Thymic Tumors

Posted by anotherfinemass @anotherfinemass, Jan 16, 2019

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.

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 is on for 5 minutes before being turned off. @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

REPLY

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 –

path-is-different

REPLY

I'd also like to add my welcome to @anotherfinemass. (You can edit your post up to 30 minutes 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?

REPLY

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.

REPLY
@anotherfinemass

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 –

Jump to this post

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?

REPLY
@colleenyoung

I'd also like to add my welcome to @anotherfinemass. (You can edit your post up to 30 minutes 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?

Jump to this post

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.

REPLY
@anotherfinemass

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.

Jump to this post

@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.

REPLY
@hopeful33250

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?

Jump to this post

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.

REPLY
@colleenyoung

@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.

Jump to this post

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

REPLY

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.

REPLY

@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.

REPLY
@anotherfinemass

@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.

Jump to this post

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?

REPLY

Hello @anotherfinemass, I'm not sure if you are familiar with Google Scholar (https://scholar.google.com/) but thought I would mention it in case you are not familiar with it. I use it a lot trying to find the newest research information including medical treatments. It lets you sort the sources/articles it finds by year to get the newest first.

Hoping you find some answers…

REPLY
@anotherfinemass

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.

Jump to this post

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

REPLY
@hopeful33250

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?

Jump to this post

@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.

REPLY
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