Introduce myself

[Susan D]

A little over a year ago I was diagnosed with stage 3 lung cancer (I think I’m considered stage 4 now). Had radiation and chemo, followed by surgery in October 2017, followed again by chemo. A new spot was found in my other lung in February. This one was treated with radiation and now immunotherapy. I’m 58 and actually pretty healthy otherwise and don’t feel bad. I’m getting back to my old life, slowly but surely. I’m joining this community because I want to hear how others are doing. I’ve met one person who is a lung cancer survivor. He wasn’t terribly positive. I want realistic expectations but in a positive way. 

[LexieCat]

Hi, Susan,

Well, if you're looking for positive and realistic, you've come to the right place!  Just wanted to welcome you.  I was lucky enough to be diagnosed very early, through a screening program due to my smoking history.  So I don't have experience with chemo (or other drug therapies) or radiation.  We have quite a few long-term survivors here who have, though, and they will be along shortly.

Really glad to hear you are feeling well and working on LIVING.  No reason not to--you could be around for a very long time, and no reason to wait around for doom to fall.  

Glad you found us!

Teri

[Tom Galli]

Susan,

Welcome here.  

Let's start with realistic expectations. You haven't told us of your type of lung cancer but I'm guessing NSCLC.  Is it adenocarcinoma or squamous cell?  You've had a recurrence and that is disappointing but recurrences in lung cancer are, unfortunately common.  I had five in the course of my treatment.

Now for the positive stuff.  I'm a 14+ year survivor of Stage IIIB NSC Squamous Cell Lung Cancer.  It took three years of near constant treatment for me to achieve NED.  Diagnosed on February 4, 2003, a newly emerged precision radiation technique (SBRT) fried the chemo-resistant tumor in my sole remaining lung.  On March 7, 2007 I was again NED and have been so ever since.  The most positive thing I can say to you at this point is if I can live, so can you.

Hang around and get to know us. We are either survivors or caregivers and collectively have a unique understanding of our disease, its treatments, and its troubles.  We won't pull punches. You'll have another course of treatment and that sucks but there are so many more ways to treat our disease today.  Expectations are high because outcomes are vastly improved.  One example of new ground breaking treatment -- read about the very exciting work underway at the National Cancer Institute.  And as a Maryland native, their hospital is right around the corner from all but the very western part of your state.

Stay the course.

Tom

[Steff]

Welcome Susan!

Like LexieCat said, this is the right place to come if you want to be uplifted and meet survivors!!! That was one of the reasons I originally joined when my mom was diagnosed with her lung cancer recurrence. My mom is on immunotherapy too...Keytruda. There are a few other active folks on here that have experience with immunotherapy too.

I'm glad you found us!

Take care,

Steff

[BridgetO]

Yep, Welcome from me, too! You're definitely in the right place here. I second everything Tom, LexieCat and Steff said and don't have much to add. I'm a survivor of Stage 1A NSCLC, which was discovered in a routine every-six-months CT scan to watch for metastases from a different (non-lung) cancer that was Stage 3. So I do have experience with chemo and radiation, but not for lung cancer.  

Bridget O

[Donna G]

Welcome Susan ,  so glad you found us.  You have now met more lung cancer survivors !   

I was diagnosed Stage3 on December 3 , 1997.   Like you I started with chemo and radiation, had a lobe of lung removed 

and then had more chemo.  Here I am nearly 21 years later talking to you.  Back then they did  not test for much that they can now.

When will they do a scan again to see how you are doing ?   Hope and positivity is a good thing for sure.  Please keep us posted on

how you are doing.

 

Donna G

[eric byrne]

Hi Susan,Welcome to LCSC,sorry to hear of your dx,this Oct will be my tenth anniversary of my dx of Lung Cancer.My particular type of cancer is NSCLC (squamous),staging is not something that was discussed with me by my oncologist,perhaps its a Scottish trait?we dont obcess about staging here.Reading up on Staging I can guess I was probably 2A? since I had local spread to my lympth nodes.My treatment included neo-adjuvant chemotherapy,4 cycles of cistplatin and vinorelbine,followed up by a upper right lobectomy in January 2009.Since then I have had no further treatments.In Scotland we have 6 monthly check ups for five years.Unlike the USA we dont include CT scans for our check ups just a X-ray and general health check.On my last check up,my Doc the very one who told me I had lung cancer 5 years previous said to me "Eric,I have checked over all your test results and I can tell you there is no sign of any cancer in your body,I would go as far to say with confidence,you are cured,now go away,I dont expect see you ever again.We shook hands and parted as friends.Today I am enjoying life to the full I like to say Lung Cancer certainly rained on my parade but every cloud has a silver lining,becoming a advocate for lung cancer here in the UK has allowed me to meet some wonderful people in my travels speaking at various lung cancer events,also I have appeared in newspaper articles and been on local and national radio a few times,I have even appeared in the Scottish Parliament or Assembly as it is known,talking to SMPs about lack of funding for lung cancer.A few years ago when I retired I decided to go on a tour of the USA on Amtrak,the tour lasted seven weeks through the assistance of Katie here, I kept a daily diary of my journey in facebook and also posted my photographs too.You can catch up with my journey in my website Travelling Eric.I have also attended two LUNGegvity Hope Summits in Washington DC that allowed me to meet up with survivors I had been sharing posts with here in LCSC for some years,what a thrill for me that was me to actually meet up.Hope Summit also allowed me to meet up with new friends too,I can recommend attendance to a Hope Summit to you.

Susan, My wish for you is you share in my success with your treatments and that you have many many years to enjoy a full healthy and happy life.

As we say in Scotland "Lang may yer lum reek".

Best Wishes,

Eric.

 

[BridgetO]

Great to hear your story, Eric! I hope to meet you and Susan D, too at a Hope Summit one of these years. It's really a great event. This year I went and met Tom G, LexieCat, and Steff (and Steff's mysterious  mom, Deb, as well as Lauren and Katie from the staff. I don't know which was better, meeting all those folks from these Forums in person (plus lots of other inspiring survivors and caregivers) or finding out about all the new lung cancer treatments that are available or being developed.

Bridget O