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Posted

I'm another one who may not need to be here, but I feel better just having read some of the posts here, although still am worried. Up until a few weeks ago, I was (as far as I could tell) perfectly healthy. I'm 43 and a smoker (although smoking much less than I did a few weeks ago).

I had a cardiac CT (which was fine) which also found a 4x5 mm nodule on my lung and large liver lesion - no further details. My doctor's office called and told me there was something on my lung and liver and I needed to go back right away for chest and abdominal CTs.

The abdominal CT report said the liver lesion "may represent a hemangioma" and mesenteric lymph nodes are mildly enlarged. The chest CT found one 6 mm nodule, one 7 mm "vague nodule", and on 16 x 13 mm "vague small area of infiltrate" - no hilar or mediastinal adenopathy. There is no further detail and the recommendation is follow up in 6 months. Since I was unable to get my doctor to answer any of my questions, I made an appointment with a pulmonologist who wants to see the actual films before she can tell me anything, but also suggested a PET scan. I almost get the impression that she suggested the PET scan because I'm worried, not because she's worried (I asked whether she was okay with waiting the week or so for the films to be mailed instead of me going and getting them and she said she was fine with waiting longer than that, but if I was worried, we should follow up faster).

So...now I'm wondering if we're pushing ahead because I'm panicking or because the doctor feels it's urgent. If it really is appropriate to wait 6 months, I'll learn to handle it - I just haven't gotten a doctor to tell me what they're thinking or why that's the best option. (By the way, I do live in an area that sees a lot of histoplasmosis, although neither doctor has actually mentioned that to me - so either that's a good thing or I'm just finding ways to falsely reassure myself.)

Sorry for the long post, but as you can probably tell, I've been really worried the last few weeks and it seemed like a lot of you here have been through a lot of this nodule scare stuff.

Posted

Lots of nodule watchers here, FF11, my own DH being one of them. Protocol for mm size nodules for my husband was at 3 months, 6 months then a year. We are coming up on the end of 2 years and at that time these nodules will be watched no longer since they have remained stable. However, we think we will insist on being checked at least 2 more years due to a particular type of lung cancer that is very slow growing.

So I disagree with starting out waiting 6 months. As to the PET, they are pretty unreliable for mm size nodules. I am surprised the pulmonologist recommended it unless she thinks it may be beneficfial for that one that appears a bit larger.

Try to take it easy right now. There are MANY here who have been waiting and watching nodules for years with no progression. It is good to keep an eye on them right now though. Lots of luck to you.

Kasey

Posted

Thanks, Kasey. I'm starting to calm down a little now over the nodule(s), but stressed over the difficulty I'm having getting doctors to listen/talk to me! And this is just over nodules (so far, anyway).

I called back today and told them I wanted to wait till she got the CT films and then schedule the PET scan if she felt it was necessary - the nurse told me the doctor wanted to do a PET scan if she saw any nodule on the films (although if the films didn't arrive for some reason, they wouldn't do the PET till they did arrive) and the only reason we wouldn't do it next week is if she didn't see a nodule. She said then if anything lights up on the PET, they'd do a biopsy. I'm not sure I understand this either, but will wait to see what she thinks of the films. She also seemed concerned about the mildly enlarged lymph nodes on the abdominal CT, although the original doctor felt that wasn't anything too alarming.

Seems like the original doctor and radiologist may have been too laid back and now this doctor is going to the other extreme! Aside from the fear, it's very frustrating to call and say I don't want to do the PET until I know what she sees on the CT and be told "We're doing it if she sees a nodule" - starting to feel as if I get no say in anything.

Posted

I'm a "nodule watcher" myself. :roll: Yup...it can be a bit scary in the beginning, and establishing effective communication with a doc you are comfortable with can be one of the most frustrating, although important, steps you take. It sounds like a reasonable approach, 'tho I, like Kasey, think a 3 month follow-up IF your PET is negative is in order. PET/CT would be useless for your smaller nodules, but it could detect uptake in the larger nodule. And even if PET did show uptake, it very well COULD be from histo. It is pretty standard to do a biopsy if PET lights up - but even then, it could be things other than cancer (histoplasmosis, coccidioidomycosis, TB, infection, inflammation, and more...)

I'll be praying for a good outcome! In the meantime, pull up a chair, hang out awhile, and let us help you deal with "scaries" when they hit. :shock: Your gonna be fine! :wink: (put down those smokes, though, okay?? :wink: )

Yours in HOPE! (& Watch)

Stacey

Posted

I have what appeared to be liver lesions or hemangiomas show up in my 2003 scans. They have not changed and are not even remarked on any more. I have had enlarged mediastinal nodes remarked on several times, but no longer because they don't change.

Don M

Posted

Hi-

My advice to you is please don't wait 6 months. Hopefully it is absolutely nothing and getting it checked out now will give you peace of mind. I was told the same thing - to wait 6 months and follow up when some nodules were found in my right lung. Being the type of person I am I said "no way can I wait" and I was referred to a thoracic surgeon and he sent me for a full lung CT scan and unfortuantely they found something in my left upper lobe, not even in the right lung where the nodules were seen. It was malignant, I had surgery and chemo and am doing okay.

So, PLEASE, don't wait. I would suggest calling a thoracic surgeon and go from there. Again, hopefully it's nothing but you need to find out. Much good luck.

Posted

Thanks again, everyone who's responded. I was out of town from early Thursday till today, but checked my messages at home late Friday and had a message to call the pulmonologist's office. Of course, it was too late to call till Monday. I've been telling myself she can't have found anything worse looking at the CT films - I'm already scheduled for the PET on Tuesday and an appointment with the doctor on Wednesday, so surely she wouldn't need to speak with me before that if there was anything more suspicious to her. (I'm kind of hoping that she got the films and thought it was less urgent than she thought!)

I guess I'll just have to wait till tomorrow to find out though...

Posted

Now this is a mystery. As usual we have to wait around to get the word from the docs. Standard procedure.

Maybe they just wanted some insurance info. If you get a call from the doc personally on the phone, now that's the time to be afraid. :)

Keep us posted FF11. Prayers for good PET results.

Barb

Posted

No, no personal call from the doctor - it was one of the nurses. They have my insurance info, so I'm thinking it has to have something to do with them having gotten the CT films.

I just keep telling myself even if the doctor saw something worse than the what the radiologist saw, there's no reason to call me when the PET is already scheduled in 2 days!

Posted

Just a quick update - I called and the nurse said the pulmonologist has looked at the CT films and there are 3 small nodules. They look to her like they're probably scar tissue (she can't be sure, of course, but that's what she thinks is likely) :) :)

She wants to go ahead with the PET this week, in the hopes that we can be even more confident that this is not cancer, so I will have that done, but right now I finally have reason to be optimistic - as long as there are no unpleasant surprises on the PET. I will check back in after the PET results, but again want to thank everyone here for their responses.

Posted

HI....my hubby and I also watching...my husband is smoker,,your age and has 8mm nodule.He also had pet scan which showed no uptake...but sometimes small nodules do not.The protocol is rescan 3,6,12 months..then in a year although my doc wants one 8 months after the yearly one.They are watched for two years...although slow growing cancers could grow in five years...so I will probably want ours checked even after two years. Like everyone says it is a watch and wait thing....and very un nerving. The longer these nodules stay stable the better...and the more it favors being benign.If the pet scan lights up they probably will want a biopsy...or if it grows at all...that is what they told my hubby. CT scans are very sensitive and pick up every little thing....but I still think if it saves one persons life by finding a small cancer it is worth it. Good luck and we are all here for you!!! Debbie

Posted

Another quick update - the PET got postponed till next week because the insurance preapproval didn't come through until later Tuesday (and they only do PETs one day a week). No one seems to feel there's any problem waiting a week or so now that they've seen the CT films, so again, I'm taking that as a good sign and will have the PET next week.

I feel so much better just hearing she thinks it may be something benign, but I will follow up and should know more by this time next week.

Posted

Got the PET scan results today - nothing lit up :)

Now the pulmonologist (who I think I do like after all!) says we'll go with CTs every 6 months for two years. She also says it really, really doesn't look like anything to worry about, but of course, we'll follow up to be sure.

So...thank you again, everyone, for the input and support. I will probably look in from time to time because now I kinda care how you're all doing (:)), but I will probably not be hanging around here reading everyone's posts daily, which I've been doing - I think now that I have been given more time to be healthy and live my life, I need to focus on doing that (I hope that makes sense).

If I don't post again soon, I wish every one of you a day like my day today - a doctor walking in with good test results.

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