New Diagnosis of NSCLC

[kelybe]

Hi All!

 

I'm so glad to hear about this forum and the potential to connect to others who have an understanding of this diagnosis.  Three months ago, I was a happy, healthy 42 year old university professor with terrible back pain.  The week before Christmas, I was shocked to discover that the pain was actual a bone mets to my hipbone.  I would find out later, on Christmas Eve no less, that it was lung cancer and I was told I had four years or less to live.

 

Since then, I have found a new treatment team who seem to be more optimistic.  I have adenocarcinoma, EFGR+ and only a small lung tumor with the one mets to the hip.  The hipbone has been treated through aggressive radiation therapy and I am scheduled for surgery to remove the lobe of my lung with the tumor.  After, I will take Tarceva and Gilotrif.

 

Overall, I feel I have adjusted quite well.  It has weirdly been a crash course in gratitude for all I have in my life and I have been showered with love and support.  My treatment team is wonderful and despite fighting (and losing) with insurance, my treatment has been rather easy up to this point.  But there are two things I am struggling with a bit:

 

1)  While I am optimistic about my future and hopeful about treatment, everything I hear and read about this diagnosis, stage IV lung cancer is so very bleak, it is very hard not to view it as something of a death sentence.  I'm wondering how others have dealt with that.  I'd also love to hear survivor stories.

 

2)  I'm dreading my surgery, but even more so the targeted therapy.  I'm grateful I'm able to take it and avoid traditional chemo, but I already developed a horrible rosacea breakout/rash all over my face I'm assuming from radiation (Did this happen to anyone else?) and have heard nothing but horror stories about Tarceva.  I work with the public and am dreading side effects like a rash I can't cover and potentially losing my hair.  Has anyone NOT had these side effects?

 

Thankful to have found the site and welcome some positivity, connection and stories of success.  Wishing you all health and happiness!

 

Kerry

[Tom Galli]

Kerry,

 

Welcome here.

 

It is hard to read about survivor statistics.  But, cancer survivor statistics are a very imprecise predictor.  Consider, the statistical inputs for each person newly diagnosed are: type, stage, age, sex and race.  No information is captured on a person's general health.  Moreover, when someone in this pool dies, there is rarely an autopsy to determine cause of death.  Indeed, one might be hit by a bus.  So there is a lack of precision on both ends of the statistical cycle: input and output data.  This explanation is not to criticize the medical community for their adherence to statistical principles, but rather to point out the difference from a statistical prediction and reality.  You are one of hundreds of thousands in the US who were diagnosed with stage IV adenocarcinoma.  A statisticians job is to aggregate (combine) and explain.  But the output, a prediction, may not necessarily apply to you because you are one of the variables being statistically analyzed and the prediction applies to all of the variables.  There could be a vast difference between your outcome and your statistically predicted outcome.  There was with mine.  Check my profile for my survivor story.  Also, listen to Stephen Jay Gould's essay The Median is not the Message - here:  http://www.youtube.com/watch?v=cH6XuiOBbkc 

 

My Tarceva rash made me look like a zombie with terminal acne.  I took it in combination with Taxol Carboplatin which claimed my hair so my head, face and neck looked like a creature who crawled out of a swamp.  I led a multibillion dollar proposal team while on Tarceva and had to "suit up" and make many customer presentations.  We won the competition so my appearance didn't matter.  People get cancer.  They undergo treatment.  I think my customers knew of my malady (bald with no eyebrows or eye lashes were a big tell) and respected my attitude to soldier on.  That indeed is the point - your attitude toward treatment and outcomes - not what other people think about your appearance.  In my day, physicians didn't realize that Tarceva didn't work on my type of NSCL squamous cell lung cancer.  So I was burdened by all the side effects without any benefit.  But, I am still here!  And I am here for a reason!  Two influential people convinced me that my attitude towards treatment and outcome was essential in arresting my disease.  Consider, the most important side effect of cancer treatment is extended life.  I believe the length of extension is directly proportional to the firmness of belief.  Focus on the most important side effect - extended life.  Believe, strongly believe, tenaciously believe your treatment will achieve extended life.

 

Stay the course.

 

Tom 

[bjacksontex]

Kerry, if you want to hear hope, Tom is one of the best for Stage 4. And others too will hopefully share their stories. They found mine at stage 1a, so I'm different. But you found a great place.

Sent from my iPad using Tapatalk

[eric byrne]

Hi Kerry,Welcome to LCSC,I am sorry to hear of your dx.I did start to reply to your post yesterday,basically in response to your request from members here to share their survivor stories with you.Before posting my response I re-read it and thought it a bit long winded,possibly enough to bore the pants off you,so I binned it to rethink a new response to you.I have decided to try an alternative approach,looking back over the time I have been a member here,I have had similar requests from new members to share their survivor stories,so I looked back at the members archive here and found one of my replies which I think you may find interesting.I am copying and pasting into this reply.Here goes-

 

                 Sorry about the time it has taken me to reply to your posts,I dont have the same access to the internet I used to have.I am a seven year survivor of NSCLC,fully restored to health following chemo and surgery in 2008/9.I have recounted my friends story here a couple of times over the few years I have been writing in the LCSC forums,I think it would be of benefit to you to share it again.

       Following the completion of my treatments for cancer in January 2009,I was searching for some kind of re-assurance that there were survivors of lung cancer out there somewhere,my initial search was not very successful it seems the internet was not really a good place to research LC survivor rates.One day I picked up a popular Glasgow evening newspaper called,"The Evening Times",in it, I chanced upon an article about a guy called Robert Lowe,he was about to start up a lung cancer support group with a lung cancer nurse called Penny Downer in a local hospital called Stobhill General.Well I did permit myself a smile over the irony of a lung cancer support group being founded  persons called Lowe and Downer.

     Robert's story was fully described in the article,in 1993 he was dxd with SCLC,his prognosis was'nt good,two months, his doctors projected,Robert asked for the strongest chemo he could be prescribed to at least give him a chance at life.The regime chosen by his medical team required Robert to be hospitalised during his chemo administration,Robert's reaction to his chemo left him so poorly that on more than one occassion his family were called to his bedside as his Docs did'nt think he would see the next day.Remarkably,Roberts situation improved,and steadily he regained all his strength,enough to allow him to be discharged from hospital.Robert returned to full health and enjoyed living his life as he did prior to his dx.In 2003,he was then dxd with NSCLC, again he received treatments and went onto recover fully.

       I was absolutely astounded reading Roberts story,I just had to meet him and I did,I joined his lung cancer support group,also meeting up with Penny and many other lung cancer survivors.Remarkably,Robert and I shared many things in common,we were born and brought up in the same district in Glasgow- Springburn,we went to the same schools,despite Robert being ten years my senior we even shared many of the same school teachers.Meeting Robert was a real turning point in my life,I had found a new confidence that I can survive this disease,my mood improved I found a new life energy. I returned to my lecturing post in a Glasgow College of Further Education.I can share with you my first day back at work,after a absence of nearly six months,I entered my class,my third year students were having a lecture given by one of my colleagues,when I entered the classroom,there was a silence momentarily,until one student enquired if I had dropped by to visit. Well no, I replied,I am here  now to take over this lecture,as my colleague left the room to allow me to continue,my class gave me a huge round of applause,gosh,even now I can hear it, it can still bring a lump to my throat.

       Robert went onto live for almost 20 years with lung cancer,apparently he became the UKs longest survivor of duel SCLC and NSCLC. Robert sadly, passed away a couple of years ago,cancer free.I have appreciated every minute I had spent in his company.

     I do of course wish you every bit of Roberts success with his cancer Debbie,I know its a hard road but I believe you have the strength and the courage to beat this.

     Best Wishes.