Recurrent Anal Cancer

Posted by tomdc @tomdc, May 19 1:27am

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.

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

Then travel, you need a second opinion .

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I would travel to get an expert opinion regardless of cost or inconvenience. Clearly the strategy that has been employed so far is not working so go to an expert clinic. Wishing you the very best.

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@tomdc I also live in a small town in a rural part of Michigan. I travel to Mayo Clinic (7 hours by car) for my cancer care. I had my surgery at Mayo Clinic for endometrial cancer and radiation therapy for a recurrence also at Mayo Clinic. My gynecologist made the referral for me. You can ask your present oncologist or your primary care provider for a referral to a major cancer care center. That's what I would do in your situation and it's what I would recommend to any member of my family. Here is some information from the NIH on comprehensive cancer care centers in the U.S.:

National Cancer Institute-Designated Cancer Care Centers:

-- https://www.cancer.gov/research/infrastructure/cancer-centers/find

Mayo Clinic is on the NIH list and you can request an appointment at Mayo Clinic:

-- http://mayocl.in/1mtmR63

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I recommend California Proton Cancer Center in San Diego.
I can't say enough good things about it.
the proton radiation can pinpoint the tumor only. different from negro which continues through the tumor and affects surrounding tissue.
you can send all your records to them and do a zoom meeting so you don't have to travel for a second opinion. you would need to go there for treatment if you choose to get treated.
that is the way I did it.
good luck

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I would recommend MD Anderson in Houston. The best in the world for any treatment plan involving radiation. Patients from across the world, but choose from the recommended options listed above based on your ability to get there. Also, very easy to get in super quickly. Took my family member less than 2 weeks from first phone call. Super friendly and caring—real Southern hospitality; patients can get special discounts regarding accommodation.

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Went to md Anderson for consultation. They would not do proton radiation for anal cancer. So depends on what therapy you are looking for.

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I am sorry to hear of the challenges facing you. It must be difficult. I would consider exploring just sending your records to a cancer center, and doing a video or even phone call consultation. It would not require traveling at all.
Your local hospital , primary care may be able to help send over everything. If you need help arranging all that, the cancer center you seek help from may even be able to support you in that. Your local faith leader or the chaplain at the cancer center may be able to support you as well.
Are you getting supports from others to cope with all your challenges?

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@samclembeau

Went to md Anderson for consultation. They would not do proton radiation for anal cancer. So depends on what therapy you are looking for.

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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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Hi @tomdc, welcome. I moved your message to the Colorectal Cancer support group (https://connect.mayoclinic.org/group/colorectal-cancer/). I did this so that you can more easily connect with other members who have experience with anal cancer like @wilcy @marty28 @samclembeau @amariewilkinson

Lucily there are options for treating recurrent anal cancer.

As others have mentioned, getting a second opinion at a major cancer center of excellence is a good idea. If you wish to consider Mayo Clinic's oncology experts, you can submit a request here: http://mayocl.in/1mtmR63 There are 3 locations in AZ, FL or MN.

Mayo Clinic can evaluate your situation, offer treatment and/or work with local oncologists to administer treatment closer to home.

How are you doing?

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@colleenyoung

Hi @tomdc, welcome. I moved your message to the Colorectal Cancer support group (https://connect.mayoclinic.org/group/colorectal-cancer/). I did this so that you can more easily connect with other members who have experience with anal cancer like @wilcy @marty28 @samclembeau @amariewilkinson

Lucily there are options for treating recurrent anal cancer.

As others have mentioned, getting a second opinion at a major cancer center of excellence is a good idea. If you wish to consider Mayo Clinic's oncology experts, you can submit a request here: http://mayocl.in/1mtmR63 There are 3 locations in AZ, FL or MN.

Mayo Clinic can evaluate your situation, offer treatment and/or work with local oncologists to administer treatment closer to home.

How are you doing?

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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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