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.