Anyone out there with Thymoma/Thymic Carcinoma

I am sending prayers to you. All I can say take one day at a time. I know it’s a redundant statement but it helps me when I am upset.

I don't mean to scare anyone. I was diagnosed with a thymoma in February of 2023. Surgery on May 12, 2023. I was told it would be a robotic surgery, only being out of work for 3 weeks. I woke up with tubes all over me, a gash a foot long in my back shoulder area, right below my shoulder blade, with tubes coming out of it, and missing half a lung, along with nerves cut. I've been in pain ever since. The pain is constant and unbearable. What was suggested by one Pain Center, and a 2nd opinion a 3-hour drive away, my insurance will not cover what they suggested. I went through radiation, got shingles, got pneumonia, unbearable nerve pain for over 2 years now. Having regular CT or PAT scans. Oh yeah, shingles reoccurred, and another trip to ER with pneumonia. I was a hefty 145 lbs. at 5'2", I'm now trying to maintain 94-95 lbs. It's just hard to have an appetite with all the pain. I go to Mayo Clinic tomorrow and am praying so hard they can help me. I'm excited, but hard to hold out hope right now. I'm accepting all the prayers I can get.

Hi, I am in a similar situation. I was diagnosed 1/17/25. Surgery 3/24/25. How are you doing.

I had a thymoma removed April 21st, 2016.

It all started in January of 2016, I was having shortness of breath. I was first told it was my gallbladder and had surgery to remove it in February. When the shortness of breath continued, I was told it was anxiety. Knowing something was wrong, I went back to the clinic several times, finally pleading for further testing, a simple chest X-ray revealed a mass in my chest, a CT confirmed a baseball sized mass that was pushing up against my heart and lungs, causing the shortness of breath. I was scheduled for surgery with a cardiothoracic surgeon a week later. I was staged at a thymoma b2/b3. The tumor was encapsulated, except one small area of concern. The local pathologist felt there were some abnormal cells in that area. The local oncologist felt there was no concern. I decided to get a second opinion at Mayo. The first oncologist at Mayo felt radiation was a must. The radiation oncologist felt monitoring was a more appropriate approach due to my young age and the increase risk of other cancers with radiation. Because of these two separate recommendations, my case was brought to a board of oncologists. The final decision was to monitor by CT scan every 6 months. My first scan was clear. (Yay!) They said a thymoma is most likely to return within the first 2-5 years after resection. I am scheduled for my next follow up scan in April.

My husband has recurring Thymoma. He was diagnosed in 2005 with thymoma. Surgery then checked for 6 or so years, everything seemed good. Then in 2015 it came back. He has been doing chemo off and on for 7 years now. He is starting to get some other symptoms like, eye-site problems blurt, spots in eyes, changes in vision. Starting to have issues swallowing, not bad but has a couple times of not being able to swallow just for a few seconds.
He just got finished with a chemo pill 21 days on and 7 days off cycle for 4 months. It was rough on him not at first but about half way thru it just got worse and worse. He will be checked with a scan at Indiana universities Simon canter. Dr Patrick Loehrer on the 19th of April. 🙏praying it reduced it again, so he can have another break.

Hello,
I've found a lot of comfort and learned a great deal from the stories here. I was wondering if you could suggest any oncologists in Southern California who know about thymoma. I'm 59 years old and I recently had two surgeries to deal with a thymoma. The first surgery was on June 15, 2023, because they thought it was a teratoma. But after more tests at the Mayo Clinic, they found out it's a specific kind called thymoma type B (60%) with Type B3 parts. Then, on July 24, I had another surgery where they removed the thymoma completely. This surgery took out the left phrenic nerve, a part of my lung, and the pericardium.

Since the tumor was taken out in two different surgeries, I'm told there might be a bit more risk, like the possibility of spreading. I haven't seen an oncologist yet. Because thymoma is rare, I'm asking if anyone knows of good doctors in Southern California who have experience with it. Your help means a lot to me.

My husband has recurring Thymoma. He was diagnosed in 2005 with thymoma. Surgery then checked for 6 or so years, everything seemed good. Then in 2015 it came back. He has been doing chemo off and on for 7 years now. He is starting to get some other symptoms like, eye-site problems blurt, spots in eyes, changes in vision. Starting to have issues swallowing, not bad but has a couple times of not being able to swallow just for a few seconds.
He just got finished with a chemo pill 21 days on and 7 days off cycle for 4 months. It was rough on him not at first but about half way thru it just got worse and worse. He will be checked with a scan at Indiana universities Simon canter. Dr Patrick Loehrer on the 19th of April. 🙏praying it reduced it again, so he can have another break.