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Feb 7, 2017 · Anyone out there with Thymoma/Thymic Carcinoma in Cancer

Allison, I felt it was worth my time to see Dr. Loehrer. He spent at least 45 minutes with me explaining the disease, my case and future treatment. The doctors at Mayo had initially
recommended radiation. I felt very uncomfortable with this since I believe my Thymoma was a result of chest radiation I had in 1987 for Lymphoma. He agreed and said that radiation doesn’t help if the tumor is completely removed. He said it tends to recur in the lining of the lungs – so where do you radiate? Also he gave me a scan schedule which the doctors at Mayo are using. I liked him and felt peace about his plans. My Thymoma was stage 2a type b3. Praying for peace and wisdom for you. I highly recommend the Thymoma Facebook group too.

Feb 6, 2017 · Anyone out there with Thymoma/Thymic Carcinoma in Cancer

Concerning the type of thymoma, they said something similar to me about not being able to differentiate completely between Thymoma and thymic carcinoma. They said to think of the tumor as a chocolate chip cookie. Stage b1 only has a few chocolate chips. Stage b3 is much denser. Thymic carcinoma would be almost all chocolate chips. I hate to attach something so awful to chocolate chips, but it did help me understand . There have been a few studies about the risk of recurrence and the various types but the most important variable for long-term survival is removing the whole tumor before it has a chance to seed. I go to mayo clinic next week for my second scan. I will not go back to Indianapolis unless the cancer recurs. I will also see a cardiologist because I developed left bundle branch block in my heart since the surgery last year. Praying for good answers for you. Every day that goes by brings new hope for better treatments.

Feb 5, 2017 · Anyone out there with Thymoma/Thymic Carcinoma in Cancer

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.

Feb 5, 2017 · Anyone out there with Thymoma/Thymic Carcinoma in Cancer

I was diagnosed with Thymoma last year at Mayo Clinic in Jacksonville. A CT scan for something else showed an unusual growth on my thymus. A wonderful team of mayo clinic doctors removed it and I am being followed every four months with CT scans. There is a wonderful Facebook group with lots of information about this cancer. It is called thymoma cancer research. I also saw the top specialist in the country at Indiana University. His name is Dr. Patrick Loehrer. Many people have a good prognosis and new treatments are being developed every day. With a condition so rare, you have to do a lot of footwork on your own. Prayers for healing and recovery.