Adenocarcinoma - newly diagnosed

Good morning! A couple of updates: I had the pulmonary function test on Monday - have not received any info yet, and I am scheduled for a brain MRI on Saturday. I feel that things seem to be moving but not fast enough. Also, still waiting for the gene marker results which don't seem to have come back yet...does anyone know how long that takes? Also, has anyone had a mediastinoscopy done? When I spoke with the surgeon he mentioned that would be done IF surgery was an option...

Thanks as always...
Sandy

Thanks for asking! I met with the surgeon. Here's the plan the surgeon and onco have laid out: 1. Onco will schedule an MRI to rule out spreading to brain. 2. If negative on MRI, surgeon will schedule a mediastinoscopy of the naughty lymph node (as well as a few others). 3. If he finds it has spread to other lymph nodes, there will be no surgery. 4. If only in the node that lit up on PET scan, they suggest a short round of chemo/radiotherapy first. 5. If all goes well, he would then schedule a surgery to remove the mass as well the lymph nodes. 6. Post sx, another round of chemo, rad and immunotherapy. 7. I don't have a timeframe yet, but suspect I will hear from Onco on Monday with a date for the MRI - after the MRI, a schedule for the short pre-sx chemo/rad. This is all happening so quickly and of course, I'm hoping the surgery will happen. If it's not meant to be, then we move on to the long term solutions. I am fortunate to have family and friends with good support and it's helpful sharing with all of you at Mayo Connect! At first I was completely overwhelmed and scared. But now that things are falling into place quickly, I'm not dwelling on it and keeping busy!
Thanks again...
Sandy

Hi @pixiedust, I wanted to check in with you. I'm sure @lls8000 and @flusshund can share more about your staging.

Did you get the biopsy done in the meantime? What is your treatment plan? And most importantly, how are you doing?

Hello. I had my PET scan today and got the results back same day. This is the diagnosis: 1. Findings of primary right upper lobe neoplasm with low right paratracheal nodal metastatic disease. 2. No evidence of distant metastatic disease. I spoke with my Pulmonologist and he said this is considered stage 3A. He is contacting an Oncologist and hopefully I can meet with both of them either this week or early next. He suggested the Oncologist might want a biopsy of the lobe (mediastenoscopy?) or a bronchoscope/ultrasound & biopsy. Very overwhelmed. Has anyone had success with surgery at this stage?
Sandy aka Pixiedust

Wow, that's a lot to cope with. I am glad you have a positive outlook and I hope they can clear the infection and that the recovery from surgery goes well.

Yes, that’s one of the biomarker testing companies.
Take one day at a time. Lisa

Wow...you certainly have a lot on your plate. Good luck on your surgery. I look forward to hearing your results.

Sandy

I am so sorry that you have to go through this, but there are some great people on here with a lot of information and words of encouragement. Hopefully you'll be at an early stage. There's so much they can do right now. My pulmonologist told me that just in the last 3 years they've come so far with treatment options. January 5th I woke up in the middle of the night and started coughing up blood, I went to the emergency room and they did a CT scan to find a very large mass on my lung, obviously it was thought to be lung cancer. In the meantime they also found cancer on my intestine. They scheduled bronchoscopy and all of it turned out to be a huge massive infection. Actually two infections, I had Klebsiella pneumonia and I just found out about a week ago I have MAC, which is short for Mycobacterium Avium Complex which is a very rare and dangerous lung infection that can cause cavities or holes in your lung. I have one, it's 3.2 cm. I see infectious diseases tomorrow, surgery on the intestine on Saturday. It's just one day at a time!! Hang in there, ask tons of questions and be gentle with yourself. It's okay to cry, it's okay to laugh too. As a matter of fact laugh as much as possible. ❤️

Hi Sandy,

I got that diagnosis in June 2018. I had an upper right lobectomy using the daVinci robot which left very small scars. I have a hard time even finding one of them anymore. I've recovered almost all of my original lung capacity. My lung oncologist says that's because the remaining two lobes expand to fill the space.

Your doctors will want to perform whatever's needed as quickly as possible because data shows that gives you the best chance of survival. It feels a bit rushed, but it's for a good reason. Oncology has made great strides in the last 15 years or so. Today there are fewer side effects and much less discomfort. In my case, I continued working all through chemo and radiation, though I did schedule chemo for Friday so I could be down over the weekend.

The secret is to give yourself time. I'm kind of an overachiever and the best advice I received was to give myself permission to rest! Today, I work full time in a job I love, walk my dog regularly, participate in an annual stair-climb fundraiser, bought a new house on an acre of land, and give myself permission to rest when I'm tired. Oh, and this group is great for answering the questions you'll have. Best of luck!

Thanks Lisa...helpful. I'm not certain if they did a biomarker "(A paraffin block is sent to Integrated Oncology for OmniSeq studies)". This is what was stated the on the email results in my chart. I have not yet seen my Pulmonologist yet, so not sure but I assume that statement means biomarker testing??

This is all happening so quickly that I'm struggling to wrap my head around all of it...so taking one step at a time.

Sandy