SCLC, when to suspect?

Portal Forums Lung/Thoracic Cancer Work-Up/Staging of Lung Cancer SCLC, when to suspect?

This topic contains 13 replies, has 4 voices, and was last updated by catdander forum moderator catdander forum moderator 5 months ago.

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February 16, 2017 at 1:01 pm  #1290107    

SirXena

I have been battling progressive autonomic dysfunction over the past year and over the last 4 months increasing respiratory issues my Dr has decided to call COPD despite PFT a year ago not being bad enough for the Dx of it. We’ve exhausted all testing for autonomic and cardiac causes of typical nature. In Sept I brought up symptoms fitting paraneoplastic syndrome and asked about testing. In Oct Nov and Dec I also asked, finally Dec she agreed I fit and would order test though was unfamiliar (how?) with it. She took 2 weeks to order test which came back moderately positive for ganglionic ACHR neuronal antibodies along with note from Mayo lab of 30% probability of underlying cancer. That cancer is SCLC 2/3 of the time, the remaining 1/3 are thymoma, gastrointestinal or other cancers. She ordered a PET scan to look for occult cancer but it’s been a month waiting for insurance to approve. With my increasing need for respiratory support, clear chest xray, paraneoplastic antibodies, and autonomic symptoms not fitting nonparaneoplastic disease with this antibody, I am getting more and more concerned for SCLC. I am 37, have 23yr pack history, very productive cough plus increasing breathlessness despite COPD inhalers. What I want to know is, what signs do Dr’s see to even look for SCLC in order for it to be found at a treatable time when symptoms don’t occur c until b later stages? Should it have been suspected earlier, should my neurologist or PCP have checked paraneoplastic sooner, and why won’t my insurance approve the scan when every week delay could potentially make me more apt to be untreatable if there is a cancer. Am at a loss as what b to do but wait and worry.

Note: not sure if relevant but I also have untreated CIN2+ with HPV16 for at least 10months. Had precancerous cervix over a decade ago as well but no insurance til this past year to monitor or treat anything as it arose.

  • This topic was modified 5 months ago by  SirXena.
  • This topic was modified 5 months ago by  SirXena.
February 17, 2017 at 8:57 am  #1290110    

jimbaxter8180

Hi SirXena,
I hope you don’t mind me replying while you are waiting for an expert to reply. I too have been diagnosed with autonomic neuropathy and have tested positive for some anti-bodies that are related to sclc. I believe that sclc would be unusual to go on for over a year without getting a definitive diagnosis as it is known to be aggressive, the team on here will be able to give more information. What I wanted to say was I did get a PET/CT and that did not show any evidence of malignancy. I am now not sure if there could still be an occult tumour ( unlikely given timescales) or what is going on. Neuropathy is no picnic. What you will need to think through is what you will do if the PET is negative. Will you keep worrying due to the compelling evidence you think you have for sclc or will you be happy that there is no underlying malignancy? Just thought I would warn you, I now wonder when or if something will present and when I can breathe easy again.
Jim

February 17, 2017 at 9:45 am  #1290111    

onthemark

Hi SirXena,

Have you gotten a ct scan for your respiratory symptoms?

February 17, 2017 at 11:39 am  #1290114    

SirXena

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.

February 17, 2017 at 11:59 am  #1290115    

SirXena

@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.

February 17, 2017 at 12:14 pm  #1290116    

jimbaxter8180

Hi Xena, you seem to have looked at this in great depth, so will know much more than me. If you had a negative PET would you rule out an sclc? I am asking as I don’t know what my next move is and you seem clued up on this.
I don’t blame you for looking for an underlying cancer, I am doing the same but don’t have the knowledge to know what should be ruled out and in!
I hope you get to the bottom of this.
Jim

February 17, 2017 at 1:10 pm  #1290117    

SirXena

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-anti-hu.html. 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?

February 17, 2017 at 1:41 pm  #1290118    

onthemark

In my limited experience people don’t get PET scans before they’ve had ct scans.

February 17, 2017 at 1:45 pm  #1290119    

jimbaxter8180

I feel your pain Xena. I am sorry I have no suggestions for you to get a PET. I was in a similar predicament and ended up self paying, which I couldn’t really afford. The negative result was a nice surprise but has left me with no solution to get a diagnosis. I hope you have more luck in getting answers. Like you, I have limited quality of life with the debilitating symptoms.
Jim

February 17, 2017 at 2:23 pm  #1290120    

SirXena

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

February 17, 2017 at 3:09 pm  #1290121    
catdander forum moderator
catdander forum moderator

Hi, I’m sorry you’re going through such worry and symptoms. A CT scan will show any mass that is in the lung. A PET shows whether a mass is metabolically active or not which suggests inflammation, infection or cancer. Since a PET is so much more expensive to give they are reserved for when a mass shows a need to get more information. Without a mass I’m not sure what a PET is expected to offer in terms of diagnosing. CT remains the standard of care for lung cancer screening.

I hope you find what you need.
All best,
Janine

February 17, 2017 at 4:19 pm  #1290122    

SirXena

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.

February 18, 2017 at 3:08 am  #1290124    

jimbaxter8180

I get really confused when looking at information on scans. If you were to choose one, irrespective of cost, which one would have most chance of picking up an early sclc? Thanks.

February 18, 2017 at 4:13 am  #1290125    
catdander forum moderator
catdander forum moderator

It really takes an expert to read a scan properly. Even oncologists rely on the radiologists to interpret them many oncs consult with the radiologist even after receiving the scans and report for clarification. So I’d not feel too out of touch needing a pro to interpret. A stand alone CT scan is usually higher resolution than the CT that usually used with a PET and a PET alone only picks up high molecular activity. A cancer usually needs to be a cm or so to get picked up by PET where a CT will see anything of just a few mm. If something is found on a CT rather small it is easy to watch it to make sure it stays put (not cancer) without having to get invasive with your lungs.

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