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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 -
Replies to "Hello @johnbishop and thanks for the welcome! I actually saw the post you refer to and..."
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
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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?