Anyone out there with Thymoma/Thymic Carcinoma

Posted by allisonsnow @allisonsnow, Jan 5, 2017

Am just trying to find anyone to have a discussion with that is currently or has had the struggle with either of these cancers.

@hopeful33250

Hello @shaycoe12 and welcome to Mayo Connect

I appreciate your posting about your successful surgery. I am glad to hear that your recovery went so well.

Please feel free to share more about your surgical experience if you are comfortable doing so. Will you need any follow-up treatment?

I look forward to hearing from you.

Teresa

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Hi Teresa yes I had robotic thymectomy and although it was quite painful for at least six weeks it was successful with little complications I was taking a medication for a while but now my pulmonologist says that he don't think I will have to worry about it coming back my chest has no feeling and itches a lot on the inside because the nerves we're disturbed the doctor said that my feeling should return soon and I take a nerve medication for that. He said that in my case it was better to remove it.

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@shaycoe12

Yes I had my thymus gland removed in April very painful operation but I recovered very well.

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Robotic surgery

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@shaycoe12

Yes I had my thymus gland removed in April very painful operation but I recovered very well.

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Welcome to Connect, @annesgl
We look forward to getting to know more about you. Do you also have thymoma/thymic carcinoma?

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@shaycoe12

Yes I had my thymus gland removed in April very painful operation but I recovered very well.

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I have an enlarged thymus and the Thoracic surgeon recommended that it should be removed. He recommended not having a biopsy prior to the surgery. He is sending me to another surgeon who I see in a couple of days so I'll get a second opinion. I'm mostly concerned about the procedure and am hoping I can have laparoscopic surgery.

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@shaycoe12

Yes I had my thymus gland removed in April very painful operation but I recovered very well.

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Yes I didn't have a biopsy either and he did robotic surgery it was my thoracic surgeon I hope it goes well please keep me posted.

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@shaycoe12

Yes I had my thymus gland removed in April very painful operation but I recovered very well.

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Can you tell me why robotic surgery was chosen. I'm surprised and sorry that you were left in pain. Nerves were disturbed? I'm looking for a speedy recovery.

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has anyone tried Xandia? I've been on it since the 18th.

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@shaycoe12

Yes I had my thymus gland removed in April very painful operation but I recovered very well.

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My recovery time was shortened by the robotics the surgery was in April and I'll say within two months I was back on my feet but my nerves are still recovering it's been about 14 weeks. But because I also have an auto immune disease the recovery time for my nerves are longer. Robotic surgery was less invasive I had four incisions three of which are almost completely gone.

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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?

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@jean25

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?

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I received excellent care with Dr. William Levin at Penn Oncology. I was type B2 stage 2b. Surgery plus proton therapy seemed to work. Penn is a center of excellence

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@jean25

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?

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Great, thank you Andy. How often and long did you have to go for proton therapy? Just wondering about the amount of travel from the DC area.

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There is probably a proton therapy center near dc. It was everyday for 7 weeks, excluding weekends.

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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.

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@gailkattouf

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.

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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!

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@hopeful33250

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!

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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.

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