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, Connect Moderator
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
@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
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.
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 Teresa, Volunteer Mentor, Colleen Young, Connect Director
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.
Shelley what did you think of Dr. Loehrer?
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 Teresa, Volunteer Mentor, Colleen Young, Connect Director, Kanaaz Pereira, Connect Moderator
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