New and Nervous

[Chris_M]

Hello!

I am new here and very nervous. I am a breast cancer survivor cancer free 12 years. As follow up I get scans yearly. On one of my scans a lung nodule was found years ago. In 2018 it measured 3mm and has been growing on average 2mm a year and this year it is 8mm. Previously the radiologist said that it was concerning for metastatic or new primary cancer. This last time the radiologist stated it was suspicious for a low grade adenocarcinoma. My oncologist sent me to a pulmonologist yesterday who said it needs to come out and he was going to consult with the cardio-thoracic surgeon and get back with me in a week or 2. Today I get a message from the pulmonologist stating that he had spoken to the surgeon who reviewed my films and agreed that the nodule needs to be removed. Next thing I know I have an appointment on the 11th to see the surgeon. This has been a whirlwind of a week! What should I prepare for procedure wise, I just don’t know what to expect! Advice, comments, opinions anything you have to say that will help me moving forward will be most appreciated!

THANK YOU!

[Mamma Om]

Hi Chris. I'm not a  doctor but I:ve had cancer 4 times. Left breast then 12 years later right breast. Then thyroid cancer 3 years after that, and lung cancer after that. I am currently free of disease, although I have 6 month CT scans of a nodule that at last check had shrunk a little. I am wondering why your Docs are not recommending a biopsy and PET scan before surgery?  Every one of my cancer diagnoses and surgeries were preceded by a biopsy and a PET. Perhaps you could call the doctor and ask that question before you meet with a surgeon. Just my thoughts, and wishing you well whichever way you go.  MAMMA-OM

 

[LouT]

Chris_M

Welcome to the club nobody wants to be a member of.  Let's first take a step back here...at this point your nodule has been growing slowly and is (I'm assuming) 8mm on it's largest side.  That is a pretty small nodule to biopsy with a needle.  In my case my nodule was 5mm x 8mm and even a PET Scan (where cancer lights up) was inconclusive.  After not being able                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                    to perform a CT guided needle biopsy my doctors finally decided to do a wedge section, remove the nodule, test if it is malignant and if it was, that lobe would be removed.  In my case (2019) the nodule was a primary lung cancer cell (I had colon cancer in 2010) and it was in fact malignant.  They then removed my lower-right lobe and my final diagnosis was NSCLC Squamos at Stage 1a.  That was back on May 2nd 2019 and all of my scans have been clear and NED (no evidence of disease) since the surgery.  I was also able to get back to my regular 6 day/week workout (5 miles on treadmill and 30 minutes of weights).  There is hope after lung cancer.  

You don't provide much detail about the diagnostic process that has been followed so I'm going to assume that they considered all testing options including biopsy, but then determined that the wedge resection was the best approach.  While most lung nodules are not cancerous they also rarely grow over time, so there is reason for the pulmonologist to be concerned.  The surgeon does surgery so that is what he sees as the solution.  The good news is that if the wedge does not turn out to be malignant you will be closed up (minus the nodule).  

A word of caution...please stay away from Dr. Google.  The 5-year Prognosis stats are far from accurate and for a host of reasons.  Not the least of which is that they are 5-year averages and not weighted properly to consider the newer and more effective treatments that are now available.  In addition the condition of the patient, stage at discovery and other factors will always play into proper prognosis.

Additionally, you should request that any biopsy they do take (cancer or not) has biomarker testing done on it.  There may be treatments available to address your (potential) cancer without you having to go through chemo.

In order to help you to get your feet on the ground I'm going to provide three links:

1. This is information on lung cancer, "Navigating the Diagnostic Process; What to Ask Your Doctor".  Find it here.
2. This is an excellent read titled "10 Steps to Surviving Lung Cancer; from a Survivor".  On this page.
3. I wrote a piece to prepare people for lung surgery; pre, hospital stay and post surgery titled "Thoracic Surgery; Tips and Tricks".  It can be located here.

You'll surely be hearing from more folks so stick around and ask any questions you have and we'll share our experience to help you.

Lou

PS:  Since you had an identical post in the Member Update section I deleted that one since most folks will find your post here.  

[Chris_M]

Hey Lou,

Thank you for all that useful information I will be reading it very shortly

As for the diagnostic process it has consisted of yearly High Res CT scans, a few MRI’s, labs, and a PET that was inconclusive. A needle biopsy was not even offered as an option to me but I assume that my pulmonologist and surgeon discussed it and ultimately decided the best option for me was to remove the nodule. He just told me that it “most likely is a low grade adenocarcinoma and the surgeon agreed that it need to be removed.” I was not really involved in that conversation. I saw the pulmonologist Thursday he spoke to the Cardio-Thoracic surgeon after I left or the next morning (Friday) and by 3pm that same day I had an appointment with the surgeon to see about getting it removed.  I see my oncologist Friday the 8th so maybe he can shed some light on this for me. I do need to add I have some pretty rare gene mutations but do not think I have been tested for any of the ones that play a role in lung cancer development. I am planning on asking my oncologist if I need any additional genetic testing. And I will definitely ask for the bio-markers to be done like you suggested. 

So if I am understanding you correctly, you had the wedge then had to go back in and have a lobectomy after you pathology came back some days later or did they do the wedge, perform a frozen section to determine malignancy while you were on the table,  prompting the lobectomy at that time? 

Also what was the recovery timeframe? We’re you back to work in a couple of weeks or months? 

Oh and it is fine that you deleted that other post. I wasn’t really sure where to post at first. Lol my mind has been on overdrive! And BTW I probable will still google because I am a researching fool! It is the nurse in me haha. I know just enough to be dangerous, but found that talking to people who have been through this about their experiences is mor helpful than anything! 

Thanks again!

 

[LouT]

Chris

My case was similar to yours.  My nodule was small, PET Scan inconclusive and nodule too small for a needle biopsy.  When they do the wedge they then test the module while you’re on the table. So I’m my case surgery was immediate, It would be the same for you.  I was back to my full workout routine in about 5 weeks.  I’m retired but if I was working I could have returned within 2-3 weeks.  

We’re glad to have you but sorry you need to be here. TTYLL and keep in touch. 
 

Lou

[Chris_M]

Great thank you for the information it is very much appreciated!

[BridgetO]

Hi Chris, My situation was also similar to yours. I had treatment for an advanced gynecologic cancer and as followup i had regular CT scans. One turned up a small lung nodule that was rescanned in 3 months and had grown a little. Nothing lit up on the PET, which I understand is common for these small slow growing cancers. Mine couldn't be biopsied by needle or bronchoscope due to location. The pulmonologist said it had more of the appearance of a primary lung cancer than of a metastasis from my gyn cancer or prior breast cancer.

So I had a lobectomy by VATS and it turned out to be an adenocarcinoma, Stage 1. I was released from the hospital the following day with a chest drain tube still in because of an air leak. I had the darn tube in for 10 days. My recovery sped up once the tube was out. I'm retired, but I probably could have gone back to work in a month. I have no evidence of disease (NED) on all 3 of my primary cancers.

If you can't stay away from Dr. Google, please still keep in mind Lou's cautions. Because of the many new LC treatments in the past few years, most survival and recurrence statistics are dated when they're published. And, in any event, you're a case of one, and stats are based on large groups. 

Best of luck, and keep us posted. Ask us any questions you may have. 

[Chris_M]

Hi Bridgett! 

Thanks for sharing your story with me.  I am sorry that you have had to do the cancer thing 3 times that is terrible but very happy to hear your NED status!  

I do google a lot but I am a nurse also and I have a thirst for knowledge. I also tend to not really put much stock into the stats as i have found that there are always exceptions in my 30 years of nursing. 

I do have a question though. Has anyone here found that they were not candidates for the minimally invasive procedures due to extensive chest surgery? I was reading and found that if you have had extensive chest surgery then you may not be a candidate and I definitely fall under that category. I do not see the surgeon until the 11th and was just curious.

Also did any of you experience an increase in mucus production in your chest prior to diagnosis?

Thanks