Results of biopsy...

[SamGirl50]

Good morning everyone!

I just got the results of my biopsy and it has been confirmed for Adenocarcinoma. My pulmonologist is referring me to his partner to see about an EBUS so the stage can be determined and he is also referring me to the thoracic surgeon. I was hoping and praying that the results came back negative but I guess that was not the plan. I'm still in shock and not sure what all of this entails but I will say that I'm scared. Terrified is more accurate. I do, however, have to keep trying to push on because I have my 16 year old daughter and I'm all she has. God Bless!!!

[LexieCat]

My surgeon referred to adenocarcinoma as "garden variety" lung cancer. It's the most common and also the most studied and most treatable.

I'm a little confused about why they would be talking about an EBUS for staging purposes--I have never heard of that. If they are just trying to determine the tumor size or something, they will know that when they remove it. Did they explain what they think that will tell them?

The surgery, believe it or not, is pretty simple, assuming you can have VATS (the laparoscopic procedure). Seriously, my C-section hurt worse, hurt longer, and required a longer recovery than my lobectomy did. I was out with friends and back at work two weeks later.

[SamGirl50]

@LexieCat He basically said that it (EBUS) would assist in determining the stage. But at this point, I just want to see the surgeon and oncologist so that we can get started with removing this out of my body. I don't think that my pulmonologist has much experience with cancer which is why I think he referred me to his partner who is actually suppose to look over everything that has been done and determine if I do in fact need the EBUS. I do hope I can have the VATs because from everything I have read on here from everyone, including you, it seems to have the easiest recovery time and less pain. I am so glad to have found all of you because I can definitely say that I would be in a complete panic.

[AngelL]

I'm also new to this. I hope your treatment options are vast and as pain free as possible! 

I was diagnosed 7/31/2020 NSCLC, Adenocarcinoma, stage 4 with brain mets and spread to lymphnodes. While the spot on lung is small (1.5cm) the doctors say it is inoperable because spread had already taken place and because it is located at the very top of my left lung right beside a major artery.  They said the stage 4 was because it had spread to brain which they verified by MRI.  I'll admit I haven't learned all of the terminology or done as much research into my own personal options as I should but I've just been trying to make it through today (over and over again) Luckily I have my husband as my research team so he can ask the doctor questions. I hope you also have a strong support system. I googled once and got scared! I'm not as tough as some here. 

 From my understanding the EBUS was done on me to verify the spot was in fact  cancerous even though PET, CATS and MRIs had doctors pretty certain. And also tissue was tested to see if I have a genetic marker for targeted therapy. Still awaiting tissue biopsy results on markers. In the mean time I've had radiation to brain and started the triplet for lungs, thyroids. 

Feel free to message me anytime. Im not very fluent on the scientific side but if you'd like to compare notes I'm open for that. I promise not to cheat off of your paper  

[SamGirl50]

Thank you @AngelL! I'm so sorry of your recent diagnosis.  I pray for only positive results for you and others. Thank you for reaching out. I do have my brother who lives here in the same town and my other brother lives in New York but will be here if I needed him. I'm not as strong as everyone else here either. This is scary to me. I lost my mother a year ago to NSCLC with pleural effusion stage 4. She was a strong woman. I was her primary care provider. I didn't research as much as I could have because I guess in the back of my mind I always thought she would be ok and now here I am. I am not familiar with any of the processes or terms either. You also, feel free to message me as I am here anytime. That goes for anyone else too. 

[BridgetO]

Hi SamGirl,

It's normal to be scared,especially at this point when you don't know what's next. Once you have a clear diagnosis and a treatment plan, things will settle down some. I'll bet you are stronger than you think.s

LexieCat is right about VATs surgery: little tiny incisions. I asked my surgeon how they get whole lobe out through that tiny hole and he told me that without air in it, the lung just deflates like a balloon.

I cant remember whether you've had a PET scan or not. This is usually done before surgery to see if the cancer has spread anywhere.

I'm glad to hear you have family support. You'll get through this! 

Bridget O

[SamGirl50]

I actually just received my biopsy results from the hospital by email and this is what it says:

Review of the specimen reveals fragments of non-small cell carcinoma histologically favoring adenocarcinoma. Background benign alveolated lung parenchyma is also present. This case was reviewed alongside the concurrent fine needle aspiration case, see FN20-1175. The neoplastic cells are positive for cytokeratin marker AE1/AE3, which helps show the pattern and extent of involvement by the neoplasm. Mucicarmine shows rare mucin associated with the neoplastic cells. The CK7 stain is positive in the tumor cells, while CK20 is negative. TTF-1 is positive in the neoplastic cells.

I'm going to try to google some of it to see what it means. 

Thank you for your support @BridgetO!

[Jennedy]

@SamGirl50

In June, thet found a spot on my lung via Xray. I had found a lump on my lymph node in my above my collar bone.  I had a CT scan the next day which showed it was probably cancer and also in other lymph nodes. A week later they did a broncoscopy but it showed no cancerous cells. They went back in a week later via EBUS so they could be sure to get the tumor. The EBUS uses an ultrasound to be sure they get the tumor. I had a PET scan a week later which showed the cancer was also in my shoulder blade. 

I have adenocarcinoma also. Maybe the EBUS is to get a better sample for genetic testing.

Jenny

[SamGirl50]

Thank you @Jennedy. That does seem to make sense.

[SamGirl50]

I just received my appointment to see the thoracic surgeon.  It's not until November 3rd. Is it commen for appointments to be so far off?? This has me worried.

[LexieCat]

It's actually not that unusual. I think it affects our stress level more than it does the cancer--the delay, I mean.

It might be worth giving the surgeon's office a call and telling them (very nicely) that you're stressing over finding out what's going on, getting any needed surgery scheduled, etc., and that you would VERY much appreciate it if they could fit you in sooner if they have a cancellation. I did that with one of my appointments a few weeks ago (I think it was for the sacral MRI for my suspected bone met) and wound up getting a call two days later they had a cancellation and could get me in that day.

Never any guarantees, but it doesn't hurt to ask. 

[SamGirl50]

Thank you @LexieCat. I did call and they called me back with an earlier appointment on the 20th. That's a lot better. Thank you for the advice. 

[LexieCat]

Awesome! That's MUCH better--like I said, never hurts to ask. And it does pay (most of the time) to make nice with the office staff. It's like when I was training new prosecutors--ALWAYS be nice to the court staff. When people like you they often will go above and beyond. Sometimes, of course, you have to be firm, but in my experience it's best to start off nice--and sometimes there's really nothing they can do. 

[Judy M2]

3 hours ago, LexieCat said:

And it does pay (most of the time) to make nice with the office staff. It's like when I was training new prosecutors--ALWAYS be nice to the court staff. When people like you they often will go above and beyond.

Absolutely right! I always did this in my career so it's second nature to me. When I was ready to be discharged from the rehab facility after my abdominal surgery, a couple of the CNAs said they would miss me and that I was nicer to them than most other patients. They were always responsive and kind when I rang for them. 

Good luck at your appointment, @SamGirl50.

[SamGirl50]

Thank you @Judy M2!

[LexieCat]

Oh, one other suggestion that sometimes helps in getting tests, etc, moved up. I was concerned about the long delay in my scheduled biopsy, and I contacted the surgeon who had performed my lobectomy (he'd given me his personal cell # back when and told me to call "anytime"--which I'd availed myself of only a couple of times back then). He sat right down at a computer and pulled up my results--mind you, I hadn't seen him for three years. He agreed a biopsy should be done ASAP, and HE called and got it moved up by several weeks.

So if you are lucky enough to hook up with a really good provider who's a good advocate for you, sometimes that person can be enlisted to move things up. Just another thing to keep in mind going forward.

[SamGirl50]

Wow! @LexieCat Now that's a doctor who cares! I hope I'm as lucky as you to have one.

[LexieCat]

He really is special. Even though I've switched my care to Penn Medicine, if I'm ever lucky enough to be eligible for lung surgery again, there's no one else I'd rather have do it. If I could clone him for every patient having lung cancer surgery, I would.