I went to the pulmonologist today. He feels confident that the masses that I have are so small that they are unlikely to be cancer. We will repeat the cat scan and reassess later. They are too small to biopsy without a thoracotomy and he says that the risk way outweighs the benefit.

As far as my shortness of breath, he thinks that it is probably due to my myasthenia gravis. I have breathing tests scheduled to be sure.

So it looks like I'm not going to croak any time soon.

That is good news Celeste! So did they test for LEMS? Have they definitely ruled out thymectomy? And what is their strategy for treatment from here?

kathie

The strategy is to do breathing tests first. Then they will repeat the cat scan and see whether the masses have grown. Then it will be decided what to do next. Just like everything else, it is hurry up and wait.

Celeste, Do they realize that if on the off chance you have LEMS that it doesn't really matter what size the nodules are since the risk of cancer is so high? And the chance of remission is higher if they're taken out as soon as possible?

If it were me, I'd ask my neuro to check the LEMS antibodies and maybe the ACh ones again too.

Have you had a TB test? Have you had a lot of lung infections in the past?

I hope it's nothing but there are always those in between steps they can take like a couple simple blood tests.


Annie

Annie, I am so frustrated with them all. I know that you are right but they all think I am crazy. I am going to the neurologist next week. I am going to try to push him to do the blood tests. Thanks for your help.

I agree with getting the blood tests first. You have to know what you're dealing with before you can treat it properly. And even if the tests turn out negative, that is no guarantee that they won't be positive later. My Lems test was negative and was positive six months later.

Was your LEMS caused by cancer?