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Thymic Tumors
As the owner of a fairly large thymic tumor, I have been trying to and understand the condition, currently acceptable treatments, and the various risks associated with those treatments (and non-treatment). The basics of my initial understanding are:
(1) Thymic tumors are relatively rare.
(2) Except in the case of thymic hyperplasia, thymic tumors are cancerous.
(3) Thymic hyperplasia is extremely rare in adults.
(4) The cancerous thymic tumors are thymomas, thymic carcinomas, and neuroendocrine tumors.
(5) The most dangerous and least understood of those are neuroendocrine tumors.
(6) In almost all instances, surgical removal of the thymic tumor is the standard treatment.
(7) The most common and most desired goal of surgery is a full resection of the tumor.
(8) Full resection of the tumor is important to achieve satisfactory long-term survival.
(9) Biopsies of thymic tumors are usually performed at the time the tumor is being surgically removed.
Some of the most common conditions that are associated with thymic tumors and the operations conducted to remove them are:
(1) Phrenic Nerve damage;
(2) Sympathetic Chain damage;
(3) Sternal wound infections;
(4) Damage to the superior vena cava and/or other nearby veins;
(5) Recurrent laryngeal Nerve damage;
(6) Horner Syndrome, and;
(7) Myasthenia gravis.
Of greatest concern in considering the above is that just as the tumors are relatively rare, so are surgeons that specialize in resecting the tumors. And not being independently wealthy, resources for consults and second or third opinions are limited. This has given rise to the question of what is the proper or commonly recognized protocol to engage surgeons.
More specifically, many thoracic surgeons do not work with thymic tumors. That being the case, I have tried to get answers to the following questions before making an appointment for a consult:
(1) How many thymic tumors (approximately) have you removed or debulked in your career?
(2) Of those, in how many cases was the tumor completely removed and how many debulked?
(3) Of all those procedures how many (approximately) were for which of the four types of tumor?
(4) What were your best and worst results?
(5) The mass in my chest now measures ## cm x ## cm x ##.# cm in craniocaudal, mediolateral and anteroposterior dimensions. Have you ever operated on a mediastinal mass this size?
(6) Have any of the several conditions listed above have been common (occurring in more than 50%) in your patients, and if so, which conditions?
My limited experience in this pursuit of these answers is that the surgeon's assistant says I need to schedule an appointment to discuss those matters with the surgeon. However, that leaves you in a "chicken or the egg" situation where you need a referral to see a surgeon, but without the answers, you aren't sure if you want to use the referral for that surgeon! And sending unsolicited emails has not been productive.
Has anyone else dealt with this? What was your process? What's the process at Mayo? (I am not located near a Mayo Clinic.) Also, please feel free to supplement the information above or correct any misinformation (provided unknowingly).
Thanks in advance.
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@rosez, I am so sorry to hear of your daughter's passing. How very difficult for you. As Colleen said, you are not alone. Please know that Mayo Connect is here to support you during this time. The loss and grief group that Colleen mentioned will welcome you. Just click on the link and begin posting. You will be surrounded by virtual friends.
What is your greatest need right now, @rosez?
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2 Reactionshello there. I was recently diagnosed with a 6by 2by 6 cm mass on my Thymic. I went to the ER with heart attack symptoms on the right side, this is when they found it in a cat scan. I have been to Carti a cancer center. All my blood work is fine. My doctor made it seem as if it was nothing. Went to UAMS out of Little Rock they don't know what to do. My Venogram was normal. I'm still in pain but seem like the doctors are making it out to be all in my head. I'm scared. I need answers. I have two children and I'm young. Can anyone help?
Hi @ggaines118, I can imagine that you're scared after being told you have a thymic mass, but to not have a diagnosis. Thymic carcinoma is rare. As @anotherfinemass and @gailkattouf said in earlier posts, they had to seek second and third opinions and even go out of state to find experts in thymic cancer. You may wish to consider getting a second opinion.
GGaines, Were tests done to determined if the mass is cancer or a benign (non-cancerous) thymic cyst?
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2 ReactionsOne doctor just told me it’s nothing to be worried about. He told me the only way to get a biopsy on it is to preform something much like open heart surgery and take it out. He didn’t want to do that. He told me my blood work looks fine. So until it becomes a bigger issue we would just leave it alone. The other one is running test to try to figure out more about my condition. He said the mass shouldn’t be causing me the issues I’m having so he is scheduling a MRI on head and neck and the venogram. Venogram was good. I wouldn’t be so concerned about it but considering I’m having these very strange side effect. I know it’s coming from that I went from perfectly fine to sitting in my chair gasping for air, then all of a sudden I had chest and shoulder blade pain. A huge lump in the throat, shooting pain up my neck when I take a deep breath and these weird head aches that include a warm sensation, hand numbness, and arm pit pain.
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1 ReactionHello @ggaines118,
I was reading your posts about your Thymic mass. I'm so sorry to hear that you are experiencing so many uncomfortable symptoms. From your post it appears that you have two different doctors, is that so? If so, are one of those doctors an oncologist?
It is important to get the best care possible. Do you live near a renowned cancer center? If not, I would recommend getting another opinion at a well-known cancer center that has an oncologist who specializes in Thymic tumors.
Could you investigate and see who you can find who specializes in this disorder?
I was diagnosed with thymic hyperplasia and liver cancer due to hepatocarcinoma, will the hyperplasia always be benign or why does it come out?
Yes I do have two doctors. One is a oncologist at Carti. He is the one who doesn’t think it’s anything and doesn’t think I should be concerned. The second one is a thoracic surgeon at University of Arkansas Medical Services Rockefeller cancer Institution . Yes, I have been researching other options. However; being a single mother working a 8-5 m-f job schedule that barley provides enough to make ends meet and both my children’s schedules make it impossible to travel.
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1 ReactionHi @ggaines118
It seems that you have done a great job of finding a cancer center in your area. What is the thoracic surgeon looking for at this time? Is he running other tests?
@mrodriguezc, Thymic hyperplasia is an abnormal growth of the thymus and the thymus becomes enlarged. It is often described with other non-cancerous tumours of the thymus, but it is not an actual tumour. Thymic hyperplasia is associated with myasthenia gravis and other autoimmune diseases.
See more here: https://www.cancer.ca/en/cancer-information/cancer-type/thymus/thymus-cancer/non-cancerous-tumours/
Has it been suggested to be removed for you?
Hello @ggaines118,
I was thinking about you. Have you had any help with your symptoms or any treatment for the thymic mass?
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