Talking Frankly about Living with Advanced Cancer

I have been battling metastatic breast Cancer now for almost 7 years. I never thought I would live this long. I'm at the point where I'm afraid I will run out of money before I die. I had a terrible time this summer with pain due to a fractured vertabra. I had to hire full time (40 HR a week) help to do most everything for me. I didn't bother to see if I could afford it because I just simply needed it not to mention a dog sitter for my two dogs while I spent 23 days in the hospital. Things are finally getting better--much less pain after spine lapindectomy and radiation. More radiation for brain tumors and a tumor in my jaw. I've told my caregiver I need her only 20 hrs a week now which didn't go over well. I'd like to have her more but I just can't make ends meet. I've told everyone not to expect much for Christmas. My problem is when all this was going on I made my peace with death and was ready to go. I'm still ready. I don't have much quality of life, my money is running out and I'm afraid what will happen next year when I turn 65 and have to go on Medicare. I have good insurance now through my last employer but my understanding is Medicare
has lots of co pays for everything. Then there's that donut hole which I'm sure to hit fairly quickly with these out of the world cancer meds. I know I have the option of throwing in the towel and saying no more treatment but my cancer is actually fairly indolent most of the time and even if I just get palliative care I could live indefinitely. I could have said no to back surgery but I would have ended up paralyzed fairly quickly so I'm glad I did it. The brain lesions might or might not have lead to my death but I didn't want to end up severely cognitively impaired in my last time with my family. I am on blood thinners because I had a couple of DVTs last summer as well as a PE. I could stop taking those and see what happens

@dlsmabrey, I'm so sorry that you've had to face a metastatic diagnosis. It's not easy on any of us. In 2024 I had an early-stage breast cancer, but I do have stage IV lung cancer. I'm treated with a targeted therapy. People don't know that I have cancer, and they don't know that I think about cancer every day, but that's the reality. Treatments have improved over the 5 years that I've had lung cancer, the same may true for your type of MBC. It's likely worth an updated conversation with your oncologist. They may have some suggestions for how to deal with the weight of the diagnosis too; palliative care, therapy, an in-person MBC group. I try to focus on today, and not what's ahead. The initial estimate that I received was 2 years. Right away I didn't believe it, and it wasn't correct, as I'm here 5+ years later. No one can predict what's to come. The fact that you feel good is a blessing, you don't feel like you're dying because you're not yet. There will be time for that later, but for now, try to live each day, one day at a time.

I have MBC stage IV with Mets to bones initially. I was on Kisqali, Letrozole and Xgeva. Diagnosed April 2023.
I started having what I thought was sciatica in September of 2024. Turned out it was a tumor impinging on my sciatica nerve. I started on Chemo (Enhertu) in December.
I am thankful for the treatments available. The chemo has minor side effects and my scans show improvement.
I have tiptoed around the question....how much time do I have left?
I asked my surgeon when I was first diagnosed and she said typically 3 to 4 years... 3 years would be 2026.
On the outside I know everyone thinks I am doing so well. I even fool myself sometimes. It seems so unreal and sometimes I just cry uncontrollably when I'm alone.
I just don't feel like I'm dying. But I am scared.

Dave, I really appreciate your candor about your situation. It’s comforting to me that you maintain some hope without sugar-coating your experience. Cheering you on over here in Massachusetts…

I have MBC stage IV with Mets to bones initially. I was on Kisqali, Letrozole and Xgeva. Diagnosed April 2023.
I started having what I thought was sciatica in September of 2024. Turned out it was a tumor impinging on my sciatica nerve. I started on Chemo (Enhertu) in December.
I am thankful for the treatments available. The chemo has minor side effects and my scans show improvement.
I have tiptoed around the question....how much time do I have left?
I asked my surgeon when I was first diagnosed and she said typically 3 to 4 years... 3 years would be 2026.
On the outside I know everyone thinks I am doing so well. I even fool myself sometimes. It seems so unreal and sometimes I just cry uncontrollably when I'm alone.
I just don't feel like I'm dying. But I am scared.

Tanx Isadora your post has given me some hope. I’m led to believe there’s little hope for me. Maybe 4-12 months. Maybe I’ll get lucky and see some remission. Or perhaps there’s a drug trial out there that” ll become available. Any improvement would be welcome.

@merpreb I must confess I do at times feel survivor guilt even though I know that I couldn’t have done anything. It’s especially traumatic when it’s a young person who hasn’t had a chance to grow up. Tears my heart up even more when it’s a parent with young children. I am now 62 after stage 4 incurable appendix cancer diagnosis in 2021. I’ve had a wonderful fulfilling life and continue to make sure I do. Not to waste what I’ve been granted.

Yet I do sometimes feel guilt I’m still here and guilt that, if I could do a swap with God, I’m not sure I could be generous enough to swap.

I'm very glad to hear that Palliative Care is supportive. I know what you mean about emotional discussions. I've been on both sides--my first husband died as a young man and I took care of him. Now at 71 I have a cancer with a poor prognosis (although I'm doing quite well and have outlived the initial prediction) and find myself in similar conversations but from the opposite perspective. All I can say is that even if difficult these conversations have been invaluable to me--I treasure them. Wishing you all the best today.