assessing risk and appropriate follow up - 1257028

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catnapt
assessing risk and appropriate follow up - 1257028

I had an abdominal and pelvic CT for right abdominal pain (w/ a history of elevated liver enzymes; AST and ALT have returned to normal, ALP is now slightly elevated)

Besides evidence of fatty liver, and some thickening of the 2nd and 3rd portion of the duodenum for which I've been referred to a gastroenterologist, a 4.5mm nodule was "found" in the lower left lung base

Chest CT shows NO nodule in the left lung but a smaller (3X3 mm) nodule in the right lung.

I am 57 years old, I lived with heavy smokers for 18 years, I have an overlapping history of smoking from age 15 to 30 (with probably ~ 12pack years)

My father had squamous lung cancer and metastatic carcinoid cancer (intestines primarily, mets to bone) He passed away 20 yrs ago from the carcinoid not the lung cancer.

My mother had squamous lung cancer and BAC lung cancer, apparently the more aggressive type. She had two lung surgeries but then the BAC came back and they wouldn't do more surgery. She passed away 9 yrs ago.

I can have a repeat CT scan in 3 mos, 6 mos or 12mos- radiologist recommended one in 3 mos, my PCP said 6 mos, what I've been able to find on the internet says 12 mos is fine.

Given the above information, & the most current research and guidelines, which would be the better choice?

My insurance is going to be changing soon, and getting expensive diagnostics covered will become a lot more difficult.

as terrified as I am that this tiny thing could be lung cancer, it is very small.
That seems like a very good thing to me.

thank you for your time
althea

Dr West
Reply To: assessing risk and appropriate follow up

Althea,

There isn't enough evidence here to say that 3 vs. 6 months is clearly better -- hence the difference in recommendations. The key is to follow up with another scan several months from now, see if there's any interval progression, and escalate the workup with a biopsy if there is. Otherwise, continued surveillance with imaging is appropriate, and with longer follow-up, typically out to about two years, we become increasingly convinced that a stable tiny nodule is benign.

I'll refer you to this link for more discussion of how to follow incidentally discovered or screening-detected lung nodules, which should also reassure you that they are very common and very often benign:

http://cancergrace.org/lung/2011/12/07/yankelevitz-lung-nodules-podcast/

Good luck.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Medical Oncologist
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

catnapt
Reply To: assessing risk and appropriate follow up

Thank you so much for your prompt reply and links, Dr West. I had read the Fleischner Society recommendations and that is where I got the 12 mos for the follow up-
it's says that for a nodule of less than or equal to 4mm, in a high risk patient, the recommendation is for another scan at 12 mos.- not 3 or 6 mos.

The recommendations to have a scan sooner than this have me imaging that they (the radiologist and my PCP) know something, or have seen something, that they are not telling me, and that is why they are saying to have it done sooner than the 12 mos.

Or are they just being extremely conservative?

What I didn't mention before is that I witnessed what my parents (and my step father as well, he had NSCLC too!) went thru with the surgeries, and it was awful. My father said he wished he'd never had it done, my mother almost died from complications each time. It was a traumatic thing to witness, I can only imagine what it was like for them.
I decided right then and there that if I were unlucky enough to be diagnosed with lung cancer, I would not have any surgery. It didn't seem to be worth it.

Now with the improvement of imaging techniques, everything has changed. Or has it?

Does finding and treating lung cancer when it's very very tiny really make any difference in survival times? or is the outcome still unchanged, a few years or so before it takes it your life, and not especially good years either?

thanks
althea

JimC
Reply To: assessing risk and appropriate follow up

Hi althea,

I very much doubt that your doctors are not telling you something; just the legal implications of that would be a huge deterrent to doing so. As you can see from Dr. West's reply, a follow up scan in a few months is not at all unusual, so I wouldn't let that be a source of worry.

Improvement in imaging techniques is a double-edged sword - smaller nodules may be imaged, but as Dr. West said most small nodules are benign, so finding them can cause unnecessary worry as well as the discomfort and expense of diagnostic procedures. On the other hand, it is always best to discover (and surgically remove, if possible) lung cancer as early as possible, as there is a huge difference in survival rates from early stage to advanced stage. You can see survival rates by stage here: http://cancergrace.org/lung/files/2010/04/nsclc-survival-by-stage.jpg

Hoping that your follow-up scans are good, and that none of this ever matters to you.

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

Dr West
Reply To: assessing risk and appropriate follow up

I agree with Jim. It's very likely that the doctors were just erring on the side of being conservative, which is an easy default in a litiginous environment: you're overwhelmingly more likely to be sued for waiting too long for a follow-up scan than for getting a scan too early.

And I also agree that while surgery isn't trivial, I wouldn't hesitate to recommend if for someone with an early stage lung cancer, where it's highly likely to be cured. And the overwhelming majority of patients who undergo resection by a well-trained thoracic surgeon will get through it and generally be happy they did the surgery. People can vary though, and surgical skill also varies incredibly by the experience of the surgeon. The sad fact is that most lung cancer surgery in the US is done by surgeons who are not specifically trained in lung surgery, and their outcomes are very clearly worse than those of the best trained thoracic surgeons.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Medical Oncologist
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

catnapt
Reply To: assessing risk and appropriate follow up

Thank you both for your responses. I spoke with my doctor's nurse and they are leaving it up to me to decide if I want the repeat scan in 3 mos, 6 mos or even 12 mos.

I think I'll just wait as long as my anxiety level will allow.

Its' very disconcerting to hear that the outcome of surgery depends so heavily on the training of the surgeon. If I need surgery, with my insurance, my options are severely limited, and I am more than likely to be stuck with the surgeon with the least training or experience.

So while no doctor has to be concerned about me suing them, that's just not something that ever even crosses my mind,
I am wondering now if I should be more aggressive with follow up?

I wish I had one of those cancer sniffing dogs....
My doctor laughed when I mentioned that but I am sure I've read that there are dogs who have been trained to sniff out lung cancer.
Seems like a superior non invasive way to detect cancer, but perhaps they couldn't find the cancer when it was still small....

I honestly don't know how anyone handles the diagnosis of lung cancer, just the idea of it makes me weak in the knees. I don't have the same reaction to other types of cancer- I had breast cancer "scare" that didn't phase me at all.

I don't personally know of anyone who lived more than a few years past diagnosis, so it's hard for me to believe that it's anything but utterly hopeless.

Dr West
Reply To: assessing risk and appropriate follow up

It's absolutely not hopeless, and cure rates are pretty high when it's detected relatively early. It also DOES matter to have surgery by the best trained person you have available to you. I would hope that there's a specialty trained thoracic surgeon if the need arises: that's an appropriate standard of care, and I don't think an insurer would be able to enforce a system in which a well qualified specialist isn't made available in a circumstance like an early stage lung cancer. My main point is that it's usually worth driving a bit further and/or going to some effort to ensure that a person who needs lung cancer surgery sees the best qualified person rather than the closest person or the first person with availability who says that they do lung cancer surgery, because the quality of that lung cancer surgery varies greatly from one surgeon to another.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Medical Oncologist
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

catnapt
Reply To: assessing risk and appropriate follow up

Regarding the follow up CT scan- It has now been approx one year since that tiny SPN was found incidentally.

yesterday I was carrying a lot of things upstairs (I'm on the 3rd floor) and heard a squeaking noise when I exhaled. I was breathing thru my mouth and frankly the sound was so odd I went from room to room and mirror to mirror to confirm that it was indeed coming from me when I exhaled- with my mouth open.
I have a partly deviated septum so any wheezing I hear when breathing has always been attributed to that.

anyway, I freaked and had an anxiety attack- called the doctor and requested the follow up on the nodule.
the nurse called back and said the doc was just going to follow it "clinically".

I had been thinking I'd wait another 6 mos, but never considered NOT having at least one more CT scan to be sure this thing is stable.

so I did some more reading/googling and did find one radiology site that said that out of several thousand SPN of 3mm or less, not one single one turned out to be cancer.

So- the chances of it being anything to worry about are truly as close to zero as you can get, right?

I am not sure why my doctor switched from wanting to do the follow up at 3 or 6 mos to not wanting to do one at all,
have the guidelines changed?
perhaps it's got something to do with my new insurance, maybe they insist that the nodule be larger to warrant such an expensive test.

does anyone know if the guidelines have changed?

I'm so torn right now. I appreciate my doctor not wanting me to be worried about this, but on the other hand, I think without *any* follow up, I am likely to have anxiety attacks about the possibility, regardless of how remote it might be.

ack! I wish I'd never had the first scan!

catdander
Reply To: assessing risk and appropriate follow up

Of course we can't tell you to not worry and we can't say it's 100% not cancer but the odds a pretty darn high that a 4mm lung nodule is benign.

Your doctor wants to follow it clinically which means letting them know of any symptoms you're having so it's not out of line to let the doc know of your squeaking breathing and panic attacks, those are def clinical issues. Note the breathing can have many causes.

Our focus is on diagnosed cancer (which is the focus of oncology) so our oncology faculty can't give anymore details than already have been given. You might want to look through our "workup and staging of lung cancer" for many more questions like yours for more on whether your doctor is working within standards of care. http://cancergrace.org/forum/lung-thoracic-cancer/work-up-staging-of-lun...

All best,
Janine

JimC
Reply To: assessing risk and appropriate follow up

Hi catnapt,

As Janine said, we can't tell you whether to worry or what to do. I don't think it has anything to do with changing guidelines, but perhaps your message to the doctor did not get through exactly as you intended. An appointment to discuss your symptoms and options would certainly be a reasonable possibility.

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

Dr West
Reply To: assessing risk and appropriate follow up

The guidelines have not changed to my knowledge. Because we cannot explain what you doctor was thinking but your doctor can, I would suggest directing your question to him. However, obviously this request for less intensive follow-up suggests a diminished concern for cancer, so I would hope you might be reassured.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Medical Oncologist
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

catnapt
Reply To: assessing risk and appropriate follow up

I called my doctor, it's not that the doctor wants to follow it clinically, it's the new insurance (it's like an HMO but they call it something different now, CMO I think?)
they denied it
along with two other requests for treatment of conditions I've had for decades, now they want me to go thru the entire process of trying all the things that didn't work before, all over again.

I hope I have no reason to even join this group and wish I you all the best