Anyone out there with Thymoma/Thymic Carcinoma?

I just joined connect today. I have been diagnosed with Thymoma. Mayo believes it is stage three but there have been issues properly staging the tumor due to how much necrosis there is. My anxiety is just through the roof. I have never been to so many doctor appointments in my life. I am currently 44yrs old. My tumor is currently not operable due to how close it is to my aortic arch (I think that is what the surgeon said). They want to try and shrink it with chemotherapy and the idea terrifies me. Anyone here done chemo? I am also soooo scared of the eventual sternotomy. How did everyone stay positive and not spiral?

I’m having surgery 11/4 the surgeon hasn’t specified how he will go in.

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.