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

Interested in more discussions like this? Go to the Colorectal Cancer Support Group.

Sorry to hear about the other lymph node involvement. Don’t give up hope though. It seems many cancer centers still think out of the box so I hope you are in good hands. I get my staging and initial consultation at Fred Hutch in Seattle tomorrow but am getting additional consultations as well. I wish you the best.

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@katme

Thank you samclembeau! It’s good to hear that pelvic bones were spared. I also have osteoporosis, especially spine. Also appreciate hydration tip. My affected lymph nodes are in distant pelvic locations so they have an “m” categorization (likely signifies metastasis) which puts diagnosis at stage 3b or 4 according to various cancer websites. I think chemo will be mandatory for me because of metastasis. You mentioned that your proton center Dr said anal cancer was his favorite to treat. Can you share his name? I understand that anal cancer is rare, so it would be nice to work with someone experienced. Thanks again for sharing info.

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His name is Iain MacEwan. You will love him.

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@samclembeau

Katme, I had 2 lymph nodes affected and that put me at stage 3.
Proton radiation only affected my tail bone. The radiation stopped before it could it could get to my pelvic bone. I was quite concerned about my bones since I have osteoporosis. Was assured that tail bone would be the only bone they had to go through (has to get to tumor somehow) but you can live quite well with a broken tailbone, but a broken pelvis…..no thanks.
Btw, tail bone is just fine.
Lana67, the SD proton center is affiliated with USSD medical. You can use an oncologist from there or, as I did, a Scrips doctor that was recommended to me. They will want you to have an oncologist even if you don’t take chemo. I did chemo for a little over a week. Didn’t like it so I quit. My oncologist was very understanding.
I also recommend asking for hydration infusions. Huge difference in how you feel. Both radiation and chemo cause diarrhea so infusions keep you somewhat normal.

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Thank you samclembeau! It’s good to hear that pelvic bones were spared. I also have osteoporosis, especially spine. Also appreciate hydration tip. My affected lymph nodes are in distant pelvic locations so they have an “m” categorization (likely signifies metastasis) which puts diagnosis at stage 3b or 4 according to various cancer websites. I think chemo will be mandatory for me because of metastasis. You mentioned that your proton center Dr said anal cancer was his favorite to treat. Can you share his name? I understand that anal cancer is rare, so it would be nice to work with someone experienced. Thanks again for sharing info.

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@katme

I am 74yo and also waiting for staging. However, recent MRI results show metastasis to lymph nodes. I’m guessing stage will be 3b or 4. I am also concerned about effects of radiation with osteoporosis. Also 40% of our bone marrow is in pelvic area. Quality of life after radiation is important to me. I have an HMO and may have to self fund care outside my HMO at the SD Proton Center.

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Katme, I had 2 lymph nodes affected and that put me at stage 3.
Proton radiation only affected my tail bone. The radiation stopped before it could it could get to my pelvic bone. I was quite concerned about my bones since I have osteoporosis. Was assured that tail bone would be the only bone they had to go through (has to get to tumor somehow) but you can live quite well with a broken tailbone, but a broken pelvis…..no thanks.
Btw, tail bone is just fine.
Lana67, the SD proton center is affiliated with USSD medical. You can use an oncologist from there or, as I did, a Scrips doctor that was recommended to me. They will want you to have an oncologist even if you don’t take chemo. I did chemo for a little over a week. Didn’t like it so I quit. My oncologist was very understanding.
I also recommend asking for hydration infusions. Huge difference in how you feel. Both radiation and chemo cause diarrhea so infusions keep you somewhat normal.

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@lana67

The bone marrow is another concern of mine as well as long term effects of radiation. I wish I could get some of my stem cells harvested and kept if needed for later.

Which lymph nodes of yours are affected? Mine are in the mesorectal lymph nodes.
If you go to the SD clinic
How will you do your chemo? Do they have a place within the proton center?
Did they give any stats on number of women treated and outcomes?

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Mine has metastasized to multiple distant non regional pelvic lymph nodes. I called proton center and registered so they could coordinate with my health plan and obtain medical records needed for $425 preliminary consultation. It will be 1-2 weeks before phone consult while I wait for my HMO staging follow up appointment 4/9. If you’re interested, I recommend calling the new patient phone # on the proton center web site. I personally don’t need more stats as my 5 year survival rate dropped due to distant metastasis. I just want the treatment that will call the least harmful side effects.

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@roywalton

Intensity-Modulated Radiation Therapy (IMRT) is an advanced form of radiation treatment commonly used to target cancerous tumors with precision, minimizing damage to surrounding healthy tissues. It uses computer-controlled linear accelerators to deliver radiation in sculpted doses that conform to the shape of the tumor. While effective for many cancers (e.g., prostate, head and neck, breast, and brain tumors), IMRT’s long-term effects depend on factors like the treatment area, dosage, patient health, and duration of exposure. Below, I’ll outline the potential long-term effects based on available medical understanding.
General Long-Term Effects
Secondary Cancers: Radiation, even when precisely targeted, can damage DNA in healthy cells, potentially leading to secondary malignancies years or decades later. The risk is relatively low with IMRT due to its precision, but it’s not zero—estimated at 1-5% higher than no radiation, depending on the study and site treated.
Fibrosis: Over time, radiation can cause scarring or thickening of connective tissues (fibrosis) in the treated area. This might lead to stiffness, reduced mobility, or organ dysfunction (e.g., lung fibrosis after chest radiation).
Chronic Fatigue: Some patients report persistent tiredness long after treatment, though this is less specific to IMRT and more a general radiation therapy outcome.
Vascular Damage: Radiation can affect blood vessels, potentially leading to reduced blood flow or increased risk of cardiovascular issues, especially in areas like the chest or neck.
Site-Specific Long-Term Effects
Head and Neck: Dry mouth (xerostomia) from salivary gland damage, difficulty swallowing (dysphagia), dental issues, or thyroid dysfunction. Some patients experience hearing loss or jaw stiffness (trismus).
Prostate: Urinary incontinence, erectile dysfunction, or bowel issues like chronic diarrhea or rectal bleeding due to damage to nearby tissues.
Breast: Skin changes (thickening or discoloration), lymphedema (arm swelling), or rare heart complications if the left breast is treated.
Brain: Cognitive decline (e.g., memory or concentration problems), radiation necrosis (dead tissue in the brain), or hormonal imbalances if the pituitary gland is affected.
Factors Influencing Outcomes
Dosage and Fractionation: Higher doses or fewer fractions (hypofractionation) might increase late effects.
Age: Younger patients may face higher risks of secondary cancers due to longer life expectancy post-treatment.
Adjuvant Therapies: Combining IMRT with chemotherapy can amplify long-term effects on tissues or organs.
Mitigation and Monitoring
Modern IMRT techniques (e.g., image-guided IMRT or proton therapy variants) continue to evolve, reducing collateral damage compared to older radiation methods. Long-term effects are monitored through follow-ups, imaging, and symptom management (e.g., salivary stimulants for dry mouth or physical therapy for fibrosis). Patients are often advised to avoid smoking and maintain a healthy lifestyle to minimize risks.

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Thanks for the overview.
I’m hoping all my concerns will be taken into the plan as opposed to pigeonholing me into the standard protocol.

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@katme

I am 74yo and also waiting for staging. However, recent MRI results show metastasis to lymph nodes. I’m guessing stage will be 3b or 4. I am also concerned about effects of radiation with osteoporosis. Also 40% of our bone marrow is in pelvic area. Quality of life after radiation is important to me. I have an HMO and may have to self fund care outside my HMO at the SD Proton Center.

Jump to this post

The bone marrow is another concern of mine as well as long term effects of radiation. I wish I could get some of my stem cells harvested and kept if needed for later.

Which lymph nodes of yours are affected? Mine are in the mesorectal lymph nodes.
If you go to the SD clinic
How will you do your chemo? Do they have a place within the proton center?
Did they give any stats on number of women treated and outcomes?

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@lana67

I am a 67 year old woman
That is still in the staging and final testing phase. I did check in into the proton center in San Diego and they told me my insurance which is a Blue Cross and Medicare would cover it. I’m still trying to look at all my options as I have severe osteoporosis and urinary urgency so I’m so nervous about regular IMRT radiation and it’s long term effects.

Jump to this post

I am 74yo and also waiting for staging. However, recent MRI results show metastasis to lymph nodes. I’m guessing stage will be 3b or 4. I am also concerned about effects of radiation with osteoporosis. Also 40% of our bone marrow is in pelvic area. Quality of life after radiation is important to me. I have an HMO and may have to self fund care outside my HMO at the SD Proton Center.

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My prayers are with you. When was your last coloscopy?

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Hi, I have bleeding when emptying my bowls on the toilet paper (bright red) and some spots on Poo, also mucus on Poo, massive amounts of itching all the way around the anus, not always the same spots, I feel like there is a baseball stuck in my bowels, fowl smelling gas, no signs of any outer hemorrhoids or warts and I can never empty my bowels completely, more frequent use of washing. I have ibs-C so normally I only go to the bathroom every 4 or 5 days and now it is much more often. I have also had rectocele and cystocele repair. My doctor first said I had fissures and now healed but all symptoms remain, he then followed up with a digital exam and said he truly didn’t know what was going on. Sigmoidoscopy next week and I am afraid.
I have possible lupus signs (currently investigating, blood ANA test next week), fibromyalgia (another autoimmune disease).

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