EGPA/CSS with Thymoma

[grindhaus]

HI all,

One of my early CTs soon after diagnosis of EGPA/Churg-Strauss Syndrome was of the chest, to look at lungs, as I also had breathing problems (asthma, pneumonia). The radiologist report included a finding of a mediastinal mass - it appeared to be encapsulated and wrapped around my thymus. Thymoma was suggested, a PET scan was done and was negative for any reaction, so they told me it did not appear to be growing, it is benign. The thymus is instrumental in the development of our immune system before early teens; there is speculation whether this thymoma may be related to cause or aftereffect of the autoimmune condition. Will removing the thymus possibly improve the disease symptoms? Thymomas are very rare (yes, aren't we special) and show a high incidence of accompanying autoimmune disorders, esp. myasthenia gravis. I do not appear to have MG, the mass is benign, and my neurologist, supported my health team, advised we do not remove the thymoma at this time. They didn't tell me a plan for monitoring this thing, just in case it decides to become malignant. I'm a little concerned... as my review of the research and recommended treatment for thymoma says that surgery (thymectomy) is the mainstay of treatment and that complete thymectomy was recommended vs attempting to remove the tumor from the thymus.

So, a long-winded way of asking if any others here have been diagnosed with thymoma? And if so, how was it treated and was that approach successful? Was there any improvement in your disease symptoms? Thanks very much!

[Cathyed]

Good evening,

I was diagnosed with a thymoma which was completely plaid down by my consultant.

He insisted that it needed removing as there was evidence of growth.

He actually said to me “this operation is not going to get my heart racing”

I had the operation and it turned out that there were lymph nodes involved the lump was attached to the phrenic nerve and heart and lung.

I ended up having Chemo and Radiotherapy.

I would certainly recommend a second opinion to be sure.

Take care

Cathy

[grindhaus in reply to Cathyed]

Thank you Cathy for replying- I'm sorry I missed your message when you sent it-

What type of vasculitis or other condition do you have? What was the final diagnosis, was it still a thymoma? What did the surgeon remove, some lymph nodes, and the thymus?

I'm sorry you had to have the treatments- but great if you are in the clear now--

Are you feeling better now, or what has changed since the surgery? Sorry so many questions- I do appreciate your reply, thank you - G

[Purpled in reply to grindhaus]

Hi, just saw this post whilst looking for thymoma, did you have it removed. I was told by cardiologist to just leave it. Saw someone else who said it had to be removed. Had it took out three months ago, these things can invade heart lungs etc and then become inoperable. I had no symptoms but was an incidental finding on a ct angiogram.