Diagnosed with CUTANEOUS anaplastic large cell lymphoma?

Hello @grysel25 Welcome to Mayo Connect. Cutaneous anaplastic large cell lymphoma is a bit of a rare one. From a search in our support groups the only mention I found was a possible association with a breast implant. There was no diagnosis or any treatments discussed.

But what I did find is this comprehensive website from the Cutaneous Lymphoma Foundation. I’ve posted the link below for you.
There is a menu of different topics that I think might be very valuable for you in learning more about your diagnosis, how it’s staged and possible treatment options. You can explore each topic that’s listed in the menu but I found these particularly helpful:
What is Cutaneous Lymphoma
Understanding my diagnosis
Patient Resources
About us (gives the story of the foundation)

Cutaneous Lyphoma Foundation
https://www.clfoundation.org/primary-cutaneous-anaplastic-large-cell-lymphoma

There are different types of this cancer so a clear diagnosis is important to treatment.

You asked about changing your diet. It sounds as though you’re already taking great care of yourself with exercising and not smoking or drinking. So if you’re eating a well-balanced diet, low in sugar and saturated fats with plenty of fresh vegetables, fruit, good proteins, whole grains, healthy fats, and smaller portions of meat there’s no reason to change.

Are you currently receiving any treatment? What were your symptoms?

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Hello! thank you very much for your answer. I don't have implants, but
reaching this diagnosis took the doctors almost two months. A few days
ago I was diagnosed. I still haven't received treatment, the
hematologist told me about surgery but I'll see him this week.

I live in Mexico, but I would be interested in attending your clinic.
what is the way?

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Hello @grysel25 Welcome to Mayo Connect. Cutaneous anaplastic large cell lymphoma is a bit of a rare one. From a search in our support groups the only mention I found was a possible association with a breast implant. There was no diagnosis or any treatments discussed.

But what I did find is this comprehensive website from the Cutaneous Lymphoma Foundation. I’ve posted the link below for you.
There is a menu of different topics that I think might be very valuable for you in learning more about your diagnosis, how it’s staged and possible treatment options. You can explore each topic that’s listed in the menu but I found these particularly helpful:
What is Cutaneous Lymphoma
Understanding my diagnosis
Patient Resources
About us (gives the story of the foundation)

Cutaneous Lyphoma Foundation
https://www.clfoundation.org/primary-cutaneous-anaplastic-large-cell-lymphoma

There are different types of this cancer so a clear diagnosis is important to treatment.

You asked about changing your diet. It sounds as though you’re already taking great care of yourself with exercising and not smoking or drinking. So if you’re eating a well-balanced diet, low in sugar and saturated fats with plenty of fresh vegetables, fruit, good proteins, whole grains, healthy fats, and smaller portions of meat there’s no reason to change.

Are you currently receiving any treatment? What were your symptoms?

Jump to this post

Thanks for the link.

I was diagnosticaded recently. I have no implants. On febreruary I
discovered a lession on the neeple zone. I had no pain or other symptomes;
only a big lost of hair AND a big ojeras.

During the ultrasonic they saw that one of the ganglios was bigger than
the otherd. Theymade a biopsy of the lesión and the ganglio.

They made some pathologics analisis during 2 months. Because the first
result was a papulosis but with some contradictions. They practiced more
analisis and now the finally result is Cutaneous anaplastic large cell
lymphoma.

Beside this deasese Is very strange I have many questions about how to
aboard my treatment. I will appreciate if you Know about someone with
experience that could help me.

Best regards

El dom., 7 de mayo de 2023 7:54 a. m., Mayo Clinic Connect escribió:

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Hello @grysel25, I haven’t been able to find anyone in the forum who has the same diagnosis. I’m hoping some new member will see this and be able to join in to share their experience with you.

From what I’m reading it does sound as though your current oncology team came up with a firm diagnosis. When dealing with a rare cancer, it can take several weeks or months to narrow down the possibilities. So don’t be too quick to dismiss your current team of doctors.
I think you have an appointment this week with your doctor. It will be good to hear what they have to say about treatment. Maybe you’ll feel more comfortable with the plan.

However, it never hurts to get a second opinion when possible so I gave you the information for Mayo Phoenix in the previous reply. Usually you’ll hear back from them within 3-5 business days.

But I’m here for you anytime. When you see your doctor and you get a treatment plan, we can talk more then, ok?

Jump to this post

Hello @grysel25, I haven’t been able to find anyone in the forum who has the same diagnosis. I’m hoping some new member will see this and be able to join in to share their experience with you.

From what I’m reading it does sound as though your current oncology team came up with a firm diagnosis. When dealing with a rare cancer, it can take several weeks or months to narrow down the possibilities. So don’t be too quick to dismiss your current team of doctors.
I think you have an appointment this week with your doctor. It will be good to hear what they have to say about treatment. Maybe you’ll feel more comfortable with the plan.

However, it never hurts to get a second opinion when possible so I gave you the information for Mayo Phoenix in the previous reply. Usually you’ll hear back from them within 3-5 business days.

But I’m here for you anytime. When you see your doctor and you get a treatment plan, we can talk more then, ok?

Jump to this post

I was recently diagnosed with Cutaneous T-Cell lymphoma. I had the necessary blood work and a PET. Fortunately, the disease is localized to the skin at this time. UV light is the treatment of choice. I cannot see doctors at Mayo because my insurance does not cover that site. After doing tons of research I am confident with the doctors - dermatologist and oncologist treating me.

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