Thymic Tumors

Hello @anotherfinemass, welcome to Mayo Clinic Connect. There is another discussion here on Connect that I think may give your post more visibility. I'm tagging our Director @colleenyoung to see if we should move your post into the following discussion for more visibility.

Groups > Cancer > Anyone out there with Thymoma/Thymic Carcinoma
-- https://connect.mayoclinic.org/discussion/anyone-out-there-with-thymomathymiic-carcinoma/?pg=1#comment-51874

Also I noticed your other new discussion and post on editing a post or discussion. I believe a member has the ability to edit a post/discussion for a time period. @colleenyoung is this correct?

I think you ask some very good questions. I have no medical background or training but believe the surgeon is most likely the only person who can answer them. I did find some patient stories that may be helpful on the Foundation for Thymic Cancer Research website:
-- https://www.thymic.org/?p=114

Hello @johnbishop and thanks for the welcome!

I actually saw the post you refer to and felt it had a more personal theme than my post, which I intended to be a discussion pertaining to process. Obviously, people's personal accounts can be valuable to the similarly situated, but in the context of what is currently working for those entering the process today, I'm not sure that thread, which is fairly long, is as useful since @allisonsnow began her journey a decade ago in 2009.

Additionally, it seems that the rareness of these tumors has caused more than a bit of confusion about the facts. For instance, other than thymic hypoplasia, all thymic tumors are considered cancerous. However, it is more recently stated that thymomas "have the potential to behave like cancer" and spread beyond the thymus. Yet many thymomas appear to behave in a benign fashion and are noninvasive. I believe this type of doublespeak is a result of the lack of scientific understanding of thymic tumors and that it contributes to confusion for those trying to understand their condition.

It was my hope that this thread would focus more on sharing the most current understanding of this condition's informational deficit and how to address medical professionals that may not be experienced in this evolving area of medicine. Similarly, to your point that the surgeon is the only one who may be able to answer questions such as those I have posed, I believe it is inappropriate that patients should have to spend valuable resources just to get a clear picture of a doctor's experience with a particular procedure. Indeed, it is my opinion that if the information available for doctors was anything near the volume of information available for NFL players, patients would be in a drastically better position.

Finally, pertaining to the post edit policy, 5 minutes seems rather fast to shut off editing for a post - particularly when there has been no response to the post. This forces a user to actually create a comment to their original post in order to correct an error. Of course, readers may not get to that correction and instead leave with the incorrect information. The more current trend is to allow editing for the life of the post but to offer "edit history" to readers. Likewise, it seems inappropriate to disallow the deletion of one's own post. This (at least on my part) dampens dynamic discussion and creates a reluctance to post what is in effect a permanent record - particularly when folks may be discussing personal issues.

Regards -

I'd also like to add my welcome to @anotherfinemass. (You can edit your post up to 2 hours after posting.)

It can be a challenge to find experienced specialists for a rare cancer type, such as thymic cancer. It is obvious that you are someone who does your research. Your questions re surgery and a surgeon's experience are good ones. At Mayo Clinic, you have the advantage of physician team experience, whose collective knowledge is greater than any individual. All patients are seen by a team of experts. Some, if not all of your questions, can be answered prior to an appointment.

I'm tagging fellow members who have experience with thymic cancer and finding care. @shelleyfl35 @beitelash @allisonsnow @andylevine @lizah @jacquie1 @shilo14 @shaycoe12 @annesgl @shaycoe12 @jean25 @gailkattouf may have helpful tips in addition to the experiences they shared in this discussion:
— Anyone out there with Thymoma/Thymic Carcinoma https://connect.mayoclinic.org/discussion/anyone-out-there-with-thymomathymiic-carcinoma/

Anotherfinemass, do you have a center that excels in cancer care near you?

Welcome @anotherfinemass to a group you probably didn't want to have to join. Good wishes as you start this journey to find your best treatment options. Where do you live?
There is a Facebook group (Thymic Carcinoma) I would highly recommend. Moderator is very knowledgable and members discuss their current treatments, drug side effects, surgical complications, current new drug trials, recommendations for oncologists, medical centers & surgeons - and most importantly - success and survival and living with this cancer.

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?

Hello @colleenyoung

Thank you for your welcome, your encouragement, and your referral to others!

As for having a center that excels in cancer nearby, not really. I do have a couple of fine medical centers that I would have no reservations about going to for almost any other condition, but the dialogue surrounding the operation that is indicated for my condition was not reassuring. I'm confident that this is not a reflection on the medical center, but more an indication of how rare this particular type of tumor is - and how large mine has become. Thus my investigation into more specialized organizations (like the Mayo Clinic) and my curiosity with the process of evaluating surgeons.

You mentioned that some if not all of my questions could be answered prior to an appointment at Mayo. How exactly would one go about engaging the organization with those questions?

Thanks in advance.

@anotherfinemass, start by contacting Mayo Clinic http://mayocl.in/1mtmR63. This is the appointment request contact, but there is no obligation to making an appointment. You can ask your questions by phone or fill out the online form. It may take persistence, but I have a feeling respectful persistence is a skill you have. It's such an important one.

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.

@colleenyoung, thanks for the direction; I'll check it out.

Hello @shilo14, Thanks for the welcome and the FB referral. This is all very new to me, but it was my understanding that the outlook for survival with thymomas was extremely positive - more a matter of what survival looks like. As an example, from the limited data I'm finding, it looks like phrenic nerve damage occurs in about a third of patients. Apparently, there is very little room in the mediastinum area for surgeons to work and collateral damage is an unfortunate reality of that. If I had it all to do over, I would have monitored my tumor a lot better and caught it before it became so large. But when you don't have any symptoms from it, it's easy to just put it out of your mind in the hustle and bustle of the day-to-day. Anyway, thanks again and be well.