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Recurrent Anal Cancer

Posted by tomdc @tomdc, May 19, 2024

Diagnosed with Stage IIa Anal Cancer in 2022. Underwent standard Nigro protocol. Was NED for 9 months before cancer returned in same spot. Had APR surgery in August of 2023 but surgeon could not get clean margins. Underwent Nigro again (I'm 78 with A-fib, CHF, CKD, diabetes) so nothing really to lose. However, most recent PET scan showed cancer still there. Are there any other treatment options, such as a different chemo (had 5-FU and cisplatin) or immunotherapy? I live in a very small town with no big cancer centers so I would have to travel a long way to get any good second opinions.

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Colleen Young, Connect Director | @colleenyoung | Jun 5, 2024
In reply to @tomdc "I would love an evaluation from Mayo Clinic but there are obstacles. First and foremost, we..." + (show)
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I would love an evaluation from Mayo Clinic but there are obstacles.

First and foremost, we have no money. I had a 50-day hospitalization back in 2010 due to going septic. As a result, I have health issues that over time has taken our money. Then the cancer was diagnosed in 2022 that has devastated our finances. Trying to stay alive and now colostomy supplies are taking a toll.

I was told that Nigro would probably be 80-90% successful. Cancer recurred in same place about 9-12 months later. Told that APR was necessary and would probably provide a cure. Surgeon could not get all the cancer. Went thru Nigro again. Cancer did not respond; hence, the nothing more can be done diagnosis.

I have nowhere to turn and no options. I don't want to die from cancer.

Does Mayo offer telemed evaluations?

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@tomdc, Mayo Clinic welcomes both new and existing patients for virtual and in-person care in adherence with federal and state executive orders and guidance. Virtual care is available for out-of-state patients if the provider you are seeing is licensed in the state where you live.

You may wish to find out if telemed may be an option in your situation. You may also see if you could access financial assistance:
- Charitable Care and Financial Assistance at Mayo Clinic https://www.mayoclinic.org/patient-visitor-guide/billing-insurance/financial-assistance

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samclembeau | @samclembeau | Mar 24 10:08am
In reply to @gisellef "They will offer the best option based on research and experience. As you say, that may..." + (show)
Profile picture for gisellef @gisellef

They will offer the best option based on research and experience. As you say, that may not be proton therapy but I trust that it will be the most effective option available. Most patients in an early stage of the disease will have options.

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@gisellef problem is that anal cancer is pretty rare, though it is growing.
recommendations are given based on research and numbers. studies are rarely funded for rarer conditions. if research was not done or doesn't have the numbers to back up the procedure, it will not be recommended by the mainstream cancer centers. my question to the oncologists was, how do you get the numbers if you don't do the procedure.
proton radiation (still relatively new) is now becoming almost the go to for so many cancers because there is less harm done. soon, I am sure, they will do some larger studies on anal cancer and find that it works for that too. right now they know the negri protocol works; proton is a gamble for them without data. doesn't make that the most effective treatment, just the surest.
my own personal experience was that it was not only easier with less damage, but was just as effective.

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