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DebM

CT Scan Results

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I've only posted here once before, but have spent hours reading posts and learning about lung cancer treatments.   I was diagnosed with 2B adenocarcinoma and had RLL robotic lobectomy in February.  The tumor was 5.5 cm.  The surgery appeared to be successful and the lymph nodes and margins were clear. 

The nodule was initially found in a routine x-ray in 2010.  It was negative on a PET scan and I had CT scans for the next 6 years.  It was eventually determined that it was probably scar tissue because the nodule hadn't changed at all in 6 years.  The pulmonary specialist told me that I didn't require any additional scans and that the nodule was "stable."  In 2019 my new PC ordered a follow up scan and in that four year period the tumor had doubled in size and lit up on the PET scan. 

After surgery, I was advised to have 4 founds of cisplatin/Alimta as adjuvant chemotherapy.   I just finished the last round last week.  I don't know if I was a just kind of a drama queen, but I really struggled with the chemo and was so thrilled to finally be finished last Friday. 

Then I had my first CT scan yesterday and my results were posted to my online medical chart this morning.  I was completely blindsided and scared to death. The results state that I have "scattered minute nodular densities within the right lung the etiology of which is indeterminate and possibility of metastases should be considered."   It also stated that there were "no appreciable nodules on my CT scan from 6 months ago" back when the whole thing started.   I haven't heard back from my surgeon or oncologist yet. 

I am freaking out trying to figure out what this means...has anyone else had this type of CT scan result so soon after surgery and finishing chemo?  Is there any chance that this isn't a recurrence?  I was completely aware of the possibility of recurrence, but guess I just didn't expect it to happen so soon.  

Thanks in advance!

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DebM,

Did you have biomarker testing done after the surgery?

I had the same chemo regimen as you and my cancer recurred. Initially, they said it was "spots" and they weren't sure. But after about 8 months they said it was recurrence on both sides.

Once you know the results of the biomarker testing, you will know what options you have for treatment. Hang it there!!

Thinking of you!

 

Ro

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I'm with you on freaking out a bit. I'm three years out of my lobectomy (Stage Ib at the time), have been scanned every six months and all of a sudden I'm looking at some pretty scary PET-CT results. I go for biopsy in a little over a week.

This cancer stuff seems utterly random--nobody was predicting I'd have a recurrence--not this far away from my initial surgery. But we gotta deal with what's in front of us. I didn't have chemo after my surgery (though it was offered--but not strongly recommended) and, of course, now I wish I had. Yet your experience shows that even the chemo can't guarantee no recurrence. For a lot of people, recurrence never happens. 🤷‍♀️

There are more tools in the toolbox. Keep the faith--that's what I'm telling myself.

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Deb,

I'd freak out also. Most perplexing are the words: "indeterminate and possibility of metastases!"

I have "phantom nodules" that appear one scan and are gone the next. I've been dealing with these for years and in fact even record them by scan date and location on a spreadsheet. That helps reduce my post scan freak show. But I still suffer scanziety. I've not found a solution for reducing the pre-scan scanziety or the post scan freak "phantom nodule" show. It just seems to be part of the disease.

Likely you'll have a consultation with a medical oncologist or pulmonologist to discuss the results and path forward. I'd suggest asking your ordering physician to have the scan reinterpreted by another radiologist. Perhaps that might resolve the ambiguity.

Welcome back by the way. 

Stay the course.

Tom

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Thank so much for the quick responses ladies.  I am usually pretty calm and don't typically panic until I have all of the info.  This has just absolutely blindsided me.  My family was celebrating my last treatment 6 days ago.  I can't imagine telling them this news.

I'm not sure how to reply to you individually...

Thank you for the info Roz!  I do not think that I had biomarker testing done.  It doesn't seem to be included in my test results and I never received any information about it.  I will talk to the surgeon about it when I hear from him.  I have read many of your posts and am inspired by your story.

I'm so sorry to read about your recurrence LexieCat.   I have read your posts since my diagnosis.  I appreciate all of the info that you have shared.  Clearly the chemo doesn't guarantee anything...I literally just finished it.  

I am hoping for the best for both of you!  

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Hi again Tom!

I kind of took a break while I was going through chemo and just tried to focus on just getting through it.

I honestly didn't realize that this wasn't a typical interpretation of CT scan results, I'm pretty new to this.  Hopefully I'm overreacting, but the wording just sounded scary.

I didn't know that nodules could come and go???  That is interesting.  

My surgeon actually ordered the scan, so not sure if he or the oncologist will contact me.  I have messages into both. 

I will ask about having it reviewed by another radiologist.  The hospital I was at before had two radiologists review all imaging results.  I changed hospitals after diagnosis to have robotic surgery and this is my first ct scan at that hospital.  

Thank you for the info and the quick response!

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The nodules themselves don't really "come and go"--as it was explained to me, a lot depends on the precise angle of the CT. Slight differences in the "slices" of the images they take can make a nodule appear/disappear or appear slightly larger/smaller. But plenty of people have nodules that are just hanging out in their lungs--scar tissue, etc.--that never turn into anything.

 

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Hi Deb and welcome back.

Here's where you can find some info on biomarkers: https://lungevity.org/for-patients-caregivers/lung-cancer-101/types-of-lung-cancer    And  here's information about treatment:  https://lungevity.org/for-patients-caregivers/lung-cancer-101/treatment-options-for-lung-cancer    I suggest you read the sections on immunotherapy and targeted therapy, which will tell you why biomarker testing is  important.

Best wishes and keep us posted. Feel free to ask any questions you have.

Bridget O

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I know that feeling quite well Deb. I've had it more than once in fact, and each time, things have worked out. Hang in there and know that you are in a place where many have tread through and many more will follow. This site is full of the latest cutting edge information, and the research is moving at an impressive rate. Keep the faith and we are here for you.

jack

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Thanks so much for the responses and information!  I was fortunate to have stumbled onto this site shortly after my diagnosis.  The knowledge that you all have and share is incredible.  

I still haven't heard from either doctor about my CT Scan results.  Hopefully I'll hear from them on Monday.  

I've done a lot of reading on biomarkers and immunotherapy this morning.  There are so many areas on this site that I haven't visited before.  I guess I can't really do much until I get more information.

The waiting is always the worst part for me.  

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3 hours ago, DebM said:

The waiting is always the worst part for me.  

Me, too--and I suspect that's true for most of us. My docs are clearly preparing me for bad news--not to scare me, but just to give me a chance to start processing the possibility of bad news. I'm sure THEY hate the uncertainty, too. Once we know what we're dealing with, we can suit up and show up to deal with whatever it turns out to be. I'm just glad there are options to better treat the various possibilities. 

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