Mom has Stage 4 NSCLC

[JessZ84]

Hi everyone, I'm new here. This is my mom's story:

Back in late November 2009, my 56 year old mom fell down the stairs in her house. She lives in an old fashioned row-home in Baltimore with steep hardwood steps so she dislocated her shoulder and had to go to the emergency room. While there, they were able to get her shoulder back in but did some x-rays just to be sure she was okay and didn't get any other injuries. What they found was completely shocking. Some of her lung showed up on the x-ray and they saw a small mass. At this point, they had no way of knowing what it was, but they told her she should get a chest x-ray and make sure its nothing to worry about. We were very confident that it wasn't cancer. She is extremely healthy, one of the healthiest people I know. Physically fit, non-smoker. But she of course got the chest x-ray to be sure. The results from her chest x-ray were unclear, and they ordered a PET scan. This is when it started to get scary and we all started to worry. But keeping in mind that she has no symptoms and doesn't smoke, we were hopeful. The PET scan was also not enough for them to diagnose anything so next they ordered a lung biopsy. The biopsy results were astounding. Not only did she have lung cancer, but it was in stage 4. Last week me and my brother took her to a new oncologist at John Hopkins and discussed her treatment. She will be getting 6 treatments every 3 weeks of full body chemotherapy. Considering she has no symptoms and is perfectly healthy, we are all extremely confident in her beating this cancer. But of course we know the survival rate isn't great for stage 4. Its scary being that I'm only 25 and having to face the thought of possibly loosing my mother. I'm getting great support from family, friends and coworkers, but I thought I'd seek the support of others going through the same thing as me. Thank you for reading!

[Patti B]

Hi Jess and welcome even though I hate the thought you have the need to be here.

Stage 4 is not the best to be diagnosed with but whatever you do, please do not listen to statistics. Your mom is an individual and NOT a statistic. I was diagnosed Stage 4 with mets to my spine and hip and only given a short time. Well, I decided not to listen and I am now at almost 40 months. And I feel great!!!!

I am so glad you have a support base around you - thats very important. Will you be the one taking her to doc appointments?? If so, bring a notebook, have questions written down and write down the docs answers. Some people also bring a small tape recorder. Docs, as you know, sometimes talk so fast and you get home and say "what he say about that?" Let us know what chemo she is on so others here can help with possible side effects, etc.

Please keep us posted as to how both you and your mom are doing. Your mom is very lucky to have you by her side.

Hugs - Patti B.

[fillise]

Jess,

Welcome to the Lung Cancer Support Community. We hate that you have to be here, but since you need us we are glad you found us.

The first thing to remember is not to give up hope. Three years ago today I was exactly where you are now--in shock from my mom's diagnosis with stage iv nsclc. Three years ago today I began the grieving process for my mom because I thought she only had a few months to live.

Three years from that day I am happy to report that she is still with us. We had a wonderful family Christmas a couple of weeks ago and she was able to enjoy all of the festivities.

The first thing to do is to pay no attention to the statistics. People here bust those statistics every day around here.

The second is to rescongize that you, and probably your mom, are still in shock. That is normal. Life has changed for all of you and we get accustomed to what is known as the "new normal." Give yourself some time to make the adjustment. It takes awhile.

Third, head over to www.cancergrace.org to read more about nsclc and its treatments. GRACE is a physician mediated site and there is a wealth of information about the cancer and its treatments. The docs there will answer you questions about treatments and side effects. They cannot give you specific medical advice, but they can help you understand what to expect from the treatments and the desease.

Finally, keep coming back here to ask questions and tell us about your mom's progress in treatments. We've all been through it and whether you have a question, want to celebrate some good news or just to vent we are here for you.

Susan

[Bud Baker]

Welcome, Jess, and best wishes for you and your mom.

[recce101]

Jess, welcome to LCSC! Your mom's diagnosis was understandably shocking to you, but distressingly familiar to us. The lack of obvious symptoms, or the misdiagnosis of early symptoms in a non-smoker or never-smoker, causes an overwhelming number of lung cancer patients to begin their journey as stage III or IV. But although stage IV is considered incurable at present, it is definitely treatable, and important advances have been made in recent years. The statistics you may read or hear about are backward-looking and, even then, are based on large numbers of patients with a similar diagnosis and have no real significance for any individual patient. So pay no attention to them!

I strongly endorse Susan's suggestion to visit cancergrace.org (GRACE — Global Resource for Advancing Cancer Education). GRACE is led by Dr. Howard "Jack" West, a Seattle oncologist who is an internationally-recognized expert on lung cancer and who gives high priority to promptly answering questions online. A lot of us are "dual citizens" and have the same usernames there as here. Best wishes and Aloha,

Ned

[Janet B]

Jess -

I am so glad you found us!!

3 years ago I was also diagnosed stage 4 - like your mom I was very healthy, never smoked and was blown away by the news. 3 years later I am living a very happy, very "normal" life. Except for the lack of hair on my head ( ) no one would ever know I have cancer, much less stage 4.

My children are the same age as you - and I hurt for you having to deal with this - but I am so glad you have found this site for help and support.

You and your mom will be in my prayers -

Janet

[Donna G]

Welcome Jess. This is a great spot for support and lots of information. Boy you and your Mom are just at the beginnning of this journey. It is really tough in the beginning and very overwhelming. Where was the Cancer besides her lung, it must have spread somewhere to be Stage IV. I had to have chemo to make it possible for surgery. At surgery they found it had totally killed the tumor, wishing your Mom the same.

Keep us posted.

Donna G

[JessZ84]

Wow thank you all so much for these kind responses. It definitely helps A LOT to hear all of your stories and know that stage 4 is manageable. My mom is an incredibly strong woman who I know is not listening to statistics. She isn't a statistic, shes an individual.

She should be starting her chemo in the next couple weeks or so. I will keep you all updated on her condition once she starts the chemo. I've never cared for anyone going through this before so any helpful tips are appreciated! Thanks again

[jstdzy]

Welcome Jess!

Dana

[beatlemike]

Hi Jess,it sounds like your mom and you have the right attitude. Try to take it a day at a time. My prayers for a successful treatment.

[jaminkw]

Welcome Jess. I know how you feel at this outpouring of support. I have been at the receiving end of it myself, and as a survivor of over two years, I don't know how I would have gotten thru it without the wonderful people on this site. Keep us posted on your mom's treatment.

Judy in Key West

[dlemmon87]

You are certainly not alone in the shock of your mothers health. I was told that often symptoms won't show till it reaches Stage 4. You gotta stay as strong and as hopeful as you can, because she will need you to. But it's okay to cry too. I can relate to what u are going through, and am probably not the best comfort since I lost my father Dec 5th and still grieving. But I can tell you this, before my dad was even diagnosed I wrote him a long letter telling him how much I loved him, how thankful I am for everything he had done for me, how much I still needed him, and how sorry I was for not always being the best daughter. And I feel very relieved knowing there wasn't anything unsaid, he knew just how much I loved him. I reread that letter and think about how great it probably made him feel to know he was needed and loved. You will be in my thoughts and prayers!!

[JessZ84]

I am so sorry about your father. I can't even imagine how hard that must have been for you. That letter you wrote him was so sweet and I'm sure it meant the world to him. I think I might do the same for my mom once she starts her chemo treatments. Thank you for the idea.

I appreciate you all sharing your stories with me so far. It helps me so much to know I am not alone in dealing with this. Thank you so much everyone

[mariola82]

Hello -

Welcome to the site. I am sorry to hear about your mom. As difficult as this may be, try to stay positive and just be there for her. She needs your support now more then ever. Stay Strong!

~Mariola~

[millie's girl]

I'm sad that you have to be here but that site has been a source of strength as I deal with my mother's diagnosis... I pray that all goes well with your mom... You all are in my prayers