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Sorry...this is really long ...


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This may actually belong on the Nodule thread. Dunno. Feel free to move it if you need to... :wink:

Okay…this is really long, but I think I’m going to need some assistance in processing, so here goes…

Last two scans (Nov./Feb.) showed the development of what looks to be a couple of new tiny nodules in the lower R lobe, and now another in the L upper lobe. The pulmonologist says maybe they’ve been there all along, and just were missed between slices on the prior scans. Seems to me, that when a radiologist is performing a spiral CT at a 5mm collimation, they would still be able to go back through the prior studies on ‘puter, and reconstruct the images to confirm that they are indeed new findings, and not simply something “missed” on prior studies. The so called “dominant” lobulated nodule has only changed by a mm over the last year – this is somewhat encouraging, but then again, that is dampened by the development of these new ones. Originally, I only had this in the LLL, RUL, and RML. Now all lobes are involved. It seems we’ve ruled out all differentials, except neoplasm, and granuloma (probably adeno/BAC, or Valley Fever.) After having several negative VF tests, they will no longer test me for it. But I know it can still be present with a neg. test in those who never develop an immune response.

Deep in my gut, I feel it probably is LC, given the extensive family history of adeno, and adeno w/ BAC. I feel that, like Fay A. in her early days, the doctors are simply “watching it slowly grow, and watching new ones form”. I am so frustrated by egotistical/ever omnipotent docs who cannot take the time to simply listen, and educate those patients who desire/NEED to learn… I have spent hours researching, and compiling information. I’ve pulled several trusted medical citations, and opinions on all the salient points in my/our decision pathways, so far, but at my last appointment, I could not even get the pulmonologist to simply review the few reports, studies, citations, etc. I had brought to discuss with him. He asked “what do you want to do?” I answered that I wanted to try to get at least a piece of what was in the LLL, being that it is 1.1 cm, while it may not be doable through a FNAB, it could be done through a VATS. He said “no, it can’t be done…I tried to leave him the info I had brought, one of the cits being a report on the diagnostic success rate, specificity, etc. of VATS for nodules similar to my larger one. I even offered to leave the information I had brought (maybe an entire 10-15 pages, if that…) and make a follow-up appointment to give him time to address my concerns. He flat out refused to even consider what I had brought – stating “I am not going to read those.” When I told him how much it would put my mind at ease with our current “wait & watch” plan, if he would simply address these issues that confuse, and concern me, he again reiterated that he did not conduct his practice that way. He offered me the names of a couple other docs, I thanked him for his time and “opinion” and left. He was so short with me that I literally burst into tears of frustration, and I guess, a little shock (and I don’t usually cry easily, at least, not in public) and I found myself apologizing to HIM for inadvertently offending him, which he assured me I didn’t, but it didn’t feel that way.

So now I’m sitting here, a month later, with my last 2 CT scans sitting on top of my armoire, trying to get up the courage to find another #$mn pulmonologist to go to. And I’m so afraid of pissing off another doc (silly, huh???) but I’m not the type of patient to simply sit back, and let them make ALL the decisions. (Did that many moons ago, for two years – and suffered the consequences of a missed/delayed dx due to a docs incompetence (or perhaps, just human imperfection…???) At any rate, I question all things ‘til they make sense. That’s just how I am in ALL things – it only stands to reason I would handle illness the same way. Some patients are okay with being told what to do, and just trusting and doing it without questioning. I’m not.

I want to know why I am developing new nodules. I want to know why I have worsening asthma, or bronchitis, or whatever is making these continual, strange wheezes deep in my lungs (new doc wasn’t even sure I had asthma, but out of two visits, he NEVER had me blow a flowmeter, and didn’t listen to my lungs!) Why can’t I get through basic chores without losing my breath (I used to be able to hike like a mountain goat, up until a couple of years ago…) I want to know why I feel like poop, and have no energy. I want to know why I get this pain in my back/shoulder blade. Is it related? Or just the muscle and bone complaints of a misspent youth? I want to know why my serum calcium has been steadily increasing over the past year. It is now 10.2, borderline normal/abnormal, depending on which lab’s criteria is used. I want to know why I can’t just get some simple answers, and why they can’t seem to agree on anything. (I’ve had to see a couple of different docs due to changes in my insurance.) And I’m tired of feeling like a difficult patient simply for wanting those answers. (Anyone remember that Seinfeld episode with Elaine being branded “difficult” in her records, and she can’t even get rash ointment…? Aargh!!! That’s me…LOL!)

I guess I’d better just make another appointment with yet another pulmonologist – get back up on the horse, so to speak. I feel like I should “shop” docs ahead of time, to make sure we are compatible, as far as patient education, and involvement in decision making processes goes. But I’m afraid that may even further my rep. as “difficult”.


On another note, it has been about a year since I started “lurking” and visiting this site. So much in a year…lots of sadness, and loss. Lots of victories and successes. The losses of late have left me feeling overwhelmed. While I don’t post my thoughts on these subjects often, I want those touched by these losses to know I have cried with you. I just feel so inadequate at expressing those feelings…But my heart and prayers, and BEST thoughts have been with you. This site is such a place of beauty, and goodness, amidst all the pain. A place of truly quality, caring people. The I-net is a difficult place to find quality connections, these days. What an incredibly unique haven this place is…Thank you KatieB, and Rick, and ALL the others who make this place so very special. May God be with you, and bless you ALL!

Thanks, as always, for listening.


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Oh Stacey, we have chatted before and you know I am right there with you. Wish I could give you a great big hug. I have to say if anything changed with my nodules I would insist on finding someone to do a biopsy. Maybe you could see a thoracic surgeon? Do you need a referral? I went to one once and he said if i insisted he would biopsy but he preferred to wait. Just having the option helped calm me and I decided to wait. However I am right there with you on this taking over my life. I DO BELIEVE mine will develop into cancer. Maybe they won't and I'll be pleasantly surprised. But the emotional part is just as bad. It sounds crazy but at least with a diagnosis you can fight something but with wait and see there's nothing but time to drive us nuts.Well don't know if it makes any sense but I just want you to know you are NOT alone girl. Please keep me posted.

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Hi Stacey,

Would your insurance allow you to come to California for a 2nd or 3rd opinion? I can refer you to a really good Pulmonary doctor, graduate of John Hopkins and very very thorough and a straight shooter. No punches pulled, he is in Riverside, California. He is also a Primary, internal doctor.He is a get it done, tell all, answer questions kind of doctor..

Sending prayers and hugs,


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Ohhh What a bunch of HOG WASH! You may need to go SHOPPING! :D It's time for a NEW PULM DOC my DEAR! I think you should take maybe consider talking to Karen and maybe go to California for a 2nd opinion. Do you have a Cancer Center near you?

I might even think that would be worth a try.

Hang in there and start making some phone calls.


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I can only share the experience I have had with my husband and that is that my GUT FEELING has always been right on the money. We are the consumers and when we don't get what we want we go elsewhere. I can't tell you how many times I have said to a doctor, "that is not an acceptable answer". If you want the newly discovered nodules removed or biopsied I suggest that you take your scans directly to a lung surgeon (or whomever would actually perform the radiation or surgery) and have them evaluated. I have found that the only way to get an acceptable answer is to go to the source. Heck, if you couldn't find the dress you wanted at Macys you wouldn't hesitate to go to Bloomingdales. My advice is to hurry-up and go shopping!



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Hi Stacey, I agree, it's time to find another doctor. Have you ever consulted with an onc or a lung onc? You are lucky to have excellent medical facilities nearby. Your family doc should be able to make the referral. I don't understand why they don't or can't do a bronchoscopy? Barb

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Hi again Stacy: I think you should find a new doc too. If I had a nodule bigger than 1 cm I would be concerned. I don't know why your pulmomologist said that a vats biopsy could not be done on a nodule that size. They are done all the time. And the popping up of new stuff should be a concern too.

Sometimes I think that practioners are not up on the studies. They get set in their ways for their practice and that is it.

Don M

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I would probably see if I could get in to see a thoracic surgeon. He's the one that would do the VATs so I would think he would know if he could find and remove a nodule of that size. My family Dr sent me directly to the surgeon and I never saw a pulmonary Dr until after the biopsy results were back.

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You guys are ALL just so awesome!! Thanks for lifting me back up on the horse. :wink:

I've been feeling the same way...a thoracic surgeon would probably be the best "expert" to determine the feasability of VATS...just need a referral. The last pulmo. would not refer. However, I know I can get 'er done :roll: so to speak - I just need to learn how to jump through my new Insurance provider's hoops...

Karen ~ you are so sweet, God bless you! Yes, I do believe I could persuade my carrier (Pacificare) to allow me to see a Cali doc, with a little gentle arm twisting, perhaps) Most of my family resides in So. Cal. and I myself, moved from Moreno Valley some 8 years ago. I had been thinking along the same lines myself - perhaps trying City of Hope, or...? I'll PM you a little later, and thank you!

Blaze ~ (up there in ol' "Weed" Cali 8):wink: ) Bronch is out...has been from the beginning as all of my nodules are peripheral, and small. Bronchoscopy, I understand, is more effective, and diagnostic in central tumors, or larger peripheral tumors. Sometimes, if a nodule is close enough to a bronchus, I think it's doable, too, but, not my luck. Thanks for the thoughts.

I wish I could respond individually to each of you - I work from home, and I have a bubbly l'il 3 yr. old to chase, too :lol: Please know that you have ALL touched my heart, and lightened my load, today. I thank you from the bottom of my heart!

Yours in HOPE!


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