Good afternoon,
I am a 49 year old healthy female non smoker who accidentally found a spot during a ct scan for something else almost 7 years ago. It was a 2.4 cavitary ground glass nodule that I was followed for 3 years with no growth. After the 3 years they noticed that the nodule still did not grow, but became a little more dense. At that time my surgeon decided to take me into the OR with a pathologist and try to get a biopsy and if it was positive for cancer he would do the lobectomy, which it was cancer. There were not any positive lymph nodes. I was staged with Stage 1A adenocarcinoma. I am now 31/2 years out with clear ct scans until the last two. They have shown a 1.2 cm ground glass nodule in my RUL. My oncologist never even told me about it and told me I was basically cured, and he would see me in a year. I always get my reports so I was the one who saw I had the nodule. I am not sure why he didn't tell me about it. I sometimes go to MD Anderson to see if I am on the right road to catch any reoccurrence that might happen, and the doctor called me back and said it should be watch every 3 months, but I can see my surgeon to see if a biopsy can be done. I was wondering if you could give me your opinion on this because you are an expert on lung cancer. I just know the waiting 31/2 years with the first nodule before the surgery and everyone telling me it wasn't cancer, and somehow I knew it was. I also have the EGFR mutation also if that is any help. I just want to make sure being I am my own advocate for myself, I want to do the right thing, especially knowing this is very similar to my first nodule except it not being cavitary.
Any help or advice you are able to give me would be greatly appreciated. I really just want to know I am doing the right thing for myself.
Stephanie Wilkerson
Reply # - March 25, 2015, 04:20 AM
Hi Stephanie,
Hi Stephanie,
Welcome to GRACE. Ground glass nodules can indicate a form of lung cancer that is very slow-growing, so much so that there is a significant risk of over-treating it. This consideration is most likely the basis for your oncologist's recommendation to watch and wait, as nodules like this can remain unchanged for long periods of time (as you saw with your first nodule), and may never become invasive and life-threatening.
You may find this discussion by Dr. West helpful.
JimC
Forum moderator
Reply # - March 25, 2015, 08:17 AM
Hello Jim,
Hello Jim,
Thank you so much for the welcome, as I am new to all this. I read the link you sent me of what Dr. West spoke about. It was very interesting, especially since my first never grew for over three years, and then it really hadn't grown it just became more dense. I am actually surprised about having another one now which I have been told could be a lot of things, but I don't have any of the things they say it could be. It just seems to coincidental to me. They always thought though because my was so slow growing that my chances were very high it wouldn't return so this through me for a loop. My oncologist never mentioned it and I only knew because I get my reports. The hardest part is the waiting I had to go through for three years until they decided to take it out, I would just hate to wait and that is what it is again.
Thank you,
Stephanie Wilkerson
Reply # - March 25, 2015, 08:18 AM
PS: what does it mean when it
PS: what does it mean when it says two voices? I'm have no ideas what that means!
Thank you!!
Reply # - March 25, 2015, 01:04 PM
Hi Stephanie,
Hi Stephanie,
I too want to welcome you to Grace and say how proud I am to possibly be able to help a self advocate.
I'm not sure what you're referring to "two voices". Did you see that in a following post?
There are many medical oncologists who don't have as much knowledge of this uncommon form of lung cancer, BAC. Therefore it is often best to seek a 2nd opinion at an academic center such as MDA.
In his post about 2nd opinions Dr. Weiss talks about your community oncologist and your 2nd opinion doc working as a team, "When the teamwork approach is chosen, there are two basic ways that work for when to see the academic doc again. Most commonly, patients will return at the time of progression. At this visit, the academic doc will review images (sometimes with his radiologist too) to confirm that progression really happened. Next, he will review treatment options including both clinical trials (which would usually have to be administered at the academic center) and standard options (which can usually be administered locally). The one key point here is to not start a new line of therapy until you’ve had this consultation—it’s administration would make you ineligible for trials until you progress again! The second approach is chosen by patients who want closer contact with the academic doc and want things checked on a bit closer. This approach would be to see the consult doc each time that scans are obtained. The advantage of this approach is more constant involvement of the consult doc in your care—she reviews each scan, has the opportunity to provide more supportive care (help a bit more with day to day stuff like side effects from chemo) and is more up to date with everything going in with you when key decisions are needed."
http://cancergrace.org/cancer-101/2011/11/13/an-insider%E2%80%99s-guide…
There are many reasons why I find this post incredibly helpful and I think it may help in your case.
continued-
Reply # - March 25, 2015, 01:31 PM
I'm always surprised to hear
I'm always surprised to hear that waiting is the hardest part. Not that I don't believe it or haven't gone through my share of anxiety during the wait but with everything else involved with lung cancer, treatment, side effects and cancer symptoms themselves though the number of people who write about how difficult the waiting is is significant. I'm not sure if I can explain my point here. Maybe it's to say don't give in to that anxiety just to rid yourself to soon of something that's not yet hurting your physical health. There's a saying about treating recurrent cancer, make in a marathon not a sprint.
If this is cancer it sounds as though it has the same slow pattern as the primary tumor. If it's cancer it's also likely that it didn't come back but it's so slow moving that it just took that long to show itself. FYI, it takes about a billion cells to create a tumor the size of a pin head. We have tons of info on the subject of BAC. Please move through some of that material, ask questions as you have them and let us know how things are.
Following is a link to a list of posts on the subject of BAC,
http://cancergrace.org/lung/category/lung-cancer/special-populations-in…
All best,
Janine