What a relief. So happy for you.

great to hear how well you are doing and that you are getting to see a good doctor. I had wondered how often to have the thymus checked and will be on my list of questions when I see the neuro at the end of the month... Hugs to you, Annette

This is very true, also even less is known about thymic carcinoma. Much worse and only less than 20 cases per year world wide. I have both plus "uncontrolled" MG. That's how my cancer was found. Stage III. Note: I'm new here and haven't seen much yet as I can't hardly see due to the MG. But, DO NOT TAKE STATIN DRUGS IF YOU HAVE MG. It probably will cause significant excerbation of MG. You are very lucky, I understand that Dr. Loehrer IS the guru. Catching it early you should have a long life ahead. A very good group is "thymic group" in Yahoo groups.

Judith,
It is great to read, how well you are doing. Thank you for this important but scary info..

Hoping your symptoms stay away
Feel well, Love, Maria

Judith -

I have been following your posts and am so happy you are doing well and are in recovery!

Interesting anecdote about the incidence of thymic cancer in MG'ers.

I don't know what to infer: does MG cause thymic cancer? Evidence is mounting - and if one does the research, it clearly shows - that the thymus likely has nothing to do with MG...that all previous beliefs that it was responsible for MG were incorrect.

I wonder if MG and thymic cancer are coincident and caused by some other factor. In other words, is there say a genetic defect that causes (or allows environmental hazards to cause) BOTH MG AND thymic cancer? Or maybe some only get MG or only get thymic cancer.

I haven't had a chest x-ray or CT scan in 20 years and I no longer have a problem with MG symptoms, just some minor annoyance every once-in-awhile.

Curt

Hi Curt! Would you mind pointing me to your research sources? I like to read both sides of the issue, and I haven't yet run across data that minimizes or discounts thymic involvement. I would greatly appreciate it as I have to consider whether or not to pursue this procedure. Thanks!

Interesting info. I am glad they got it all!

I am not sure what Curt is referring to, but there certainly needs to be more known about the thymus still....Unless you have a thymoma. Judith's dr said that up to 50%, and I don't know where this information is from. I certainly will look into it. I haven't seen anything like what I am hearing here. In reference to thymectomy for mg:

"the procedure is more controversial in patients who do not show thymic abnormalities. Although some of these patients improve following thymectomy, some patients experience severe exacerbations and the highly controversial concept of "therapeutic thymectomy" for patients with thymus hyperplasia is disputed by many experts, and efforts are underway to unequivocally answer this important question."

http://en.wikipedia.org/wiki/Myasthenia_gravis

See the bottom of the quote here though. I have read this, but did not pay attention. No numbers thrown around, maybe in the papers following:

"Around 10% to 15% of myasthenics have tumours, called thymomas, which are usually relatively benign, but may become malignant. Thymomas are normally removed as soon as possible to prevent local spread (although, only around 30 to 50% of people with thymomas also have MG - and in some, MG develops after they have their thymectomy!). The risk of development of thymoma has led to thymectomy as well for MG patients without thymoma."

http://www.myasthenia.org.au/html/treatments.htm#t

(For more information on THYMOMAS, go to the Myasthenia Gravis Association UK website [http://www.mgauk.org/]. There are two excellent papers by Dr Nick Willcox of the Institute of Molecular Medicine , University of Oxford on The Mysteries of Thymoma and MG.)

Thanks Judith for bringing this stuff to our attention....Wow! Got me going on a tangent. It can be scary stuff...check these facts out from the american academy of neurology in reference to paraneoplastic neurologic....

"All patients with newly diagnosed MG should have chest CT to evaluate for thymoma.
Chest radiographs may miss up to 25% of thymomas. If initial imaging is negative,
repeat studies in 3 to 6 months are warranted for patients at high risk for thymoma
(late-onset, seropositive, generalized MG)."

And many more factoids:

http://www.aan.com/elibrary/continuum/?event=home.chapterKeyPoints&id=ovid.com%3A%2Fbib%2Fovftdb%2F00132979-200902000-00009

FYI:

Paraneoplastic neurologic disorders...A paraneoplastic syndrome is a disease or symptom that is the consequence of the presence of cancer in the body, but is not due to the local presence of cancer cells. These phenomena are mediated by humoral factors (by hormones or cytokines) excreted by tumor cells or by an immune response against the tumor. Paraneoplastic syndromes are typical among middle aged to older patients, and they most commonly present with cancers of the lung, breast, ovaries or lymphatic system (a lymphoma).[1] Sometimes the symptoms of paraneoplastic syndromes show even before the diagnosis of a malignancy.

Shelleyot wrote: "Hi Curt! Would you mind pointing me to your research sources? I like to read both sides of the issue, and I haven't yet run across data that minimizes or discounts thymic involvement. I would greatly appreciate it as I have to consider whether or not to pursue this procedure. Thanks!"

Shelley - I hang out with research scientists who are doing primary - and as yet, unpublished - research. What is being discovered today is changing the entire belief system of current medicine as it relates to autoimmune diseases. About six months ago, some new T cells were discovered that have implications for sero-negative MG patients. It also points to the fact, apparently, that the thymus may have nothing to do with MG at all. Scientists are trying to figure out the interconnectedness of all these factors. I'm an economist, not a medical researcher, so I do want to misstate facts here and I'd be sure to bungle them up really quickly.

What I would consider is to keep tuned to see what research does get published over the next year or so. In the meantime, unless one has a thymoma, I wouldn't be too quick to have my thymus removed. Remember, neuros suggest thymectomy as a knee jerk response to EVERYONE who presents MG. It's the "universal" prescription. Mine insisted I have one without even seeing pictures of my thymus. Based on what? Stupidity, pure stupidity.

Curt

That was supposed to read "don't want to misstate," not DO. To bad we can't make edits after posting. :-(

All thymomas are malignant due to their invasive nature and chance of recurrence. I have to say the many MG doctors, surgeons and oncologists and many web sites are not up to date with the latest research on thymoma. It is hard to wrap one's head the benign/malignant meaning as most of us has always heard the benign=no cancer, malignant=cancer. That is not the case for the rare thymoma.I urge you to go to thymic.org for accurate information on thymoma. It has taken me more than a year to mudle through all of the misinformation get a somewhat accurate understanding of thymoma.
In the "old days", doctors classified thymoma as "benign" because in the technical pathological sense, the cells still looked like thymus cells, not cancer cells. It was not "technically" cancer (which was then called malignant), so they were called benign. So a thymoma was said to be benign while thymic carcinoma was said to be malignant.
However, thymomas could grow to life-threatening size, and required treatment with chemo and/or radiation. So these invasive thymomas were called "malignant thymoma". So we had a "benign" tumor that had a malignant behavior. If it has to
be treated with surgery, chemo, radiation, and was life threatening, there was nothing benign about it, and patients were terribly confused.
Today, the terms benign and malignant are not really used...rather non-invasive thymoma, invasive thymoma, and thymic carcinoma. All thymomas are potentially invasive and have a chance of recurrence thus malignant status. Many thymoma can be cured with surgery alone but there is always the chance of recurrence no matter the type and stage so one must be vigilant and demand periodic scans. I had mine removed at a major teaching hospital and still received misinformation on my diagnosis. Only because I did my own research on my pathology report did I find out that I did indeed need adjunct radiation and careful monitoring.
For those interested: besides the thymic.org site, Yale Medical Center has a good and current description of thymoma/carcinoma @ http://medicine.yale.edu/cancer/patient/programs/thoracic/info/info.aspx?id=CDR269321#section_48
~sherry

Like Curt said, too bad we can't make edits after posting. I proofread and still don't see the errors until after I post:)
~sherry