betsybpr Very healthy person until now! Looking for support and someone to talk to with similar diagnosis

[betsybpr]

Newly diagnosed in June 2022 with Stage 4 non smokers NSCLC and feeling isolated, still in shock. Started treatment in July 2022 but having difficulty dealing with my new normal life. I really don’t know of anyone personally who has gone through this nightmare. I just started antidepressants and therapy to help me cope.

[Denzie Moderator Volunteer]

Hi, welcome to the healthunlimited lung cancer support board. I saw your entry on a different thread and sent a response there but I am doing a copy and paste of it here:

Betsybpr, cancer is very isolating and I’m glad you found this site. There is a Gilda’s Club in NY and Connecticut and they have 5 outreach centers. You can connect with other cancer patients there. They do have a lung cancer specific support group. gildasclubwestchester.org/

If you would like a phone Buddy/ peer support person the Go2 Foundation will match you with someone whose experience is very similar to yours. I volunteer as a support person, we have occasionally gotten together with other support people via zooms. I do know some of them are never smokers who, like you, found themselves with stage 4 lung cancer. They will try their hardest to match you with someone who had the same treatment you are having as well. No one should have to face lung cancer alone. go2foundation.org/resources...

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I’m 12 years out with stage 4 lung cancer. There have been so many improvements in care since I was diagnosed.

From what you’ve written you have a very good understanding of some of the tools available to you to get through this. I commend you for taking advantage of them. Please do consider requesting a Phone Buddy.

[Bow-19]

Do you know which mutation you are? EGFR, ALK? x

[betsybpr in reply to Bow-19]

I do not have any mutations and have been thoroughly tested for all of them

[Bow-19 in reply to betsybpr]

Glad that you have been tested. As well as posting on here it might also be worth posting on the Inspire website to see what responses you get there too. I wish you the best response to your treatment x

[betsybpr in reply to Bow-19]

Thanks so much for sharing about Inspire website, I’m not familiar with that one. I’ll check it out

[Jenniferroseolson]

hi Betsy. I’m sorry you are going through this. Like Denzie, I suggest you consider the GO2 Foundation Phone Buddy program. I am 7 and half years living with stage IV NSCLC, diagnosed at age 44 with all the accidental hurtful comments and questions about whether or not I was a smoker and such. (I wasn’t, but it doesn’t matter. No one deserves lung cancer, and diagnosis of women with healthy lifestyles is one the rise). I had a change on treaments in nov 2019. If you are on chemotherapy plus immunotherapy, it will get easier once you drop the chemo. I’m glad you found this forum. We will help with any specific questions-or just to encourage you.

[betsybpr in reply to Jenniferroseolson]

Hi Jennifer, thank you so much for taking the time to reach out to me. I’m so glad I found this very supportive forum of kind and caring people living with Stage 4 lung cancer. I’m starting to feel an ounce of encouragement (ha) whereas I had been feeling so despondent. You were diagnosed at a very young age, yet as my surgeon had said to me “if you have lungs you can get lung cancer.” I hope you are doing well with your current situation. Good to know that things will get easier for me when I can drop the chemo. The combination of chemo/immunotherapy is tough. I’ve been tested for every mutation through Foundation and others, and I do not have any, unfortunately. I will def be looking into the phone buddy system. Sending love and light to you.

[Melly_Mel]

Hi there, Stage IV non smoker here as well, diagnosed just after my 48th bday when I thought I was the fittest and healthiest I've ever been. I'm struggling mentally at this point too, have been trying to find a local support group and haven't been successful. I'm also on an antidepressant and my cancer center has free counseling, so I do see one. I'm almost year and a half out from diagnosis and I think I'm still in shock. I've been through SBRT for brain mets, surgery to remove a lung lobe and a bunch of lymph nodes, and currently on Tagrisso (EGFR mutation). I am super lucky to say that my latest brain MRI and scan showed NED. Physically, I feel good. Mentally, it's still a challenge. We just have to learn how to live with this thing and not let it crush our spirit I guess, huh? Take comfort in knowing that I know how you feel and you're not alone. I'll be thinking of you and sending you love and light.

[Ncpoet]

Hi Betsy, It seems overwhelming at first but this cancer is definitely survivable. I had same diagnosis as you and I am still here-9 years later and currently cancer free. Glad you are talking to a therapist to help you with the emotions this diagnosis awakens. What helped me was a positive attitude, believing I would survive this, finding something even if it is only a TV program to laugh about daily. You can’t feel bad if you are laughing and it increases those good endorphins, and importantly for me, maintaining my faith and asking friends to pray for me. Knowing that someone might pray for me made me not feel so alone in this. This site is also wonderful when you see how many of us are surviving and willing to share. Hopefully, you will get the genetic testing done by your oncologist so you can know the best treatment for your particular cancer. Believe in yourself and feel the strength we each have inside of us. It may be deep or hidden for now, but it is there. Keep us posted on how you are doing. Romans 12:12

Judy

[betsybpr in reply to Ncpoet]

Hi Judy, Thanks so much for your response and words of encouragement. Hearing from people like you in the same circumstances has been very helpful to me. I’ve had the genetic testing done and I do not have any markers but I’m in the hands of a great oncologist who has me on a specific treatment plan that’s working so far. Sending light and love to you… your words made my day. 😀

[Ncpoet]

Betsy, so glad to hear from you and that you have a great oncologist. Keep us posted as you go through treatment.

All the best,

Judy