Hi, unfortunately there seems to be a lot of lung cancer in my family. Recently I have undergone a number of tests and been diagnosed with autonomic neuropathy. I didn't realise that one illness could carry so many symptoms. My doctor has also decided to do a blood test for something called LEMS. He question of lung cancer came up as he wanted to refer me for a CT scan. This was "rather unremarkable". I am still waiting for the LEMS test to come back, but either way I wondered if autonomic neuropathy could be a precursor to small cell lung cancer. I can see a well established link between the LEMS and small cell lung cancer, can I relax if the LEM test comes back clear or is it a case of wait and see? If so, how long would you wait? Sorry for so many questions, I am waiting to go on vacation and can't get this out of my mind. I will be grateful for any response, thank you.
Jim.
Autonomic neuropathy - 1287583
jimbaxter8180
![]()
Posts:20
Forums
Reply # - August 4, 2016, 08:58 AM
I forgot to say immy last
I forgot to say immy last post that the autonomic neuropathy took 18 months to diagnose, I don't know if that indicates anything or makes lung cancer more or less likely?
Reply # - August 4, 2016, 02:52 PM
Autonomic neuropathy may be
Autonomic neuropathy may be caused by treatment for lung cancer but is not known to be a precursor for it. Also you say it took 18 months to get to this diagnosis and if it was related to small cell lung cancer, you would definitely know by now as it's not a slow growing type of cancer. I would have to wonder with these symptoms neuropathy and possible LEMS if they've done a brain and spine MRI?
Take care, Judy
I am not a medical professional but a two time lung cancer survivor and advocate.
Reply # - August 5, 2016, 04:40 AM
Thank you for such a quick
Thank you for such a quick reply Judy. A work colleague told me that if there was a link then this was the site that would know. My colleague suffers from neuoropathy as a result of her chemo which is exactly what you say can happen. Hopefully the LEMS test is more a precaution as it sounds very rare and although I have some weakness in my legs and arms I can still arise from a chair or go up stairs. I have found the autonomic neuropathy quite debilitating and I now have so much more thoughts for people battling this and cancer. Take care. Jim.
Reply # - August 5, 2016, 09:15 AM
Hi Jim,
Hi Jim,
Welcome to GRACE. I'm sorry to hear that your suffering from these symptoms, but I agree with Judy that it is unlikely to be connected with small cell lung cancer. In his post on neuropathy, Dr. West lists a number of potential causes of autonomic neuropathy, but the only one involving cancer is a situation in which a tumor is directly pressing on nerves, and if that were the case for you it is unlikely that it wouldn't show up on a CT scan.
I hope that the LEMS testing is negative and that further workup reveals a relatively easily treated condition.
JimC
Forum moderator
Reply # - August 5, 2016, 12:30 PM
Thanks to you too Jim, I am
Thanks to you too Jim, I am glad I posted. Great article by your doctor. Is the Paraneoplastic neurological disorder a type of neoplasm? I have tried too look at all the suggestions in the article and this one is confusing!
Thanks, Jim.
Reply # - August 5, 2016, 07:05 PM
Hi Jim,
Hi Jim,
My post wasn't quite accurate, in that if the symptoms of autonomic neuropathy are caused by a paraneoplastic syndrome, it is possible that cancer is the cause of the syndrome. It doesn't represent a spread of the cancer, but rather an over=reaction of the immune system to the cancer. Again, paraneoplastic nervous disorders are only one possible cause of the neuropathy, so it shouldn't be presumed that cancer is present, and the clear CT scan is good evidence that it is not..
JimC
Forum moderator
Reply # - August 31, 2016, 01:29 AM
Hi,
Hi,
As I am still waiting the results of some blood tests, the doctor actually ordered something called a paraneoplastic panel. I read the recent GRACE cast from Dr Sanborn on Small Cell Lung Cancer and this gives me some great information.
There is a line which says
"This is not a cancer that sneaks up on a person over the course of a year, or they’ve had a gradual decline or a gradual symptom onset over that time. This is something that hits people harder and faster than that"
This gives me comfort as something has been sneaking up on me over the 18 months. Looking around I do find information though that says paraneoplastic nervous disorders may be apparent years before the small cell shows up. If this is the case, then perhaps the small cell is sneaking up over the course of years?
I'm not assuming that my neuropathy is related to a cancer, my doctor suspects that the blood tests will be fine and he is just being cautious. I've not been able to find much on the paraneoplastic nervous disorders brought on prior to diagnoses so was just looking for a bit more information from a reliable source.
Hope my ramblings make some sense.
Jim
Reply # - August 31, 2016, 07:34 AM
Paraneoplastic nervous
Paraneoplastic nervous disorders (paraneoplastic peripheral neuropathy) can be caused from autoimmune diseases. It's really hard to imagine that you'd have SCLC over the course of 18 months and have no way to diagnose it. Blood counts would probably change and you should be showing tumors by now. My Mom was dx with ext SCLC after having symptoms for 6 months or so before being dx. After dx from beginning to end was only 6 weeks. And she had many symptoms that her doctor wrongly followed up on. It would not have changed her dx had she been dx in that previous 6 months as it was very aggressive and she was already ext. at that point. So this is so very doubtful to be SCLC and more likely a totally different diagnosis.
Take care, Judy
Reply # - August 31, 2016, 11:55 AM
Thank you for replying Judy.
Thank you for replying Judy. I have too much time on my hands at the moment and trying to understand everything that I read. I am thankful that people like you are willing to pull me back in to reality.
Jim
Reply # - September 25, 2016, 02:44 AM
Hi, I received my blood test
Hi, I received my blood test results on Friday, it was negative for LEMS but he had also ordered a paraneoplastic panel, one of which was elevated. I am now a bit confused, I can see some sites talking about a full work up for malignancy. Given my unremarkable CT in July I am not sure how worried I should be. My doctor is suggesting a repeat blood test in 6 months.
From looking at the internet I can see some reports of this being very rare to others saying it is under reported. Is it anything you have come across before.
This appears to be a very complex area, so any pointers will help me.
Thanks, Jim.
Reply # - September 25, 2016, 05:51 AM
That's good news! What was
That's good news! What was elevated on the PP panel? It nothing is showing up on a scan, then they have no way of knowing what is going on. Blood tests and panels can show different things for different reasons and not necessarily cancer. So until a tumor appears where a biopsy can be done, there is nothing to do but wait. If in fact it is cancer. Rescanning in 6months would be an option as well. But I'd be very doubtful that this would be SCLC since it tends to be more aggressive in nature than other LC. Take care, Judy
Reply # - September 25, 2016, 08:10 AM
Hi Judy,
Hi Judy,
Thanks for your comment. The doc said he would put all the results in writing, he read out 5 or 6 and I can only remember one of them which was called anti-yo. The anti-yo was one of the negative ones. The doc didn't even mention another scan and it didn't cross my mind. Maybe I will be able to look more into the test and make a more informed decision when I get written confirmation of the results. As you say, it could be a number of things and with nothing on CT, there is not a lot that can be done.
Thanks, Jim.
Reply # - September 26, 2016, 03:43 AM
I just called the doctors
I just called the doctors office and was informed that it was the Anti-Hu Antibody which came back positive. She said there was no associated level, it was just a positive or negative result.
I hope to get an appointment with the doc some time next week to discuss. From my scant knowledge of autonomic neuropathies and SCLC, I'm expect that the fact that I am still walking around means the neuropathy isn't severe and SCLC unlikely.
Is there anything I should be asking the doctor?
Thanks, Jim