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Tbaker

Waiting.....

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I was diagnosed around the 23rd of March 2020. I've had 2 Ct scans back to back,waited around 10 days to get in to see a pulmonary doctor, he ordered a Pet scan around 7 days later. Then an appointment with the Thoracic surgeon  who went over the scan with us, unsure if I'm stage 3 or stage 4? 

Thoracic surgery set up a stress test, ekg now a pulmonary test. I have an appointment with him on the 23rd before my divinci biopsy on the 27.  My fear is... what if it was stage 3 and it has within this last month of waiting it has grown into stage 4? My cancer is in the right lung and in some lymph nodes the iffy is at the bottom of the lung next to the lining, if it has gone into that stage 4. Doctor said at stage 3 absolutely curable, stage 4 it is contained to the lung and is containable and treatable. 

Well if there is/was a chance of curable (stage 3)then why all the waiting? It is so hard to stay hopeful knowing that this thing is growing while waiting. 

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Tbaker,

Waiting is indeed hard. It was unbearable for me. Stage III can often be addressed with surgery. Mine was but after surgery mine showed up in the other lung. That was 16 years ago. We don't use the word cure here because lung cancer is so persistent and recurs often after successful treatment. I had four recurrences, but I'm still here and if I can live, so can you.

Here is something i wrote quite a while ago that is helpful to the newly diagnosed. As for waiting, it unnerved me to such an extent that I wrote a book about it. You can see a link at the bottom of my post and read about it if you are inclined.

I fundamentally believe a lung cancer patient's attitude toward treatment and outcomes is an essential component of success. Remain hopeful; there are so many new treatments and methods available now that many of us live long lives with our cancer being treated like a chronic disease. More questions? Ask away.

Stay the course.

Tom

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Hi, @TBaker. The waiting is the worst. I was identified as having a cancerous tumor the third week of Sept 2019. I finally got the offending lobe, the right upper, removed on January 30, 2020.

I, too, had the pulmonary tests to be sure I'd have enough good lungs left to breathe with. I had the PET scan as well which caused them to do a biopsy on my sternum (negative). I wanted everyone to be in as big a hurry as I was because I had CANCER. That was bad and I wanted it out of my body. I still need chemo, but that is a couple months off the way COVID-19 has gotten in the way.

By the way, I had plenty of lung left and I exercise my lungs every day.

Like Tom said, stay the course.

Best,

Glenn

 

Edited by G.A.M.

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Thank you. I passed my pulmonary test this morning. Now I keep getting the feeling of being scared and overwhelmed all rolled into one. This is a vicious cycle.  

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That's a good way to describe what your are feeling, the spiraling combination each and everyone of us experience in the beginning.  While we're thinking, let's get moving on this, the reality there isn't much urgency from the health care providers as   most lung cancers are slower growing, hence ALL that waiting.   The typical diagnostic phase with all the various tests and scans takes anywhere from 4-8 weeks.  Crazy, right?  It's better to have a comprehensive evaluation before starting the treatment because there are so many different types of lung cancer, each of them has specific approach.    Try not to bottle those feelings up, brighter days are coming.  

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Tbaker,

So many of us are waiting! It's definitely not easy when you know cancer is growing. 

All I can say is that we are all in it together. Sometimes, there just isn't anything we can do but wait!

I'm also waiting and waiting!!

 

Best,

Ro

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Thank you 😊

It's a hurry up and wait. I just need to get past this surgery and get moving on what's next, finding out what stage am I, ect, ect.

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Hi @Tbaker   The wait is the worst part.   Finding out what I was confronting and what’s next was a relief for me.  I hope your surgery gets here sooner than later.   

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Thank you. I'm scheduled for surgery on Monday the 27th. I'm sure I'll find out afterwards what stage I am. I🙏🙏🙏 pray🙏🙏🙏 for the best and know what needs to be done if it's not.... 

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My surgery is to take the lymph nodes and he wants a better look at the bottom of my right lung & the lining, pictures dont show well enough if it has penetrated through the lining or not, if it has that puts me at stage 4. I'm grateful that it was found before it had spread.  I'm mentally drained. 

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It is a draining experience for sure. Hang tough and best of luck on Monday.

Peace

Tom

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Praying that all goes well Monday.  Waiting is so hard.  

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Tbaker,

Good luck with your surgery tomorrow. There are many of us on this forum who are stage 4.

If you have questions, just ask. Remember there are lots of treatments out there. We will all be waiting 

to hear from you and how you are doing after your surgery.

 

Best,

Ro

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Diagnosis is not prognosis. Ro said it well, there are many survivors.  Today with the scientific advances lung cancer staging is for developing the treatment plan, not projecting the outcome.  The prayer warriors are hitting this hard! 

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Thank you for your response. These last few weeks have really taken a toll on me. Not to mention what it has been like for my husband or my 85 yr old father who lives with us. 

Tomorrow is surgery day. I'm praying for the best outcome possible.  

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Had biopsy on Monday I have nslc and I'm stage 4.have to have a mri to see if I have brain mets. I have a dr appointment for next Thursday with an oncology dr to discuss treatment. 

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Did you have biomarker testing done to see if you have any mutations?  Biomarker testing can drastically change your treatment plan.  NSCLC can be treated like a chronic condition.  Please don't give up hope, we are here to support you.

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Not yet. I will ask him about that today.  I found out Tuesday that it did go through the lining of my lung. I'm stage 4. I told the doctor I had already figured I was, I had that gut feeling. I have an appointment this coming Thursday with oncologist and a mri on Friday morning. 

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On 4/30/2020 at 9:26 AM, LUNGevityKristin said:

Did you have biomarker testing done to see if you have any mutations?  Biomarker testing can drastically change your treatment plan.  NSCLC can be treated like a chronic condition.  Please don't give up hope, we are here to support you.

Biomarkers are being done by the oncologist. I see him next week. 

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Just now, Tbaker said:

Biomarkers are being done by the oncologist. I see Biomarkers are being done by the oncologist. I see him next weekhim next week

 

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I’m sorry to hear about your diagnosis @Tbaker.  Finding out is scary.  Finally knowing what you are confronting and having a plan can bring some relief...and resolve.  There are good treatment options available.   Hang in there.   

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