Anyone out there with Thymoma/Thymic Carcinoma?

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.

@missbev, how are you and your husband doing?

Hi @vickilk, I don't have a specialist recommendation in Southern Calaifornia, but I wonder if you've considered working with your Mayo Clinic cancer team in collaboration with a local cancer specialist?

I'm tagging fellow thymoma cancer members like @missbev @andylevine @lmno @anotherfinemass who may have additional thoughts.

You might also be interested in these related discussions if you hadn't seen them already:
- Thymic Tumors
https://connect.mayoclinic.org/discussion/thymic-tumors/

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 Colleen. I last week I finished a 12 week treatment (once a week) and am waiting to do a Pet scan 2 weeks from now to evaluate. I have had Surprisingly few side effects, mostly unable to sleep on treatment nights due to steroids. Hair is falling out, I've had some digestive problems, and taste is very strange. Otherwise I feel good and I maintain a positive attitude. Truthfully, I'm convinced that God already has planned for this and one way or another I WILL Be healed. Thanks for your concern.

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 Erin. I'm just wondering what you're current status is since your part is 5 years old. I was diagnosed with thymic Carcenoma this past June and I'm now in week 10 of a 12 week chemo plan. The best prognosis I've heard so far is that 55% of patients with this chemo live another 5 years. I deeply hope all is well with you. Blessings.
Joe