Anyone out there with Thymoma/Thymic Carcinoma

Posted by allisonsnow @allisonsnow, Jan 5, 2017

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

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.

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@allisonsnow Your posts are always inspiring. I’m glad that you are part of Mayo Connect. I hope you have a great visit with your grandsons. Teresa

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@shelleyfl35

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.

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I agree, I am calling them on Weds. and am going to try to co-ordinate two other apts . Now that is something I always have to ask for, if left on their own they will schedule them all separately ….but all in a two week period…sigh

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To everyone…..THANK YOU, finally finding some people that “get it” has been a godsend on many days

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@shelleyfl35

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.

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@gaybinator You’ve provided some good advice! Teresa

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@allisonsnow

To everyone…..THANK YOU, finally finding some people that “get it” has been a godsend on many days

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Hello @allisonsnow,

It’s been awhile since we have heard from you. I hope you are enjoying the summer. How are you feeling?

Teresa

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It has been a busy summer it seems…a lot of babysitting…this week for example had the 3 that live nearby for 3 days next week the one that just graduated is coming down for a week that will be fantastic !!! He has been so busy ,getting ready for college, that I have not seen him much.but it has all added to my stress levels. My pain has increased A LOT and all this humidity has made my breathing almost impossible. I have Dr. appts first of Sept I guess they had planned for Oct. but I really didn’t feel I could wait that long

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@allisonsnow

It has been a busy summer it seems…a lot of babysitting…this week for example had the 3 that live nearby for 3 days next week the one that just graduated is coming down for a week that will be fantastic !!! He has been so busy ,getting ready for college, that I have not seen him much.but it has all added to my stress levels. My pain has increased A LOT and all this humidity has made my breathing almost impossible. I have Dr. appts first of Sept I guess they had planned for Oct. but I really didn’t feel I could wait that long

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Hi Allison, @allisonsnow

Thanks for checking in with us. I’m so pleased that you are getting to see your grandchildren, I can tell that you are enjoying that. I am sorry to hear about your breathing problems and increased pain, though. Stress and hot weather can certainly can add a new dimension to health problems. Perhaps you will get more time to rest this coming week – high school grads are easier to entertain than little ones. I’m glad to hear that you can get in to see your doctor earlier than originally planned. I’m sure that you will feel better after you talk with him/her. Will you keep us posted as to how you are doing?

Teresa

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Yes I will. I have two days of appointments first week of Sept. and see my pulmanologist Sept. 27th.

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@andylevine

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.

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Hi @andylevine,
I’m re-reading your post here after seeing your messages in the Parsonage Turner Syndrome discussion. What a sequence of events that led to the finding of thymoma cancer. Did treatment end with the removal of the thymus or did you have other treatments as well? Symptoms?

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@andylevine

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.

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I had 7 weeks of proton treatments but now have semi annual scans. The shoulder pain resolved shortly after the tumor was removed. I still have a torn rotator, but it’s not painful anymore. I have small residual effects from PTS, and you can still see muscle denervation in my infraspinatus.

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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.

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@jacquie1

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.

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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?

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@jacquie1

Welcome to Connect – I'm so glad that you posted about your experiences. It sounds like you have had a lot of frustration in finding an answer to your many symptoms.

I hope to hear from you again.

Teresa

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@jacquie1

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.

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@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.

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@jacquie1

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.

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@allisonsnow

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

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