Nodule watcher.....newbie

[bbear]

Hi all--I have been "lurking" for a couple of weeks and thought I'd come out! (thanks nikkala for telling me how to post!) Long story short, somewhat--my father died from lc in 1986, my brother, 42, was diagnosed with Stage III lung cancer 6 weeks ago. (I am 37 mom of 2) I since then have gone to my dr, expressed my concern about family hx, smoking, etc--she sends me for x ray--it comes up clean. I get on internet and it says x ray no good--do spiral ct scan--which I do (pay for out of pocket, since ins won't cover, no symptoms, don't tell my doc cuz I don't have to can do it all on my own) Diagnostic imaging center says nothing about how common nodules are, guess who has nodules??? Me and I freak out. My dr gets report and says that I have two nodules, one on each lung upper lobe and she is not concerned at all, radiologist was not concerned either said come back in 4-6 mos and just check them. I continue to freak out and another dr in my gp's same office looks at report and said she doesn't feel that I have anything to worry about, still I am a mess and she sends me to go get another CT scan this time with contrast--radiologist did not do it--said they were small (less than 1 cm)and he was not worried about them either--per radiologist tech (yeah, I know)--if a radiologist saw something alarming they would send me straight to pulmonary dr--they would cover their a## beings how I was there for early lung cancer detection--ok here's where the neurotic part comes in--a few of us nodule watchers on here may be able to relate....I called my brother's oncologist to get his opinion--First for this cancer center I'm sure that I want to make an appt with an oncologist and I don't even know if I have cancer...Well, this dr looks at the report and says he is not worried about it (fyi cool guy) Even if the report from the tech says indeterminate is there characteristics of nodules that make them lean more towards the benign side (besides age of patient)and make them wait and watch--Also--my doc said that it was almost better that there was two of them--we know that it has not metastisized from anywhere--so guess what guys--I am looking for peace of mind--I feel like I already know some of you from reading your posts and I have told my brother about it--lots of help and support here......

[nikkala]

Hi Bbear and welcome to the nodule watchers club. As you saw from my pm I understand what you are going thru and others here do also. At the least we can help support you with you Brothers diagnosis. Hopefully he will find some support here as well. Hope to hear more from you.

[bbear]

curious, why do they biopsy or remove some 7mm nodules and others they watch and wait? Thank you for the thoughts on my brother....I have to tell you after losing my father, we never saw that one coming with my brother.....

[Fred]

Hi bbear,

As you can see from by profile I have nodules in both lungs and have been a nodule watcher for 1 1/2 years.

You mentioned your nodules are less than 1 cm. Do you know how big they are or if they are calcified or noncalcified? I believe calcified nodules lean toward the benign. The longer nodules remain the same the better. A CT scan every 3-6 months seems to be the normal process. I'm not sure if it is better to have more than one nodule, as you were told, so can't comment on that. When nodules are small they prefer to do a wait and watch procedure.

I'm sure other nodule watchers on this site can be more helpful to you.

Fred

[bbear]

Hi Fred--

I've been reading your posts for a couple of weeks--nice to meet you! Not sure on the calcification--indeterminate was the only thing that I read (honestly, I was too stinking scared to look at the report because I like to self diagnose.....)--I did feel better after my brother's oncologist looked at the report and wasn't concerned but......

Ps--Is this on the right board or should I be elsewhere?

[marym]

There are many people with nodules. Normally, they watch them and do a follow up CT every 3 to 6 months. I think I read somewhere that 90% of nodules of less than 1cm are benign.

Getting the initial CY will allow follow up CT's where your insurance will cover cost.

Mary

[blaze100]

Hi Bbear, Well I think a PET would pretty much show if these spots are hot or not. But PETs are expensive and not sure about your insurance paying. If you felt really tired with chills, shortness of breath, and a cough to go with those spots it might be different right?

It looks like you've done a good job double checking with lots of docs. If it were me, I would be very worried too. I'm guessing they think you are too young for lc (not true). My tumor was 12 cm on scan and docs were reluctant to believe it was lc because I was too young and never smoked. So they don't know all.

Have you considered making appointment to see a pulmonary specialist and have him read the scans?

Barb

[bbear]

I did have an appt with a pulmonary dr but cancelled it after I talked to my brother's oncologist that specializes in lc...He knew the family history and wasn't concerned about them but can't help but worry....thanks so much for everyone's time...

[Fred]

You can post in any forum. We have moderators that keep check of each forum and would guide you if necessary.

I understand being scared to death about having nodules. I was scared but I have learned to not let these nodules control my life.

Fred

[bbear]

I know, my mom said she didn't think four different drs would tell me not to worry about them if there was something to worry about--thanks for your help fred

[P.S. I Love You]

Hi, Bbear-

Your proactivity has made you more aware of the state of your health than the average person. As the docs say nothing to worry about, I’d celebrate.

[gail]

If it helps, my initial dx 5 1/2 years ago showed 2 nodules, with the biggest one (1cm) being removed and found malignant. The other nodule has been there, off and on, since, depending on how the CT slices.

Four doctors are a good survey, expecially the one who knows your history. Good luck

gail

[Don M]

Hi: you are experiencing the downside of using spiral ct scans for early detection, namely, finding nodules that may very well be nothing to worry about , but worrying anyway.

Now that you and your docs know that something is there, I think your insurance would cover any future ct scans. I have had several nodules in my right and only lung that have been doing nothing for 3 years now. The radiologists don't remark on them any more.

Just get the scans and watch. Unfortunately, the only way early detection can pay off is if they actually find lung cancer. Then the cure rate is over 90%.

I hope you find a way to deal with the anxitey.

don M

[snow]

HI....my hubby and I went for ct scans almost one year ago...He is smoker..I never smoked.My Dad has lung cancer,and my grandmother died from it.We BOTH ended up with a nodule on the upper right apex..what are the odds of that!!!Mine was 6.5mm..my hubbies was 6mm.Many things go into factoring if they could be malignant...or not.The persons age,smoking history,if the nodule is smooth or spiculated,if it is calcified or noncalcified,and the size.The smaller the nodule..the less likely it is to be cancer.That being said,the only true way to know for sure is to biopsy...but the small ones they usually wait and watch.CT scan at three months,six months.and then every year for two years.If they dont change..they just keep checking them.If they change or get bigger...then they need to biopsy.Pet scans can help...my hubby had one but they are not great for diagnosing small nodules.SO...all that and they usually just watch them...unless they are big...look a funny shape...or you are really high risk...or a combo of all.Or if you have a prior cancer history.I know I am rambling...but I did so much research on these suckers..I could right a book LOL LOL. Nevertheless, it is a worry and everytime I rescan I am a nervous wreck...my hubby and I go in Feb. Yours is REALLY small and that is good..could have been there your whole life...the new ct scans are very sensitive...and tend to pick up the smallest things.I still think though,if it save one life by detecting an early lung cancer it is worth it. Debbie

[Dazy]

Hi there, bbear!

Welcome to "Nodule Watch"... My good buddy, Deb, (aka, Snow) has already given you the scoop on the nodules - and she sure has done her homework! (Luv ya Deb! )

I'm sorry to hear how this has affected your life, and that of your family's. It BITES! I will include your brother in my prayers - May he find a full recovery!

The fear you are experiencing sounds all too familiar. I think Don hit it right on the head - that is the downside of CT scanning. We've been watching mine for almost 2 years now - and while it gets a little easier, I still freak out EVERY time I go...

Whatever it turns out to be (and it may be nothing!!! Recent Mayo Clinic studies show that as many as 90% of subcentimeter nodules are benign!!!) you and your docs will be keeping a good eye on it. Just keep up with your scans - and yes, insurance will cover them now, as that is the standard protocol for "nodule watch". We've had some people come here with nodules, and have had them disappear when they go back for follow-up 3 months later!

In the meantime, we will hold your hand, and help chase the scaries away when they start getting to you. Hang in there, okay?

Yours in HOPE!! (and watch...)

Stacey

P.S. GOOD LUCK, Debbie & Hubby!!!!