waiting for the other shoe to drop - 1289531

onthemark
Posts:258

Longish post with 2 questions at the end.

I started having lower back pain around the L4 lumbar vertebra along with tingling equally in both legs about a week ago. This tingling is a new addition to residual peripheral neuropathy (in both feet) from cisplatin that ended ½ year ago after I had LUL VATS for adenocarcinoma of the lung.

Yesterday I started doing some gentle lumbar stretches and yoga poses I found on the web and I am much more mobile and comfortable today than yesterday but still have this pain in my .lower back and tingling in both legs. When standing I get a dull ache in both legs. All of these symptoms are completely new and arose simultaneously.

I realize that lower back pain is extremely common and I am probably worrying about nothing but I’ve never had it before and nowadays whenever I get an ailment I wonder if this could be the cancer returning. (This is a whole subject in and of itself and I’m guessing is pretty common). It’s hard to know how to really be rational about these concerns which are inevitable. I mean that cancer recurrence is a real possibility still for resected lung adenocarcinoma even with ACT, on the one hand, while on the other hand, every one ages and all those processes are on-going with cancer or without.

I had an abdominal and chest ct scan with and without contrast showing no evidence of metastasis about 5 weeks ago. Referring to the bone area it said specifically “no focal destructive lytic or sclerotic osseous lesions of the abdomen or pelvis”.

The question I have is does the standard ct scan of chest/abdomen/pelvis also image the spine in a way to rule out metastatic spread to the spine as a source of pain and secondly is there any other way to have pain as a result of cancer in the lower back or nervous system?

I am not sure if spine is included in the terms ‘abdomen or pelvis’.

The second question is more general: how to come to grips with cancer risk when confronting general health problems post diagnosis.

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JimC
Posts: 2753

Hi onthemark,

I'm sorry to hear that you are experiencing this pain and discomfort. You are absolutely correct that many if not all cancer patients at some point or another deal with the problem of "is this a symptom of my cancer, or just normal aging/life?" Of course, in the context of an existing cancer diagnosis, such symptoms should be reported to your oncologist so that proper follow-up may be initiated if necessary. If nothing else, a re-examination of the latest CT may be in order.

If the CT included both chest and abdomen, it would certainly image the spine, since the scan is taken from front, sides and back of the body. Although an MRI may give a more detailed view of bone structures than a CT, a bone metastasis causing such symptoms should appear on the CT. As a result, seeing nothing in the spine on the CT is a good sign.

It would also be somewhat unusual (though not impossible) for the recurrence of a lung cancer previously limited to the lung to first appear in the form of a bone metastasis.

If you haven't already done so, it would be good to discuss your symptoms with your oncologist and inquire about the possibility of an MRI of that area; even if it does not reveal a bone met, it may provide diagnostic information for some other musculoskeletal cause for your pain and numbness.

Good luck getting to the bottom of this, and finding some relief.

JimC
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onthemark
Posts: 258

Thanks for the info, Jim. That certainly eased my worries, and clarified my q about what the chest/abdomen/pelvis scan sees, and yes, I'll be seeing my oncologist soon and discuss this with him, but now armed with a better understanding of what to ask.

Of course there's a lot more to health than cancer but sometimes it hard to put things in perspective. I worry less about my back pain if I don't think it could be cancer (this is one of the under appreciated benefits of frequent scans for those of us who worry, to offset the risk of radiation). And it's known that back pain is more severe and more persistent in those that are depressed or stressed (so you see where this is going).

I appreciate now more than ever before the extent to which medicine is a question of odds, but when the odds are life or death it's hard to be nonchalant. I mean we are all playing an unwitting game of Russian Roulette.

Before I was working on the odds that only about 20% of spinal mets from lung cancer go to lumbar region.

Now I can multiply (more or less) the chance that the first appearance outside of the lung is in the spine (which you say is very low) say <1%, because that number is usually what docs call very low, but another factor related to the fact I had a scan and nothing was seen on the spine (another <1%).

Now I have a rule not to worry about anything less than the odds of dying in a car accident (0.165% lifetime). Even if my threshold was the lifetime chance of being hit by lightning (0.008%) my est. risk is still below that (< 0.002%) so I can put it away.

The more educated, the more I have read about lung cancer, the more I have seen how quickly things can deteriorate without any warning, like for instance with leptomeningeal carcinomatosis (not really sure why the 'tosis' is added).

I'd really like to hear how people have learned to keep things in perspective.

JimC
Posts: 2753

Hi onthemark,

I may need to clarify my statement about the chances of a bone metastasis being the first evidence of recurrence. In general, an initial metastasis is not significantly less likely to appear in the bones than elsewhere. When I wrote my post, I was thinking that the surgery you had removed a tumor from your lung and that there has been no evidence of recurrence, but in looking at your previous thread it seems that there may be residual disease in the lung. In that situation, you would be likely to see progression in the residual lung disease in addition to finding a new metastasis (although again, anything is possible).

In your case, that would be even more likely because your cancer probably does not tend toward the more invasive, aggressive range of lung cancers.

My conclusion remains that in the absence of a visible metastasis on the CT and taking into account the nature of your cancer, the odds are still pretty low that your symptoms arise from a bone metastasis, especially if the CT also failed to show any significant progression in the lung.

Best thoughts for a good meeting with your oncologist. If he/she doesn't think metastasis is likely, perhaps a consultation with an orthopedist will be the recommendation.

JimC
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JimC
Posts: 2753

As far as coping and keeping things in perspective, my wife and I found that time and experience helped greatly. One night, early in her first-line therapy, she was feeling severe back pain and nausea. We were thinking all the worst cancer-related thoughts, but a trip to the ER revealed the true culprit - a kidney stone. Over the course of her fight with cancer, she developed symptoms of other non-cancer related maladies, the same kinds of problems patients without cancer face on a regular basis. Over time, we took a "report, but don't worry excessively" attitude, although of course it works a bit better in theory than practice. But the panic level did diminish.

I hope that your current problem proves to be your first step toward a better perspective.

JimC
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onthemark
Posts: 258

Thanks for the clarification Jim. Getting a referral to an orthopedist is a great plan. I have never had symptoms from lung cancer.

I have several possible sources of tiny lung nodules in the right lung. My ct report from August says 'Persistent tiny right upper lobe pulmonary nodules some of which appear to be within bronchioles and may reflect retained mucus secretions rather than true pulmonary nodules. Additional right upper and lower lob ground glass opacities. These findings have been essentially stable since Nov 17, 2015'. The last ct from Nov 2016 found no changes so everything is stable.

Also the path report from my LUL in Jan 2016 found, in addition to the 1.9cm acinar/lepidic SUV 5.1 tumor with VPI an additional 2mm AAH and and addition 2mm AIS. The latter was the basis for staging me 2b and my ACT treatment. Right in the middle of my chemo, the 8th edition IASLC on 'multiple pulmonary sites of involvement' came out and it was clear from there that to be stage 2b the second tumor has to be 'solid' on ct, while AIS (which was not seen on prior ct or maybe just missed) is ground glass. Also I wonder about classifying a 2mm region as AIS rather than AAH. Seems to be a hard call.

So my situation goes into the multifocal adenocarcinoma type putting me at Stage 1b(2) in 8th ed. rather than Stage 2b in 7th ed.

As if that's not enough the path also found multiple minute meningothelial nodules in the resected specimen so some of the remaining right lung nodules could be those, mucus impaction, aah, ais, other things, or invasive carcinoma.

Unfortunately none of my ct reports say how big the ground glass are. They weren't mentioned in my Nov 2015 or one I had finishing chemo in June 2016, but may have just been missed since the Aug ct (from when I entered clinical trial) says the ggos are subtle and the findings are essentially unchanged. I am assuming they are also quite small. The only size mentioned is 2-3 mm for the 'tiny' solid nodules in the URL.

onthemark
Posts: 258

I feel my case is almost for the text books in its complexity and subtlety in the lung.

I think there are multiple disease processes going on but fortunately my lung function is perfectly healthy even after resection I went from 112% to 101% at six months post LUL lobectomy in FEV1. Other PFT numbers are fine too.

There's the multiple minute meningothelial process going on with a multifocal adenocarcinoma process together with whatever leads to mucus plugging. If there's another eruption where one area grows in the lung to become an aggressive invasive cancer, while others remain stable then from reading here and from my previous experience I know the thing to do is to deal with that area aggressively and I am at peace with that.

I think that since I stopped smoking in July 2015 then I'm not throwing toxins and cancer growth promoting agents into my lungs on a regular basis this might help slow if not stop the disease process.

But if it is out of the lungs then that's a whole new story...

onthemark
Posts: 258

Not sure why this was moved to Stage IV. As I wrote in the thread I was initially Stage 2B in 7th ed. aislc and Stage 1B in 8th ed. iaslc guidelines.

JimC
Posts: 2753

Hi onthemark,

I'm not sure either, but I have moved your thread to "Early Stage/Surgery".

JimC
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