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Introducing Myself + Info Needed


Citrine

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Hello,

I had breast cancer in 2015 and after chemo and radiation, I am fine.  I was also diagnosed with endometrial cancer in 2020, but apart from a radical hysterectomy, no further treatment was needed.  I have had a lung nodule for 5 years (found during routine staging scan for my breast cancer), and it has remained relatively unchanged since my latest CT scan apart from some roundglass opacities being found in the last 2 CT scans.  The latest scan shows that the nodule has grown from 1.1 x 0.8 to 1.3 x 0.8, and that there is a new 3 mm nodule either attached to the larger nodule or situated just inferiorly to it.  The radiologist recommends a PET scan to exclude a new lung neoplasm. As you can see from my history, this would be my 3rd cancer (I have been sent to genetic testing to see if there is something genetic going on), so I am going a little crazy.  Can someone help me decipher my latest scan? What are the chances that I have lung cancer? If it is, how curable is it?  Any help, advice, or comfort is highly desired.  Thank you.

 

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Hi Citrine!  My history is similar to yours. I had breast cancer in 2008 and have been NED (no evidence of disease) after having a lumpectomy and radiation. In 2011, I had a cervical/endometrial cancer that was a rare and aggressive type. I had a radical hysterectomy, but mine was followed by chemo and radiation. I've also been NED on that one. During a routine CT to watch for possible metastases of my gynecologic cancer, a small nodule was found.  A followup CT found that it had grown a little. I was sent for a PET scan, and nothing showed up. My pulmonologist said that small and slow-growing cancers often don't. She also looked at the CT (not just the radiologist's report) and said that the nodule looked more like a primary lung cancer than a metastasis.  Because of its location, this little bugger couldn't be biopsied without removing the lobe.

I agreed to a lobectomy (in 2016) and it turned out to be a non-small-cell lung cancer (adenocarcinoma) stage 1a. I was relieved to find it wasn't a metastasis. The surgery was considered curative, so no further treatment was needed. However, I am having regular CT scans, because lung cancers are prone to recur. So far, NED on this one, too.

As to interpreting your latest CT scan, a good person to do this is an experienced pulmonologist, who can look at the scan itself and not just the radiologist's report.  A PET scan is a good idea, too. But the only thing that definitively diagnose  cancer is a biopsy. I suggest you check with your doctors to see if a biopsy can be done by needle or by bronchoscope. (These would likely be done by an interventional radiologist.)  If biopsy can't be done in one of those ways, you might want to consult with a surgeon about a surgical biopsy. Sometimes this can be done short of removing the whole lobe and sometimes not.  One thing I can say about my lobectomy was that it was WAY easier than my radical hysterectomy.

You might want to get a definitive answer by biopsy  before your nodule  gets any bigger.  Lung cancer is no longer the death sentence it was once considered. The earlier it's found, the easier it is to treat. Most, when found early, are pretty curable. Bigger ones are treatable and sometimes curable.  There are lots of new treaments in the last few years, and others are being approved regularly.

And, it this does turn out to be a metastasis, you'd want to to get treatment ASAP for that. And maybe it will turn out to be something benign. 

It's understandable that you're "going crazy" right now, but hang in there, things will  get easier once you know what you're dealing with.  Read some of our stories on these forums and let us know what questions you may have and how we can support you.

Bridget O

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Hello Bridget,

Thank you so much for taking the time to respond to my message.

WOW! You have really been through the ringer! Have you had genetic testing? I have an appointment later this month with genetics,  especially since I was dx'd with serous endometrial cancer and my biopsy showed a TP53 mutation.  I happened to be one of those very lucky people whose cancer was found very early and only in one nodule-hence no chemo or radiation.

I have spoken to my breast oncologist, and he does not believe it is mets, thankfully, although it is difficult to feel grateful if the nodule turns out to be cancer. My pulmonologist and I had already discussed getting the nodule biopsied, but because it was relatively stable--apart from the groundglass opacities-- we had decided to take a wait-and-see approach because of the location of the nodule.  This may change now depending on what is found in the PET scan.

Again, thank you for your kind words, and I will definitely read some of the stories on this forum.

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Hello from me too.  So glad you had an opportunity to meet Bridget.  She’s been a wonderful source of information and inspiration for our group.  You’re in good company here.  While no one wants to join this club- ever- we’re glad you found us. 

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Citrine,

I'd never pretend to be able to determine a conclusion from your scans.  That needs to be done by your medical team. 

But, my story is similar to yours.  I was diagnosed with colon cancer in 2010 and required surgery via a resection.  In 2019 I was diagnosed with lung cancer (primary lung cells not mets from previous colon cancer) and once again had surgery.  I'm blessed in that neither cancer has recurred and all seems stable for now.  My biggest regret is not knowing enough to request or advocate for genetic testing at the time samples were taken.  Cancer runs in my family...most aunts and uncles died of it as well as my mother and father.  So, yes there could be a genetic component and if this nodule did turn out to be cancerous you would be wise to advocate for your medical team to run biomarker tests.  If biopsy samples are taken be sure to ask about this.  But, until then let's keep fingers crossed and strong vibes going out that the nodule is not growing, but perhaps another nodule has formed.

Lou

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Hi Michelle and Tom.  Thank you for your support.

Hi Lou. Thank you for your kind words.  I am seeing a geneticist later this month, and I will be sure to get genetic testing on the lung nodule if I need a biopsy. Did you need chemo/radiation for both cancers?  I hope not! That must have been so difficult for you.

I am so glad I found this site.  Thank you, everyone.

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Hi Citrine, thanks for your reply. I did have genetic testing. It showed an STK 11 mutattion which they said was a variant of uncertain significance. Then I read (on the infamous Dr Google) that an STK 11 mutation did increase the risk of a bunch of cancers, including the ones that I had. I called up the genetic counselor and she said that the one that caused risk was a different STK 11 mutation.  The other, risk increasing mutation, is said to be the one that causes Peutz-Jehger Syndrome, which I don't have. (PJS involves some unusual skin pigmentation and a unique form of intestinal polyps) I'm suspicious though, because STK 11 is a tumor supressor gene, so it seems like "something wrong with it" might stop tumors from being supressed. I also  think there's some connection between STK 11 and TP53 mutations but I'm not sure what-- it's been a while since I read this stuff. 

My lung cancer had a KRAS mutation, nothing about KRAS subtype, which I think wasn't unusual for a biomarker test done almost 5 years ago.

My gynecologic cancer was about 10 years ago and was stage 3.  One pathologist diagnosed it as cervival spread to the endometrium and the second said endometrial spread to the cervix. In any event it was clear cell and I seem to remember it had some serous component also. 

I'll be interested to hear the results of your genetic test and anything you learn about this stuff. 

And let us know, too, about how you're doing and the results of your PET. We're interested in your wellbeing as well as your genetics!

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