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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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  • 2 weeks later...

I did finally hear back from my surgeon at the end of last week.  According to him, he's not worried about the CT scan...he said that the tiny nodules could just be infection or allergies.  Don't know if I'm buying that explanation, but apparently all of the nodules are under 3mm so they can't test anything??? 

He said that we would do another scan in three months to see how it looks then.  So, another scan to obsess about in 3 months :(

 

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2 hours ago, DebM said:

I did finally hear back from my surgeon at the end of last week.  According to him, he's not worried about the CT scan...he said that the tiny nodules could just be infection or allergies.  Don't know if I'm buying that explanation, but apparently all of the nodules are under 3mm so they can't test anything??? 

He said that we would do another scan in three months to see how it looks then.  So, another scan to obsess about in 3 months :(

I had several of those small nodules followed for growth through serial, low-dose CT scans over the last several years. They are so small that they don't usually show up on standard chest xrays. Many failed to grow and a couple even disappeared. I was told that if they are "irregularly shaped", then they should be checked every three months because that was more suspicious for malignancy. Otherwise, recheck every six months.

Anyway, a new one showed up and the other two hadn't changed in six months, and were deemed benign. The new one was like 4mm and was irregular in shape. I was scheduled for a three month re-evaluation. While waiting, I had a suffered a retinal detachment of my right eye. This ended up with numerous surgeries and back and forth trips to the Opthamologist who was out of town. I cancelled the CT scan and rescheduled it for the day, I had my annual checkup with my PCP. That ended up being five and a half months after the last CT. Well, I had my physical which was good and got the scan that afternoon. The next day my PCP calls me and says it has grown to approximately 6mm and some lymph nodes on the opposite side of my chest are suspiciously enlarged. She said "I never should have let you reschedule" she was very upset. I was then set up to see a thorasic surgeon.

The TS said the small size of the lung nodule would allow for a VAT surgery (less invasive) and a slice of the lung  taken out and tested while we waited in the OR for a fast freeze biopsy. And if it was deemed malignant, then he would take the whole upper lung section out and I would likely be cured. He said the lymph nodes were another matter and would need to be checked before he proceeded with any surgery. He ordered a PET scan and a pulmonary function test. He didn't think the lymph nodes were related to the lung nodule and were more likely an infection.  He then sent me to a general surgeon who removed a lymph node and had it checked. It turned out to be carcinoma and a met from the lung.

I was then referred to an Oncologist who had me get a brain MRI and she had some additional tests done on the biopsy specimen that the lab still had in storage.  Brain was clear . And an abdominal / pelvic CT scan didn't reveal anything there either. The genetic tests and PDL-1 came back and Immunotherapy was decided as the best course of treatment. So, here I am on Keytruda (sixth dose) and my last CT scan shows good results. 

 

 

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Deb, they very well COULD be nothing. But at that size, it's generally not possible to biopsy, so a re-check in a few months is probably the best they can do for the moment.

It sucks, I know. 

I try to look at it this way--better they are keeping an eye on it than not,. If any DO grow/become otherwise suspicious, they can get a jump on it ASAP.

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Jack,

It sounds like you had a similar situation with the multiple nodules.  It's interesting to me that a few people have mentioned nodules that seem to come and go.

I'm just gad that there are more options available for treatment than in the past.  

Hope that you continue to have good results with Keytruda!

 

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LexiCat,

Yep, it's just a waiting game at this point.  I've decided to enjoy what's left of summer and try not to worry too much about the next scan.  I'll cross that bridge when I come to it.  

My husband was recently diagnosed with prostrate cancer and we see a surgeon at the end of the month.  I'm hoping that we can get him straightened out before I have anymore issues.  2020 sure has been a rough year!

I am lurking in the background hoping for good results from your biopsy and happy to hear that your kids are coming!

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My ex (kiddos' dad--we are still very close friends) was diagnosed with prostate cancer last year, too. He got the radio "seed" treatment (forget what it's called--I can barely keep up with the LC treatments) and is doing very well. It's a tough decision for a lot of men which treatment to go with--I wish you guys luck with that.

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Thanks Lexi.  I'm kind of out of the loop because my last chemo treatment was the same day as his urologist appointment.  I think that he did plan to go with the seed treatment originally, but something changed that made the surgery the better choice.  Now that I'm back on my feet, I'll go to the next appt and hear the options and hopefully have a better understanding of the options.  

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Deb - Reading your story - and those of others, really makes me wonder what course is the right path to take... How much do our providers really know about these questionable nodules, specks, scar tissue, "stable" nodules, etc. 

I had my first lung CT in 2016 and multiple small nodules / GGO's were found. Four, in particular, were pointed out as something to be concerned about. At the time,  I was told this is common and that they were likely benign. I continued to have regular scans until summer 2018. By that time, there was only one nodule anyone was concerned with, but it was small (I believe it was 8mm) and in a difficult location in the RUL, so a biopsy would have been difficult. I was advised this nodule (the others either weren't showing or had not shown any changes) had grown slightly and it was more dense - and that the time had come to have it surgically removed. No one could say with 100% certainty that it was cancer, but the odds were great that it was.  I had a PET scan - which they did not think would show anything due to the small size of the tumor, but it did light up. I ended up having a RUL lobectomy in Oct 2018.  Pathology confirmed this was adenocarcinoma. I was staged 1a with no lymph node involvement. No further treatment was required. I was in a bit of shock that it really was cancer - and that it had already been removed - but I was so grateful that I had decided to have the surgery.

I worried a lot during this time - between 2016 - 2018. I was extremely anxious with each scan. (I still am). But I have come to recognize that I need to be grateful that I had almost two years of following this nodule until any action needed to be taken. While I don't want to, I know I need to accept that this is likely "the way" my life will go from here on out. When I read your story - and Lexie's - it's really a stark reminder that things can change very rapidly where lung cancer is concerned, without any forewarning.

Two years after my surgery, I have another small nodule in the upper left lung that we are following. Most likely another adenocarcinoma in situ.  I think it first appeared in February 2019, less than five months after my lobectomy. It remained stable and then grew from 5mm to 8mm between Aug 2019 - March 2020 and they think it became a little more dense. I just had a scan this month, Aug 2020. The nodule has remained stable and there is no evidence of disease or metastasis in the right lung.  My pulmonologist is certain this 8mm nodule is likely another cancer like before and he is referring me to a radiation oncologist.  What's frustrating is that I had the images sent to my surgeon as well (different hospital / clinic and city). My surgeon sent me a note saying he agreed with the radiologist that this is likely another adenocarcinoma in situ but that this is good news that it has remained stable... He said he is even fine with me waiting one year to have my next CT.  I just sent him a note letting him know the local pulmonologist is referring me to radiology.  I got a message from the surgeon and he had his office call me immediately to schedule a time for us to talk next week... So, I am anxious to hear what his opinion is.  I find it frustrating when the providers I have to keep an eye on this don't agree on the future steps I should take :-(

My surgeon is a world class surgeon - very well known - a very optimistic (overly?!) type, but even so I have "trust issues"! He has stressed to me in the past that many times we can sit, watch and wait on these nodules... and he doesn't necessarily think my CT's need to be every six months (which I'm not always entirely comfortable with). My pulmonologist said the same thing - he believe I need CT's every 6 mos to follow post-lobectomy, but he would also be comfortable waiting one year for a CT on this new tumor. He said he's had patients where they watched nodules for eight years or more. But, even so, he wants me to discuss this with the radiologist to see what his threshold would be - to move forward with SBRT - without a biopsy. Pulmonologist does not think a biopsy will be necessary, that due to the fact I had a previous cancer, this is likely the same.  I just want to hear what my surgeon says as well about this.

When I hear how many of you are getting caught off guard following months/years of clear CT's, well, it's disconcerting.  I can only imagine how you all feel, based upon how I think I would feel.  I know we all hope for the best - it hurts to hear when this happens to any of you.  You are all very inspiring to me.

 

 

Edited by ColleenRae
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ColleenRae,

I read your post and I certainly understand your concern.   "Nodule watching" is just our new normal I guess.   I may be inclined to be a little aggressive considering my history with nodules.

One thing that I forgot to mention in my original post was that I did have a PET scan when they originally found my nodule in 2010.  It did not show any activity at that time. I had four CT scans a year in 2010/2011 and then two per year in 2012/2013 and then once a year in 2014/2015.   The nodule remained at 2.5 cm with the same density for the entire 6 year period.  Since I stopped having scans after 6 years, I have no idea when it started growing.   From 2015 to 2019 it grew to 5 cm and lit up on the subsequent PET.  

One surgeon said that he would have deemed the nodule as "stable" as the pulmonologist did in 2015.   The surgeon that did my lobectomy said that he would have removed it in 2010 when they found it because of the size.  Who knows...you can't put the genie back in the bottle so you just move forward.

I'm sure that it's hard to know exactly what advice to follow when you get conflicting opinions.  Please update and let us know what you decide. 

Wishing you all the best!!!

 

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Thank you, DebM.  I appreciated your response.  I had to re-read what I wrote (I certainly can ramble...ha!) I had meant to comment on having multiple small nodules that come and go, but got off on a different course.

You were very diligent in following that nodule for years!  Lexie was correct - these new nodules are probably too small to biopsy and it is good that they've found them early and can track their progress. Some of my initial, small nodules have gone away in the past four years and some have now been labeled as scarring. Getting scans is a mixed bag where we are anxious for the next one but at the same time eager to know what's up. I liked your outlook - that you were going to try to enjoy the rest of your summer and not worry too much about the next scan. 

I understand what you are saying regarding being inclined to be a little aggressive. I tend to feel the same way.  I'm right in the middle of buying a home with my adult son (he's on the Autism spectrum; continues to live at home with me so we're buying together). We're supposed to close Sept. 11th. The home is about an hour from where we currently live, but involves our crossing the Canadian border, so traveling back and forth for medical care is a concern right now with the border closure. We still have a very brief window to back out, so I'm stressing a bit more than normal... Wondering how I can do this and radiation before we move (if that's even possible)! I'm not as young as I used to be...! :-)

Thank you, again, for your response. I wish you - and your husband - the best as well. You two certainly have had quite a year.  We will look forward to your updates.

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