Analysis Paralysis

I started Enhertu, my 7th line of treatment since my de novo diagnosis with Stage IV Metastatic Breast Cancer (MBC) in March of this year. As many of you have noticed, I’ve not been as consistent with writing and many other things since starting this treatment. There are many reasons for that, the foremost being how tired I am all the time (and the fatigue caused by cancer and the treatments is fatigue on a whole other level). I wrote a little about that earlier this year and you can read more about that here.

At the same time, there are many other parts of the living with MBC experience that cause fatigue in different ways outside of the medication side effucks. Two scenarios occurred in the last few months that, quite frankly, took up whatever brain power and energy there was available and it reminded me how much treatment can take a toll on our whole lives.

The first scenario had to do with my lungs. Interstitital lung disease (ILD) is a known side effect of Enhertu that has proved fatal for some people. ILD is a side effect that I’ve had before while on other lines of treatment and the possibility that it could reoccur and be significant is something that keeps me up at night. On each of the PET scans I’ve had since starting Enhertu, infiltrates/nodules have shown up in my lungs, increasing each time. Ultimately, my team (which has expanded with the addition of an interventional pulmonologist as well as the pulmonologist I established care with before starting Enhertu) has recommended that we continue to watch the infiltrates versus conduct an invasive biopsy. At the same time, this potential diagnosis created a lot of extra scans, new providers and appointments, as well as the possibility of additional procedures.

The second scenario had to do with my brain. Over the summer, I had an MRI of my cervical spine to look more closely at a lesion that may have grown and on the edge of the field, the radiologist noticed an area of “enhancement” around my cerebellum that could indicate leptomeningeal disease (LMD). LMD is when mets are in the cerebrospinal fluid that bathes the brain and spinal cord and the prognosis is pretty dire since there are very few reliable treatments for LMD. A repeat brain MRI did not show anything concerning and I’m not having any new neurological symptoms, but again, this potential diagnosis created extra scans, more providers and appointments and the possibility of different treatments to consider.

Looking back on both of these experiences, I realize it may seem anti-climactic since we now know that neither are cause for immediate alarm; at the same time, that wasn’t the case in the middle of each experience. Researching, seeing multiple providers (some brand new), and struggling to assimilate what may need to change as a result of the new information took up so much space. We’re thankful that we didn’t have to cross the bridge into new treatments and/or prognosis, now. At the time, it was paralyzing and my instinct to prepare for the worst while hoping for the best made for some dark nights. Because the worst, well, that’s quite a moving target.

Now that we know that Enhertu is doing its job and we’re watching the rest, we can breathe a little easier and focus on the important things, like the new school year, the kiddos’ activities/sports and preparing for some advocacy traveling. Cancer never really goes away but sometimes it’s not the first thing.