My Anal Cancer Experience
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Good luck to you! I am so glad I found this website and discussion board. None of my doctors told me about it. Discussing things that I am going through with others that are going through the same thing (and understand the stress all these side effects cause) seems to help me. Thanks to all of you.
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I'm coming up on 3 months post chemo/radiation treatment from stage 3C. Had an exam from the surgeon last week It wasn't a scope he used but just his finger - pinky, thank you! He said everything felt good and basically how it would feel for someone who has had radiation.
I have my PET scan next week and praying that comes back good, too. Most days I feel pretty good but I work at home so I'm not exerting myself much all day. I can still get a bit tired if I go out and some of that is probably because I'm too sedentary in general. Hard to work in exercise to my day.
I'm also meeting with a therapist for some pelvic floor therapy next week. I'm curious what they can teach me other than kegels. I feel stiffness in my hips so want to also work in some kind of exercises to keep them loose. Maybe get a hula hoop or recently saw hot hula as an exercise that looked interesting but not sure I can do that even pre-treatment! But it looks like fun!
I too have a hard time holding in a bowel movement. It is like an alarm clock and gets me up every morning at 6:30 and no stopping it. I don't go out too much but do try to know how my body is doing that day to know if it is a good idea or if I should stay home. Hard to know if a restroom will be available or close by. I'm hoping this gets better with time and maybe some of the pelvic floor therapy will help - I am hoping! It makes some things in life a little more complicated and hard to explain to those who are not close why you can't go somewhere.
Crossing my fingers for next week! Treatment seems like a bad dream now. I did relatively well with it but the last two weeks were the hardest with mostly being tired and the burning when urinating or pain with bowel movements. The first two weeks after treatment were also hard but everything got better day by day and week by week. I'm so glad that part is over! I kept telling myself that this time next week I'll be feeling better and it helped me deal with each day.
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I finished my treatment January 15, 2022. I keep telling myself it was a bad dream. Most times I feel great and then I am out in public and the urgency to go comes. I take Metamucil 2x a day and that helps but the unknowing of when those urgent bowel movements are going to come is really unsettling. I used to walk with friends outside, but now have to walk on the track at the gym, just to be close to a bathroom. I go to a spin class 3x a week, but most classes have to get off bike to go to the bathroom at least once. (classes are at 6:30 am). I get up at 5a.m., and usually go 2x before I leave for gym. My biggest fear is one of these days I am going to be out and not make it to the bathroom on time. Do you guys feel that way? How humiliating!
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am 6.5 years post treatment and the BMs are the only unresolved issue; i have really focused in on trying to know when they are going to come - mainly in the morning - but it is really difficult when traveling (especially early morning) and forget taking hikes or doing anything away from home in the morning hours; wish i had a solution although my health practitioner has said that maybe psyllium husks will bulk things up a bit - haven't tried that yet
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That's so discouraging. It seems like the BM issue doesn't really go away and I hate it!! I do take Metamucil. It does help but I still have BM emergencies even in the afternoon. But, I guess it beats the alternative, which the surgeon did tell me about. I don't think I would have surgery to remove everything and have to go in a bag. Have to stay positive.😄
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I have found that the psyllium product I use has helped to "slow things down" when I remember to drink it about 30 minutes prior to dinner. I can usually take care of all my stuff in the morning when waking on days following that proper dose. I had to start very slowly at about 1/6th the amount on the directions. I've worked my way up to about 2/3 of the directions amount now. Must take with plenty of water!!!
The taste and texture took some getting used to, had to try a few versions, but I have one brand I can tolerate and a few flavors to choose from. I use a shaker bottle and room temp water and chug it on the way home from work so it has time to work with that evening meal fibrin me a much better morning most days. I'm still avoiding raw leafy greens, but most other foods are manageable with the use of the psyllium supplement.
Give it try, but start small and work your way up to an amount that works for your body. Good luck!
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I didn't know you were supposed to take it before a meal. I just took it in the morning and at night. I will give that a try!
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Does anyone have issues with dairy? I used to love ice cream but milk products other than yogurt seem to not do well. Mostly gas but sometimes creates an urgent bowel movement I'm not expecting especially after having cereal for breakfast.
I agree that having the surgery is not the desired way to go so I try to be grateful I'm not there.
If I'm going to have a salad or dairy lately, I have it at home and know to be ready. I was able to have a Caesar salad last night at my neighborhood pizza place and it didn't bother me so that is a good sign. I'm slowly introducing salads to my diet.
What is the psyllium product you used that worked for you? I'd be interested in trying it as my first one to try. My morning bowel movements are not, how do I put this?....log like. They are soft which I guess is good. I'll have to ask my doctor next time I see him what I should expect them to be like. I'm OK with how they are but just like to know what the new "normal" should look like.
Most days I am pretty good with bowel movements but once in a while they surprise me or I go more often. Usually just in the morning upon rising. So I'd say I'm fairing pretty good and hoping it improves even more. Lucky for me I'm not a morning person so morning walks aren't an issue but there are things in life we have to get up and going for like early morning flights, etc where I am very concerned about when in that situation. I've been a homebody the last several years will worry about that when I have to.
Still VERY grateful for the healthcare staff here. I have no support system and they made me feel cared for and made sure I got to my daily radiation with Lyft rides. They are not just heroes....they are angels!
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I do very little dairy, I switched to dark choc almond milk mixed with nondairy muscle milk during treatment when all I craved was choc milk. It's easier to have dairy again now, but I limit it. I am terrified to eat a while salad still. I have a bite here and there.
The product I use is called Fiberwise I have to buy it online with my other wellness products, it's not sold retail to preserve the freshness of it's ingredients.
I can't stand the idea of being a homebody so I keep trying to plan things after 10am as much as possible, I keep a back up outfit with me at all times. And when I feel the urge...I do NOT DELAY!
3 months post treatment petscan and scope next week on Thursday! Once that's over, I'm going to celebrate with my hubby and eat Mexican food AT a restaurant on Friday night AND I'll have a raspberry margarita! The rest of my weekend calendar is cleared...just in case!!
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I use Metamucil 2 x a day. Funny thing, before I was diagnosed, Metamucil filled me with gas and I felt bloated whenever I took it. It doesn't do that to me now. I actually don't have much gas at all now. Weird.
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Good luck with your scans. I have mine on January 23.
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Thank you for sharing your experience. I am about to start my third week of treatment, with pretty much a very similar regimen as yours, though VERY oddly enough, they give stage 1 people (like myself) pretty much the SAME treatment as stage 2/3. I still can't get a clear answer from my doctors specifically as to why, only that "this is the standard treatment for this type of Cancer" canned answer.
Their radiation machine seems to break down a bit, so though at the end of my two weeks, I've had 6 instead of 10 treatments. Mine take 20 minutes each, again with me being unique - they say it's because the machine being used is using more "hits" but smaller less intense ones, thus takes longer to do. The chemo didn't quite hit me so hard at first, though late on the 4th day of the pump I developed an odd unpleasant feeling along the top of my chest and my heart rate went up, so I turned the pump off with their ok. Within 48 hours those side-effects stopped and knock on wood, so far nothing drastically severe from that again so far.
Like you, I had a hemorrhoid issue. With me it was just one LARGE one and it was removed via a Colon surgeon and that's where they found the tumor (under 2cm) next to it that tested positive for the Cancer - he removed it too at that time. That area on me is starting to burn a bit after 6 rad treatments (using a cream).
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Praying that your scans were all good and you can enjoy the holidays!
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Oh man. I suffered such pain and first doc gave me week Oxycodone. I balanced between Tylenol and ibuprofens it was rough. Because of insurance issues got a new surgeon - he seemed to get me and put me on morph/sulph I take one every 12 hrs and have Oxycodone as a break through if I need it. Makes all the difference in the world! Hope this helps!
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I really am thankful that my surgeon suggested the Metamucil. It has really helped bulked things up, although I still have to go several times in the morning. I am going for my 1 year out Pet Scan on Jan. 23. Praying that cancer is still gone.
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I am a 56 year old male and have the same problem. It has been 14 months since my last treatment. I take Metamucil as well. I started taking the Metamucil only once a day and this helped. While I believe I need the Metamucil (constipation is my problem), I think the gel it turns into in your body makes it more likely for accidents to happen. Up until recently, I would occasionally have some mucus come out when accidently passing gas, I noticed this dramatically reduced when I started taken less Metamucil. I have been growing more brave as time passes when I need to go out and don't worry as much. Just wanted to let you know that you are not alone and that it does get better even if ever so slowly.
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