Worried this might be anal cancer

Posted by blac @blac, Jan 13, 2024

Have been having this pain around the left side of my anus its very painful mostly at night and feels hard,
This pain as lasted for 3years now each day,
And more recently am noticing some kind of small growth in the left opening

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Hi. I was Dx with squamous cell anal cancer in March of 2024. After several months of tests, etc., I started with one chemo infusion through a port, followed by 28 sessions of radiation and chemo pills. I had nausea only after that first infusion. I’m happy to say that I had no pain. It was so much “easier” than I anticipated. The partial lack of control over my bowels wasn’t pleasant but I used diapers. The worst part was the fatigue. I finished treatment in July 2024 and still not quite back to full strength. I’m getting there and otherwise feel fine. So hang in there, and stay positive!

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@terrymayo50

I have anal cancer, the Squamous Cell type. The port has already been installed and waiting for chemo and radiation. Has anyone else had this type cancer, if so, please tell your story.

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Hi my name is Tina, and I was recently diagnosed with squamous cell carcinoma anal cancer. I am a 53 year old female. Over the last two years I had some anal itching but didn't think anything of it. I had recently went through surgery for a total thyroid ectomy and the pain medication caused me to become constipated, which in that time is when I noticed that I had a huge tumor protruding in the vaginal area. I went to see the doctor to find out it was not in the vaginal area but it was in the rectal area. CT scans and MRI revealed a mass and also a lymph node that was enlarged. They did a colonoscopy and found the mass did a biopsy and it was then revealed to be staged 2 squamous cell carcinoma anal cancer. I was ordered to do two rounds of chemotherapy one in the beginning of treatment and another at the fifth week I was given two different medication one was given in the office the other was put on a pump that I went home with for 5 days. I have finished both rounds of chemotherapy and I am now finishing my radiation. As I started the beginning of the 6th week of radiation they had to stop and give me a week's break because I was burned so badly down in that area that I could not handle any more radiation. I was ordered 30 plus session of radiation, which is a total of seven whole weeks. I still have 2 weeks left to go

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@yancy

Hi. I was Dx with squamous cell anal cancer in March of 2024. After several months of tests, etc., I started with one chemo infusion through a port, followed by 28 sessions of radiation and chemo pills. I had nausea only after that first infusion. I’m happy to say that I had no pain. It was so much “easier” than I anticipated. The partial lack of control over my bowels wasn’t pleasant but I used diapers. The worst part was the fatigue. I finished treatment in July 2024 and still not quite back to full strength. I’m getting there and otherwise feel fine. So hang in there, and stay positive!

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Thanks for sharing Yancy. Did anyone tell you your anal cancer phase? Was it photon or proton radiation?
I stepped outside of my Medicare HMO and ordered a Galleri blood test online from Grail in December 2024 because I experienced mild, vague symptoms for about 3 years (bloated feeling, 5-9 daily pencil thin soft bowel movements with a reddish orange hue and occasional light bleeding). I developed distinct pain on the left side of my anus following a colonoscopy 2 years ago. I have fibromyalgia pain everywhere so I always worry about my brain’s ability to properly interpret the seriousness of pain signals. I was diagnosed with non cancerous colon polyps and hemorrhoids in February 2023 and told to repeat my colonoscopy in 5 years. Galleri blood test confirmed markers for anal cancer in Feb2025. My Medicare HMO doctor pushed back against this type of blood test until her anal palpation identified an irregularity on left side of anus. Sigmoidoscopy and biopsy confirmed squamous cell anal cancer. I am currently scheduled for mri, ct scan and surgery in late March. I hope to know stage and path forward by early April. Your fatigue comment is very helpful as I am primary caretaker for my partner of nearly 50 years who has severe dementia. I need to plan for outside help.
Thanks again for posting your comments.

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@tinamarie2025

Hi my name is Tina, and I was recently diagnosed with squamous cell carcinoma anal cancer. I am a 53 year old female. Over the last two years I had some anal itching but didn't think anything of it. I had recently went through surgery for a total thyroid ectomy and the pain medication caused me to become constipated, which in that time is when I noticed that I had a huge tumor protruding in the vaginal area. I went to see the doctor to find out it was not in the vaginal area but it was in the rectal area. CT scans and MRI revealed a mass and also a lymph node that was enlarged. They did a colonoscopy and found the mass did a biopsy and it was then revealed to be staged 2 squamous cell carcinoma anal cancer. I was ordered to do two rounds of chemotherapy one in the beginning of treatment and another at the fifth week I was given two different medication one was given in the office the other was put on a pump that I went home with for 5 days. I have finished both rounds of chemotherapy and I am now finishing my radiation. As I started the beginning of the 6th week of radiation they had to stop and give me a week's break because I was burned so badly down in that area that I could not handle any more radiation. I was ordered 30 plus session of radiation, which is a total of seven whole weeks. I still have 2 weeks left to go

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Hi Tina, see my lengthy reply to yancy. Thank you for sharing your experience. I am a 74yo female. I was recently diagnosed by a Galleri blood test that detects 50 types of cancer. Squamous cell anal carcinoma was confirmed by a biopsy. I’m currently awaiting surgery, ct, scan, mri, and staging in late march before treatment begins. I read somewhere that women are predominantly diagnosed with this rare cancer. Cigarette smoking is a factor. I quit smoking nearly 25 years ago. I’m sorry to hear about your severe radiation experience. Are you being treated with a photon or proton laser?

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@tinamarie2025

Hi my name is Tina, and I was recently diagnosed with squamous cell carcinoma anal cancer. I am a 53 year old female. Over the last two years I had some anal itching but didn't think anything of it. I had recently went through surgery for a total thyroid ectomy and the pain medication caused me to become constipated, which in that time is when I noticed that I had a huge tumor protruding in the vaginal area. I went to see the doctor to find out it was not in the vaginal area but it was in the rectal area. CT scans and MRI revealed a mass and also a lymph node that was enlarged. They did a colonoscopy and found the mass did a biopsy and it was then revealed to be staged 2 squamous cell carcinoma anal cancer. I was ordered to do two rounds of chemotherapy one in the beginning of treatment and another at the fifth week I was given two different medication one was given in the office the other was put on a pump that I went home with for 5 days. I have finished both rounds of chemotherapy and I am now finishing my radiation. As I started the beginning of the 6th week of radiation they had to stop and give me a week's break because I was burned so badly down in that area that I could not handle any more radiation. I was ordered 30 plus session of radiation, which is a total of seven whole weeks. I still have 2 weeks left to go

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Hello! I too had squamous anal cancer. It was diagnosed in 2022. I was 72 at the time. I had six weeks of chemo in pill form and radiation. I didn’t have much of an appetite and felt very tired. After the first week of treatment I could feel the tumor shrinking because the pain was abating. A couple of weeks into the radiation is when the after effects began. I was told that throat and pelvic radiation are the two most painful to tolerate. That was so true. Installing a bidet on our toilet really helped to soothe the pain. The pain was bad enough but then the fecal incontinence began. I either spent all my day in the bathroom or was looking for one. The radiation damaged my sphincter muscle. As a result of that in October of 2023 I had colostomy surgery and now have a stoma. I named her Libby because she’s liberated me from the bathroom! My quality of life has increased 100%. I have been having Ct scans and MRI every 6 months. I am awaiting an MRI on Monday. If the results are good I will be able to go a year until the next round of scans. To say it’s been a roller coaster would be putting it mildly. Hernias are very common after colostomy surgery. I unfortunately have developed one. I will probably be facing surgery to repair it in the next few months. It’s not easy but we do what we have to do.

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@rioa21

Hello! I too had squamous anal cancer. It was diagnosed in 2022. I was 72 at the time. I had six weeks of chemo in pill form and radiation. I didn’t have much of an appetite and felt very tired. After the first week of treatment I could feel the tumor shrinking because the pain was abating. A couple of weeks into the radiation is when the after effects began. I was told that throat and pelvic radiation are the two most painful to tolerate. That was so true. Installing a bidet on our toilet really helped to soothe the pain. The pain was bad enough but then the fecal incontinence began. I either spent all my day in the bathroom or was looking for one. The radiation damaged my sphincter muscle. As a result of that in October of 2023 I had colostomy surgery and now have a stoma. I named her Libby because she’s liberated me from the bathroom! My quality of life has increased 100%. I have been having Ct scans and MRI every 6 months. I am awaiting an MRI on Monday. If the results are good I will be able to go a year until the next round of scans. To say it’s been a roller coaster would be putting it mildly. Hernias are very common after colostomy surgery. I unfortunately have developed one. I will probably be facing surgery to repair it in the next few months. It’s not easy but we do what we have to do.

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Wow Rio, sounds like you’ve been through a lot! Happy to hear that your quality of life is better now. Hernia surgery is a piece of cake compared to your prior medical treatments. Do you know if you had photon or proton radiation? I have read that proton radiation is more targeted to needed area and is less likely to damage surrounding areas. I’m having surgery soon but need to figure out next steps after surgery and staging.

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@trippster

May I ask what symptoms you had that lead to the diagnosis? I am concerned about possibly having this with my indications. Colonoscopy not scheduled till next month

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Hello tipster, I explained my vague symptoms before colonoscopy in February 2023 (numerous daily pencil thin bowel movements, mild pain on left side of anus, minor occasional bleeding) and was diagnosed with hemorrhoids. Non cancerous polyps were removed and biopsied and I was informed that there was no need for another colonoscopy for 5 years. I was 72yo and also heard that my Medicare HMO doesn’t like to do colonoscopies after 75yo due to risks. I just didn’t feel like hemorrhoids explained my symptoms so I “treated” myself to an expensive Galleri blood test ordered online that detects 50 types of cancer. Blood test detected anal cancer and hpv16. Biopsy from my HMO confirmed anal squamous cell carcinoma. Now awaiting surgery and further testing for staging. I plan to get a 2nd opinion for further treatment following surgery and staging.

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@celia16

@amyb5 ,

Thanks for that info.
After my intermittent anal pain, I got an appointment with the colorectal surgeon that I saw over a year ago for a thrombosed external hemorrhoid that burst on its on.( I went to her about that burst hemorrhoid and discovered it would heal on its own and it did.) She performed another anoscopy at the office visit and said it was completely normal. I explained I was afraid of cancer. She did see some internal hemorrhoids that were inflamed, but not needing treatment. She agreed with my hypothesis that my pain was proctalgia fugax.

She still wants me to get the colonoscopy, just to be cautious, plus to explore the constipation. They never have run any labs or scans. I read where a lot of people get those ordered, but I’ve been dealing with this problem for over 17 months. I don’t get it. Oh, my colonoscopy is still in April and can’t be moved up.

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Hi celia16,
If you can afford $949, consider the galleri.com blood test that detects 50 types of cancer. My nagging feeling that hemorrhoids were not causing my vague symptoms was confirmed by my galleri report that detected anal cancer markers in February 2025. Armed with the galleri report, I was able to get an anal biopsy through my Medicare HMO that confirmed anal squamous cell carcinoma and HPV16. I’m now awaiting surgery and further testing for staging. I am hopeful that I caught it early thanks to my nagging hunch and the galleri blood test. I’m a senior ex-smoker so so I would have great about my blood test investment, even if no cancer signals were detected.

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@samclembeau

i am about to start proton radiation for anal cancer caused by the hpv 16 virus.
i thought for months that i had hemorrhoids but the gyn said i needed a colonoscopy to make sure and i was lucky to get one within a couple of months.
the dr. was there when i came to and said it looked like squamous cell cancer but i had to wait for the results of the biopsy. was inconclusive. second biopsy at UCSF also inconclusive so wend to a surgeon who i had hoped would just remove it, but was on the sphincter muscle so just took a biopsy. this time it was biopsied as cancer. had pet scan that verified it as stage 2. it is usually a slow growing cancer so i thought i had time to determine how i was going to have it treated. i was wrong. the pain got much worse and felt like my rectum was closing up on me. the only way i can go to the bathroom is if i have diarrhea. so my advise, for what is is worth, is the get going as soon as possible before it gets worse. i am now at stage 3 almost stage 4. (involves 2 lymph nodes). Less than a year later.
i don't know where you are located, but have found that most institutions do only regular photon radiation for anal cancer , even if they they have proton at that hospital. i found, because of another person here on mayo clinic connect, someone that went through this and found california proton cancer center where that is all they do. they are affiliated with UCSD and Scripps.
i hope this helps you decide what to do. don't wait. it doesn't get better on its own.

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Samclembeau, Thank you for your post! Galleri blood test detected anal cancer markers and HPV16 in early February 2025 (now confirmed via HMO biopsy). My Medicare HMO feels like my cancer is slow growing and is not urgent, so I’m awaiting surgery and testing for staging at end of march 2025. I’m in SF Bay Area and I’m amazed that there are 4 proton radiation centers in SoCal but not a single one in our tech heavy area. I’m planning 2nd opinion for post surgery treatment. I’m guessing that I will need to self pay to go outside of my Medicare HMO for proton treatment in SoCal. I would love to hear more about your experience, if you have time. I have lots of planning to do while waiting for surgery and staging because I am primary caretaker for my life partner who has lots of health problems, including severe dementia. I need to plan for his care too.

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@katme

Hi celia16,
If you can afford $949, consider the galleri.com blood test that detects 50 types of cancer. My nagging feeling that hemorrhoids were not causing my vague symptoms was confirmed by my galleri report that detected anal cancer markers in February 2025. Armed with the galleri report, I was able to get an anal biopsy through my Medicare HMO that confirmed anal squamous cell carcinoma and HPV16. I’m now awaiting surgery and further testing for staging. I am hopeful that I caught it early thanks to my nagging hunch and the galleri blood test. I’m a senior ex-smoker so so I would have great about my blood test investment, even if no cancer signals were detected.

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My goodness you have a lot going on! I appreciate your response.

So glad you took measures to figure out what was causing your issues. Best wishes with your upcoming procedure and treatment. And, with finding care for your partner. That is an incredibly daunting task. I can’t imagine.

Since my post upthread about my digestive problems, I did get a second anoscopy, a second colonoscopy and a colon biopsy, which were normal. And, my constipation has mostly resolved. I’m not taking anything, including Miralax, right now. So, I’m very grateful. I do appreciate the tip about the blood test, though. I will keep it in mind.

You were indeed lucky to have caught things early! Please post your progress in treatment. It sounds very promising! Thanks again.

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