Anyone out there with Thymoma/Thymic Carcinoma

Hello all - I just had an 8cm Thymoma surgically removed, 2 weeks ago. The pathology report just came back and said it was Thymoma AB, Stage IIA and suspicious for focally positive margin. It looks like I will need additional treatment so am looking for the best thymoma doctor/oncologist I can find in the mid-Atlantic area (Baltimore, MD to Richmond, VA) Does anyone have any doctor recommendations?

My dad had about 6 month of progressive SOB, fatigue. He went to primary care and MD alluded it was age related changes. He is 85. He was in really good health and very vigorous doing totaled work. The SOB and weakness continue and then a couple of months ago developed a dry hacking cough. After repeated ER and primary care visits, chest X-ray revealed elevated left diaphragm. This finding prompted a Chest CT and a 6cmx5cm anterior mediastinal tumor was seen. Biopsy later revealed squamos cell Thymic carcinoma. Excision not an option after a cardiac MRI revealed invasion into ascending aorta, pulmonary artery out flow tract. The metastasized to his pericardium and he developed pericarditis and required a drain to pull off 600 ml of metastic fluid. Later a pericardial window was made. We are now home experiencing some debility from 7 days in ICU, no food, no sleep, etc. His WBC stays elevated despite never growing anything out. I keep reading about wBC being elevated with tumor progression. Pet scan did not show distant metastatic disease. So, here we are just getting back to sleeping, eating, pooping, and ambulating now with a walker and oncologist is scheduling him for palliative chemo next week. The chemo is carboplatin and taxol in 1/3 dose every week. His performance scale is improving but not a 0. Any advice on how we can best aid him through this time? Again, his underlying health is quite good for 85 and is in part the reason they are willing to even consider chemo and radiation. Insight, suggestions, prayers welcome.

Hello @gailkattouf and welcome to Mayo Connect.

I can understand your concern for your dad. I am glad that you persisted in trying to find a diagnosis for him. He is fortunate to have you advocating for him with his medical problems.

We have quite a few members who have discussed this type of cancer, including @allisonsnow. You will probably hear from Allison as well as others in this discussion group.

While I don't have any personal experience with this kind of cancer, I do have a rare type of cancer, neuroendocrine tumors, and I understand some the concerns that go with a rare disorder.

Is your dad seeing a oncologist who specializes in this type of cancer?

Here is some information about this disorder, https://www.cancer.gov/types/thymoma/patient/thymoma-treatment-pdq.

You certainly have my prayers!

I would also recommend the thymoma page on Facebook. I was able to get a lot of information from others that have or had this rare form of cancer. It's called the Thymoma Support Group.

Hello @gailkattouf and welcome to Mayo Connect.

I can understand your concern for your dad. I am glad that you persisted in trying to find a diagnosis for him. He is fortunate to have you advocating for him with his medical problems.

We have quite a few members who have discussed this type of cancer, including @allisonsnow. You will probably hear from Allison as well as others in this discussion group.

While I don't have any personal experience with this kind of cancer, I do have a rare type of cancer, neuroendocrine tumors, and I understand some the concerns that go with a rare disorder.

Is your dad seeing a oncologist who specializes in this type of cancer?

Here is some information about this disorder, https://www.cancer.gov/types/thymoma/patient/thymoma-treatment-pdq.

You certainly have my prayers!

My dad had about 6 month of progressive SOB, fatigue. He went to primary care and MD alluded it was age related changes. He is 85. He was in really good health and very vigorous doing totaled work. The SOB and weakness continue and then a couple of months ago developed a dry hacking cough. After repeated ER and primary care visits, chest X-ray revealed elevated left diaphragm. This finding prompted a Chest CT and a 6cmx5cm anterior mediastinal tumor was seen. Biopsy later revealed squamos cell Thymic carcinoma. Excision not an option after a cardiac MRI revealed invasion into ascending aorta, pulmonary artery out flow tract. The metastasized to his pericardium and he developed pericarditis and required a drain to pull off 600 ml of metastic fluid. Later a pericardial window was made. We are now home experiencing some debility from 7 days in ICU, no food, no sleep, etc. His WBC stays elevated despite never growing anything out. I keep reading about wBC being elevated with tumor progression. Pet scan did not show distant metastatic disease. So, here we are just getting back to sleeping, eating, pooping, and ambulating now with a walker and oncologist is scheduling him for palliative chemo next week. The chemo is carboplatin and taxol in 1/3 dose every week. His performance scale is improving but not a 0. Any advice on how we can best aid him through this time? Again, his underlying health is quite good for 85 and is in part the reason they are willing to even consider chemo and radiation. Insight, suggestions, prayers welcome.

Those are the same two drugs I took. What I can tell you is that I was started at 100% strength I lost all my hair after the 2nd treatment. I struggled with nausea and they just gave me very effective drugs for that I didn't eat but I didn't really lose much weight. Pain was an issue so my levels were reduced. I didn't feel anybetter but I didn't get worse. As far as this decease goes I considered it worked.I did not get another recurrence for 3 yrs used a couple different drugs (when I asked why not the same dr.s said they thought! it doesn't work as well the second time) anyway didn't matter half way thru it was clear it was not working so we discontinued. We expected some explosion of growth and a dire outcome but instead it stop growing.
so now just waiting This may sound like a sob story but it really is not

I am alive iget to see my grandchildren every week I even saw 2 be born since I got my initial DX of 6 months to live 9 years of living
Yes has there been a lot of suffering I suppose physical ,mental and emotional. more to share but I have a gransdson to put to bed so that's all I want to get into

My dad had about 6 month of progressive SOB, fatigue. He went to primary care and MD alluded it was age related changes. He is 85. He was in really good health and very vigorous doing totaled work. The SOB and weakness continue and then a couple of months ago developed a dry hacking cough. After repeated ER and primary care visits, chest X-ray revealed elevated left diaphragm. This finding prompted a Chest CT and a 6cmx5cm anterior mediastinal tumor was seen. Biopsy later revealed squamos cell Thymic carcinoma. Excision not an option after a cardiac MRI revealed invasion into ascending aorta, pulmonary artery out flow tract. The metastasized to his pericardium and he developed pericarditis and required a drain to pull off 600 ml of metastic fluid. Later a pericardial window was made. We are now home experiencing some debility from 7 days in ICU, no food, no sleep, etc. His WBC stays elevated despite never growing anything out. I keep reading about wBC being elevated with tumor progression. Pet scan did not show distant metastatic disease. So, here we are just getting back to sleeping, eating, pooping, and ambulating now with a walker and oncologist is scheduling him for palliative chemo next week. The chemo is carboplatin and taxol in 1/3 dose every week. His performance scale is improving but not a 0. Any advice on how we can best aid him through this time? Again, his underlying health is quite good for 85 and is in part the reason they are willing to even consider chemo and radiation. Insight, suggestions, prayers welcome.