SCLC, when to suspect? - 1290107

No. Other than the PFT nearly a year ago now which was borderline, and the chest xray in October after I pushed for it, has been no imaging of torso other than echos. She just based on symptoms and progression prescribed COPD meds, which initially (anoro elliptical samples for months) worked great with few issues at first, were then replaced since insurance refused to cover that drug (incruse elliptical and serevent replaced it as they're covered) help but productive cough particularly in mornings or cold/moist conditions returned. Having had asthma as a kid I never had inhaler for but only some issues with exercise or allergies, I now have trouble breathing at random times for no reason even on the meds.
Most of the last year was spent going to various specialists and monthly PCP trying to track down source of autonomic symptoms, the list is about 50 long but includes abnormal exercise intolerance: nausea, blacking out of vision, weakness, trembling, tachycardia all with very little effort expended and previously very active and fit; plus dry eyes and mouth, severe chronic constipation, insomnia, random pains in various bones and joints, extreme carsickness, extreme thirst, various bladder issues, hypovolemia, hypotension, POTS, numbness and tingling extremities and even neck and back of head laying down, intolerance to slightest heat or cold, greatly increased nightblindness-no longer able to drive at night at all, and whether it's own symptom or due to the rest, constant fatigue and malaise. More symptoms but these are the most obvious and frequent. Nearly all symptoms checked individually some with multiple tests, no tests had conclusive findings, many were borderline. Tilt table test was only one obvious finding of POTS but the cardiologist dismissed it altogether and said I was dehydrated though I'm not. POTS can be linked, but rarely, to the ACHR antibody I have, and in presence of all other symptoms is a symptom not the cause.

@jimbaxter, with the 30% chance I certainly want test done obviouly, but sclc isn't the only possibility for an occult cancer in my case. Family Hx of different cancers, untreated precancerous of cervix myself, and my smoking Hx make it even more likely though. If PET comes back clean then will need immunotherapy, but it's either immuno treatments or cancer treatments and have to know which before will treat anything. The lung issues are only thing been treated whatsoever to date and the whole thing is preventing me from enjoying anything but television. Need answer one way or other. But, though SCLC is 2/3 of cancers found in this case, it could very well be another type that's just recently metastasized to lungs causing the recent increase in issues. As a longterm smoker occasional symptoms are to be expected but not the large increase since fall. If it is just COPY itself and the autoimmune autonomic neuropathy, then fine we can treat those, but COPD also comes with an increase in lung cancer. Thing is about duration of other symptoms c is that paraneoplastic syndromes frequently begin months even years before a cancer Dx, and is SCLC, symptoms only occur in later stages. Both facts make plenty room for duration and increasing severity of all symptoms. Will have to see, if can ever get the PET scan done. Most cancers aren't routinely screened for, and the ONLY one screened for at my age, I'm at high risk for and have cell changes 2/3 of the way to cancer, or at least that was 10 months ago. Hasn't been treated or checked since then but will in a few weeks. They don't check for any other cancer until 40s and 50s. At my age and gender, these cancers are found but usually delayed Dx and with abnormal presentations, so gotta look at everything. I'm just wondering, other than what my true Dx is of course, HOW anyone ever finds SCLC before it's too late if no one looks for it and symptoms don't occur til too late.

PET can't rule anything out necessarily but can detect the smallest tumors of all (6-8mm) as well as its main purpose, seeing heightened cell metabolism which is usually but not always, indicative of cancer. Not all cancers can be seen on PET as not all result in tumors, and if tumors are too small they may not show.
Info on your anti-hu: http://www.clinlabnavigator.com/antineuronal-nuclear-antibody-type-1-an…. there are many sites detailing which paraneoplastic antibodies link to what but here is one that may help. I also read one from nih.go that has linked it to some head and neck cancers. SCLC may be most common but it's not only place to check for that antibody. Luckily for you there is much more info available on anti-h7 than in my case, ganglionic neuronal ACHR, most result in info about the muscular ACHR antibody which is quite different. One is linked to my myesthenia gravis (muscular ACHR) the other to Autoimmune Autonomic Ganglionopathy (ganglionic neuronal ACHR) when there isn't also a cancer found. In my case my symptoms would fit AAG except that it's supposed to include without exception ortho static hypotension with no POTS, and I have POTS with no ortho hypotension.
As an update to my case, I just got off phone with insurance company and they're refusing to approve a PET scan for me, so if what I'm going to do. Can either appeal and wait several more weeks, try through another insurance, or make them spend the money in other ways while I spend a lot of time getting CT or mri scans of each individual place that needs checking. I don't get why they refuse best test for my needs when it costs more to use other methods multiple times for a lesser result. Insurance Co said refusal was due to no cancer or paraneoplastic Dx, despite Pos bloodtest. The point of the PET is to find where to look in the first place if at all. Can't do a biopsy for a dx if no idea what to even biopsy.

Any suggestions for getting PET approved?

Medicaid said to submit it to them if other denied (manged car plan) so will try that, but a CT of full torso and neck is an option yes. PET scans can find things a CT will miss so why would insurance want to waste money on one only to follow up with other anyway? If something is seen on CT it will get biopsied, or PET scanned after, and if something on biopsy will also get PET to check metastases. Just doesn't make financial sense nor medical sense. Use best practice should be best. What do you do if CT finds nothing, wait and repeat, or do PET? If CT can miss things why use it in this case. Have had cranial and neck CT and cranial MRI due to the near-syncope and chronic migraines accompanying the other symptoms, but nothing in torso. Xray is least effective and was only used on lungs 4 months ago to look for infection.
I had no medical care for 11 years preceding last March so other than symptoms developing since then there's nothing to compare anything to, and many things still left unchecked. I still wonder why my neurologist didn't order paraneoplastic panel based on symptoms and history back in August, he ordered it for my roommate for much less fitting symptoms. All he did for me was get the MRI and a few bloodtests looking for lupus and sjogrens, then told me go get a diagnosis from someone else and he'll treat after that, though at the time all symptoms pointed to autonomic nervous system. Lung issues came later. Why not seek a Dx himself? Idk. Spent 4 months convincing PCP to do paraneoplastic panel later on, leading me finally to this impasse. I don't know if my whole Healthcare network is out of touch with current medical knowledgw and practice or they just don't care or what. Took 3 attempts to get Holter monitor successfully done, my tilt table test was done grossly incorrectly according to major medical institutions and though obviously positive, interpreted as negative, and no one considered paraneoplastic til I pushed long enough

It isn't just lung cancer being looked for just the most likely, and smaller tumors than will show on CT can show on PET due to their metabolic signature. I need everything from thymus to lungs to gastro, pancreas, and reproduction checked. Since the suspicion isn't about a mass, but a cancer somewhere, of unknown size. A benign mass wouldn't cause the symptoms and antibodies, and it's a large area to cover, with paraneoplastic typically showing in very early stages, any masses would be small. PET also has higher sensitivity than CT alone, and can detect bone masses at same time. Some cancers don't create masses at all just altered tissues and altered metabolic functions. The altered metabolism would show on PET scan when there b is no mass or density differences to show. The fact I also have CIN2+ (cervical precancerous in 2/3 or more thickness biopsied) that's untreated 10 months and no checks made on its development or invasion beyond cervix ever, makes PET even more logical. The recommendation for FDG-PET (not a CT) was made by the Mayo Clinic accompanying the paraneoplastic antibody results. I'd have to guess that they wouldn't recommend it instead of a CT if CT was just fine especially when they have absolutely no business interest in which scan I got. A CT may prove sufficient, but it may very well not too.