Anyone out there with Thymoma/Thymic Carcinoma

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.

Hi @joedeal, according to Allison's profile, she has not been on the forum since 2020.
I invite you to join this discussion where @anotherfinemass @shilo14 @gailkattouf @ggaines118 and others are talking about thymic carcinoma:
– Thymic Tumors https://connect.mayoclinic.org/discussion/thymic-tumors/

How are you doing on chemo? Side effects?

Hi Colleen. Do you know the status of @allisonsnow? I am hoping to chat with her. Considering that her posts are now 5 years old, that may not be possible. She is the only person I've found that has thymic Carcenoma. I'll be doing my 10th chemo treatment this afternoon. I'm wondering what the success rate is for treating this cancer. Do you know anyone that is willing to chat?

Hi Joe, I'm tagging @kisten23 to make sure she sees your questions to her.

Fatigue is one of the toughest side effects of cancer and its treatments, especially chemo. You might appreciate the tips shared by members in this related discussion:
- Fatigue and cancer treatment: How do you cope? https://connect.mayoclinic.org/discussion/fatigue-in-cancer-treatment/

I have looked into some of the trials and I thank you for the list of current (and past) trials. On many it is either the distance or requirements that rule out my participation. I have had surgery ,radiation (toma-therapy ) and chemo ( using two of the drugs tested in a previous trial ) .
As I am sure all of you do also, am getting a bit anxious for the tests and results.

I may have a rare cancer we all have so much in common, I look forward to rewarding discussions on connect.

Erin