My Anal Cancer Experience
Comments
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For the last year, I've been adding a shot of pure orange juice to the psyllium powder and water so that it doesn't taste so bad. It works great. The psyllium husk powder that I use is much cheaper than buying Metamucil and I deal with the taste problem using the added juice.
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I really think the Metamucil "bulks things up." It seems to be working for me, but then when I think all is good, boom, I'll be out and have to go immediately! I think that will be with us and I guess we just better get used to it. As long as I stay cancer free, I'll put up with it.
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McG, are there other things from treatment that went away after a while? I'm only 4 months out of treatment and still trying to get some muscle control back. The skin on my inner thighs is still sun tanned from radiation. Maybe I just need to go to a tropical location and even it out! My hips get a little stiff but need to find some exercises. I'm working with a pelvic floor therapist and hoping she can suggest some exercises.
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Hi Dina,
The sunburn/tan skin took about six months to fade. If you can't wait that long I suppose a suppose a trip to Hawaii for an even tan would be in order! :)
I had wonky hips that took about a year to mostly resolve. Not really painful but stiff like yours. I didn't do any special exercises. Just tried to keep active, which was a challenge at times. After six years they still get a little stiff occasionally, but maybe that's just age setting in with my 72 year old bod ;P
Fatigue was actually my worst post-treatment symptom. It took six months to just begin to feel normal and a full year until I regained normal energy.
The... um...extra flatulence that radiation causes has never completely gone away. It's not nearly as bad as immediately after completing treatment but it's still there.
So if your experience is similar to mine you will be improving over the next two to eight months. You are definitely on the road to recovery!
Cheers!
Grant
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I don’t see any recent posts about my type of cancer? I am new to this, so maybe I just haven’t found the right place yet? I was diagnosed and treated for stage 3, anal squamous cell carcinoma, in July 2022. , I am a 59 year old female. Went through 7 weeks Chemo and radiation. Already had my 3 month follow up pet scan and scope, no need for biopsy at this point, my treatments seemed to be effective! I am very Thankful and feel blessed. I just wanted to chat with someone who has gone through similar experience. My post effects seem to be more bothersome than actual treatments - incontinence, fatigue, low energy, and this darn chemo brain is the worst. Does any one else experience these types of symptoms this far past treatments?
Regards-Debbie
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Hi there,
I will be going for my one year post treatment pet scan this Monday. I was treated for stage 2 squamous cell anal cancer. It took me about 6 months to feel 100% again. I am back to exercising every day and the only side affect I have is the “bathroom issues.” The urgency to go, mostly in the morning, has not gone away. I take Metamucil twice a day and that has helped, but when I have to go, I better be near a bathroom! My husband and I are in a hiking club, and hikes are usually in the morning. I missed all of last year’s hikes because of cancer. Saturday will be our first for the year. Keeping my fingers crossed.
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I think if you're in this group it should all be peers with anal cancer diagnosis. I was Stage 2A. I had a biopsy in July 2022 at age 51 after my pcp noted a lump during my annual check up with pap ( which was normal). It came back July 12,2022 as cancerous.
I'm 4 months post treatment and just recently went back to work part time. It's exhausting and yes still bring fog but no where near what it was. The first 2 months post were very difficult for me. I was very active before this and it just decimated my muscles tone. My joint pain that had been under control for several years came back and I was very uncoordinated. My left side seemed to be disconnected from my brain a bit. I saw a massage therapist that specializes in cancer and Nero patients at the hospital e wellness center and she helped a lot! I also spent a much of my time fitting those recovery days at aqua class or in the hospital gym doing exercises after working with a trainer to figure out how to safely build my body back up.
I am no where near where I want to be yet, but I work diligently to incorporate activty for my body and brain each day. I also am back on all if my supplements again and have most of my joint pain under control again, still a bit in the hip area so that is a question for my next visit. I believe on going hip pain is likely a thing for many of us.
Glad to read you're treatment went well. I had the 28day RAD with xeloda with only one iv of mytomicin on day one.
Scans and scope at 3mo. Showed no new activty and greatly reduce activty at site of original mass. Due to residual radiation /inflammation. Heading back for oncologist follow up today.
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Thank you, Grant! From reading these posts, I am grateful for where I am 4 months post treatment. I definitely agree with your vacation idea to even out the skin tone! I don't go out much and work at home so it is sometimes hard for me to gauge my energy level since it is mostly sedentary. When I do go out all day, I do get a little tired at the end of the day but that could also be from menopause. Right now I'm working with a pelvic floor therapist thru the hospital to see what I can do to improve urgency issues. I'm trying to figure out what my body doesn't like such as dairy, sugar, fats? Some of that might be just changes in digestion as I get older. I am trying to build my confidence to go out earlier in the day because that is when I feel more at risk to have an embarrassing moment. I will keep moving forward and hope over time everything will work to my advantage.
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Hi. I am in the same boat as you and also a christian. My go too is lidocaine cream and silveadene (burn ointment - spelling?!). I also find a lot of comfort before and after BMs is my portable sits bath. It even goes camping with me. I do not take pain meds due to a 20 year battle with opiate dependency. Good luck and God bless.
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very helpful info as i’ve just started my journey. havnt had CT scan yet or seen onc. very frustrating as there seems to be no sense of urgency. ive been dealing w these gross symptoms over 2 months, i get diagnosed, and by the time i start treatment, it will be another month since the diagnosis. which in my mind gives this tumor more time to grow and possibly spread. ugg!!
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I understand your feelings but it takes time to schedule with the doctors. I had a biopsy in May 2022 and didn't start treatment until early August. I think the key is how soon you go to a doctor to then get diagnosed. I waited too long and then was initially misdiagnosed which is common. So I will never know if that impacted my current status or if it was my own delay of seeking care. I kept making excuses for it that made sense to me since I have always been healthy and was in denial. I was stage 3C when initially staged because it got in to a lymph node. So now I am stage 4 but that most likely was my own delay which was a few years from when I first saw signs of something not right. But it would go away and I assumed it was a hemorrhoid. Even when I started treatment last year, I had a few weeks to get prepared and the doctor said it wouldn't make a difference. I had good outcomes from the radiation/chemo last year. 9 months later we started seeing spots on my lungs. I think the radiation wears off after 9 months and that is a critical time to watch what happens. I still have good results at the radiation spot. So the fact it got to a lymph node was the bummer! Stay positive! I know you are anxious to get started but it is a process.
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I am just over 1 year from the end of radiation treatments. I can say my hips feel better and can't remember when this might have happened. I'd say maybe 6 months after treatment ended or there about. As I'm sure you have realized, whenever you ask questions about cancer there are different answers and I keep hearing everyone is different which is very true. Everyone's treatment might be different or as time goes on and there are improvements/changes to protocols. I'm sure you are looking for some kind of guidance on what to expect but these are hard questions to answer and only based on my results/experience.
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