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How aggressive should I be?


Sherry

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I have just come from the radiologist where I had taken part in an early lung cancer screening study (Cornell).

I knew something was up when the technician didn't want to look at me after the scan. There are 4 nodules, 2 tiny and calcified, but one subpleural 4 mm (upper right lobe) and one periferal 5 mm upper left lobe.

The radiologist report is recommending rescanning in 3 months, and again and again for up to 2 years if I'm lucky enough for their not to be growth. There is good reason for the docs to be cautious. Their study is controversial and too many negative biopsies look bad for their stats.

I am, however, the single parent of a 2 year old and a 5 year old that I have given everything to conceive (7 rounds of uninsured in-vitro). I am 46 years old. I quit smoking 6 years ago after nearly 20 years and I am the child of 2 smokers so my exposure is high.

Dad and mom quit just before I did. Dad has early stage emphysemia and has had benign nodules that passed both petscan and biopsy. so far no cancer in my parents.

I think I want to go straight of usgn biopsy. I had about 140 needle sticks to grab eggs making my kids and as much as I realize that sticking my lungs is more severe than my ovaries -- the consequences of waiting seem worth the risks of not.

I am frustrated by teh fact that I had to fight my way into the study to being with . MY primary care physician essentially refused to support the idea a year ago. It's okay to scan me every year for breast cancer, but this where I'm high risk, he didn't agree with. Also I have fibrocystic breasts so I've had 10 needle biopsies in my life (all negative)

I don't get the point of waiting. Can anyone weigh in?

I am also very confused by the info out there. Is subpleural worse than any other kind of nodule? What are the odds that if they do find a malignancy they can do something? I keep tripping on reports that once diagnosed it doesn't matter how big or small, the danger is microscopic... If I do have cancer do I have any chance of raising my children?

my baby sister died this year ( a catastrophe during childbirth). I have little faith left.

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Sherry, I am so very sorry about your sister and for what you are going through right now. There will be many people on this site that know much more than I about what you are facing. I would like to say that I experienced that same disinterest from my PCP when I asked about a screening chest x-ray/CT....I was quite happy to pay for it myself, but she was reluctant to order one. I have read a great deal on this site about nodules needing to be a certain size to biopsy, so maybe someone will have more answers for you. In the meantime, I am praying for you and hoping for the best. Shelley

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Sherry,

First of all.....welcome to LCSC. If you use the Search option and look for nodules, you will find quite a number of follks here playing the 'wait and watch' game......my own dear husband being one of them.

There can be lots to say about them.......but for now I will say this ~~ calcified nodules are not to be concerned with.....almost absolute not cancer related. I really don't know about the subpleural thing, but I see all yours are only mm size. The protocol is to scan in 3 months again, then 6 months. then a year for up to 2 years. My husband has been watching 3 of them in 3 different lobes involving both lungs. He will be scanned in a week. If there has been no progression, he will be 'officially' discharged for it will be just shy of 2 years with no change.

What I want to stress NOW is don't get ahead of yourself. Take some deep breaths, look here for more nodule info from the many folks, and TRY to remain calm. Easier said than done, we all know.

Sorry about your sister. Many here have lots of info and support to offer. Let us know what you need.

Kasey

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you guys are great. I know this is early for me and so many of you and your family members are going through the real thing. It will forever amaze me that anyone has the energy to step in and hold my hand too!

I know from going through IVF that it is very easy to lose time to the wrong treatment and the wrong doctor. There I am the expert and I spend lots of time reaching in on my 2 favorite boards and cyber kidnapping .. making sure that women and couples get the right treatment .. in IVF at least, the state of the art is horribly uneven.

When it came to my sister we were told she would never wake up from her c-section -- she threw footlong clots into her heart and lungs and was severely hypoxic for 45 minutes. We found some amazing brain researchers and she did wake up, and managed to talk a little, knew we were there. 5 months later she died, but with her humanity intact. We don't know what killed her. Her brain was so broken it may have jsut forgotten how to beat her heart.

And so I am on a quest here.. to get the best information soonest. My first doctors said I'd never have kids. If I had listened, I'd never have had mine.

Now I need to be a troublemaker, seeker again. Roadmaps are so very welcome! I wish none of us were here. I wish I were here as the 5 year expert. I am, however, a mess after 5 days.

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Sherry,

The worst part is not knowing. Most of us become basket cases around test time while waiting for results.

Your nodules may be nothing....and then again, you may have caught something malignant extremely early. I would go outside the world of early screening for a second opinion - especially if you feel they are worried about false positives, etc. Find a neutral party to take your concerns to and see if someone will jump in for a piece of those whatevers in there to give them a name.

If I truly thought there was a cancer in there, I would not wait three months to see if it grew...I'd get the sucker ripped out small.

Seek a second opinion...set your mind at ease.

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Sherry,

Welcome to the boards and I am also so very sorry about your sister. People forget that, even in this day and age, terrible things can still happen at childbirth. ((Hugs))

As for your nodules, Kasey really summed things up nicely about calcified nodules. I often wonder about these nodules because my husband showed calcified nodules back in the mid-80's and no one ever thought to follow up on him. The docs hardly commented on them. Twenty years later he had roaring lung cancer all through both lungs. We often wonder if there was any correlation or if the nodules were a "predictor" of things to come. Maybe other "nodule watchers" can clue me in on this.

One thing we DO know is we wish things had been watched and followed-up with routine screenings, etc. Because he quit smoking in 1981, no one bothered to x-ray his lungs ever again. Hindsight is 20-20.

With you having a mix of nodules, I'd get another opinion & push hard. You are already a strong advocate in other areas and know the score with how the medical community operates. Go with your gut. Better safe than sorry.

Good luck and best wishes,

Welthy

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Sherry,

Welcome to the site. With any disease or life in general it is important to keep the stress level down. That is why I keep saying stay positive. Now many people have nodules in their lungs and most of them are non-cancerous. So lets take the position that yours are too. We do have to be concerned and would like to find out for sure. What kind of a screening did they do? Have you had a CT scan or a PET scan or what?

I think if I were in your position I would seek out the best oncologist in town and consult with him. If he orders a CT scan, PET scan or both then your insurance may cover it. A PET scan will show if there is any uptake in the nodule. Which means cell activity if there is no uptake then it is more likely to be non cancerous. If there is uptake then they would want to do a biopsy when they can. Ultrasonically Guided Needle Biopsy of Small Subpleural nodules can be done. I understand the wait and see game can be nerve racking if you think about it. Having your own oncologist that is not associated with the study will give you some peace of mind. Right now the chances of you not having cancer are greater than having cancer.

If you want to be proactive you could check your diet and supplements. I actually started taking some cancer fighting supplements before I was diagnosed with cancer, because I had family history of lung cancer. Many of the things I take now are for fighting cancer, preventing cancer or for reducing side effects. Many doctors will say that these will make no difference, but they do not know for sure. I have been under treatment for 21 months with chemo and Tarceva and I have not had a bad day yet. It may be all in my head, but it makes my life better. If you have any questions just ask. You should have an attitude that you don’t have cancer and everything you do is precautionary. If for some remote reason they found cancer, I would say that you have the best chance of living a ripe old age, because you will have found it at the very earliest.

Stay positive, :)

Ernie

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I have a consult with a thorasic surgeon mainly because the doc who delivered my boys knows him and trusts him and sent me in that direction. 4/6.

I had a spiral ct as part of claudia henchke's study.

I just found out my dad, who is riddled with nodules and a mass (after 50 years of smoking) was sent home after a thankfully negative pet and needle biopsy with NO orders to follow up and watch!!! I am of course relieved that so far so good, but i am furious for him.

I'd love to hear about what you are taking!! it cna't hurt ... I do high dose omega three btw. And is anyone out there in NY .. if an oncologist is the consult I should be doing, I'd love some names. Thanks!

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  • 4 weeks later...

Sherry,

I hope that by now you've learned some more, and I especially hope that it's not as dire as you had feared at the start. If I can be of any help, I treat lots of lung cancer as my primary professional interest, and I'll try to follow up if you post back here, or if you want to check out some lung cancer information I've written specifically to be accessible for patients and families, it's at www.OncTalk.com (probably easiest to see as divided by subject in the subject archives). The site also has a Q&A section that I attend to. Good luck.

-Dr. West

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