How often does a metastatic breast cancer patient get good news?
I imagine it varies. Writing from my experience, I don’t get good news that often. Bloodwork has been steady and decent. Stability is considered good news. Stability or slow growth is usually how news is presented as “good” in my situation. I want more. I am thankful my news has been mostly good over time. Initial lines of treatments were highly successful. Mild, minute progression was the usual result when these stopped working. Millimeters. Sometimes these millimeters weren’t even considered medical progression. They sure mattered to me. Millimeters add up over time.
Millimeters crush my hope.
I’m still able to do many things. I am active. I’m independent. I also know others have received news much worse than mine. Grief weighs heavily on me when I learn that someone I know in person or online isn’t doing well or has died. That last piece is a huge reason why I don’t share news, good or bad, on social media platforms. Someone always is struggling and the timing never feels right. I don’t share much health news online.
What happens when I do get good news?
I don’t trust it.
I must not understand it.
I don’t allow myself to feel joy because I have to keep myself in check.
It will be taken away if I get excited.
It won’t last.
MBC has done a number on me.
I hope for good news. I pray for it. I try to do whatever I can to tip the scales in my favor. I also have fears and have been conditioned from too many similar reports of minor growth to not expect that is what I’ll hear. Patients with metastatic breast cancer don’t get a lot of good news. I imagine our oncologists don’t get to give it to us very often either.
Well, I got good news. Whatever is ahead of me, this good news can’t be taken away. I understand it. It wasn’t a mistake or some fluke. I held off in getting too excited until I had a face to face with my oncologist to see if our definitions of what good news meant were the same. We are on the same page.
I am feeling joy. I get to feel joy.
My October 2019 scans showed regression.
My largest spot is now a little smaller than it was in 2012 when I was diagnosed.
I have waited YEARS for this kind of news.
Millimeters also make a difference over time when they are being subtracted.
If size is the only thing that matters, then I have regained ground to where I was over seven and a half years ago. Size isn’t the only thing that matters, but that is how I’m framing my thoughts. There are other factors, especially the physical and emotional tolls of treatments, retiring early from teaching, the never-ending obstacles of living with MBC, etc. All news is not golden in my life. Bad news has been hard. These all have had major impacts.
Research also has major impacts.
My privacy has always been something I want to protect, and I will continue to be a private person. Privacy is the other reason I do not share much publicly. When others share good news, I always find myself wanting a little more information so I can assess if I may be eligible for their protocol and have a chance for the same kind of good news. This is one time where I will share more details. It may help someone.
I have been participating in a phase 2 trial since February that I was matched with through Foundation One. Foundation One is a lab that does in-depth genomic testing that (as I was told) goes deeper than what genetic testing through my treatment center clinic involved. It looks for mutations. Most of the time mutations are not found. If there is a mutation, there hopefully is also a trial that would target that mutation, as there was for me.
The cancer in my body is identified as estrogen positive, HER2 Neu negative. An activating mutation of ERBB2 (Her2 Neu) gene was identified. This means I do not have too many of the Her2 Neu genes. Having too many would be an amplification and make me positive. I am negative. The issue is the gene is OVERACTIVE and doing the wrong thing. The overactive aspect can be targeted.
I also have a mutation presenting as a variant of ESR1 in my hormone receptors. It is a variant of an estrogen receptor that is not active and therefore means the receptor is ON all of the time. People do not respond well to aromatase inhibitors where this is true. A mutation here explains why previous lines of treatment stopped working or haven’t worked as well. This mutation can be targeted as well.
Herceptin, neratinib, and faslodex are targeting both these suckers.
I’ve traded one batch of side effects for another set. Some have stayed the same. I’ll push on and keep doing everything I can. I pray I can stay on this regiment for the long haul and that it keeps doing good work.
Cancer acts differently in everyone. It can still behave differently in those of us with the same type. I hope those of you in similar situations get good news, too. We all need good news.
There is more work and research to be done, for myself and for others.
Research gives me hope.
I live in hope.