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Did you have a thymoma? – Myasthenia gravis
Did you know Myasthenia gravis can be, but is not always associated with cancer?
“Rare tumors in the thymus gland, commonly known as thymomas, are found in up to 15% of MG patients” (located in the thymus gland). In turn, statistics indicate that 30–45% of people with a thymoma eventually go on to develop MG. Almost all MG patients with a thymoma also have anti-AChR antibodies” https://myastheniagravisnews.com/news/mg-more-severe-generalized-when-with-thymoma-study/, https://myastheniagravisnews.com/news/analyzing-thymoma-immune-cells-may-help-predict-mg-study-suggests/.
A thymoma can be discovered before any MG symptoms occur. Or, an individual can be suspected to have or diagnosed with MG. Then a thymoma is found when imaging is done. Were you one of these individuals? https://myastheniagravisnews.com/news/case-supports-soliris-promising-treatment-thymoma-associated-mg/. Have you experienced your cancer return after the thymoma was removed?
It is National Cancer Survivor Day! We send all our congrats and blessings to our community’s proud survivors. We are super thankful you’re here!
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5 Replies
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I did have a thymoma which just “happened” to be found on a chest x-ray during a visit to the ER for MG symptoms.
I had been diagnosed with MG about a year earlier. I asked my neurologist if we should look to see if there was a thymoma, she replied that it would not be necessary as they were very rare.
I began developing severe MG symptoms and went to the ER having difficulty walking, seeing and having spasms in my arms. That is when the chest x-ray was done, although it wasn’t because of the MG. It was simply the routine followed for anyone at the ER potentially have a stroke.
I was also told at one point that thymectomy should not be done for someone 60 or older. I was 61.
Once the thymoma was found, I underwent all of the examination and preparation for surgery and had a thymectomy within 4 months.
Since that time, my symptoms were reduced to only ocular myasthenia which has also subsided and I am now symptom free.
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Was it a large tumor or just small spots? I was told by the VA doctor that I had small spots on my Thymus but it woulnd not “probable” cause MG?
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At age 65, during a cardiac work up, a large thymoma was discovered on me. I underwent a robotic thymectomy, followed by radiation since it was invasive. Approximately two months later I began having symptoms of myasthenia gravis. This was confirmed by the neurologist with positive anti-ACH levels. I have had moderate generalized myasthenia gravis for the past 3 years, and have been on steroids, Mestinon, IVIg, Imuran, Rituxan, but I am down to just Mestinon and Vyvgart infusions. I get yearly chest CT scans to check for recurrence of the tumor. So yes, you can get MG after removal of a thymoma.
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I had a 7.2 cm thymoma removed via robotic surgery through a 1 inch incision in August 2020. The thymoma ruptured while being removed, resulting in 27 chest radiation treatments. Thymectomy was not done, and is unable to be done now due to adhesions and scarring from the radiation.
2 months after the thymoma was removed I was diagnosed with AcHR and MUSK positive generalized late onset MG. I was on prednisone for a year, very gradually weaning off. My MG symptoms have been mild, and I continue to take 60 mg Mestinon twice a day.
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I also had a thymectomy. Found it after my mg symptoms started and I diagnosed. It’s been over 3 years. Unfortunately the thymectomy did nothing to help my symptoms. I’ve tried every drug and infusion available. I’m now on weekly plasma exchange. And hoping for new drugs.
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