PR-, ER+, HER2+

nowaldron

Hi Everyone,

Yes, I am back to hopefully gain some insight as I quickly approach the five year anniversary of my Stage IV metastatic diagnosis. It will be five years on 2/5 (2016 dx) and I have been stable since 10/2016. I have been on Herceptin and Perjeta every three weeks with Zometa every three months. I also take Femara daily. At this point in life, I feel good and have been working from home since last spring. I have had no recurrence since the initial diagnosis.

OK, so here is my question: based on the most recent research I can find, I have long passed the overall time to recurrence. Does anybody know of updated stats on this? I realize we are not numbers, but this is always my prime concern. I have posted before about my fear of brain mets which continues to be recurrence I fear the most. I also read some recent studies (Sept. 2020) that has suggested overall survival for some of us could be upwards of 11 years. That is certainly great news. Despite this, it is difficult living with the unknown.

I recently read "A Grief Observed" by C.S. Lewis that he wrote after his wife, Joy Davidman's death of cancer and the passage really struck a nerve with me. "And grief still feels like fear. Perhaps, more strictly, like suspense. Or like waiting; just hanging about waiting for something to happen. It gives life a perfectly provisional feeling."

This is exactly how I feel - life is provisional on staying stable and one never knows when that is going to change. I have a loving family, a great career, and professional support through this journey, but no one can understand this feeling. Sometimes, I think, oy let's just get this over with -- not that I would ever hasten that. I love life too much.

So, anyway, I was just curious if any other Her2+ compadres would share their recurrence stories with me. Being five years out is great news, but it also makes me five years closer to the other shoe dropping.

Thanks so much and I wish everyone health and happiness,

Nancy

illimae

Nowaldron, I’m the same subtype and had the same fear of brain mets. I was diagnosed in Nov 2016 and spent 2017 doing chemo w/H&P, surgery and radiation ending on Sept 2017 but just two weeks later I had a brain MRI due to a 3 day headache. Results were 5 spots in my brain but too tiny to cause the headache, so I’m lucky to have found them so early. The first week was devastating, thinking I had weeks to live but this wasn’t the case at all. My single bone met remained stable but I’ve had new brain mets almost annually for the last few years. Radiation is often used from them and it’s been easy in my experience. Honestly, once the brain mets shoe dropped and I responded to radiation without any problems in personality changes, cognitive function or changes to my daily life, I felt such relief and the scariest stuff wasn’t so scary. For me it’s been all bark, no bite. Now, if I can just stay stable in the brain and NEAD in the body, I could live with my nearly normal present condition just fine for many years.

Good luck to you and congrats on the big cancerversary.

nowaldron

Thank you illimae for sharing. For the most part, my treatment has also been fairly easy. I've never had any really severe side effects from chemo or H+P. I think the thing that worries me most is how will I know if I have brain mets. Back in the fall of 2018, I insisted upon a brain MRI as I was having headaches and balance issues. My onc said she didn't think it was anything and, as it turned out, it was nothing. So, I am a little hesitant to bring up symptoms for example headaches or stuttering/halting speech. Sometimes I feel that my onc (who I love) is so proud of my progress that she doesn't want to consider any kind of recurrence. I know that's probably not true, but I feel that way sometimes.

Thanks again - I really appreciate you sharing with me.

Take good care and stay well,

Nancy