Anyone out there with Thymoma/Thymic Carcinoma
Am just trying to find anyone to have a discussion with that is currently or has had the struggle with either of these cancers.
Interested in more discussions like this? Go to the Cancer Support Group.
Any suggestions for thymoma doctors in the Raleigh/Durham/Chapel Hill North Carolina area?
Hi @sunny123, the Duke Cancer Institute (DCI) is a National Cancer Institute-designated Comprehensive Cancer Center. Have you inquired about a thymoma specialist there? Might Mayo Clinic Jacksonville be a possibility for you?
Sunny, have you been diagnosed with Thymoma Cancer?
Hello! I am not sure if folks are still on this forum. I had an incidental finding of a Thymoma when I had a CT scan for pneumonia in Sept. 2021. After many tests, on Jan 14, 2022 I had a sternotomy surgery to remove a large B2:60% B:3 40% Thymoma. My case is rare, especially for Southern Oregon, the doctors had a tumor board to discuss what comes next. No chemo, but the area that would get radiation is large and there will be damage to my heart and R lung. My medical oncologist has reached out to Dr. Patrick Loehrer for me, hoping Dr. Loehrer will review my case. I am VERY concerned about the damage to my very healthy lungs and heart. I am 65 and (was) in excellent condition.
Welcome, @lmno. Allow me to tag fellow thymoma members to bring them back to this discussion: @boola @andylevine @allisonsnow @jacquie1 @shilo14 @shaycoe12 @mddelaney64 @nenners @hppydg @anotherfinemass
I can imagine that you are concerned about having such a large area of your chest exposed to radiation therapy and being told that there will likely be damage to your lungs and heart. At Mayo Clinic, there is a Cardio-Oncology Clinic especially for cancer patients who have heart disease or who are at risk of heart disease before, during and after treatment for cancer. You can read more here:
– Mayo's Cardio-Oncology Clinic https://www.mayoclinic.org/departments-centers/cardio-oncology-clinic/overview/ovc-20442193
I wonder if you might be a candidate to get radiation at Mayo Clinic or for your Southern Oregon oncology team to work with the Cardio-Oncology team at Mayo.
Has has your recovery been from the sternotomy? When are you supposed to start radiation?
I had very much the same concern as my thymoma was discovered during heart valve replacement surgery. I was able to get proton radiation treatment that minimized that risk. Insist on proton if it available anywhere near you.
Colleen, I was diagnosed with Thymic Carcinoma and not Thymoma. My recovery from the sternotomy has been a process, but doing great from the surgery. I started radiation 12 weeks after surgery, complete resection.
Thank you, Andy for your reply! After doing much more research this weekend, I agree about trying to get the Proton therapy instead of just radiation. My dilemma is that I live in Southern Oregon and will need to travel and stay in Seattle or the L.A. area for the course of treatment. How have you been doing since your surgery and Proton treatment? How long ago was your surgery to remove the Thymoma? Thank you again!
Thank you Colleen! My recovery from the sternotomy has been fairly easy. I met with the medical oncologist and the radiation oncologist and the next step would be the appointment to measure and get set-up for radiation here in Medford. However, I wasn't expecting the information regarding the high risk to my heart and lungs. The thymoma was large and there was only 1 margin in question, however the radiation will travel through my heart and right lung to reach that area. I spent the last several days researching the risks of: not even having any radiation treatment/ or having radiation treatment/ or having proton treatment (which involves treatment at least 500 miles away from home). Thank you again!
My surgery was in December 2015. I’ve been doing great thought it took about 2 years to bounce back.
Took quite a while to get back in shape.