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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