Biopsy confirmed Stage IIIb Non-Small

[RH1970]

Just got home from Roswell Park CCC in Buffalo carrying some bad news.

The biopsy confirmed that the 2.5cm nodule and lymph node(s) are positive for cancer.  The doctor says it's stage IIIb Non-Small.

I was so hoping that it was an infection, but I guess luck was not on my side this time.

They will be scanning the tissue for gene mutations.  I am a never-smoker, so that increases the chances that there is some mutation that might allow me to take advantage of some of these new treatments.  But I understand that mutations are generally uncommon, so I may be looking at chemo/radiation.  My doc says that at Roswell they have some 'expiramental' radiation technique that she may push for.  I'm not sure exactly she was referring to.  But in general she said we would treat it aggressively since I'm relatively young (50) and in good health otherwise.  We will know more once the full biopsy report is available in week.

Also, I have a second opinion in the pipeline from Memorial Sloan Kettering next week.

I thank you all for the support and advice you've given so far.

-Rick

 

 

 

[Rower Michelle]

Hi Rick, 

I'm very sorry to hear this news.  It's so similar to my situation, everyone of my doctors believed I had some type of unusual infection. It's really hard to get your head wrapped around this, I know.  It's great news the comprehensive biomarker testing is already underway, not everyone here has had that out of the gate at Stage IIIb, also good that you are being proactive in lining up a second opinion. You seem to be taking action and controlling what you can given the situation. 

If you do have one of these mutations, (I have ALK) in addition to Lungevity there are organized patient groups for some of the more "common" mutations.  With increased survivorship, it allows a unique opportunity for patients to share experiences from around the world.  You won't have to wait for the latest academic journal article to learn about treatment advances.   Another note about these "mutant" never smoker cancers, you are within shot of Mass General where many of the treatment advances have been pioneered.   Once you have the second opinion at Sloan, you may very well want to set up an appointment with MGH where the oncologists are highly specialized by mutation type.  

There's a lot of options available to you irrespective of mutation which makes this cancer not only treatable but beatable. 

Keep us posted and we'll do our best to help you along the way. 

Michelle 

 

 

 

[Tom Galli]

Rick,

Welcome here and I'm really sorry you needed to learn about us. My lung cancer diagnosis at Stage IIIB non-small cell lung cancer (NSCLC), squamous cell, was a surprise and a disaster. Rest assured; everyone on this forum knows exactly what you are going through.

It is good to learn your medical team is performing follow on laboratory testing to look for tumor markers and or PD-1 or PD-L1 indications. This testing indicates suitability for targeted therapy and immunotherapy, and these methods have moved the survival curve substantially. Most of us consult Dr. Google on lung cancer survival statistics but data on these methods is not yet included in statistical projections so they are inaccurate. Even when new survival data is included, the statistics will still be inaccurate. Why? This may explain.

As for experimental radiation, I'd be excited to learn the details for new radiation methods. A precision radiation method called stereotactic body radiation therapy (SBRT) likely saved my life. The maker of the equipment used in my treatment called the process CyberKnife but it is known by many alphabet-soup lash-ups. Here is some information you may find useful on radiation treatment.

Here are my tips and tricks for surviving lung cancer. I was diagnosed in 2004 and I'm still hanging around. Your take away from that data: if I can live, so can you.

Stay the course.

Tom

[GaryG]

Rick: Welcome to our place and sorry to hear about your diagnoses. Like Tom said we all had the shock of our lives when we first learned . I am stage IIIB NCLS like you but I don't have any mutations and I did not qualify for radiation or surgery. My treatment is the triplet a combination of chemo and immunotherapy. Nevertheless  my spirit is high and I have high hopes that I will beat lung cancer. It looks like you have more opportunities to come ahead so be hopeful and fight with everything you have. We will be here rooting for you.

[RH1970]

Thank you all so much for the support!

This is definitely a hard time, but I'm determined to get to that place of being 'sanguine' as soon as I can..for myself and for my family.

Michelle, Once I get my biomarker test back and see what options I might have, I may reach out to Mass General to see what they have to say.  I'll also look into the groups.  Thanks for the tip.

Tom, I'll let you know what radiation technique the doctor referred to when I talk to her next week.

GaryG, I've heard many amazing things about immunotherapy.  It is definitely a comfort to know that IIIb-ers are out there fighting the good fight.

-Rick

[Lisa Haines]

Rick

Please know you are not alone, we were all stunned with our cancer diagnosis. I never had any symptoms or WARNINGS until it had spread to my brain and caused sudden neuro changes.  It was such a total shock.  I never had a cough or any signs -  it's a very sneaky cancer.

Happily despite being stage IV NSCLC, I'm doing well now 5 1/2 years in.  The are many great advances in treatment now.

Hoping you will do very well abd soon be in the road to treatment.

Best wishes,

  Lisa