Newly diagnosed nsclc stage 3 adenocarcinoma

[Josie]

Hi all, have tried to post before so apologies if this is a duplicate. This forum has been so helpful in guiding me through some difficult processes and emotions.

Im a 47 year old working wife and mum. On the day of dx my husband was due to celebrate retirement from the military after 24 years! We had so many plans. We live in England.

my story is long but wanted to share. In Dec 18 my slight cough started to bug me. Doc said pneumonia gave meds and X-ray. Showed consolidation. Two weeks no better more meds. By jan I knew it wasn’t pneumonia (no fever generally very well). Doc did initial examine, nothing wrong you’re probably anxious. I requested a second X-ray. Fortunately radiologist had suspicions and did a lateral X-ray. It snowballed from there. Ct, guided biopsy and pet scan later - 5cm primary tumour of right lower lobe, middle collapse and two suspicion mediastinal nodes. Didn’t meet anyone to discuss told I would get aggressive treatment. Requested a meeting with an oncologist- he said surgery would only achieve same results as his preferred method of chemo radiation followed by immunotherapy. A three year treatment plan with curative intent. I went on decline after that. A few sleeping pills later and an active inquisitive mind had me researching my type of cancer and the options for surgery. It IS an option but one not offered to me. I’m meeting a surgeon on Monday with a second opinion lined up. I’m learning very quickly that whilst these experts are very special and god knows where we’d be without them, I’m in charge of my destiny and need to make my own choices based on their knowledge. I know this, fear is the most debilitating factor in my journey so far.  Wondered if any of you lovely people are the same diagnosis as me or have any insightful info you can share. With much love, jo

[LexieCat]

Hi, Josie, and welcome.

I was Stage I, so I had only surgery, no other treatment, but from what I understand, with a tumor the size of yours, the usual course is to try to shrink it first with chemo and/or radiation first.  I think talking with a surgeon, though, is a great idea to find out what your options might be down the road.  Whether you have surgery or not, you will still likely have to have chemo/radiation and/or immunotherapy at some point.  Testing the tumor for biomarkers can determine whether you might benefit from targeted drug therapy effective against your specific cancer.

Glad you found us--this is a great place for information and support.  

[Irka]

Hello Josie,

I just joined.  My post name is "Irka." 

Please accept my sympathy over your diagnosis of this cancer.  In my case, I don't have a complete diagnosis yet but hope to get it this coming week.  It was enlightening to read your post -- what you've been through & how difficult it can be to get the full picture on treatment.

I'm 75-1/2 yo.  Although I quit cigarettes cold turkey & completely 20 years ago, prior to that I had been a long-term heavy smoker.  So,  I can be pretty sure of the cause!  But it's too late to change that.

I'd like to hear from you & communicate with you as we go down our paths with this disease.  You are so very young still -- but that could be in your favor in terms of successful treatment, especially surgery if it is indicated.  For myself, I simply cannot see surgery as an option.

Our situations are similar in that you got this terrible news just as your husband retires & both of you are looking to doing so many postponed & fun things together.  Ours -- we are moving into a lovely new apartment home in a retirement community April 9 in Lancaster, PA, where we grew up & have family & friends.  There are good cancer treatment facilities, but instead of lunching & general socializing with friends, I'll have to spend hours getting chemo and/or radiation therapy.

We've been through some of this, as my husband has prostate cancer (diagnosed 12/2013 with several treatments following).  He's been in remission since last treatments but will be getting check up in the next couple of weeks.  So there's anxiety about that, too.  God forbid he should have a recurrence at this time.  Simply don't believe we could deal with the both of us being that sick at the same time.  I've been his only caregiver since he got the PCa. . . he's gotta stay healthy to be my caregiver now!

All best wishes to you, may they find treatments for you that are effective & not too severe side-effects.

Irka

[Josie]

Lexiecat - thank you for replying. Yes, I’m keeping an open mind and have been offered duravilmab. It may be my only choice but I’d like to have all options explored. I was hoping for perhaps surgery if they can reduce it. We are very blessed to have a free national health service but it can be a postcode lottery. I’m generally a very together woman but there is nothing like this news to shatter everything. Never taken a sleeping pill in my life but thank heavens for them! Thank you again - I’ll try and keep updating regularly x

[Josie]

Hello Irka

thank you for sharing and I’m sorry you too find yourself in this shi##y club.

i think the not knowing for sure is so bad on your nerves - I’ve googled myself to death! 

Please, try not to be afraid of surgery - from my research ‘older’ people can cope just as well as the younger generation. These VATS procedures sound fantastic. Age in my opinion doesn’t make any difference to how a person feels about this diagnosis and shouldn’t preclude anyone from a decent quality of life. 

You’ve had a lot to cope with, I’m pleased things are looking a little brighter for your husband. 

Theres some inspiration stories on here about long term survival and the even ‘cure’. 

I will promise not to roll over, if you do?

im meeting a surgeon tomorrow and chemo starts Tuesday. Please if you feel able, update me on your results. I’ll be thinking of you. Much love jo x

[Irka]

Hello Josie,

How kind of you to write.  You certainly understand how I feel right now, not knowing what's what.  I hope very much to get a better defined preliminary diagnosis based on this chest CT.  I'm sure they'll give me more scans & some kind of biopsies.  Somewhere I read that lung cancer can be diagnosed preliminarily just from sputum.  Is this true?  And if so, why didn't my doctors just have me spit in a tube & check that out the way I did with Ancestry.com!!

Yes, we've been through quite a lot with my hubby's PCa.  He'll have his 6-month check up March 11, so that's another concern.  But we are hopeful he's still in remission.  If not, life for us will indeed become hellacious!

Indeed, I'll join you in making a promise not to roll over, so both of us can be on the same wave length in that regard!  And we can remind each other of our promise if need arises.

Please do let's keep each other posted.  It means a great deal to me!

Hugs, Irka

[Rower Michelle]

Hi Jo, 

Wanted to say hello and introduce myself.  Your diagnosis process looks a lot like mine.  I was diagnosed in September at the age of 51.  No one was looking for lung cancer.  I had nine PCP visits, two chest x-rays, allergy medications, antibiotics, steroids and inhalers with no relief from an increasing cough. Even cracked a rib.  A smart nurse ordered a CT scan and sent me to the ER where the scan-a-mania started.  I was Stage IV and totally shocked.  It took about two months to pull together the treatment plan.  Our forum friends here have been a rock of support.  This group has definitely been there, done that.  The fear response is totally normal and soon enough the good days will start to outnumber the "bad" days.  This happened to me when I had a better understanding in my treatment plan and confidence in myself to find the fight I didn't know was there. 

I saw some great advice early on-sometimes it's not about one day at time but one hour at a time.  I had to force myself off the internet and give a "cancer free break".  I'm so glad you found us (you too Irma!).  We're all in this together.  Time zones don't matter here.  

Michelle 

[Irka]

Hello Michelle,

What a nightmare that must have been for you -- hard to believe the hacking cough was overlooked for so long!

You're positive outlook & strength & determination you convey are most encouraging.

I'm annoyed right now because the oncologist's office is not getting back to me after saying they'd call this morning.  Guess I'll put a call in to them.  Won't hurt, I expect.

I am so sorry you at so young an age & with Stage IV.  Hopefully your treatment plan is well underway with good results.

Thanks for reaching out.

Irka

[Marycecilia]

Hi Everyone

So glad I found this forum ...this is my first post and my little story.

I first went to my family doc in May of last year with a chronic cough of 2 months.Was treated for post nasal drip and GERD related cough over the next 3 to 4 months with no improvement.Finally given antibiotics and had X-ray which showed pneumonia....another course of antibiotics and another CXR...still showing pneumonia.Over the next few weeks had CT SCAN and referral to pulmonologist...followed by bronchoscopy with biopsy. That was Jan 14....PET scan on Jan 30.Saw oncologist on Feb11 and having surgery soon.

adenocarcinoma stage 3a....67  years young..ha ha

so good to be able to talk to people in similar situations

❤️❤️❤️

[Irka]

Hello Marycecilia,

You've come to the right site, gladly & sadly, I guess.  I too am a newcomer.

It's good you've been diagnosed & surgery will be soon.

I'm still waiting to hear back from the oncologist.  My chest CT scan report looks very frightening, with 4 nodules showing, one of them in the left lobe.  That means both lungs and I can only guess chemo would be the first line of treatment for me.

At least I see my PCP tomorrow afternoon, so if the first recommended onc still hasn't called, I hope there's someone else I can try.

Good luck with the surgery -- may you get excellent results!

Irka

[Rower Michelle]

Hi Mary Cecelia, 

Nice to meet you!  Jeepers creepers, I had the whole GERD thing too.  My PCP wanted to prescribe Nexxium and hubby emphatically said NO.  We've been so strict about our diet as athletes,  we knew this was not possible.  As far as I'm concerned I've consumed enough Flonase for a lifetime and don't ever want the stuff again.  I hope that your surgery goes well for you.   There have been so many advances in lung cancer, for the first time in thirty years, there's so much hope on the horizon.  I'm sorry about the diagnosis and glad you are here.   Please keep us posted. 

Michelle 

[Marycecilia]

Thanks,Rower Michelle,

I will keep posting on my journey....and I really like your comment about the good days outnumbering the bad...I’m looking forward to that...just want to get started on this battle...I’m ready!!

[Marycecilia]

And the best of luck to u as well,Irka

[Irka]

Thank you!

[Tom Galli]

Jose, Irka and Marycecila,

Welcome here.

I was diagnosed stage IIIB, non small lung cancer, squamous cell in February 2004. I've had every form of treatment possible but immunotherapy and the very good news is 15 years later, I'm still here! So, if I can live, so can you.

How does one survive lung cancer -- one treatment after another.  In my history, I had 4 recurrences after no evidence of disease (NED) producing treatments. 

Here  is some very useful information on a number of topics that you are likely interested in. I think you'll find this is a good place for questions.  We are not doctors but very experienced survivors and care givers.

Stay the course.

Tom

[Irka]

Thank you, Tom!  Obviously you've been through a lot with treatments, but what fabulously great outcomes!  I have see a lung oncologist tomorrow.  At least I hope to get some clarification on this initial chest CT & learn about next steps & options.  So hard to keep my spirits up.  You & others on this site are & will be a great help.

I'll do my best to "stay the course."

Irka