Susan Cornett

My mum spoke to her oncologist about her results of the CT scan and she's still clear! No changes. She's still NED. Next scan at the end of March. My mum is coming up to three years since her diagnosis. It will be her 3rd year cancerversary in Feb! 

Congrats on the NED to both Lou and Judy! I love seeing these updates.

June - 
It's great to see that doctors are finally taking aggressive steps for stage IV patients. I'm stage IV, diagnosed 6.5 years ago and NED for 4 years. I was fortunate (??) that my biopsy was negative and plans were made for me to have a lobectomy. Super Doc said that had they known I was stage IV, they likely would not have performed the surgery. I feel like I'm the exception, not the rule. Surgery followed by chemo, radiation, and SBRT gave me a fighting chance.
Please ask us anything. We're here to support you.
 
 

Hi Angel - 
As the others have said, you have a lot going on with this diagnosis and I'm sorry. Everything about this damn disease is so frustrating and scary and overwhelming.  It's hard not to be overwhelmed so please keep coming back to ask questions, vent, lean on us, all of it.

Judy - 
Congratulations! Such wonderful news!

Hi Angel - 
As the others have said, you have a lot going on with this diagnosis and I'm sorry. Everything about this damn disease is so frustrating and scary and overwhelming.  It's hard not to be overwhelmed so please keep coming back to ask questions, vent, lean on us, all of it.

Hi Angel - 
As the others have said, you have a lot going on with this diagnosis and I'm sorry. Everything about this damn disease is so frustrating and scary and overwhelming.  It's hard not to be overwhelmed so please keep coming back to ask questions, vent, lean on us, all of it.

UPDATE 11/1/22: I got my results yesterday, still NED as I expected. I have now graduated to 4-month scans (previously every 3 months)! I've gotten to the point where I can tell which radiologist read my scans. Each one has a different writing style. For the first time, "a few" apical nodules in my right lung were called out, the largest being 6 mm. I was only aware of the large one, but these nodules are all stable and are not worrisome. 
ORIGINAL POST:
Three years ago today my primary doctor told me that an Xray showed a 6 cm mass in my lower left lung. Lung cancer. You hear those words and your head starts spinning. But, she said, it's not a death sentence anymore. I knew nothing about lung cancer and really didn't believe her. 
I was referred to a pulmonologist, medical oncologist and radiation oncologist in quick succession. On Halloween 2019, my pulmonologist performed a rigid bronchoscopy to take tissue for biopsy and biomarker testing. The results were Stage IIIB NSC adenocarcinoma. 
It took time for the biomarker tests to come back in mid-November, and they showed an EGFR driver mutation. I still didn't know what that meant. 
November 2019 was a flurry of activity, seeing both oncologists, getting a port placed, getting dental work done and getting a bulk Teflon injection into my left vocal cord, which was paralyzed by the tumor. 
On December 3, 2019 I started the first of 6 weekly infusions of chemo (carboplatin and taxol) and 30 sessions of chest radiation. These treatments were not without side effects, and if I were to do it all again, I'd get a palliative care specialist on my team at the beginning. 
In March 2020 I started on Tagrisso for the EGFR mutation and have taken it daily since. My side effects are common and manageable. 
I never thought I'd make it this far but here I am 3 years later and NED. I found LUNGevity months after treatments ended, while I was still recovering. I wish I had found this wonderful community sooner, but better late than never. 
Coincidentally, I had my regular 3-month PET/CT scan this morning and will get results on Halloween. I don't expect there to be any changes. 
For anyone just diagnosed, I hope you'll learn as much as possible about this disease and all the modern treatments that are available. My doctor was right after all. I consider myself very fortunate that I have a great medical oncologist (even if he is a fan of the Phillies and Eagles) and the support of my husband, family and friends. I could not have made it this far without all of them and you! 

Well, had the gamma knife procedure done yesterday to the left temporal lobe of my brain. My lesion had grown from 3mm to the size of a pea but surgeon said it was still small and an 18 minute treatment should do the trick. I had a plastic mesh mask molded to my face. That was a little scary as I couldn’t open my eyes or have much movement with my mouth. I think anxiety got a hold of me for a bit but I made it through. I asked if they were going to sedate me but they said no. Glad it is over and hope that it does fry the lesion. I have a follow up mri in Jan and see the surgeon.

June - 
It's great to see that doctors are finally taking aggressive steps for stage IV patients. I'm stage IV, diagnosed 6.5 years ago and NED for 4 years. I was fortunate (??) that my biopsy was negative and plans were made for me to have a lobectomy. Super Doc said that had they known I was stage IV, they likely would not have performed the surgery. I feel like I'm the exception, not the rule. Surgery followed by chemo, radiation, and SBRT gave me a fighting chance.
Please ask us anything. We're here to support you.
 
 

Hi - 
The last treatment I had was in 2018 and was SBRT. I've been cancer free (as stage iv) for 4 years. That said, I'm going to respectfully disagree with the physician's wait approach for radiation. An old high school friend was diagnosed with stage IV after doctors found a spot on her hip. The radiation eliminated the spot and the pain she was having. Radiation can knock back/knock out the spot on your hip, perhaps even inhibit a return. 
Keep asking questions and pushing for answers. Also, definitely keep Michelle's insurance advice in mind. I'm a 31 year veteran of the industry; the squeaky wheel gets the grease. Always!
Please keep us posted and feel free to ask anything. 

June - 
It's great to see that doctors are finally taking aggressive steps for stage IV patients. I'm stage IV, diagnosed 6.5 years ago and NED for 4 years. I was fortunate (??) that my biopsy was negative and plans were made for me to have a lobectomy. Super Doc said that had they known I was stage IV, they likely would not have performed the surgery. I feel like I'm the exception, not the rule. Surgery followed by chemo, radiation, and SBRT gave me a fighting chance.
Please ask us anything. We're here to support you.
 
 

June - 
It's great to see that doctors are finally taking aggressive steps for stage IV patients. I'm stage IV, diagnosed 6.5 years ago and NED for 4 years. I was fortunate (??) that my biopsy was negative and plans were made for me to have a lobectomy. Super Doc said that had they known I was stage IV, they likely would not have performed the surgery. I feel like I'm the exception, not the rule. Surgery followed by chemo, radiation, and SBRT gave me a fighting chance.
Please ask us anything. We're here to support you.
 
 

Hi - 
The last treatment I had was in 2018 and was SBRT. I've been cancer free (as stage iv) for 4 years. That said, I'm going to respectfully disagree with the physician's wait approach for radiation. An old high school friend was diagnosed with stage IV after doctors found a spot on her hip. The radiation eliminated the spot and the pain she was having. Radiation can knock back/knock out the spot on your hip, perhaps even inhibit a return. 
Keep asking questions and pushing for answers. Also, definitely keep Michelle's insurance advice in mind. I'm a 31 year veteran of the industry; the squeaky wheel gets the grease. Always!
Please keep us posted and feel free to ask anything. 

I had my 3-month MRI this past Monday and saw the onc. radiologist today. There's nothing new to report-- YAY! The ring around the lesion they zapped is fading & breaking up. The little spots they are watching are so small they have a hard time finding them, but the head of the gamma knife program and my radiologist think they're probably just blood vessels. 
My pulse ox was 99! 
The conversation with her is always interesting. She says I've had a superb response to chemo rads and immunotherapy. But, I said, I had barely 25% of the protocol treatment for immunotherapy (Pacific Study.) She said they aren't terribly clear about how much immunotherapy it really takes to jumpstart the immune system. And, she also said she suspected the brain had already been seeded prior to any treatment. But, I said, it's my understanding that EGFR mutated lung cancer doesn't respond to immunotherapy. No, she said, according to Pacific Study treatment protocols, EGFR-positive patients had no difference in response than patients with non-EGFR mutated lung cancers. Which doesn't give you a complete picture because she didn't put her statement in context of total results, but it sounds nice. 
She also took a look at my most recent CT scans of the lungs The only thing to see is ongoing scarring from treatment and pneumonitis, and that may disappear or maybe it won't. 
Pretty amazing, right? I am feeling very, very grateful. 
 
 

GeoffR,
Welcome to our forums.  You'll find a lot of useful/important information here as well as many survivors that will share their experiences and learnings with you.  Growth in nodules are an important point of consideration when diagnosing lung cancer, so is a PET Scan.  But the key determinant is always the biopsy and that is where you'll learn for sure if these nodules have become malignant or not.  At this point you are still not diagnosed with cancer, so I'll hold off sharing information that concludes that you are.  Instead I'll share information you should know during the diagnostic phase of this journey.  It is called "Diagnosing Lung Cancer" and can be found in the Lung Cancer 101 section of our webpage and you can find it here.  In the meantime feel free to peruse our forums and you'll see a number of survivor stories that can attest to the fact that today Lung Cancer is not the automatic death sentence that it once was.  The initial response all of us has had was one of shock, disbelief and panic.  You're not alone with those feelings, but, if your biopsy does show malignancy, there is more hope than you would have thought possible.  Lung cancer treatments have come further in the last 5-10 years than in the previous 50.  So, consider the hope when you read the stories of others and do all you can to take care of yourself; physically, emotionally, and spiritually.  These things will be a clear advantage to you wherever this journey leads.  Fingers crossed for your biopsy to go well.  
Lou

Welcome Geoff!
Freaking out seems par for the course in our community. We have a scan and life changes, filled with a strange technical language almost no one understands. My best advice is to learn everything you can about this disease so you can ask terribly preceptive questions to your doctors. Here is where you can make a good start.
As for questions, tee them up. We are not physicians but understand this disease in a way few physicians appreciate. 
Stay the course.
Tom

Hi Rosie - 
I'm sorry about your diagnosis but glad you are here. This forum was the first place I turned after I was diagnosed. So much has changed over the last few years - so many new treatment options now. I was diagnosed with stage iv in February 2016 and had 2 recurrences. Treatment was rough but it worked. I've been cancer-free for 4 years now. I don't have kids so I can't truthfully say that I understand what you are feeling, but I am only child of an only child. My first thought in all of this was wondering who would take care of my parents. I cried, cursed, and had a few breakdowns along the way but I also leaned on others. That's why we're here for you - we've walked your path. Ask us anything. We're here for you.

Hi Rosie - 
I'm sorry about your diagnosis but glad you are here. This forum was the first place I turned after I was diagnosed. So much has changed over the last few years - so many new treatment options now. I was diagnosed with stage iv in February 2016 and had 2 recurrences. Treatment was rough but it worked. I've been cancer-free for 4 years now. I don't have kids so I can't truthfully say that I understand what you are feeling, but I am only child of an only child. My first thought in all of this was wondering who would take care of my parents. I cried, cursed, and had a few breakdowns along the way but I also leaned on others. That's why we're here for you - we've walked your path. Ask us anything. We're here for you.

Hi Rosie - 
I'm sorry about your diagnosis but glad you are here. This forum was the first place I turned after I was diagnosed. So much has changed over the last few years - so many new treatment options now. I was diagnosed with stage iv in February 2016 and had 2 recurrences. Treatment was rough but it worked. I've been cancer-free for 4 years now. I don't have kids so I can't truthfully say that I understand what you are feeling, but I am only child of an only child. My first thought in all of this was wondering who would take care of my parents. I cried, cursed, and had a few breakdowns along the way but I also leaned on others. That's why we're here for you - we've walked your path. Ask us anything. We're here for you.

Hi Rosie - 
I'm sorry about your diagnosis but glad you are here. This forum was the first place I turned after I was diagnosed. So much has changed over the last few years - so many new treatment options now. I was diagnosed with stage iv in February 2016 and had 2 recurrences. Treatment was rough but it worked. I've been cancer-free for 4 years now. I don't have kids so I can't truthfully say that I understand what you are feeling, but I am only child of an only child. My first thought in all of this was wondering who would take care of my parents. I cried, cursed, and had a few breakdowns along the way but I also leaned on others. That's why we're here for you - we've walked your path. Ask us anything. We're here for you.

Hi Rosie - 
I'm sorry about your diagnosis but glad you are here. This forum was the first place I turned after I was diagnosed. So much has changed over the last few years - so many new treatment options now. I was diagnosed with stage iv in February 2016 and had 2 recurrences. Treatment was rough but it worked. I've been cancer-free for 4 years now. I don't have kids so I can't truthfully say that I understand what you are feeling, but I am only child of an only child. My first thought in all of this was wondering who would take care of my parents. I cried, cursed, and had a few breakdowns along the way but I also leaned on others. That's why we're here for you - we've walked your path. Ask us anything. We're here for you.

Great news - congratulations!

I too have had some issue/aggravation with the N95 masks so I appreciate the info on the KN94. I have two trips coming up where I have to fly so I want to be prepared.

Great news - congratulations!