new survivor

[Judi McGuire]

I was diagnosed November 30, 2017, when I found some swelling on the right side of my neck. I went to the ER where a CAT scan of my neck and chest showed stage 4 lung ca with mets to the lymph nodes and bone. I also have a pathological rib fracture. Thankfully I had mutations and biomarkers that enabled me to start targeted therapy with Tagrisso. Within 2 weeks the tumor shrunk to half of its size, lymph nodes had resolved and my neck was back to normal. Unfortunately I was taken off the Tagrisso for three weeks at the end of October because the oncologist thought that it was causing some toxicity and within those three weeks the lung tumor grew. Now I am back on the Tagrisso at half the dose and I am scheduled to have a consult with a radiologist. Just had a repeat MRI of the brain yesterday with see the oncologist on December 4. 

I joined this community because I need to have people in my life who will understand what is going on and not feel awful for me. I think like a lot of people I know, including family, have already written me off. I realize that they are afraid because of the unknown and I am grateful for the support I have gotten from them but I need a different kind of support. I continue to remain positive and I am doing what I can to live with this.

Judi

[MBinOregon]

Hi Judi,

Let me be the first one to say WELCOME.  This is the right place (at least it's been for me since I joined January this year, I hope you'll feel the same) where you can ask all kinds of questions, share all your fears, anxiety, frustrations, and of course joyful moments (like clean scans!).  We have many members who are survivors of many, many years and have been through many treatments and many ups and downs, so we get it

Feel free to share, ask questions, ask for prayers/good thoughts, anything!

Sending you prayers/good thoughts for clean MRI result.

MB

[Tom Galli]

Judi,

Welcome. I hope you soon believe you've come to the right place.  No one I know here is going to tell you lung cancer is a walk in the park.  Neither will we tell you it is a death sentence. 

There, unfortunately, is very little certainty in this disease and that lack of certainty for me was, still is, the most disconcerting part of lung cancer. So let's start with worst case.  First, read this. Almost everyone without an understanding of statistics tends to misinterpret projections of death from lung cancer.  If you are like most of us, you consulted Dr. Google and your first probe involved survival statistics.  I bet that bit of reading was not pleasant.  I'm not an expert in statistics but I've had a significant amount of academic training and even I forgot the fundamental concept of a mean or median -- an aggregation of widely divergent points of unrelated data to create a trend, a projection, a rough idea of what may be an outcome.  So while lung cancer has manifold uncertainty in diagnosis, treatment and outcomes, the science used to categorize and project diagnosis, treatment results and outcomes is itself patently inaccurate.  Couple that with our societal impulse to believe headlines without investing time to study and question the body of a story and doom and gloom become the order of the day.  Of course the people in your life feel awful.  They believe you to be sentenced to death, and the execution date is right around the corner!

Let's reset our thinking about your situation.  You had a stage IV diagnosis. Your cancer was controlled by effective treatment. You stopped Tagresso because of toxicity concerns (a common reason) and diagnostics showed tumor growth, but not expansion (also common). Now you are back on Tagresso at reduced strength (common). Your doctor is checking for brain mets (common) and you are scheduled for a radiologist consult -- I hope this is a radiation oncologist.  Many Stage IV survivors who have successful first line treatment, like you, do see a radiation oncologist to see if it is possible to "spot weld" your tumors (spot weld is a term of art for frying tumors in multiple locations using precision radiation).  If it is possible, your likely outcome is NED (no evidence of disease)!  I'm a CyberKnife survivor.  I know many whose cancer has been eliminated after first, second and even third line treatment by precision radiation. So you should remain positive and instead of doing what you can to live with this, go live.

My faith in life is unshakable.  Perhaps this will explain.

Stay the course.

Tom

 

[Roz]

Judi,

So glad you found this forum. I have also found it extremely helpful to know there are others out there who have been there and who know what you are experiencing.

Good luck with the MRI!!

 

Ro

[Steff]

Hi Judi, welcome.

I hope that you have given yourself a big pat on the back for surviving your 1st year of cancer survivorship.  It's no easy feat - congratulations!  I understand needing support without the whole sympathy thing.  My mom has advanced stage lung cancer.  The looks on people's faces when they hear she is a lung cancer survivor gets old.  

I am so happy to hear that Tagrisso effectively shrank your cancer!  My mom is dealing a bit with toxicity/side effects from immunotherapy and is on a treatment break for the foreseeable future.  It's a scary time.  But the fact that you are back on it is so great!  And I am very happy to hear that your oncology team is looking at other ways to eradicate those nasty cancer cells.  I hope you find the support you are looking for here and look forward to hearing your future success stories.

Take care,

Steff

 

[LaurenH]

Hi, Judi,

This community is made up of empowered, experienced people navigating a lung cancer diagnosis - either their own or their loved one's. Please feel free to ask questions, share your experience, and join the conversations that resonate with you. We are all here for you!

With gratitude,

Lauren

[Rower Michelle]

Hi Judi

How did your appointment go on December 4th?

Hope you are doing well.  

Michelle