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Anyone out there with Thymoma/Thymic Carcinoma
Cancer | Last Active: Sep 3, 2023 | Replies (136)Comment receiving replies
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.
Replies to "I’m meeting with a surgeon on Friday. I am 54 years old. I started having neurological..."
@colleenyoung AS I look at the last entries it seems as thought as decade has past. I see I told you that I was goimg back to be tested the results were not good and chemo was begun immediately. They hit me pretty hard did infusion and oroal Kept that going until the halfway point which was Jan. I think. Results came in and results showed.........................nothing..........................well I shouldn't say that, there was growth......in the plueral of my lung inside of my lung and they felt next would would spread to othe organs BUT THE KICKER IS it is sarcoidoossis the oncologist says that is not really his concern because it is benign tissue and he only deals with malignant tunors so I should make an appt. with Dr.Vassallo in pulmonology . So now I am waiting on that.
I am sorry to hear that your treatment was not more successful.
I hope your next appointment with Dr. Vassallo goes better. What sort of symptoms do you have with sarcoidosis?
I look forward to hearing from you again.
Teresa
sarcoidosis symptoms can be pretty far reaching , around the lung (just what I need) and then on to other organs, most often the liver but my liver functions look "great". The first time they were positive was a large grouping around my hip. I was told I was having a biopsy by my spine for what looked like cancer. When they walked into the room to do the procedure they are marking me only they are marking my left HIP NOT MY SPINE !!!!! after a couple calls I find out "they" had decided to test in my hip area as they looked the same and it was easier to get to. The change didn't sit to well with me don't like last min. suprises. What's done is done and it was sarcoidosis. Now it seems to be everywhere. But symptoms can be joint pain, cough that hangs on, dry eye weight gain or loss.....all over the place and pretty minimal at first. I just haven't been my usual perky self hahaha. Just been so tired. Tired of being tired, tired of the pain and listening to people on the news say I don't need opiods ................its all in my head ...or I am an addict or why don't I try ??????? it cures cancer !!!!!! SORRY I am just a bit crabby, have been to 3 funerals in 4 weeks all to young 1 stroke and 2 cancer and it was just the anniversary of my daughters death.
Life is a gift and I am truly grateful some days the battle I fight everyday has made me weary and I can't be my usual chipper self.
I love everyone on here and that has offered and given me so much support. Going to ask the hubby for a back rub and try to get some sleep!!! Good night to all
I am so sorry to hear of your pain and your new diagnosis. Your attitude always remains so good when you say, "Life is a gift and I am truly grateful some days the battle I fight everyday has made me weary and I can't be my usual chipper self." I'm always inspired by that attitude!
I have attended funerals lately and have friends in ICU and hospice so I know how it can create a sense of despondency. I am always impressed at how you create your attitude by good thinking.
I hope you had a good night's sleep and I look forward to hearing from you again!
Teresa
@jacquie1 I am glad you found us here though I am sorry you needed to, and so many tests and Dr.s ! When I was first diagnosed in 2009 I did nothing but research and found varying "opinions" on weather Thymoma was a cancer at all. There are no distinct blood markers per say. BUT it has been decided that it is a cancer not just a benign tumour. Some Drs are just resistant to this idea. Thymoma just is a slower cancer than Thymic but it does get confusing.
Have a good night
allison
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Hi @jacquie1
My apologies for taking so long to respond to your post. It slipped by me for some reason. You sure have seen a lot of specialists. What did you find out at your appointment with the surgeon. Is it thymoma?