bad that I was full of poop and the surgeons didn't want me colon to explode with backed up poop. The problem with the colostomy bag was the extreme diarrhea that accompanied the radiation and chemo treatments. I went from low fiber diets to high fiber diets to no avail but now that the treatments are over, my bowel movements are more solid. The tumor and the smaller ones that were outside of my anus are flat now but there is still the large one (6 cm) that's being watched now with hopes that it has shrunk or is shrinking. I'm super nervous about it because I do not want to go through anymore treatments! My cancer team is trying to assure me that the tumor may shrink or they may have to have me go through more rounds of chemo but I don't want it. I want them to do the surgery to take whatever is affected out and let nature take its course after that.

    My entire quality of life is so low at this point that I even considered suicide. Thankfully, my sons and my cancer team are not letting those thoughts remain on my mind all of the time. After reading the comments on here, I now know that there may still be hope for me after all, it takes time for things to get back to 'normal' as well as time to see if there are any updates to the tumor.

    Thank you all so much for sharing your experiences with the rest of us who are at our wits end with this disease.

  • McG
    McG Member Posts: 14 Member
    #39
    https://csn.cancer.org/discussion/comment/1696929#Comment_1696929

    Hi. I'm sorry you've had such a rough time. But I'm really happy my story helped you.

    Many others have posted their experiences in this thread. It's such a great community. All of us have different experiences, some easier, some harder. Yours was definitely one of the more difficult ones. But the one thing we all have in common is time will pass and we will heal. It will be the same for you. I just passed the five year mark and can't believe how fast the time flew by.

    Take advantage of your great sounding support group and push fear and dark thoughts away. As difficult as it can be, really try positive thinking. Believe me, it works!

    Grant

  • DinainOH
    DinainOH Member Posts: 20 Member
    #40

    Hi! I was diagnosed a few weeks ago and go for my MRI PET scan tomorrow. Hearing what others have experienced helps to set some expectations knowing everyone is different and recommended treatments. I keep asking my doctor if I'll be on a restricted diet and they said no but will see what the oncologist says. I want to know because I live alone with no support system near by so was hoping to stock up on some things I might need since it might be hard for me to get out. I rely on the bus or Uber at the moment and can walk 1/3 mile to a grocery store.

    I was hoping to walk to some treatments early on since it is about a 35 minute walk and maybe Uber home but that might be unrealistic with fatigue. I'll have to see how it goes, I guess! I'll be happy when I'm on the end of the treatment and praying all goes well. I haven't had any stress about it but it doesn't seem real at the moment. I haven't told more than my manager and 2 close friends. I'm estranged from my family so not telling them at the moment. I have worked remotely for 6 years and don't plan on telling anyone at work. I hate to tell "friends" because then they think you will want something from them so I'm not telling anyone. It puts them and me in an uncomfortable place. Of course, help would be great if you need it but I have found in life I can depend on the kindness of a stranger more than anything else. Thankful for this forum!

  • dawn_g
    dawn_g Member Posts: 16 Member
    #41
    https://csn.cancer.org/discussion/317546/my-anal-cancer-experience

    thank you so much forvthe information! It really was helpful to me.

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