Introduction - CM

[CM_in_PNW]

Hi everyone,

I've joined this forum in the hopes of finding folks who can relate to my journey, and maybe some friendly advice on how to reach a diagnosis, hopefully sooner than later!

After 3 years of unexplained symptoms, and lots of stress and anxiety, a CT scan of my chest revealed a 3x3x6 mm nodule this week, along with a few other big words.
I do not have a diagnosis, only PCP instructions to follow up in 12 months for another CT scan. 

I'm finding a yearlong wait to be very unsatisfactory, given how I feel symptoms constantly changing / progressing. 

I don't know for certain that it's lung cancer, but I'm CERTAIN something nasty is festering, and all my research shows it's better to get answers early, no matter what it ends up being.

I don't know if the "introductions" is the right place for it, but here is my short story. 

Thanks in advance for reading!

I'm currently 44 years old, and until the last couple years, considered myself to be a very athletic and healthy individual.
I smoked cigarettes for 5 years while age 18-23. Since then, I have smoked marijuana fairly regularly over the years, more frequently since legalization in 2014. 

First symptom of any kind was an unconfirmed gout flare-up in 2016. My first and only full flare, but subsequent tests have never shown an elevated uric acid level. 

Since that time, I have been experiencing periods of night sweats, general fatigue/malaise, stomach bloating, diarrhea, fluctuating body weight, and intermittent joint/bone pain all over.
Sometimes like I was right on the edge of another gout flare, but then it fades without escalating to red-alert status.

I have seen my PCP as well as a rheumatologist, many times over the last 3 years. Plenty of tests and blood work have been performed regularly, but nothing glaring has come up. 

I've had vague chest/upper back pain for a few years, but several xray's were always clear. 
Chest pains increased a few months ago and CT scan last week revealed a small nodule. 

Also had an MRI of my hip done on the same day, which didn't reveal anything of note about cause of hip/leg pain, except lymphadenopathy.

Thanks again if you've made it this far! 

Given the broader scope of symptoms I continue to experience, there is no way I can sit around and wait ANOTHER year to (hopefully) get answers, when I feel like I already KNOW what is 

What course of action should I be taking to feel more satisfied with the my HCP's, as well as anything I can do on my own?

Should I be seeking a second opinion? How do I go about doing so? 
Do I approach a cancer center, or another internal medicine physician? 

Do I need to change my PCP, or can she arrange something like that?
How will my insurance plan handle that process, or am I on my own? 

Any advice on navigating our health care system would be greatly appreciated!

Phew, feels good to just put it in writing at least. Not brief, but I could elaborate on everything!
Kind regards and best wishes. 

 

[Rower Michelle]

Hello there and Welcome

I can certainly understand what you are experiencing having been through something similar. I don’t believe the PCPs are well equipped to make complex diagnosis. 

In the course of your treatment have you seen a pulmonologist?  I certainly wouldn’t wait a year. Trust your instinct and keep pushing. In this case the insurance company may work to your advantage if you ask for a referral to their medical case management program. 

You’re your own best advocate. Feel free to post the detailed CT findings too. While we are not physicians, we’ve got a lot of experience in this forum. 

Michelle

[Curt]

Hello and welcome.  I’ll first say that if you are concerned you should pursue a diagnosis.  You know your body best and if you feel there is something wrong you should continue to pursue  what that is.  I am not a doctor and please don’t feel like I am dismissing your concerns with the next part.  A 3x3x6 mm nodule is VERY small.  A nodule that size is in all likelihood not cancer.  If it is cancer and it is that small and isolated only to that one nodule it would not likely cause any symptoms.  The tricky part about lung cancer is it goes symptom free until it’s grown and spread.  It sounds like neither is the case for you.  The typical protocol for nodules is to watch them.  A year is long.  It is usually six months.  Three months if you have other predetermining factors like age, smoking history, family history, etc.  You should continue to watch it   They will watch to see if it grows   If it grows to bigger than 1 cm they will do a PET scan.  That will provide better indication, though not always definitive, of what the nodule is.  If it doesn’t grow at all for a bunch of years they will probably opt to spread the scans out further   Maybe every year or longer.  

Given your symptoms I’d continue to pursue a diagnosis but I don’t think I’d jump to a lung cancer conclusion so quickly.  You should watch the nodule, but given it’s size it’s REALLY small.  There are lots of other things besides lung cancer that can cause those symptoms.  My wife had had Lymes disease and Rocky Mountain Spotted fever.  She experienced most of the symptoms you described with both of those.  

Not knowing what is wrong is very frustrating.  I hope you find some answers soon.  

[CM_in_PNW]

2 hours ago, Rower Michelle said:

Hello there and Welcome

I can certainly understand what you are experiencing having been through something similar. I don’t believe the PCPs are well equipped to make complex diagnosis. 

In the course of your treatment have you seen a pulmonologist?  I certainly wouldn’t wait a year. Trust your instinct and keep pushing. In this case the insurance company may work to your advantage if you ask for a referral to their medical case management program. 

You’re your own best advocate. Feel free to post the detailed CT findings too. While we are not physicians, we’ve got a lot of experience in this forum. 

Michelle

Thanks! 

Yes I did see a pulmonologist on monday. It was a fairly quick visit and they gave me what seemed like a fairly routine expiration test measuring FEV values. Only thing he mentioned was that he would let my PCP discuss the results with me. Haven't heard anything on that front, maybe in the next couple days.

 

 

 

[CM_in_PNW]

1 hour ago, Curt said:

Hello and welcome.  I’ll first say that if you are concerned you should pursue a diagnosis.  You know your body best and if you feel there is something wrong you should continue to pursue  what that is.  I am not a doctor and please don’t feel like I am dismissing your concerns with the next part.  A 3x3x6 mm nodule is VERY small.  A nodule that size is in all likelihood not cancer.  If it is cancer and it is that small and isolated only to that one nodule it would not likely cause any symptoms.  The tricky part about lung cancer is it goes symptom free until it’s grown and spread.  It sounds like neither is the case for you.  The typical protocol for nodules is to watch them.  A year is long.  It is usually six months.  Three months if you have other predetermining factors like age, smoking history, family history, etc.  You should continue to watch it   They will watch to see if it grows   If it grows to bigger than 1 cm they will do a PET scan.  That will provide better indication, though not always definitive, of what the nodule is.  If it doesn’t grow at all for a bunch of years they will probably opt to spread the scans out further   Maybe every year or longer.  

Given your symptoms I’d continue to pursue a diagnosis but I don’t think I’d jump to a lung cancer conclusion so quickly.  You should watch the nodule, but given it’s size it’s REALLY small.  There are lots of other things besides lung cancer that can cause those symptoms.  My wife had had Lymes disease and Rocky Mountain Spotted fever.  She experienced most of the symptoms you described with both of those.  

Not knowing what is wrong is very frustrating.  I hope you find some answers soon.  

Thanks for your insight. It's quite appreciated. I'm acutely aware that posting on this forum is perhaps a bit presumptious, but it's been 3 years of chasing answers with ongoing symptoms and the idea of waiting a year seems a bit much. 

I guess I'm just hoping something will resonate here, and maybe help me (and hopefully others) find answers. 

The size of the nodule is fairly encouraging as you mention, but my concern is that this nodule is another symptom of something spreading from elsewhere, maybe the throat area. The chest pains I feel correspond vaguely to the two areas of concern identified in my CT scan results. 

Lymes and Rocky Mountain have been on my radar as well. I grew up on the east coast and have pulled multiple ticks, although it's been 20 years. I've recently had two lyme antibody tests , both negative. But Lyme's can be a bugger to find I believe. My mother in law has been going through a rough time with Lyme's, it took years to get answers in her case too.

Thanks!

 

 

[Curt]

Many of us show up to this site well before a diagnosis with just something showing up on a scan.  I did with an 8 mm nodule that was found by accident and spent a year with periodic tests.  I get the stress and worry.  We are here for you cancer or not.  Let’s hope for not.  

[CIndy0121]

Hi, We consistently say, “we know our own bodies best” or “you have to continue to aggressively advocate for yourself until you are satisfied”, etc.etc. To be honest, I have read your story and I do completely understand the anxiety you are having, but most of us will also tell you that the only definitive diagnosis of cancer requires a biopsy and study of the tissue retrieved. Not only is the size of your nodule so small and unchanged that it is more likely a benign nodule that many people can have one or two of. But that’s even too small to biopsy, so they really cannot five you a definitive answer. Normally the nodule has to be at least 1cm or 10mm and located in an area they can access in order to successfully perform a needle biopsy. I am sure they have also assured you that a year is a sufficient amount of time to take another look, but that more frequent scans expose you to unnecessary radiation. This should be encouraging news to you, but with other symptoms, don’t get me wrong, we ALL understand the anxiety of unanswered questions regarding our health, especially with respect to suspicions that a nodule could be more serious. It’s infuriating to us patients to hear things from medical professionals like, “There’s nothing else we can do at this time” when we are trying so hard to get answers. It seems like you have seen the appropriate providers and had the blood tests and imaging to rule out anything serious. You have even tested negative for Lyme which can cause all kinds of havoc years after the initial “infection”. The only other suggestion I would have is a functional medicine/integrative medicine practitioner to evaluate to word of the decade, your “gut” bacteria. There is a substantiated link between the microbiome and problems in other systems or you could have a vitamin deficiency or hormonal imbalance. It’s not unheard of for a woman your age to be entering peri-menopause. I am also probably not the first to advise you (because all of us probably heard it from others at some point ourselves) that you should consider some of the ways that promote relaxation and stress reduction like yoga or meditation or acupuncture, sublingual CBD tincture. Best wishes getting some answers that will satisfy you enough to relax and feel better. Cynthia

[CM_in_PNW]

1 hour ago, CIndy0121 said:

Hi, We consistently say, “we know our own bodies best” or “you have to continue to aggressively advocate for yourself until you are satisfied”, etc.etc. To be honest, I have read your story and I do completely understand the anxiety you are having, but most of us will also tell you that the only definitive diagnosis of cancer requires a biopsy and study of the tissue retrieved. Not only is the size of your nodule so small and unchanged that it is more likely a benign nodule that many people can have one or two of. But that’s even too small to biopsy, so they really cannot five you a definitive answer. Normally the nodule has to be at least 1cm or 10mm and located in an area they can access in order to successfully perform a needle biopsy. I am sure they have also assured you that a year is a sufficient amount of time to take another look, but that more frequent scans expose you to unnecessary radiation. This should be encouraging news to you, but with other symptoms, don’t get me wrong, we ALL understand the anxiety of unanswered questions regarding our health, especially with respect to suspicions that a nodule could be more serious. It’s infuriating to us patients to hear things from medical professionals like, “There’s nothing else we can do at this time” when we are trying so hard to get answers. It seems like you have seen the appropriate providers and had the blood tests and imaging to rule out anything serious. You have even tested negative for Lyme which can cause all kinds of havoc years after the initial “infection”. The only other suggestion I would have is a functional medicine/integrative medicine practitioner to evaluate to word of the decade, your “gut” bacteria. There is a substantiated link between the microbiome and problems in other systems or you could have a vitamin deficiency or hormonal imbalance. It’s not unheard of for a woman your age to be entering peri-menopause. I am also probably not the first to advise you (because all of us probably heard it from others at some point ourselves) that you should consider some of the ways that promote relaxation and stress reduction like yoga or meditation or acupuncture, sublingual CBD tincture. Best wishes getting some answers that will satisfy you enough to relax and feel better. Cynthia

Thanks so much!

I understand there isn't much to be done in the short term about this small nodule, but with early detection being so critical, there is no doubt that I will continue to push hard to investigate what is causing my symptoms. I'm not an overly anxious person, but 3 years of constant pain sure does motivate. Peri-menopause is likely not an issue for me, as a male.

Relaxation and stress reduction techniques are great, but I haven't tried acupuncture or integrative medicine approach yet.  I have a good reference and a path forward on the acupuncture front, but I'm at a bit of a loss on how to find a reputable functional/integrative medicine provider. 

Thanks again!

[Rower Michelle]

Finding a good Integrative Medicine Doc who is not a quack isn’t easy.  I would look up Andrew Weil MD Center for Integrative Medicine in Arizona. On the web site there is a zip code search tool that can be useful. Dr Weil is a well respected international expert.  

There is also a board certification for Integrative Medicine now so calling the State Medical Board might be an option.  

The PCPs aren’t really tuned into this scene but the nurses are a good place to start asking for potential referrals.  

Sometimes IM docs will accept insurance, most however do not. The going rate is about $300 an hour.  On occasion you will see some type of “membership fee” costs range anywhere from an initial fee of $2500-$3600 for that you get some type of package which includes MD visits and typically nutritional services.  Do not pay any fees like this up front.  It’s a free market economy in my opinion so feel free to negotiate any proposed fee or payment plan. 

My hippie doc is closing his practice so I’ve been on the hunt for a new one. 

I’ve had two decline to treat me when they here I have a rare form of lung cancer.  What a bunch of whimps! 

Many years ago my husband had a long list of strange symptoms- it took four doctors before we hit the eureka button.  

Good luck and keep at it.  

Michelle

[CM_in_PNW]

26 minutes ago, Rower Michelle said:

Finding a good Integrative Medicine Doc who is not a quack isn’t easy.  I would look up Andrew Weil MD Center for Integrative Medicine in Arizona. On the web site there is a zip code search tool that can be useful. Dr Weil is a well respected international expert.  

There is also a board certification for Integrative Medicine now so calling the State Medical Board might be an option.  

The PCPs aren’t really tuned into this scene but the nurses are a good place to start asking for potential referrals.  

Sometimes IM docs will accept insurance, most however do not. The going rate is about $300 an hour.  On occasion you will see some type of “membership fee” costs range anywhere from an initial fee of $2500-$3600 for that you get some type of package which includes MD visits and typically nutritional services.  Do not pay any fees like this up front.  It’s a free market economy in my opinion so feel free to negotiate any proposed fee or payment plan. 

My hippie doc is closing his practice so I’ve been on the hunt for a new one. 

I’ve had two decline to treat me when they here I have a rare form of lung cancer.  What a bunch of whimps! 

Many years ago my husband had a long list of strange symptoms- it took four doctors before we hit the eureka button.  

Good luck and keep at it.  

Michelle

I've only scratched the surface here when researching Lyme's, but you describe very well what I briefly encountered. I'll keep looking.

Thanks so much!

[LouT]

Hi, I realize I'm jumping in on this pretty late in the chain, but I see that you've received some good advice so far.  Yes, people do tend to develop nodules for any number of reasons.  It could be that it formed as a result of inflammation, infection or some other irritation.  Some of these nodules exist without further growth and never cause symptoms.  BTW, 60% of nodules detected are NOT cancerous.

But, if they do find that the nodule grows or changes character in some other way they could always do a PET Scan to see if it "lights up" in reaction to the radioactive sugar that is administered.  If not and there is no growth or change to the nodule a doctor will continue to take a watch and see approach.  If after two years there is no change then there is no further monitoring of that particular nodule.

So, in agreement with others here, you do not seem to show symptomatology for that nodule to be positive for cancer.  But, I also agree that I would not wait for one year for a follow-up scan.  Six months would be more reasonable for this type of nodule.  

Having said all of the above you do seem to have some physical complaints that (as of this moment) do not seem to be connected to the nodule.  I would be aggressive to determine the reason for the night sweats, digestions issues and such.  At the end of the day they could be caused by a wide range of things from anxiety to some sort of inflammatory illness.  So please be assertive and get the answers that will put your mind at ease regarding the cause of the symptoms and a certainty that the nodule they found is not a cancer problem.

In the meantime, take some time to relax; ensure that you are eating healthy, getting enough sleep, exercising regularly and setting aside daily time for contemplation (meditation, prayer or whatever you prefer).  Keeping yourself basically healthy can only help you in going through the tasks of resolving the issues you've described.

Please focus on your well-being and keep us updated.

Lou

[CM_in_PNW]

On 6/13/2019 at 6:05 PM, LouT said:

Hi, I realize I'm jumping in on this pretty late in the chain, but I see that you've received some good advice so far.  Yes, people do tend to develop nodules for any number of reasons.  It could be that it formed as a result of inflammation, infection or some other irritation.  Some of these nodules exist without further growth and never cause symptoms.  BTW, 60% of nodules detected are NOT cancerous.

But, if they do find that the nodule grows or changes character in some other way they could always do a PET Scan to see if it "lights up" in reaction to the radioactive sugar that is administered.  If not and there is no growth or change to the nodule a doctor will continue to take a watch and see approach.  If after two years there is no change then there is no further monitoring of that particular nodule.

So, in agreement with others here, you do not seem to show symptomatology for that nodule to be positive for cancer.  But, I also agree that I would not wait for one year for a follow-up scan.  Six months would be more reasonable for this type of nodule.  

Having said all of the above you do seem to have some physical complaints that (as of this moment) do not seem to be connected to the nodule.  I would be aggressive to determine the reason for the night sweats, digestions issues and such.  At the end of the day they could be caused by a wide range of things from anxiety to some sort of inflammatory illness.  So please be assertive and get the answers that will put your mind at ease regarding the cause of the symptoms and a certainty that the nodule they found is not a cancer problem.

In the meantime, take some time to relax; ensure that you are eating healthy, getting enough sleep, exercising regularly and setting aside daily time for contemplation (meditation, prayer or whatever you prefer).  Keeping yourself basically healthy can only help you in going through the tasks of resolving the issues you've described.

Please focus on your well-being and keep us updated.

Lou

Thanks so much Lou! 

While general consensus seems that what has been found in the lungs is likely not what is causing my symptoms, i found it interesting that the chest pains I have correspond quite closely to what was described in CT. 

My appointment  with pulmonologist seemed to indicate an obstruction in the upper airway, so I've been referred me to Otolaryngology for further review.