I am excited to give another great update! My most recent PET scan looked good, no signs of new or recurring metastases! This was actually my first PET scan since the lung infection debacle of 2020. I’ve had CT and bone scans since then. In March, it will have been five years since I was diagnosed with stage 4 cancer. And if my next one or two scans look good, I will essentially hit a 5 year “No Evidence of Disease” mark in August. Also in March, it will be 8 years since I was first diagnosed with breast cancer.
I also met with my new oncologist. As much as I like the convenience and University of Wisconsin affiliation of my oncology clinic, it does not seem to retain its talent all that well. Three of my oncologists have left the clinic in the past 5 years. The good news is that I like this oncologist and we had a good conversation about the cancer. We discussed the fact that I have a somewhat common mutation in my breast cancer, PIK3CA. This is good news for 2 reasons. First, I have some 2nd line therapies that are approved for people with that mutation, in the event I need it. Second, people with that mutation seem to do fairly well on the medication regimen I am currently on. My oncologist told me that his “unicorn” patients (people that outlive their life expectancy) generally have this mutation.
Good news all around. While back in 2018 I didn’t necessarily think I’d be dead in five years, I did think the cancer would have spread by this point and I certainly did not think I would be enjoying the quality of life that I continue to have. For the past almost 5 years I have not let myself imagine, plan for, or hope for a life after 50 and now I honestly believe it is reasonable for me to entertain thoughts of a more long term survival. This is a true game changer for my outlook on life and life choices.
As great as it obviously is, I am slowly realizing I need to go back to “adulting”. Of course I was always stuck very much in adult mode and never really broke free and made rash, crazy decisions. However, one way that I coped with the trauma of a terminal diagnosis was to embrace the freedom of releasing some of the burdens of middle age. For example striving to get ahead in the workplace, limiting my spending in hopes of a heftier retirement fund, and letting go of some of the trivial minutiae in life that can steep in and bog us down (probably should let that go anyway). I threw myself a huge 40th birthday party and never would have done that had I thought I’d make it to a 50th birthday. This is not to say that all of those are not very reasonable ways of coping and the stress of the disease and treatment in many ways takes “adulting” to a whole new level. But it’s just different and an adjustment. A good adjustment, of course, one I am very thankful for, but there are definitely some mental and psychological gymnastics going on with each scan and appointment.
At this point my treatment plan is continuing as normal and my scans will continue every 6-9 months. As I start to enter this wonderful uncharted territory of “unicorn patient”, I’d love to get off of my medications and decrease the scans. There isn’t enough data, however, at this point to support the idea that this would be a safe move. Fortunately my medication and scan regimen is about as easy as it gets for someone in my situation. I will continue to count my lucky stars and enjoy the physical health I have been gifted with.
3 thoughts on “Another good scan January 2023”
That is wonderful news.
You go Unicorn!!! Love your writing and happy to hear your great news.
This is great news!! So when we were growing up, I was the sick kid who always stayed home from school and I never even saw you have a cold (or maybe you didn’t complain like I did!) so a terminal illness was shocking, devastating, everthing wrong. Thus, growing up, I knew you were Unicorn (along with many other reasons!) so agree you must be a unicorn in this area as well!! Love you!