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Anyone out there with Thymoma/Thymic Carcinoma

Cancer | Last Active: Sep 3, 2023 | Replies (136)

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I have heard many good things about "Dr. Thymoma" (loehrer) There is some confusion about wether I have Thymoma or Thymic Carcinoma. My first oncologist said Thymoma but after biopsy changed it to Thymic Carcinoma. Until the last 10 years or so even Dr.s that had heard of it, many thought they were one and the same, but subsequent Dr.s' kept referring to it as Thymoma. When I pushed them on this my oncologist said they thought possibly both ?????? I found that a stretch. If you didn't have a biopsy how did they know it was Thymoma? I had surgery 10 days after a chest x-ray for a bad cough discovered a Large anterior mediatastal mass. measured 14.3x7.4x4.1 the surgeon said another couple weeks it would have been pushing on a major artery and I would have fallen over dead, as he was the head of thorasic surgery I believe him !! I then had 28 sessions of radiation (to slow the imevitable return).
I made it 5 years when a biopsy confirmed it had returned . I agreed a biopsy was needed to determine it was not a bunch of granulomas which I have and am taking prednisone for to try to shrink. Five long wonderful years and it rose its ugly head again. Surgery was no longer an option as it had metastasized to many areas. The Dr.s' and I agreed on chemo as it would most like;y extend my life and I would have more quality time with my grandchildren I was only 57. So I began my palliative care which I had been on for awhile as there is no cure for Thymoma / Thymic. The chemo did shrink all the tumors with only one small stubborn area remaing. I have been going for scans every 3 months for quite awhile and my last PET showed a return am not ready to head into another round of chemo without being 100% it is cancer and not granulomas 90% is not good enough to justify the pain and other complications. But I had 2 more good years with the chemo all we are trying to do is extend my life with quality.
I am so happy for you that things are going well !!! And from all I heard you are under excellent care! I also do not have Myasthenia Gravis which MIGHT point towards Thymic as they are not associated. Keep up the scans and I hope you continue to do well.

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Replies to "I have heard many good things about "Dr. Thymoma" (loehrer) There is some confusion about wether..."

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.