Updates & One Year

TL;DR: Two sets of scans, and I am essentially stable (some minor things but staying the course). I’m grateful to be living well 😊 

 

The in depth version follows. One thing I’ve fallen into is waiting for more information (scans, blood tests, appointments etc.) to post. But….there will always be more of those, so writing anytime is the right time. Hence the long, rambly post.

 

I’ve had two scans since the last I wrote, one in July and one in October. There has been a little more uptake of tracer in the sternum, but we don’t rely only on bone scans only, and nothing new on the CT. All previous bone lesions are holding steady. My tumor markers have never been really high, but they just dropped into normal range, which is likely another sign of stability. Woo! I’ve been having some minor neurological issues, so we’re doing an MRI in a couple weeks, out of an abundance of caution. Patients with my molecular subtype of breast cancer (hormone positive, HER2 negative) only present with brain metastases about 14% of the time, but the oncologist wants to be safe. I appreciate and approve. So that’s it. Staying the course on the same treatment since March. Side effects are present and manageable. Grateful to have the time and space to deal with those as well as medical billing, insurance, doctor’s appointments etc. 

 

A year has passed since I was first diagnosed stage IV. I am in a better place physically and mentally - I can breathe and no longer have a pleural catheter. My back hurts less. And the disease is just hanging in there, neither progressing nor regressing. That’s a win. So, getting the cancer under control helped, but equally so has therapy and a low dose of fluoxetine (generic Prozac). I was really irritable, and couldn’t control how I handled it (even while thinking in my head that I shouldn’t be irritated and needed to chill, weird disconnect). Apparently this is common, and the low dose has helped me recognize and do something about the irritability. Better living through chemistry!

 

Additionally, I’ve learned a lot about MBC - reading papers and chatting and lurking on social media, but also attending conferences as an advocate. I’ve been able to ask some good questions as well, and I hope to continue to push for greater access to clinical trials. The need for targeted research is huge, not just into early detection, but in true prevention of any breast cancer (there’s a Phase I trial for a breast cancer vaccine!) as well as metastasis of the primary tumor. If we can do this, then we can prevent death from breast cancer. I’ve been disappointed in survival curves for current MBC treatments (and other advanced cancers). Lastly, MBC patients are not a monolith. There is so much variability in disease course due to varying biological characteristics (of the tumor, metastatic niche and overall physiology/health) but also sociological factors such as race, environment/living conditions, socioeconomic status, and education. For example, my pleural effusion was scary, and made worse by statistics on survival of malignant effusions. But. Thing is if you can find a drug(s) to keep the cancer under control location of metastases matters less (though still linked to differing survival time overall). Averages are only useful as a starting place, and no one is a statistic.  

 

On the non-cancer front, I continue to visit with family and friends, kayak, hike, nap, read, travel, garden, and generally live a good life. Walking and raising money for the American Cancer Society was a last minute decision, but I’m so glad since people were so generous and I met another MBCer (is that a word?) in person. We also both wrote in to encourage the organization to become more inclusive of those of us who currently have cancer, whether that is due to metastasis or being still in treatment for earlier stage breast cancer. We shall see! Overall it was a very good experience though.  

 

I am so appreciative of my awesome support system, and remain grateful everyday for all of you.

Also, I’ll try to do better on updates!