Another newbie

[Sabacat]

Hi all -

Yet another newbie here.  I’ve been lurking a bit and have been astonished at some of your success stories!  That said, although I keep telling myself it will be possible for me, too, I’m terrified.  And the constant waiting for test results is making it worse.  Here’s what little I know at this point.  I’m 65, have been healthy as a horse for my entire life with the exception of being diagnosed with Barrett’s esophagus about 7 years ago.  I then promptly did everything I was told (gave up the coffee that I drank by the pot, not a cup, no carbonated beverages, drank only herbal tea, etc) and my next 4 scans showed no Barrett’s pathology. I did continue Dexilant because I still had symptoms and occasionally had to do a few weeks on double if I had a flare-up.  In April, I had a bit of cough - common with a flare - and the increased med helped.  But when I went back to normal dose, it got worse but still occurred at times when I had just eaten or was bending over —again consistent with GERD/Barrett’s.  Then, in late June, my ankles started swelling.  First concern was DVT, but none found.  A week of Lasix didn’t fix it, so off to a CT angiogram... and then the bottom dropped out.  Initially seen was a 3cm mass In right lung and a few lymph nodes.  A few days later, the PET showed more lymph nodes, one at the collarbone which I’m told makes it stage 4, plus a small node on the Left adrenal.  We decided to go to Duke, where we lived and received care for many years and always have returned for anything serious.  They drew off a lot of pleural effusion but were unable to use it for testing purposes; did do a brain MRI which was, thankfully, clear.  Oncologist seems sure it is NSCLC, not sure why.  He also thinks the pleural effusion is malignant, although they couldn’t fined any cancer cells in it.  I’m back there now tomorrow AM for biopsy of the easy to reach lymph node, after which we have to wait till 8/21 for all the molecular testing to be in so we can meet with the oncologist to discuss treatment plan.  Oh, and today their radiologist reviewed the PET (done elsewhere) and seems to be interpreting differently, mentioning something about the bronchus.  And the original 3cm mass was not visible on my late October X-ray, so seems to be moving very fast, which makes me quite frantic about waiting around doing nothing for another two weeks.  My husband is 83 - also healthy - and I can’t bear the thought of not being there when his time comes. With a 17 year age difference, we never imagined such a scenario.  I am very tough and strong-willed and willing to do whatever I have to.  Do I have a chance of beating this based on your collective knowledge?  Truly trying to maintain a positive outlook but all these unknowns make it nearly impossible.

Susan

 

[BridgetO]

Hi Sabacat and welcome.

It's normal to be terrified. The waiting is the hardest part. Once you have all your test results and an initial treatment plan,  Many/most people find that it starts to become easier. and positive outlooks become possible.

Your 3 cm mass may not be growing as fast as you fear. X-rays are not very good at "seeing" lung nodules or masses. So it may well have been there earlier than October. You definitely have a chance of beating this cancer, or at least having it reduced to the status of a chronic illness that you can live with. As you can see from reading people's stories on this forum, there are a have been a lot of  new treatments for lung cancer for lung cancer developed in the last few years, and more are being approved all the time. So older statistics, usually based on 5-year survival rates are not very useful. You'll also see on here a bunch of stage 4 survivors who are living with cancer and having good quality of live. So hang in there. There is hope and being tough and strong willed will definitely be a plus

Keep us posted and ask whatever questions you have. We're here to support you.

Bridget O

 

 

[Tom Galli]

Susan,

Welcome here. Bridget's offered cogent advice. We are survivors and you'll join our ranks. In your exploration of our site, you've likely noted more of us are hanging around for longer periods. Lung cancer treatment has dramatically improved in the last 5 years. Here is something I typically share with new folks.

Questions? Although we are not physicians, we have deep experience on every facet of lung cancer treatment. So ask away as you move through the diagnostics trail into treatment.

Stay the course.

Tom

[LexieCat]

Welcome from me, too!

I'm in sort of a similar boat right now, three years after a lobectomy for what was, at the time, very early stage. My last scan and a followup PET CT suggests I've got some pretty significant involvement at this point--appears to be Stage IV but I have a bronchoscopy for biopsy on Monday, and I'll also be waiting for pathology results and molecular studies to determine a treatment plan.

I've been around these forums for three years, and you will find it a GREAT place for information and support (and, believe it or not, a few laughs--I've appointed myself deputy in charge of comic relief).

Glad you found us.

[Tom Galli]

Susan,

Point of clarification: Lexie is not the deputy; she is CINC (Commander in Chief) comic relief!

Stay the course.

Tom

[Lin wilki]

Fear of the unknown creates  great anxiety. Once you get your diagnosis and a treatment plan everything settles down. You just get going on the business of dealing with treatment and LIVING!

Good luck to you and know there’s lots of folks here who have been where you are and are here to support you

[GaryG]

Hi  Susan: Welcome to the site. You already made a great decision by joining and reading . We all had 2 things in common beside cancer.  First  we were terrified, second we were even more terrified because of the wait involved. Personally i share a similar story with the coffee even though I did not drink as much. Not drinking coffee will help you with side effects especially if you are on a Proton-pump inhibitor. 

Like Tom said (and we he talks people listen) there are many new effective treatments  for lung cancer and hopefully your medical team will put you on the right track.

Welcome to our site and we are here eager to help. 

Best of luck.

[LouT]

Susan,

Welcome to our site and hang in there madame.  You really need all the test results before the doctors can tell you exactly what you are facing as well as what the treatment plan will be.  We are a very diverse group from people who were diagnosed at Stage 1 to Stage 4 and collectively it would be hard to find a treatment we had not been experienced with, so you are in a good place here for us to support you on this journey.  I am a person who "catastrophized" my LC diagnosis and it was the people here who shared their stories, told me what to expect and reduced my fear dramatically.

At this point stay calm, you have suppositions based on data, but not a comprehensive diagnosis.  Once you have that and a treatment plan you will find yourself feeling more calm than you are now.  We have all experienced the same thing, so please know you're not alone and that many here are survivors of all stages and you can be too.

Lou

[Sabacat]

Wow!  What a wonderful group!!  Thank you all so much for your warm and hopeful replies!!!  At first, I had found nothing but depressing and discouraging information on-line -- to the point that my husband begged me to STOP looking ... until I found this group.  You all are amazing and your messages are so uplifting.  I am a natural control freak, so the not knowing and endless waiting - first to get tests scheduled and then to get results --  have been VERY challenging for me.  I am sure that you're right that it will be a lot easier once there is a plan in place and some actual useful action is taking place.  We just returned from the trip to get the core biopsies of the easiest to reach lymph node (easy peasy!), so at least something useful done today.  Now comes the 16 days (but who's counting?) until we meet with the oncologist and find out what he has learned from all the data and what he is recommending.  Oh, and a repeat echocardiogram on Tuesday to see whether the pericardial effusion has gotten any larger.  I'm really crossing whiskers on that (since I'm a crazy cat lady) as I'm not looking forward to having that drawn off, but also because knowing it's there is making me a bit more cautious with my walking and exercise routines just at the time that I want to do MORE so I can get in the best shape for the fight.  

Feeling much better already thanks to you all! 

Susan 

 

[Steff]

Welcome Susan,

I was a lurker too, for a few months!

I think you are asking the question that all of us have asked when diagnosed with lung cancer - will I make it? To me, you have one of the most important things to help your survival no matter what the tests reveal - being tough, strong-willed and willing to do whatever you need so you can spend more time with your husband.

During my mom's nearly 5 year battle with lung cancer, I have watched her struggle and I have also watched her persevere.  I see she struggles more during her moments of exhaustion and diminished toughness.  And when those moments are over and her toughness resumes, she once again perseveres.  While treatment for lung cancer is necessary for recovery, I believe that your attitude has just as much to do with your survival.

So, do you have the chance of sticking around for a long while? Yes - just be sure to watch out for buses, lightening strikes, etc 😁   lol

Take Care,

Steff

[Rower Michelle]

Hi Susan,

Just wanted to pop in and say hello, you’ve already met a big part of the family here.  We can relate to what you’re going through.  Bottom line waiting and diagnostics stink.  Actually, the molecular testing results are coming back “fast”.   I was diagnosed Stage IV  NSCLC in 2018.  I had to wait a month for the testing to come back.  In fact, with plural effusion, we couldn’t wait for all the testing.  I had one round of the triplet chemo/immunotherapy to knock some of the cancer down.   Initially the diagnosis was pretty grim and here I am two years later, doing well on targeted therapy for the ALK mutation.   
The group here is right, the internet is bad news, all the data is outdated.  Diagnosis is not prognosis.   Let us know how it goes over the next few steps.  
Michelle

[jack14]

Welcome aboard Susan. I can't think of anything beneficial to add. These folks are angels and they have provided comfort to me, we are definitely stronger together.Like you, I was anxious about waiting for the tests to come in so that a plan of treatment could be planned. Hang in there, Duke is superb.

jack

[Lisa Haines]

Dear Susan,

   I too am a Stage IV NSCLC Survivor (now 5 1/2 years in, stable and living life).  I do remember very well exactly how scared and overwhelmed I felt when I was first diagnosed.  I ended up with a Brain Met and that's how my cancer was found, when it suddenly caused Neuro changes.    An urgent Head CT found the Brain tumor and I spend the next week in a Neuro Unit having all kinds of testing done - turned out it was a met from Stage IV Lung Cancer and I begin treatment a few weeks later.    I had to treat the Brain Met first and that was done by Stereotactic Radition and was totally successful, but just having had a brain tumor was a very frightening experience, especially because it came on so suddenly and within two days I lost my speech and the use or my right arm/hand and have a lot of edema in my brain.  Thankfully, the Neurologist put me on high doses of Dexamethasone (a steroid) and once that started to take effect, I was very lucky and regained use of my speech and right arm/hand.  They also found I had a Pulmonary Embolism and put me on blood thinners that I will now be on forever.   I had NO warming or symptoms of Lung Cancer and it was a total shock.  Exactly 4 weeks before this, I had routine hip surgery and ALL my pre-op labs and chest xray were fine?  One day after surgery I developed a sudden high fever, at first they thought it was the Flu, but I was negative, so they did more chest xrays and said I had post op pneumonia (still no suggestion) or any sign of Lung cancer, despite a total of 5 chest xrays.  They found the Lung Tumor, only by CT scan when I was admitted for the Brain tumor.  I also never had any symptoms from the Pulmonary Embolism and was quite lucky they found it and treated it effectively.

   The way you feel now, is HOW we all have felt and for those of us who have gone through a later progression those same fears all creep back in.  I still have terrible "Scanxiety" each time I go for a scan, despite now being Stable and Off all treatment for over 4 years.

   Please know you are NOT alone, and we all care and understand.   You've come to a great place for support and LUNGevity also have a lot of wonderful resources on their website.    I do hope you'll have all your final test results soon, so you can move forward.  For me, knowing exactly what I had and what we were going to do to treat it, gave me a feeling of relief.   Once I did move forward and started treament I felt much better.

     Wishing you the very best....

     Lisa

[Sabacat]

Thanks, Lisa!  I can't imagine having a brain tumor AND an LC diagnosis at the same time -- that must have been BEYOND frightening!!!  I can't tell you how comforting it has been to hear from so many of you who are doing well MUCH longer than I dreamed possible when we first got this news.  This is definitely a wonderful place!    Hoping that a repeat echocardiogram tomorrow to check the status of my pericardial effusion will come back at least no worse than 2 weeks ago, then no more tests until, hopefully, a treatment plan on the 21st. 🤞 In the meantime, I feel so much better just being here.  😻

[Lisa Haines]

Susan,

   You are very welcome and I'm happy to know my experience has provided you some encouragement.  There are MANY long-term LC survivors or who living long lives and the treatments have increased greatly over the last 5 years.  Believe me, at the time of my diagnosis, it was pretty grim and at that time (before Immunotherapy) the five year life expectancy was pretty alarming, but I never focused on that and was determined to beat it.   I also had an amazing Oncologist and she never tried to put a time frame on my life.   She said for day one that while we may not "currently" have a cure, we have treatments and I will continue to use any and all treatments available for you.  I adored her and feel she saved my life.  Unfortunately, she moved away for a wonderful career Op and is not more into research, but we will email and IF there is anything I have questions on, I still reach out to her. 

   We will look forward to hearing from you and will be her to continue to offer support -- the people here are wonderful and LUNGevity is a very special group.  I feel very fortunate to be a part of it.

     Lisa

[Judy M2]

When I got my surprise NSCLC diagnosis in October 2019 (Stage IIIB), I figured I'd better get everything in order for my early demise at age 66--even though my PCP told me it wasn't necessarily a death sentence these days. I had 30 sessions of radiation, 6 rounds of chemo (carboplatin and taxol) and completed treatments on 1/15/20. I started on Tagrisso in March and my July PET/CT scan shows "continued positive treatment response", with lymph nodes decreasing to borderline hypermetabolism, pleural effusion almost resolved and tumors shrinking. And I feel almost back to normal. After reading the survival stories of contributors to these Lungevity forums, I've now changed my outlook to this lung cancer being a chronic disease to be managed by treatment. My journey has been rocky and scary, but I'm happy to be feeling well today. Best of luck to you. 

[LouT]

Judy 

welcome to our forum.  You have a great story to tell and I hope you’ll share it here often.  You’ve already been through so much that can be of service to others.  We see new people coming in almost daily and your story sure sounds like one of courage and survival that can give hope to others. I’m glad to meet you and look forward to hearing more about you. 

Lou

[Sabacat]

What Lou said!  🙂  Thanks so much for sharing your story.  Those of us starting down this road really appreciate the inspiration and confidence your experiences provide.

Susan