When am I considered terminal?

Nina27

Hi all,

I was originally diagnosed with stage 3 breast cancer in March 2016... I have been on 8 different chemotherapies, 2 targeted therapies, multiple operations and radiation.

Nothing has worked longer than a few months and each PET scan showed progression and spread.

Cancer is now in my liver (worst), bone, lungs, adrenal gland and a new lesion in the brain.

My doctor won’t talk to me about prognosis or how long she thinks I have. We are trying to get onto 2 drugs used in a trial called “Beacon” more commonly used in colon cancer but it flagged on the Caris Molecular Test to be beneficial to me. I am waiting for medical insurance to approve radiation to the brain and new drugs but they are taking forever.

If anyone is in the same situation with advanced spread I’d love to hear from you.

Nina

illimae

I’ve heard by you’re projected to have 3 years or less to be considered terminal. Aside from that, most doctors don’t give you an expiration date, however, if there is refusal or inaction by your doctor that negatively affects your ability to get further treatments, I recommend getting more demanding. Sometimes we must stop being polite and tell them how it’s going to be. Good luck.

LizLemon

Hi, Nina -

At stage IV, we have a terminal illness, in that it cannot be cured, only treated and held at bay for as long as possible. The average survival time statistic from diagnosis is 2.5 to 3 years. Now - having said all of that - many women live longer than that. Many women aren't even counted in this famous statistic! You'll find lots of women here that are NEAD - "No Evidence of Active Disease" or what we used to call 'remission.' I've been living with mets for 5 years now. I'm not NEAD, but I'm stable. Doctors shy away from trying to predict an expiration date for us, because they simply don't know for sure how long each of us has. The way I personally deal with this, is to try to focus on the now. What's directly in front of me? What treatments are available? If you aren't satisfied with your oncologist, absolutely switch. They work FOR you!

Hugs,

LL

AmyQ

Good explanation LizLemon - I will be five years in three weeks. I was terrified when I initially heard that statistic but couldn't live well with that hanging over my head. I'm currently NEAD. There are lots of new treatments working wonders on hundreds of thousands of cancer patients. Good luck to you.

Amy

Micmel

I also am stage four. I am also in remission, I have very few spots on my spine and pelvis. No more than five. But I did have a liver tumor. They went in and took it out for me. Thank goodness I had a complete liver resection. Maybe see if you’re eligible for that as well. I had my breast removed at the same time. I was NED, then settled into my bones. In a few places. Bam considered stagefour! I know many that are remission like myself , many times It’s just finding the right treatment. Dont let anyone give you statistics. especially these days when there are sooo many lines of treatment. One day at a Time darling. Hugs to you! ~M~