Talking Frankly about Living with Advanced Cancer

Hiya I’m Dave … just updating
Made it thru my 3rd chemo treatment on 9/9. Since my last post Palliative Care team has been a tremendous help in reducing my pain and moving me past the scared angry and sad stage. New outlook on life I’ve learned I have metastatic stage IV adenoCA with KRAS and TP mutations among others. Not a great prognosis but we’re still hopeful the treatments do the job. Focusing on getting thru the next chemo; then the Pet/Ct. Looking into drug trials that may be available. Discussions with family can still get emotional at times but at least the self pity is behind me

@rfmb- I'd also like to welcome you to Mayo Clinic Connect. I am a 23-year lung cancer survivor with stage 4 lung cancer. Instead of metastasis all of my lesions are considered very slow-growing primaries. I did feel guilt before I had chemo in 2008. Since then I haven't. My survival and my cancers are special to me. Another person could have the same cancer history but have a completely different outcome. I had a sister-in-law who also did nothing about her uterine cancer and died as a result of that.

In the past couple of years, I have lost 2 cousins, both male, who I grew up with. This was extremely difficult because as a combined trio we had our family's history from 2 sides of the family, plus our own. When they died I felt horrible and felt as if parts of me died with them. But not guilt. And the reason I think that I didn't feel guilty was that there was nothing I could do to keep them alive.

Survivor's guilt is a reaction to surviving a traumatic event that others have died in. Survivors feel guilty that they have survived a huge trauma and others – such as their family, friends, and colleagues – did not. But perhaps guilt can be used as a reminder that we are still here and to honor our family and friends by living life by going ahead and being the best that we can with it.

Who is to know why some people die and others live? I feel so lucky that I have survived for so long. I don't know why but I am surely thankful. By surviving I also found Connect and was able to get out of myself and help others with my support and experience.

Right now it doesn't matter why you are still here. There are just worldly things that can't be answered. Can you look at your survival as a gift and make the most of it?

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.

@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.

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.

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…