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.
Welcome, @allisonsnow. I’m sorry to hear of your diagnosis. I’m glad that you joined Mayo Connect. We would like to get to know you a little better. If you can share more about your carcinoma that would be helpful. For example: How long ago was this diagnosis made; what were your symptoms at the onset; have you had surgeries or other treatments? We would forward to getting to know you and supporting you through this cancer journey. Best wishes to you and once again welcome!!
Liked by Colleen Young, Connect Director, Justin McClanahan
My cancer story is a long (luckily) and convoluted story. Symptoms on the onset are very benign as easily attributed to so many other things. My main symptoms were a congested cough that would not go away (had it about 6 months) trouble catching my breath, but I was 50 and had put on some weight . My primary kept saying that though it sounded horrible she didn’t hear anything in the lungs (as far as pneumonia ) so no chest x-ray was ordered. Last week of June 2009 I got a 2nd opinion he immediately ordered an x-ray then showed me exactly where the pneumonia was showing up in my right lung gave me an RX and sent me home. At dinner I get a phone call from the Dr. and he said ” I am so sorry’ I do not have pneumonia but an anterior mediastil tumor (??) and again ” I am SOOOO SORRY ” he said a ct scan was already ordered . From the number of I an sorrys that were said I said /asked the results of this are not going to be good are they, as in terminal .and his answer was yes. So the CT was done had to wait over the 3 day 4th of July weekend for results ( by this time I probably had logged a hundred hours of research on the computer) the Tumor measured approx. 3×6 had a biopsy again waited over a weekend was positive and we met with my first oncologist. I was expecting a Thymoma diagnosis but she said Thymic Carcinoma ,when pushed by me said she would be surprised if I made it to Christmas she also said that she doubted a surgeon would be bothered to meet with me because there was no point it was to far advanced. BOTHERED I couldn’t believe she said a Dr. couldn’t be bothered with my case. LUCKY for me she was wrong and the wonderful Dr. Deuchamps ( I am sure I spelled that wrong) who was head of thorasic surgery took my case and performed the surgery. By this time the tumor was approx. 14 x 6 x ? had invaded my right lung paralyzed my right phrenic nerve and had wrapped around my heart penetrating the peri-cardiem . Dr. thought surgery went very well. After some recovery time I had 28 sessions of intense Toma therapy radiation. He said the radiation would increase the length of time before recurrence, which I was all for considering most patients die after recurrence, I had almost reached the magic 5 yrs when it came back. During that 5 yrs I was in the hospital over a dozen times, more than once my husband was told to be prepared for my death but I keep defying the odds. With the recurrence I was told my only option was chemo and that I was now in what was considered palliative care and the hope was just to shrink it and stop new growth. It was a tough 6 months but I made it thru. My hair, eyelashes, eyebrows have grown back. I have been complaining of severe lower back pain and during a scan to try to find cause the radiologist noted he saw what he thought may be “drop” metastisis and suggested a chest CT. for what ever reason while my primary covered with me the rest of the results of the scan (bulging disc etc. ) she saw no reason to mention this. I only knew because I had just done a print out of the results at home (because she waited 10 days to call me) . I go to Mayo every 3 months for scans and bloodwork and have an apt middle of Jan. so I will find out then who was right and if I should have put more urgency into it. I really wanted a nice holiday season and to be thankful for my many blessings so I have just put it out of my mind and enjoyed my 5 grandsons.
Believe it or not this is the condensed version !!!! LOL I have had some crazy and beautiful things happen to me during this journey.
Liked by Colleen Young, Connect Director, Teresa, Volunteer Mentor, shilo14
@allisonsnow What an amazing story! You do have much to be thankful for. You have shown persistent in advocating for your health and defied the predictions of the original doctor. Please keep in touch and let us know how your tests go in mid-January. Blessings to you and your family!
It is humbling to read your story about your struggles with this type of cancer!
In the past, Connect member @sngerson did post briefly about thymic carcinoma, and I hope will return to join this conversation; you can read the discussion here: http://mayocl.in/2jnePir
@allisonsnow, have you considered enrolling in any clinical trial or research studies? Here’s a list of all ongoing National Institute of Health (NIH) clinical trials for your reference: http://bit.ly/2iNuW7O
Do keep us updated about your tests, and we wish you the very best.
Liked by Teresa, Volunteer Mentor
I have looked into some of the trials and I thank you for the list of current (and past) trials. On many it is either the distance or requirements that rule out my participation. I have had surgery ,radiation (toma-therapy ) and chemo ( using two of the drugs tested in a previous trial ) .
As I am sure all of you do also, am getting a bit anxious for the tests and results.
I may have a rare cancer we all have so much in common, I look forward to rewarding discussions on connect.
Liked by Colleen Young, Connect Director, Teresa, Volunteer Mentor
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Am I being naïve to think they would try to assign me a Dr. that might have a clue as to what Thymoma even is. On my last visit he was reading my chart on his way into the room and started to read it aloud !! I didn’t need to hear it … I lived it! I was frustrated immediately and the visit went downhill from there what reaction can I expect if for my next appt. I tell them I NEED a different Dr. There was no feeling of trust for this Dr. advise and that is so necessary for everyone ! with their Dr.!!!!! If it were me(as the dr. ) I would jump at the chance to learn hands on about a rare cancer! and study as much as I could about it to help my patient ! Can I just ask my Dr. to put my case before the tumor board if I have gotten conflicting information? Thanks for letting me vent a little and any advice I can get will be appreciated !!!!! Erin
I’m so sorry to hear about your latest encounter. I’m sending you a private message.
Though I don’t have Thymic cancer I had a relative who did and I spent some time helping him get treatment. I found the folks at Thymic.org very helpful. Through that group he was able to find expert care and became involved in a trial at the National Institute of Health. I know it is a pretty rare cancer. The Thymic.org people also had a message board that was extremely helpful.
Good luck with your battle.
thank you cynaburst I checked it out and it seems like it will be very informational.
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.
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.
@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?
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 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.
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