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Stage 4a non small lung cancer

Stage 4a non small lung cancer

Posted by Cat364 on Nov 14, 2020 10:18 am

Hi,
My name is Cathy and I was just diagnosed with Stage 4a non small lung cancer.  I am extremely terrified and I would really like to talk to someone who has been through this.  I have been coughing for a few months and my ribs and back are sore and it makes me worried that this is also cancer.  I am axious for the Pet scan which is still not scheduled to see if there is any other cancer in my body.  My anxiety is extremely high.  Is there anyone who would be available to chat.

Thank you

Re: Stage 4a non small lung cancer

Posted by Brighty on Nov 14, 2020 11:00 am

Welcome Cat364‍   .  I'm sorry you find your self here and terrified.   You don't have to be alone.    If you go under 'forums ' and 'cancer types' there are lung cancer discussions.   You can join in and chat with others.     I want you to meet a very special  guy who has stage 4 lung cancer .  WestCoastSailor‍  is inspiring , and simply  amazing . He will chat with you about his experiences and what he does to cope.    I know you will feel better after connecting with him.   This I promise.      
Help is out there. All you have to do is reach out.

Re: Stage 4a non small lung cancer

Posted by WestCoastSailor on Nov 14, 2020 3:30 pm

Cat364‍ 

That post brought a flood of memories back. I'm two and a half years post diagnosis. And while my staging was slightly less advanced than yours at 3C I remember that desire for someone just to tell me what was going to happen. The oncologists can only tell you so much. And I wanted someone who had been there.

The first thing I would say is stay away from doctor Google. Unreliable, filled with quacks and horror stories, just not the best resource for someone coming to grips with stuff.  Here is the best two resources that I know of for good clear information. Your oncologist may have already given them to you. But maybe not.
https://www.cancer.ca/~/media/cancer.ca/CW/publications/Lung%20cancer%20UYD/32088-1-NO.pdf This is a CCS publication and is very throrough but simple to read. Waiting for the PET means they are still in the process of determining treatment. That will be dependent on where the cancer has spread to.

The second one is the Lung Cancer Canada website. https://www.lungcancercanada.ca/ On Monday they released their annual report. "Faces of Lung Cancer." https://www.lungcancercanada.ca/LungCancerCanada/media/Documents/LCC-2020-FOLCR-ENG.pdf  I think it should be called hope for lung cancer patients. There have been remarkable strides in treatment in even the two years since I was diagnosed.

I joke that I have an expiry date. My disease is terminal but unlike a lot of folks who die, I have time to absorb that and do things that I have always wanted to do but never found the time for.  I'm about 15,000 words into a 50,000 word novel for NaNoWriMo. And from a health perspective? I ran 7.5 km the other night. In the Vancouver rain. Metastatic disease means that you are sick, not dead.

Again I remember the overwhelming dread, the spinning thoughts that couldn't or wouldn't settle down. And then the treatment adventure starts and fatigue and other challenges arise. They are just waypoints though on this magnificent journey that we call life.  And I know the waiting. I had a CT scan on Thursday and get my results on Monday. And there was a new tumour on the last one so I'm waiting to see if it has disappeared or is growing. Frankly writing here is a good distraction.

I'll PM you as well but it is always amazing to me how many people lurk here and don't post.  Thumper‍ and Sher49‍ have recent experience though and may chime in with their thoughts.

Angus
My story: http://journey.anguspratt.ca

Re: Stage 4a non small lung cancer

Posted by Kuching on Nov 15, 2020 9:04 am

Cat364‍ , I also have stage 4 NSCLC, diagnosed in June of last year, and still doing fine.  My PET scan showed that it had spread to lymph nodes and hip bone, but those have pretty much cleared up by now, thanks to a targeted therapy drug called Tagrisso.   Lung cancer is rapidly becoming a chronic disease rather than a death sentence, thanks to a whole bunch of new drugs.

 Are you scheduled for a biopsy?  This will allow them to do genetic testing, and if you have the right mutations, they can put you on targeted therapy (a pill a day) or immunotherapy.  There are new drugs being approved every day, so hang in there, they will find something that will work for you.  

The waiting for tests - and results - is the worst time.  Once you have a treatment plan, things will calm down and you will be able to deal with it all a lot better and get on with your life.  And we will be here to help you through it all.

Re: Stage 4a non small lung cancer

Posted by Dauntless on Nov 15, 2020 10:04 am

I was diagnosed 3 years ago with one tumor in my lower left lobe, surgery was scheduled, but, I developed pneumonia while waiting for the surgery, and then Hospital acquired pneumonia. Was in hospital a month, ICU ten days. I remember the Dr coming in my room telling me surgery was off the table because my cancer had spread to my right lung.

Then, an oncologist came a few days later telling me about targeted drugs TKI's now being used for anyone with specific mutations, and though I'm a nurse, i can remember his mouth moving, and me nodding as if I knew what he was talking about.

Thus began my journey with Stage 4 NSCL cancer. Never ever smoked or toked. I was in shock at first. I had just 9 months earlier become a nana. Everything was a blur. I was on oxygen more for the residual effects of pneumonia.

One morning I got up and I started researching my condition, not google, and I joined this site and Team Inspire which is all lung cancer.

I have travelled in the last three years, danced, walked some as I was scheduled for back surgery before the cancer so it is painful. played a lot with my darling grandson, do lunches, dinners, and gone on weekend outings with friends or my family. I have bad days and I give myself permission on those days to rest, curl up with my cat, and do absolutely nothing.

I have been hospitalized 4 times in the last 3 years, due to some complications with treatments.

I have become my own advocate with my treatments, was on a targeted drug, stopped, tried Immunotherapy, then on a targeted drug again ,then, went into remission for 9 wonderful months, back on a Targeted drug and it only failed 6 weeks ago, so back on chemo. I asked for a specific test ,to see if I can go on another targeted drug, my oncologist did not suggest it, I asked.  Waiting for those results but will stay on chemo till then.

As Sailor suggested all those links, use them. Keep in touch with all of us. We always want to know how someone is doing, mentally and physically. I would also recommend Team Inspire. I have learned so much from chatting and reading those with the same type cancer as me. I chat with one lady going on 10 years with this disease. 

Wishing you well, The PET scan will give you the most information. Stay in touch.
Dianne

 

Re: Stage 4a non small lung cancer

Posted by Cat364 on Nov 15, 2020 11:40 am

Thank you all for reaching out to me.  I appreciate your support and sharing your stories and I feel comforted knowing I am not alone and you all understand.  Please keep in touch.

Re: Stage 4a non small lung cancer

Posted by Cat364 on Nov 16, 2020 2:27 pm

Thank you so much Diane and I hope you are feeling well.  Your story is very inspirational.  I am having an MRI done on Wednesday and I am still waiting for an appointment for a Pet Scan and to see if I am a candidate for immunotherapy.  I feel really good and I am keeping postive.  This will be cleared!!!

Cathy

Re: Stage 4a non small lung cancer

Posted by Lianne_Moderato on Nov 16, 2020 6:26 pm

Welcome to the site Cat364‍ . I am glad you reached out and I hope after receiving these wonderful replies, you are too. We have a wonderful crew in the Lung cancer group as these responses attest to. Please continue to reach out whenever you feel the need. There is always someone listening.

Lianne

PS - If you want to "tag" someone to reply to their comment/post directly on a thread, as I have done in this post with your username, simply type the "@" sign without the brackets and then start typing in the member's username. So for instance for Diane, who goes by the username Dauntless‍ , it will send a notification to her that someone tagged her.

I hope that helps

Re: Stage 4a non small lung cancer

Posted by Wants to know on Nov 17, 2020 8:06 am

Sailor‍ Where do you find Team Inspire ? 

Re: Stage 4a non small lung cancer

Posted by Dauntless on Nov 17, 2020 10:23 am

I was looking for support groups for any cancer in my hometown, but, couldn't find any.
So, I turned to the internet, and found quite a few, Team Inspire was one, and this one.
Decided to stick with those two.
I have learned a lot from both sites, but, Team Inspire has people in same boat as me, info on things they  did or used for side effects, different treatment's they have been on.
It's where I learned about T790M, which by the way, came back inconclusive, so my oncologist starting a different chemo, but, won't repeat the blood biopsy.
Quite the journey we are on,
Take care,
Dauntless