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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.

Interested in more discussions like this? Go to the Cancer Support Group.

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Teresa, Volunteer Mentor | @hopeful33250 | Jul 20, 2017
In reply to @allisonsnow "To everyone.....THANK YOU, finally finding some people that "get it" has been a godsend on many..." + (show)
Profile picture for allisonsnow @allisonsnow

To everyone.....THANK YOU, finally finding some people that "get it" has been a godsend on many days

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Hello @allisonsnow,

It's been awhile since we have heard from you. I hope you are enjoying the summer. How are you feeling?

Teresa

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Teresa, Volunteer Mentor | @hopeful33250 | Jul 4, 2017
In reply to @shelleyfl35 "I was diagnosed with Thymoma last year at Mayo Clinic in Jacksonville. A CT scan for..." + (show)
Profile picture for shelleyfl35 @shelleyfl35

I was diagnosed with Thymoma last year at Mayo Clinic in Jacksonville. A CT scan for something else showed an unusual growth on my thymus. A wonderful team of mayo clinic doctors removed it and I am being followed every four months with CT scans. There is a wonderful Facebook group with lots of information about this cancer. It is called thymoma cancer research. I also saw the top specialist in the country at Indiana University. His name is Dr. Patrick Loehrer. Many people have a good prognosis and new treatments are being developed every day. With a condition so rare, you have to do a lot of footwork on your own. Prayers for healing and recovery.

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@gaybinator You've provided some good advice! Teresa

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allisonsnow | @allisonsnow | Jul 4, 2017

To everyone.....THANK YOU, finally finding some people that "get it" has been a godsend on many days

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1 reply
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allisonsnow | @allisonsnow | Jul 4, 2017
In reply to @shelleyfl35 "I was diagnosed with Thymoma last year at Mayo Clinic in Jacksonville. A CT scan for..." + (show)
Profile picture for shelleyfl35 @shelleyfl35

I was diagnosed with Thymoma last year at Mayo Clinic in Jacksonville. A CT scan for something else showed an unusual growth on my thymus. A wonderful team of mayo clinic doctors removed it and I am being followed every four months with CT scans. There is a wonderful Facebook group with lots of information about this cancer. It is called thymoma cancer research. I also saw the top specialist in the country at Indiana University. His name is Dr. Patrick Loehrer. Many people have a good prognosis and new treatments are being developed every day. With a condition so rare, you have to do a lot of footwork on your own. Prayers for healing and recovery.

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I agree, I am calling them on Weds. and am going to try to co-ordinate two other apts . Now that is something I always have to ask for, if left on their own they will schedule them all separately ....but all in a two week period...sigh

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Profile picture for Teresa, Volunteer Mentor
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 4, 2017
In reply to @shelleyfl35 "I was diagnosed with Thymoma last year at Mayo Clinic in Jacksonville. A CT scan for..." + (show)
Profile picture for shelleyfl35 @shelleyfl35

I was diagnosed with Thymoma last year at Mayo Clinic in Jacksonville. A CT scan for something else showed an unusual growth on my thymus. A wonderful team of mayo clinic doctors removed it and I am being followed every four months with CT scans. There is a wonderful Facebook group with lots of information about this cancer. It is called thymoma cancer research. I also saw the top specialist in the country at Indiana University. His name is Dr. Patrick Loehrer. Many people have a good prognosis and new treatments are being developed every day. With a condition so rare, you have to do a lot of footwork on your own. Prayers for healing and recovery.

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@allisonsnow Your posts are always inspiring. I'm glad that you are part of Mayo Connect. I hope you have a great visit with your grandsons. Teresa

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allisonsnow | @allisonsnow | Jul 4, 2017
In reply to @shelleyfl35 "I was diagnosed with Thymoma last year at Mayo Clinic in Jacksonville. A CT scan for..." + (show)
Profile picture for shelleyfl35 @shelleyfl35

I was diagnosed with Thymoma last year at Mayo Clinic in Jacksonville. A CT scan for something else showed an unusual growth on my thymus. A wonderful team of mayo clinic doctors removed it and I am being followed every four months with CT scans. There is a wonderful Facebook group with lots of information about this cancer. It is called thymoma cancer research. I also saw the top specialist in the country at Indiana University. His name is Dr. Patrick Loehrer. Many people have a good prognosis and new treatments are being developed every day. With a condition so rare, you have to do a lot of footwork on your own. Prayers for healing and recovery.

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@lizah
I have heard a bit about aplasia but will have to do a search and learn more. and yes I agree , one of the good things about 6 months is nothing is happening...no decisions to be made etc.
Do you have the guilt of what this has done to your family? I can't imagine being told ( a few times ) that your wife is dying make final arrangements. Yet other times I feel I have to remind him I AM THE ONE DYING he really complains about taking me to Dr. appts.
Well everyone have a wonderful 4th !!!! We are so lucky we have the health care available to us that we do!
I am headed over to see 3 of my 5 grandsons

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 4, 2017

@lizah I'm so glad to hear that you are feeling better right now. It is wonderful that you have found a medical team that is so knowledgeable and helpful. Please keep in touch and let us know how you are doing. Teresa

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Gaybinator | @gaybinator | Jul 2, 2017
In reply to @shelleyfl35 "I was diagnosed with Thymoma last year at Mayo Clinic in Jacksonville. A CT scan for..." + (show)
Profile picture for shelleyfl35 @shelleyfl35

I was diagnosed with Thymoma last year at Mayo Clinic in Jacksonville. A CT scan for something else showed an unusual growth on my thymus. A wonderful team of mayo clinic doctors removed it and I am being followed every four months with CT scans. There is a wonderful Facebook group with lots of information about this cancer. It is called thymoma cancer research. I also saw the top specialist in the country at Indiana University. His name is Dr. Patrick Loehrer. Many people have a good prognosis and new treatments are being developed every day. With a condition so rare, you have to do a lot of footwork on your own. Prayers for healing and recovery.

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My husband has been fighting Squamous Cell Carcinoma since 2014. We have relocated to Jacksonville twice for treatments. One thing we learned is never, ever let scheduling make appts for you. Call the doctor's office directly and make an appt. Don't wait, as it could have fallen through the cracks. I have nothing but the highest praise for Mayo, but you must be proactive.

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LizaH | @lizah | Jul 2, 2017
In reply to @shelleyfl35 "I was diagnosed with Thymoma last year at Mayo Clinic in Jacksonville. A CT scan for..." + (show)
Profile picture for shelleyfl35 @shelleyfl35

I was diagnosed with Thymoma last year at Mayo Clinic in Jacksonville. A CT scan for something else showed an unusual growth on my thymus. A wonderful team of mayo clinic doctors removed it and I am being followed every four months with CT scans. There is a wonderful Facebook group with lots of information about this cancer. It is called thymoma cancer research. I also saw the top specialist in the country at Indiana University. His name is Dr. Patrick Loehrer. Many people have a good prognosis and new treatments are being developed every day. With a condition so rare, you have to do a lot of footwork on your own. Prayers for healing and recovery.

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I understand when you say you are nervous about waiting 6 months for your new appointment, it actually happens to me also, my next CT will be in October, but on the other hand it means that we can wait, nothing is gonna happen until then (hopefully) so in the meantime we NEED to enjoy the great moments cause our lifes are a roller coaster today we feel great but we don't know about tomorrow, in my case, because of the thymoma, I developed an autoimmune condition and my T cells decided that my bone marrow is an enemy and they attack my cells red and white. It's call aplasia

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Profile picture for allisonsnow
allisonsnow | @allisonsnow | Jul 2, 2017
In reply to @shelleyfl35 "I was diagnosed with Thymoma last year at Mayo Clinic in Jacksonville. A CT scan for..." + (show)
Profile picture for shelleyfl35 @shelleyfl35

I was diagnosed with Thymoma last year at Mayo Clinic in Jacksonville. A CT scan for something else showed an unusual growth on my thymus. A wonderful team of mayo clinic doctors removed it and I am being followed every four months with CT scans. There is a wonderful Facebook group with lots of information about this cancer. It is called thymoma cancer research. I also saw the top specialist in the country at Indiana University. His name is Dr. Patrick Loehrer. Many people have a good prognosis and new treatments are being developed every day. With a condition so rare, you have to do a lot of footwork on your own. Prayers for healing and recovery.

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@lizah
I loved your statement "in this moment I feel great" because that is all we have ...this moment. I have to be truthful. I am getting frustrated with the Mayo clinic and the plan of action or lack of I am getting. I have a new Dr. AGAIN, I have seen him once and he seems fine except he said my next appt. would be 6 months out instead of 3. That its self has been nerve wracking, waiting and thinking those extra months. of course I know he wouldn't do it if he thought my recurrence was more active and growing faster than what we have seen. But that is just it...things can change so quickly. I am confused also why I do not see an appt. set yet???? 6 months is first week of Aug. and I see no apt on my schedule????? They haven't done a biopsy this time because of the risk, complications with the lungs and placement of four tumors, and because all but one Dr. was 100% all four spots were not sarcoidosis and WERE thymoma. Have been weening off prednisone but no weight is coming off.... AUGH !!!!
Am grateful for what I can do right now I am going out to water my garden !!!

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