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Hello @anotherfinemass
Along with @johnbishop and @colleenyoung, I'd like to welcome you. As one who has had three surgeries for a rare form of cancer, Neuroendocrine Tumors (NET), I can at least appreciate your frustration with finding a doctor who specializes in a rare disorder. I wish I could tell you of any easy approach to finding what you need as well as a doctor who specializes, however, it just takes a lot of footwork on the part of the patient to track down the doctor and facility that can best offer you help.
I live in SE Michigan and we have two medical centers here that are above-average when it comes to cancer and one that specifically has a doctor recognized as a NET specialist (he treated Aretha Franklin). As you don't mention your location, I'm not sure what you have nearby but by using the internet and some of the resources mentioned by others I hope you can track down the kind of specialist you need. Here are two other websites that you might find helpful. The first is the NORD website for rare diseases, also known as orphan diseases, https://rarediseases.org/?s=thymic+tumor&submit=. If you follow the link, it will take you to another link, https://rarediseases.info.nih.gov/diseases/5201/thymic-epithelial-tumor.
This link will take you to the info on thymic tumors.
Here is another link to a website by the NIH that might provide some more information,
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3693138/
Having a rare disorder has included you in a group of unique people who themselves are seekers of knowledge, seekers of good treatment and diligent in the way they conduct themselves with the medical professionals that they meet with. It is not unusual for me to walk into a doctor's office with a list of questions and a stack of info that I've found on the internet. There is no easy way to do it, just find as many support networks that you can and learn as much as you can from others. Unfortunately, we cannot compare the important work that we do with the NFL, we can only dream it would be that easy.
I look forward to hearing how you are doing. Will you post again?
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Hi Teresa, I am a ten year survivor of another rare cancer, high grade undifferentiated plemorphic uterine sarcoma. I received surgery, chemo and radiation at diagnosis. All was fine for 6 years, then started losing weight, developed GI issues, then diplopia, nystagmus, followed by peripheral neuropathy and ataxia. I have had an exhaustive work up at Mayo, not surprisingly looking for cancer. I think Gastroenterology, Oncology and Neurology are at a loss to explain. Striational muscle antibodies, which can be linked to thymus cancer, showed up on paraneoplastic bloodwork, but neurologist thinks this is age related. As my symptoms continue, along with intense hunger if I don't eat every few hours, constant thirst, profuse sweating and flushing on exertion, and going from cold to hot in seconds, I'm wondering if I should be evaluated by a NET specialist? I would appreciate the name of the specialist you are seeing in Michigan.