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Am just trying to find anyone to have a discussion with that is currently or has had the struggle with either of these cancers.
@shelleyfl35 and @beitelash, welcome to Connect!
It is great to have found 2 more people to join @allisonsnow to talk about living with this rare cancer. Am I understanding that both of you have had surgery, and at the moment no further treatment (radiation or chemo) is necessary?
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Yes. My further treatment is ongoing scans. Dr. Loehrer, the Thymoma expert at Indiana University said that radiation is only necessary when the surgery margins are not clean. The doctors at Mayo Clinic were able to achieve clean margins using robotic surgery. I was in and out in 3 days and back to somewhat normal in 3 weeks. Chemotherapy is usually only used when the tumor needs to be reduced in size so that it can be surgically removed. I don’t think chemo provides a cure. From what I understand Thymomas should never be biopsied. That can cause them to seed and spread. Complete surgical removal is always the goal. Unfortunately, thymomas can recur many years after the first occurrence. This is why scans must continue indefinitely. Thymomas are strongly correlated with Myasthenia Graves, an autoimmune disease. I do not have this. I am assuming that mine was a result of radiation therapy in my 20s for Hodgkins Lymphoma.
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.
I had a thymoma removed April 21st, 2016.
It all started in January of 2016, I was having shortness of breath. I was first told it was my gallbladder and had surgery to remove it in February. When the shortness of breath continued, I was told it was anxiety. Knowing something was wrong, I went back to the clinic several times, finally pleading for further testing, a simple chest X-ray revealed a mass in my chest, a CT confirmed a baseball sized mass that was pushing up against my heart and lungs, causing the shortness of breath. I was scheduled for surgery with a cardiothoracic surgeon a week later. I was staged at a thymoma b2/b3. The tumor was encapsulated, except one small area of concern. The local pathologist felt there were some abnormal cells in that area. The local oncologist felt there was no concern. I decided to get a second opinion at Mayo. The first oncologist at Mayo felt radiation was a must. The radiation oncologist felt monitoring was a more appropriate approach due to my young age and the increase risk of other cancers with radiation. Because of these two separate recommendations, my case was brought to a board of oncologists. The final decision was to monitor by CT scan every 6 months. My first scan was clear. (Yay!) They said a thymoma is most likely to return within the first 2-5 years after resection. I am scheduled for my next follow up scan in April.
I go back for scans in april as well ! My cancer was also discovered from a cough that wouldn’t go away no matter what they gave me. I totally agree with Shelly that you need to do a lot of research on your own to really get to know this cancer and your options but the more people that speak up and share the easier it will be. With a cancer this rare that is just recently being given more $ for research there is no “right answer” most of the time. Find what you feel is right for you , listen to your Dr.s but ALWAYS ADVOCATE FOR YOURSELF if you don’t agree say so if you have questions ASK if not your Dr. then here or sites like this one. The only thing I try to avoid are the people that tell me about “a cure” the Dr. don’t want us to know about etc. a bunch of foolishness !!!! Or people that have a friend who has a cousin that knows someone who…… you get the picture. people are trying to help…..it just isn’t any help.
Any thing you want to know about my journey just ask.
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.
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.
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.
Hi Allison I’m seeing. Dr Loehrer and he is awesome
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
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