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Grim Initial Oncology Visit


CH29

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I went to my 45 year old husband's initial oncology visit after learning he has suspected lung cancer (adenocarcinoma) that has spread to liver and likely spine as seen on a CT scan.  He ordered a pet scan for later this week.  He was so blunt and said this is Stage 4 and non-curable, although my husband definitely wants to do everything he can to treat it to extend life as much as possible.  I'm still in shock because my husband has never been a smoker and has always been so healthy with no family cancer history.  We just have to keep some hope, this is so much to comprehend.  Thanks for letting me get this out, we are just praying for the best.

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I was diagnosed in March of 2015 with Stage IV (incurable) Lung Cancer that had spread to my brain.  Today, I am NED (No Evidence of Disease) and will celebrate my 7th Cancerversary in March of 2022.    

There are great advances that have been made in Lung Cancer Treatments over the last 5 years and more and more people are living longer.   I can' begin to express how much it pains me when I read posts like yours.   I wish so much that more oncologist would offer newly diagnosed patients more HOPE and not be so grim.  That is one of my greatest Pet Peeves.   PLEASE do not hesitate to get at least one second opinion and look into ALL his treatment options!  

I wish you and your husband the very best and HOPE he will do with with treatments.   I'm happy to know he intends to fight and wants to do his very best to beat it!

Lung Cancer strikes all, it is not solely a "smoker's disease) and we are working so hard to share that with the world!   

     ~Lisa

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Hi and welcome to our forums.  You and your husband have had quite a shock for sure and your heads must be spinning.  All of us here have had to go through this and fully understand what you are feeling.  For all of that distress, anxiety and pain I'm sorry.  Let me see if I can cover a few things for you.

First, you don't need to smoke to get Lung Cancer...over 20% of LC occurs in people who didn't smoke, so it is more possible than you thought.  Family history may play a role in the probability of getting a disease or not, but is rarely a definitive predictor of the future.  You'll need to get all of the testing done including PET Scan, bloodwork, biopsy and biomarker testing before your Oncologist can give you a more definitive diagnosis and prognosis.  It will likely be stage IV based on tumor number, size and metastasis, but only when you get a full set of data can you sit with your doctor and discuss the treatment plan best suited for your husband.  LC used to be a pretty definite death sentence, but now there are more folks surviving longer with No Evidence of Disease (NED) or with the the disease being treated like a chronic condition.  My coaching is to get all the testing done and ask all the questions you can as well as getting a second opinion.  Trust me, once you have a game plan to go forward with, you and your husband will feel better.

In the meantime, I'd like to suggest you read and then share with your husband, "10 Steps to Surviving Lung Cancer; by a Survivor".  It was written by a member who, 18 years ago, was diagnosed at stage III and today is considered cured.  It contains a lot of practical and insightful information for people new to this process and it can be found here

Please stick around here and ask questions as they come to your mind, there is a great group of folks here with amazingly varied experiences that can help you both navigate this new and difficult journey.

Lou

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Hi and welcome. My first meeting with my oncologist (aka Super Doc) was in the hospital and just him getting the facts. The first office visit? I walked out in tears and nearly passed out from fear. During that first meeting, he provided me a printout with mortality statistics. Horrible numbers. I took a few days to process everything as I had lots of appointments and scans and started down that path. Now, nearly 6 years (!!!) after my stage iv diagnosis Super Doc and I have an agreement - he doesn't give me stats on anything because I think they are crap. 

It's tough at the beginning and overwhelming and emotions spiral. But, as Lisa noted, get another opinion, look at all options. You and your husband will have to be advocates for his healthcare. Between appointments is when you'll think of all the questions you wish you would have asked. Write them down so you have them for the next appointment. Ask for help. Ask questions. We're always here.

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Hi CH, when I was diagnosed at Stage IIIB by my primary care doctor in October 2019, she told me that lung cancer isn't a death sentence anymore. I didn't believe her at the time because I knew so little about the disease. I've learned a lot since then.

Everyone has already given you great advice and encouragement. I particularly agree that a second opinion is a good idea. 

My oncologist is a very compassionate doctor. It's helpful to have that quality on your team. He has never given me grim statistics or a prognosis. He says I'm an individual and not a number. He hugs me when I get great scan reports. 

Today after chemo, radiation and currently taking a targeted therapy, I have been NED since April 2021. Reaching NED is possible for Stage IV folks. Hang in there and we are here to help you learn. 

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