Mayo Clinic Connect
Am just trying to find anyone to have a discussion with that is currently or has had the struggle with either of these cancers.
I have heard many good things about “Dr. Thymoma” (loehrer) There is some confusion about wether I have Thymoma or Thymic Carcinoma. My first oncologist said Thymoma but after biopsy changed it to Thymic Carcinoma. Until the last 10 years or so even Dr.s that had heard of it, many thought they were one and the same, but subsequent Dr.s’ kept referring to it as Thymoma. When I pushed them on this my oncologist said they thought possibly both ?????? I found that a stretch. If you didn’t have a biopsy how did they know it was Thymoma? I had surgery 10 days after a chest x-ray for a bad cough discovered a Large anterior mediatastal mass. measured 14.3×7.4×4.1 the surgeon said another couple weeks it would have been pushing on a major artery and I would have fallen over dead, as he was the head of thorasic surgery I believe him !! I then had 28 sessions of radiation (to slow the imevitable return).
I made it 5 years when a biopsy confirmed it had returned . I agreed a biopsy was needed to determine it was not a bunch of granulomas which I have and am taking prednisone for to try to shrink. Five long wonderful years and it rose its ugly head again. Surgery was no longer an option as it had metastasized to many areas. The Dr.s’ and I agreed on chemo as it would most like;y extend my life and I would have more quality time with my grandchildren I was only 57. So I began my palliative care which I had been on for awhile as there is no cure for Thymoma / Thymic. The chemo did shrink all the tumors with only one small stubborn area remaing. I have been going for scans every 3 months for quite awhile and my last PET showed a return am not ready to head into another round of chemo without being 100% it is cancer and not granulomas 90% is not good enough to justify the pain and other complications. But I had 2 more good years with the chemo all we are trying to do is extend my life with quality.
I am so happy for you that things are going well !!! And from all I heard you are under excellent care! I also do not have Myasthenia Gravis which MIGHT point towards Thymic as they are not associated. Keep up the scans and I hope you continue to do well.
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Concerning the type of thymoma, they said something similar to me about not being able to differentiate completely between Thymoma and thymic carcinoma. They said to think of the tumor as a chocolate chip cookie. Stage b1 only has a few chocolate chips. Stage b3 is much denser. Thymic carcinoma would be almost all chocolate chips. I hate to attach something so awful to chocolate chips, but it did help me understand . There have been a few studies about the risk of recurrence and the various types but the most important variable for long-term survival is removing the whole tumor before it has a chance to seed. I go to mayo clinic next week for my second scan. I will not go back to Indianapolis unless the cancer recurs. I will also see a cardiologist because I developed left bundle branch block in my heart since the surgery last year. Praying for good answers for you. Every day that goes by brings new hope for better treatments.
everyday is important. I have lived so much longer than anticipated. When I was first diagnosed on 2009 ( I can hardly believe it has been that long ) they did not have any chemo drugs that were working well for Thymoma/ Thymic . and now they have the paclitaxel and ?????(brain fart ).
From my research it seems widely accepted that Thymoma cells are very similar to Thymus cells while Thymic has significant changes. Which clinic are you going to? I can’t remember if u mentioned that. I go to Rochester Mn. I went to the Cancer Treatment Centers of America for my 28 sessions of Toma radiation therapy.
It makes it so hard on my son and husband when they tell them/me to get my things in order ….and this has happened about 4 times. Whaty even my closest friends don’t get is living knowing you are dying, their response is well everyone is going to die ,meaning it’s no different.
But there is a big difference……a person doesn’t get reminded every day that you going to die sooner than you are supposed to. I am on oxygen 24/7 so I see it every time I look in the mirror…..after all this time it still surprises me and not in a good way.
BUT I have gotten so much more time than even the Dr.’s anticipated….so here is a toast to surviving!!!!!!!
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.
Shelley what did you think of Dr. Loehrer?
Allison, I felt it was worth my time to see Dr. Loehrer. He spent at least 45 minutes with me explaining the disease, my case and future treatment. The doctors at Mayo had initially
recommended radiation. I felt very uncomfortable with this since I believe my Thymoma was a result of chest radiation I had in 1987 for Lymphoma. He agreed and said that radiation doesn’t help if the tumor is completely removed. He said it tends to recur in the lining of the lungs – so where do you radiate? Also he gave me a scan schedule which the doctors at Mayo are using. I liked him and felt peace about his plans. My Thymoma was stage 2a type b3. Praying for peace and wisdom for you. I highly recommend the Thymoma Facebook group too.
Liked by Teresa, Volunteer Mentor
A couple of updates, I got a second opinion after my last oncology visit was such a disaster and my case was also heard by the tumor board at Mayo and we were all able to reach a decision on how to proceed which we all agreed on. Wait 2 months have the scans redone and see a different oncologist at Mayo ( I believe he is the head of thorasic oncology) for results. We are looking to see how aggressive it is before I even think about another round of chemo to shrink them. So needless to say I have a lot on my mind. It is a bit easier now that I have some good !!! Dr.s’ on my side. As a side note the clinic I am treated at has bent over backwards trying to make it right ( ref; my last visit ) and make sure I get Quality care.
Liked by Colleen Young, Connect Director, elorac43, Teresa, Volunteer Mentor, Kanaaz Pereira, Connect Moderator
I read through your entire chain, and quite a story. I was diagnosed with stage 2B thymoma about a year ago (12/15). I had an intense episode of pain in my left shoulder in September 2013, and while I thought it was a rotator cuff tear, it was diagnosed as a rare autoimmune condition known as Parsonage Turner Syndrome (PTS). My symptoms matched almost identically with intense pain, followed a week letter by a complete resolution of pain, but a loss of 90% of the motor strength in my left arm. I spent two years in PT regaining function and strength, and then the pain returned. This time it was clear there was a cuff tear, but it was not caused by trauma, but rather the tendon was pulling apart due to the muscle imbalance caused by the PTS. The top ortho surgeons would not operate noting that the location of the tear and the location of the pain did not correlate. Finally I found a surgeon to operate, though he warned it could be unsuccessful. I had to do something to alleviate what had become debilitating pain. That was at the end of 11/15. I then went for a pre-op clearance at my primary care doctor, who administered an EKG. He came in to state there was an anomoly, and ordered an echo cardiogram the next day. The result was that I needed immediate aortal valve replacement surgery. Penn Hospital’s chief of thoracic surgery then examined me, and basically would not let me leave the hospital, noting that he didn’t give me two weeks to live with this heart condition. Before I knew it surgery was scheduled, and just before the surgery they performed a CT scan of my chest. The doctor noted that the thymus appeared a bit inflamed, but advised this happens constantly. The surgery went well, and in the process he removed my thymus. A week later, while doing very well in my recovery, the surgeon visited me with an oncologist, and they noted this was the first time in 30 years that the thymus came back positive for cancer, in this case stage 2 thymoma. I went through 7 solid weeks of proton therapy treatments, which were quite debilitating after heart surgery, but it appears successful. The irony is that had my shoulder not hurt so much, I would never have found out about my heart issue. That heart problem should have been tracked my entire life, and the need for the valve replacement was inevitable. But had I been properly checked over the years, the surgery would probably have occurred a couple of years earlier, in which case they would have missed the cancer. As you’ve come to learn, once this type of cancer becomes symptomatic, the issues become very complex. Now what they’re studying is whether the PTS itself was a manifestation of the thymoma, which is frequently linked to rare autoimmune disorders. A year later, and thankfully I am in terrific health. I went from 225 pounds to 163 pounds during this ordeal (and mind you the 225 was with 13% bodyfat). I regained about 40 pounds very carefully and have worked out like a fiend to get in the best shape possible. Now I attend the proton treatment alumni functions at Penn to try to give reassurance to patients entering treatment. Statistically, I really should have won millions in a lottery, but I’ll take my health thanks.
Liked by Colleen Young, Connect Director
Hi Allison I’m seeing. Dr Loehrer and he is awesome
Liked by Kanaaz Pereira, Connect Moderator
Welcome to Connect, @lizah,
Have you been diagnosed with Thymoma/Thymic Carcinoma? We sincerely look forward to getting to know you.
Hi, I was diagnosed with thymoma stage IV on feb 2016 and red cell aplasia 5 months after my quemo on November 16 and neutropenia 3 months ago. All this related with the thymoma
I couldn’t finish my last reply, I’m 42 and the thymoma I had, is, at least for now inoperable, Everything started by the end of feb 2016 with a pleural effusion, they put me a catheter in my lung and after a biopsy they were between linfoma and thymoma,finally Drs diagnosed thymoma stage IV, I had 4 months of quemo and the thumor kept stable until the end of october, when my hemoglobine went to 5, so Dr here in Florida (University of Miami) ordered a CT Scan, he found out the tumor started to grow again, they did a lot of blood test to figure out what happened with my hemoglobine and I decided to see Dr Thymoma in Indiana (Loehrer). He and is colleague Dr Robert Nelson (hematologist and inmunologist) explained to me that I had red cells aplasia from my bone marrow and acute anemia, it as a consequence of the thymoma. They gave treatment and I got much better. The thymoma shrunk and my bone marrow started to produce red cells again. On march 2017 my white line from my bone marrow (neutrophils) stopped, I had to go again and receive besides my normal treatment something calls atg. The problem is that my t cells (which are trained in the thymus) attack my bone marrow, it is a very rare consequence but it happens in some cases.
In this moment, I feel great. I love dr Loehrer and Dr Nelson, both are incredible and very knowledge doctors, right now my platelets are kind of low (around 30) but I guess nothing to be worry about. My next follow up is in october. In the meantime I have to check my blood every two weeks.
I hope I can have surgery one day
Liked by Colleen Young, Connect Director, Teresa, Volunteer Mentor, Kanaaz Pereira, Connect Moderator
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 !!!
Liked by Teresa, Volunteer Mentor, Kanaaz Pereira, Connect Moderator
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
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.
@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
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
Liked by Colleen Young, Connect Director, Teresa, Volunteer Mentor
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