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allisonsnow (@allisonsnow)

Anyone out there with Thymoma/Thymic Carcinoma

Cancer | Last Active: May 26, 2019 | Replies (112)

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@colleenyoung

@shelleyfl35 and @beitelash, welcome to Connect!
It is great to have found 2 more people to join @allisonsnow to talk about living with this rare cancer. Am I understanding that both of you have had surgery, and at the moment no further treatment (radiation or chemo) is necessary?

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Replies to "@shelleyfl35 and @beitelash, welcome to Connect! It is great to have found 2 more people to..."

Yes. My further treatment is ongoing scans. Dr. Loehrer, the Thymoma expert at Indiana University said that radiation is only necessary when the surgery margins are not clean. The doctors at Mayo Clinic were able to achieve clean margins using robotic surgery. I was in and out in 3 days and back to somewhat normal in 3 weeks. Chemotherapy is usually only used when the tumor needs to be reduced in size so that it can be surgically removed. I don’t think chemo provides a cure. From what I understand Thymomas should never be biopsied. That can cause them to seed and spread. Complete surgical removal is always the goal. Unfortunately, thymomas can recur many years after the first occurrence. This is why scans must continue indefinitely. Thymomas are strongly correlated with Myasthenia Graves, an autoimmune disease. I do not have this. I am assuming that mine was a result of radiation therapy in my 20s for Hodgkins Lymphoma.