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Thymic Tumors
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.
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Hola soy de Chile y me atendia mediante video llamada con mi doctor de Mayo Clinic ayer solicite una cita y me dicen que ya no podrán atenderme mas, solo presencial, le explique mis motivos por que no puedo viajar, tengo dos hijos pequeños, el viaje es muy largo de más de 24 horas y por el covid es muy peligroso por mi estado de salud. Alguien que me ayude.
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I'm sorry to hear this. Travelling is hard and with the complications of COVID even more so. Are you in the care of an oncology team in Chile?
Sí, pero es fundamental para mi tener una segunda opinion, por favor alguien me puede orientar que puedo hacer.
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Is there a major medical center in Chile that can offer a second opinion?
No, por eso solicité cita a Mayo Clinic en donde me niegan atención. He enviado muchos correos y no me dan respuesta con fundamento para negacion. Solo necesito contactarme con mi doctor de Mayo Clinic.
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My thinking is that you should make the trip. Someone will watch the children, mask up on the covid and make the appointment. This is important to your life, inconvenient, but it seems to me the greater risk all in all is not getting the treatment you need.
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2 ReactionsYou should be able to leave a message for your doctor through the Mayo Clinic patient portal https://onlineservices.mayoclinic.org/content/staticpatient/showpage/patientonline
For those of you who have dealt with Thymic Cancer, here is some information about an online seminar led by a doctor who specializes in research and treatment for those with this type of cancer:
Who: Sukhmani K. Padda, MD, is the featured guest
When: Thursday, September 2, 2021 from 12 noon to 1 pm, Eastern Time
Where: CCF’s Facebook Page, https://www.facebook.com/Carcinoid/. Just come to the page at noon and the program will begin. There is no need to register nor is there a special link.
For anyone not on Facebook, each of the presentations in the series is available on CCF’s YouTube channel, https://www.youtube.com/user/CarcinoidNETs. To receive notifications of all new videos on our YouTube channel, CLICK LIKE, SUBSCRIBE and HIT THE BELL to receive notifications each time a new video is uploaded.
CCF's Facebook page
Sukhmani K. Padda, MD, thoracic medical oncologist, was recently named Director of Thoracic Medical Oncology at Cedars-Sinai Cancer in Los Angeles, California. In collaboration with multidisciplinary clinical experts and scientists, Dr. Padda's work focuses on expanding clinical trials and translational research in thoracic oncology. The ultimate goal of this research is to improve the outcomes of patients with thoracic malignancies.
Dr. Padda has a particular interest in improving treatment for patients with rare thoracic tumors — such as thymic malignancies and lung neuroendocrine tumors — and genomic subsets of lung cancer, such as KRAS- and EGFR-positive tumors. Dr. Padda also conducts research into tumor biomarkers to help determine optimal treatments for patients.
She works with thoracic oncology experts around the country, leading and participating in clinical trials through the National Cancer Institute (NCI) Cancer Therapy Evaluation Program (CTEP) Cooperative Groups (e.g., ECOG, SWOG). She chairs the International Association for the Study of Lung Cancer (IASLC) Career Development/Fellowship Committee, which provides funding to early career lung cancer researchers around the world. Dr. Padda is a member of the North American Neuroendocrine Tumor Society (NANETS) and International Thymic Malignancy Interest Group (ITMIG). She has authored and co-authored dozens of papers and articles for peer-reviewed publications and is a peer reviewer for a number of prestigious cancer journals, including the Journal of Clinical Oncology and JAMA Oncology.
Viewers are welcome to pose questions for Dr. Padda during the live program.
Thanks, Teresa, for this introduction to Dr. Padda. I'm dealing with a massive, but non-cancerous, thymoma, that is involving my phrenic nerves. Resection was aborted, and chemo and radiation therapies are being lined up. I'm frightened of the radiation therapy available in my area, and have just started researching specialists with experience in my condition. Justin
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Hello Justin and welcome to Mayo Clinic Connect. I'm sorry to hear of your diagnosis of thymoma. Even though it is benign, it sounds as if the size of the thymoma is causing a lot of problems with treatment. I'm glad that this post from August gave you some much-needed information.
Have you had the opportunity to look at Dr. Padda's presentation on YouTube?
Since you say that you are, "frightened of the radiation therapy available in my area" I'm thinking that you might not live near a big city with research-oriented medical facilities.
Are you able to get a second opinion from a research-oriented medical facility such as a university medical school or a facility like Mayo Clinic? If so, I would strongly encourage you to do so.
You mentioned that the tumor was affecting your phrenic nerves. Could you speak a bit more about what those symptoms are like?
I look forward to hearing from you again.