Hello

[mark111111]

guess this is as good a place as any to jump in here and share my recent diagnosis.. Diagnosed 3 days ago with non-small cell lung and brain. I actually hate saying that as I suspect in some ways it now becomes my identity rather than a diagnosis. The only symptom I've had was a 20 minute period where I was unable to decipher written words which sent me in for an MRI and ct scan. Steroids reduced the swelling pressing on my "reading center" so thankfully I can read again.  I have NOT absorbed this at all which I think is pretty normal. I haven't been scared or cried yet. I'm mostly concerned with finances and the emotional impact on my teenage sons right now. I'm sure all of the fear and anger are lurking inside and will come 

As I've taken some time off of work the worst time for me is morning. Wife and I are separated so I live alone. I've got this whole day in front of me and don't know what the heck to do with myself so I pace and obsess. light a cigarette out of habit before violently crushing it out and calling myself a stupid a**hole (is swearing allowed here?) until I need to just get on my bicycle and ride. I finally called my oncologist and asked for a sedative which he was more then happy to give me so I'm calming down enough right now to the point where I can start doing some research. 

There is no shame in asking for some medical help to deal temporarily with the emotions. These are some of the strongest, strangest and most unpredictable emotions any of us will likely ever deal with. And we need to gather information and make critical decisions at the same time. I can't do that while my mind is racing in 10 different directions.

Just my opinion. 

 

FYI...bright side, I've taken to referring to my usual sloppy texting as tumor texting. It makes me giggle and if others don't see the humor...screw them, I get to react to this however I want right now.

 

Thanks for listening

[RonH]

Welcome Mark to the site that everyone wishes they didn't have a need to find. I myself have only been here several months, but was diagnosed with Stage IIIA NSCLC (several non small cell tumors in the right upper lobe and several local lymph nodes) about 18 months ago. I actually found out as my Primary Care Physician recommended that I have a Low Dose CT scan as part of my annual physical as I was a former smoker and over age 55. So I've been fighting this fight for 18 months now and while there has been ups and downs, I'm actually in better shape now that when I was first diagnosed. Anyway you will find many people on here willing to share their experiences in this fight we're all facing. As you're just beginning your journey, feel free to ask questions or just have somewhere to vent to. We all here to provide moral support to each other and to learn from others experiences and thoughts. I'm assuming you are stage IV due to the Mets to the brain? Feel free to share as much or as little as you wish here while you explore around the different forums. 

Anyway, sorry you're here, but welcome.

-Ron

[mark111111]

Thank you for the welcome!  yeah I'm assuming stage lV although I haven't had my pet scan yet so it hasn't been staged. Matches my research though.

People keep talking to me like they are at a funeral. Jesus. Smile people! I'm still here. Sense of humor intact. Seriously though, I get it. Nobody knows what to say including me. It's all somber sympathy or chirpy stories about friends who survived and are doing great. They all mean well and it's not too annoying yet.

[LouT]

Mark111111

Welcome to the forum and sorry you need to be here.  I understand perfectly the post-diagnosis anxiety.  After a routine CT Scan a nodule was found on my right lung that led to more testing (CT Biopsy, PET Scan, Open Thoracic Biopsy) that finally confirmed NSCLC Squamos cancer in my lower right lobe.  I had the lobe removed in May and a few months later I'm blessed to be back to 5 miles/day on my treadmill and a 40 minute weight workout six days a week.  Yes, there was a recovery and some tough spots along the way, but the people in this forum became family to me.  Nights when I thought my life was over they shared stories of hope and some of the tough times they went through to become NED (No Evidence of Disease).  Some even shared (in detail) their surgical experiences so that I had a template to follow and I knew what to expect before, during and after the hospital stay.  Knowledge and the support of these folks was the balm that calmed me regarding my disease, treatment and recovery.  They listened to my complaints, answered my questions and lifted me during some sad times.  

All those people, including me, are here and can answer your questions and show our support for you through your dark times.  So, take some time to read other posts, you'll learn a lot in doing so.  Ask questions, understand what your doctors are planning and be a part of your treatment team, focus on each day and stay away from Dr. Google and internet stats on survival rates (hint: They aren't accurate as they are a 5-year running average and do not indicate what is presently occurring).  This is a tough journey, but you can get through this.  You will not be alone now that you've joined us.  Please keep us updated and remember that no question is silly or too small to ask.  Meanwhile you'll be in our thoughts as you go through this.

Lou

[mark111111]

Thank you so much. No matter how many people may be around me, try as they will, I just don't think they will get it. I'm pretty sure you guys will. And right now that's really comforting. I've felt pretty alone since tuesday.  I think it will be better after I transfer fully from the hospital docs to my own team. I have an oncologist now who seems good and he set up some referrals. My first feeling of positive steps.

PS, ER docs should never NEVER break bad news. I'm sure they are wonderful doctors in an emergency but warmth and empathy is not their forte.

[RonH]

Your own "team" will certainly help with your concerns and worries of the "unknown" and I would have to agree with you about the ER Docs. They are there simply to get you through the "emergency" as best and quick as possible and then hand you off for treatment to others, which will be more personalized and normally as it seemed to me to be more compassionate. I know several years ago when my wife had to go to the ER, after they stopped the bleeding, the ER doc walked in and said that she was stable, was being admitted, that she had uterine cancer, and then proceeded to walk out the door not to ever be seen or heard from again (except for his bill later). While I am sure that everyone is different during their journeys; you may likely also encounter Thoracic Surgeons, Medical Oncologists, Radiation Oncologists, Pulmonologists, Interventional Radiologists, as well as Imaging Radiologists and Pathologists (both rarely met as they are normally behind the scenes), and of course all the nurses, technicians and as well as their staffs. I've encountered them all in my journey over the past 18 months with my NSCLC and have the utmost respect for them all, but of course some are more personable and patient friendly than others. There is actually a quite large number of medical people that will be supporting you/us in this fight and sometimes it does seem very overwhelming. Its always nice to have others like everyone (actual patients) on here to reach out to as we're in the same or a similar battle with cancer. The phrase "Been There, Done That" can certainly be applied here.  

-Ron

[Rower Michelle]

Hi Mark,

Welcome. I was diagnosed Stage IV ALK Positive NSCLC a year ago at the age of 51.  You’re not alone, we all understand the darkness of the early days. It’s impossible to articulate outside of this inner circle. 

Managing the diagnostic process and communicating with others is really hard with “the death stare”.  I’d like to say to you  that better days are coming. Once you’re through all of these tests and the treatment plan is implemented, somewhere along the line the will to fight kicks in.  It will get better.  Right now is an emotional roller coaster. 

It’s smart to take some time off from work (even more so if your job is stressful or physically taxing). This is a time to make your treatment the number one priority by saying goodbye to toxic people. You’ll find support coming from the least expected places.  Keep your sense of humor going as people around you will take your cue. It takes time to get to the “new normal”.  

Lou has given you some great advice- Dr Google  is not our friend. There have been more advances in lung cancer treatment in the last three years than in the last five decades.  Some days in the beginning it’s an hour by hour type of coping. That’s normal.  It’s easy to get ahead of ourselves during the turmoil of this time.  Trust your medical team.  

We’re here to support one another day by day. 

Michelle

[Tom Galli]

Mark,

Welcome here. 

I had an ER diagnosis almost 16 years ago. I had 4 thoracic surgeries, 18 infusions of chemotherapy, 30 sessions of conventional radiation, 18 weeks of targeted therapy (pill form Tarceva) and 3 thirty-minute CyberKnife precision radiation sessions. The point of revealing all this treatment history is if I can live, so can you. 

Stay the course. 

Tom

[mark111111]

thanks man. Nothing says reassurance like a butt kicking Texan!

[Curt]

Hi @mark111111 unfortunately many of us can relate on some if not all of what you are going through.  Some ER Docs can definitely  use some bed side training.  I had an ER doc completely neglect to tell me about a nodule that was peripherally found on an abdominal scan.  Luckily my mother is a nurse, and nosy, and read the report and saw it written deep into page four.  I’ve now gotten into the habit of reading ALL of my medical reports and asking questions about whatever I don’t understand.  I hate that it was there but I’m so grateful she found it.  That was two years ago.  I had surgery seven months ago to remove the nodule, it was very small.   So far all is good.  Brain Mets are tougher but it can be done.  Advancements in the last three years and others happening every day are changing the statistics quickly.  You’ve got the right approach.  You are still here.  Live your life.  Keep your sense of humor and battle on.  You’ve found a group of people who get it and are rooting for you.  

[Steff]

Hey Mark, 

I like your humor.  Sometimes that's the best way to deal with things out of our control (in my opinion) -especially when everyone around us acts so serious and somber once they hear the word "cancer".  I'm the cheerleader in my family (NOT literally).  I've been "cheering" on my mom for 4 years now, while she beat lung cancer, got it back, and then beat it again.  We've dealt with the sympathetic looks and the "ooh I'm so sorry's".  I think that people just really don't know how to respond.  

I really like your "tumor texting".  Prior to my mom's diagnosis, she was in a bad car crash and had several brain scans.  She was told a couple of things from these scans - 1. She has a brain (it was a surprise to all of us! lol), 2. She has a "tumor" on her brain that has likely been there forever, it is benign and no big deal.  After she found this out, she blamed everything on her tumor.  It was funny to us, but others outside of the family gave us weird looks.  

I hope you keep your sense of humor through all of this. You don't have to let lung cancer define you. While my mom has been dealing with lung cancer and it's effects for 4 years now, it has never defined her.  Even during active treatment and doctor's appointments several times a week, she has never allowed it to define or limit her.  I hope that you can find this happy medium as well.

Take Care,

Steff

[mark111111]

Thank you everyone for the kind words. My thinking is if I don't laugh at this thing who the hell else can. I know some people like to keep their diagnosis private, which I totally respect, but that's not me. While texting an old friend last night named James I got the biggest laugh of the week when he said, "I'm so sorry to hear. If you need anything, anything at all don't hesitate to contact Pete. He lives closer." That little touch of normal guy interaction was so incredibly awesome I gut laughed for about half an hour. It felt wonderful.

[LUNGevityKristin]

Hi Mark, just wanted to check in and see how you are doing.  Thinking about you!