Anyone out there with Thymoma/Thymic Carcinoma

I’m meeting with a surgeon on Friday. I am 54 years old. I started having neurological symptoms a year and a half ago. First neurologist said nothing was wrong. Second neurologist said I have cerebellar ataxia, progressive and no treatment. Likely genetic but insurance doesn’t cover testing. No follow up. As symptoms worsened and daily living became more impacted I went to a third who confirmed cerebellar ataxia and couldn’t offer anything. After losing 30 lbs, experiencing night sweats, difficulty swallowing, and reduced appetite. I went to a fourth neurologist who suspected MG. Blood work and EMG ruled that out. Muscle weakness is worsening and debilitating. Because of went loss I was referred to GI doc. Colonoscopy/ endoscopy was clear. Ordered CT where they found an anterior mediastinal mass. I was told that blood work for paraneoplastic cancers came back positive for calcium channel something or other. So many doctors.... I might add that I’ve already been dealing with congenital cardiac issues and have CHF for past five years so I take a ton of meds and I have an AICD.

So, anyhow I was told that this small mass could be lymphoma or thymoma. Because of my neurological issues it seems like they are encouraging me to think it is a benign Thymoma. But MG was already ruled out.... is there such a thing as Benign Thymoma? Depends on what I’ve read.... some articles say it’s all cancerous but encapsulated is not aggressive. Some call encapsulated benign.... is like some info before I see the surgeon. I’ve had such a runaround that I’m mistrustful and each specialist says something different. Thanks.

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. 3x6 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.

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. 3x6 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.

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. 3x6 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.

Yes I had my thymus gland removed in April very painful operation but I recovered very well.