Thymic Tumors

@hopeful33250, Thank you for your welcome and the various resources you've suggested. I have spent a great deal of time on the National Institutes of Health and U.S. National Library of Medicine websites. And yes, with thymic tumors having an incidence of only 0.15 per 100,000 population that comes out to about, what, 1 in 700,000 people having such tumors? An especially unique group, for sure.

From the medical professionals (a PA, an Emergency Room doc, a family practice doc) I have spoken with on a personal level (friends, relatives, and friends of relatives), it seems that the deeply involved patient is a pretty rare thing itself. I'm sure some of that can be attributed to a fuzzy familiarity with the diagnosis. I mean, if your doctor tells you "We need to remove your appendix" you may well know someone that has already been through it. And with an incidence rate of 1.1 cases per 1000 people per year and a roughly 99% percent success rate for appendectomies, people don't bother getting into the weeds on the details of what they're about to go through.

I imagine it's frustrating for doctors too, trying to help people when there's so little science and data to guide them. So far, it seems to me that all you can do is try to connect with the doctor you find that has the most experience (which probably is less than you would like), cross your fingers, and climb up on the table. And as you can see, I'm still at the "connect with the doctor you find that has the most experience" phase of my journey.

Okay then. Thanks again and be well.

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.

All you say is so true, @anotherfinemass. The one frustrating thing for all of us with rare or orphan disorders is the lack of research. Drug companies are less likely to spend money developing treatments for rare disorders that affect only a small percentage of people, because it is not that profitable for them. The frustrations for these disorders are too long to describe. It seems you have a good handle on what you need to do and who you need to find. I certainly wish you well.

Will you be going to Mayo for a consult?

@hopeful33250 - Well they say money won't buy happiness, but it will pay the salaries of a large research staff to study the problem. 🙂

As for coming to Mayo, that would be ideal, but given that I am several states away, there are many moving parts and I would have to be more organized than I am this minute. At this stage, I'm mostly just digesting the realities and trying to sort out my priorities. And as it turns out, that's a fairly large order to fill.

I'm wondering if you already saw this discussion:
- Phrenic Nerve damage https://connect.mayoclinic.org/discussion/phoenix-nerve-damage/

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 -

Hi there and welcome,

My dad was diagnosed with a mediastinal mass 6.5cm X 5.8cm on August 7, 2018. Like you, I was feeling overwhelmed at the lack of current research and the research that existed lumped thymomas and thymic carcinomas together (to get a bigger sample size) added to my frustration and fears. I was hoping it was a thymoma, but learned it was squamous cell thymic carcinoma. This path was sent off for further analysis which took another 3-4 weeks to result, but was able to tell us how receptive it would be to immunotherapy. The chemo regimen of carbosplatin and taxol had just fair results.

What I learned through my dad's surgeon, at least in our case, was that de-bulking was not an option with his type of tumor. What we were told by the surgeon was that he would not even attempt to remove the tumor unless he was sure he could safely get all of it. This being an aggressive tumor, he didn't want to leave any of it behind. To determine proximity, a cardiac MRI was ordered to try to "see" if it had invaded or nested too close to vital vessels, like the aorta. The surgeon was hopeful he could do the surgery, but after reviewing the cardiac MRI he and his team felt the tumor was too close to my dad's pulmonary artery and innominate vein for him to attempt to safely remove it. His fear was to open my dad's chest via sternotomy only to realize he could not do anything or worse attempt surgery and have a poor outcome. A poor surgical attempt would simply delay treatment for 5 weeks and that's barring any more time due to surgical complications.

Since thymic carcinoma is rare AND aggressive form of cancer, he consulted with cardiologist reading MRI, oncologist, radiation oncologist and his surgical partners to make the safest decision and determined the best course of action for my dad. We ended up not having surgery, but did have chemo and radiation. My dad's tumor has not spread and after radiation was notably smaller. He has since been started on Keytruda every 3 weeks. The disease is currently stable and we could not ask for more.

I would definitely find a surgeon who was not eager to cut, but one that was thoughtful and understood this type of tumor, meaning since rare they will need to review and learn about this very rare cancer. Time is of the essence. I never appreciated all the considerations that have to made until we were knee deep. We were fixated on surgery, but know we went down the right path.

Please feel free to ask any questions. You are not alone and treatment options are getting better with options in immunotherapy.

Gail
Greenville, SC