January 27, 2021 - Four Years in Cancerland

 January 27, 2021 - a day like any other day. A wednesday. There was snow. I still had the steri-strips over my biopsy site, where they had punctured my lump a few days earlier. Four years ago today, I got the call. The call that no one ever wants to get. 

"It IS cancer"

Once you hear those words, you are inducted into Cancerland, and your life is never the same. You might have a break or a reprieve, but you are always a resident of Cancerland. Whether your treatment is ongoing, active, in remission, or constantly changing - you live in cancer land. 

When you think about retirement, life expectancy, the things you'd hoped to do with your life before you "couldn't" - you are seeing through the lens of cancer. It is never NOT a part of you. You may be able to shove it in a corner, put a lid on it, keep it from overtaking your life. You might even go a whole day or week without thinking about cancer. But you will always be a resident of cancer land. 

When you have hormone positive breast cancer, 4 years is almost nothing to celebrate: my insidious rude cancer doesn't come back right away. In fact, it RARELY recurs within the first 5 years - even though the party line is that being cancer free for 5 years is almost like you never had cancer....except when your cancer is slow growing, dormant, hiding, and likes to show up DECADES later, as my cancer does. So really, I wasn't expecting it to come back so soon, and even though I'm glad it hasn't, I know the first 5 years isn't the time I need to worry about - it's years 5 through 20. Yep, I'm a year away from STARTING the clock to recurrence countdown. Just when most people can breathe a sigh of relief and start to look forward, I will be ever looking backwards for that bastard to return. 

In the meantime, life in cancerland has given me lots to consider, in how I want to live, how I want to be in the world, what my priorities are, and what just isn't worth the emotion or energy. I've made some incredible friends, entered a world of research and advocacy, and pivoted from emergency to lifestyle and integrative medicine. 

Today, on my 4 year cancer-versary, I am starting an integrative medicine fellowship at the University of Arizona. I am embarking on a new path to helping cancer patients through integrative and complementary therapies, and continuing my lifelong education (it seems I just can't get enough school...). Looking back, I'm not glad I got that call 4 years ago, but I am grateful 4 years later to have had the opportunity to reassess what's important to me in life, and to always remember how grateful I am for every single day I have. 

Fuck you, cancer. I'm not living fully in cancerland anymore, but will always have one foot in the door. 

My Prenuvo Whole Body MRI Experience

 

  Prenuvo MRI - made popular by some influencers, and of questionable use for general public cancer screening. To understand how something becomes a cost-effective and clinically useful screening tool, we'd need an entire post and an understanding of epidemiology and health care financing - none of which I plan to discuss here. This isn't a post about whether or not this technology should be in wide use as a screening tool - it's one lobular breast cancer patient's experience so take it for what it's worth. 

Background: extremely dense breasts + lobular cancer = my mammograms x5 COMPLETELY missed my 3.6 cm breast cancer tumor. Thankfully my boobs were small and my lump was big, so I felt it. Was easily seen on ultrasound, and on Breast MRI. If only I'd known 10 years ago that dense breasts = higher risk for cancer + need additional screening, I might've gotten a breast MRI that would have easily shown my tumor. But I did not, and ended up Stage 2b instead of 1 because those stupidly false negative mammograms made me not get my lump checked out. 

This experience obviously influenced my opinion about screening, and imaging, and the longer you live with invasive lobular carcinoma, the more likely you are to have acquaintances and friends with the disease in whom conventional imaging has failed. I know of several cases where elevated tumor markers and circulating tumor DNA indicated there was a recurrence - but CTs and PET scans (even the estrogen tracer PET) could not find the lobular cancer. MRI did almost instantly. In fact, in the research/clinical ILC group in Belgium, this is their first line radiology test to evaluate for distant spread after early ILC diagnosis - straight to diffusion weighted water based MRI. No CT, no PET, no bone scan, no contrast, no dye, no radiation. 

For 4 years, I've lived under the assumption that I probably have cancer hiding somewhere, I just can't see it. This is the completely paranoid, scared, cynical me that knows the stats and the outcomes and is terrified of dying from cancer. Even with normal CTs and a normal (non estrogen) PET, I did not believe it. So when I learned about this test, I decided to go for it. 

The scans are available in several major metro areas around the USA, my closest in Denver. If you are healthy, you can just book a scan yourself. If you have a diagnosis of cancer within 5 years, you are required to go through a clinical review process that frankly was reassuring since I got to specify exactly what kind of cancer I had, and exactly where I wanted them to look for recurrence. 

The actual scan was fine - around 50 min for whole body + brain + spine. I watched netflix and chilled. No IV, no contrast, no needles. The results took about 2 weeks (because of the holidays) and I was emailed that my report was up. 

Then the freakout began. I was too afraid to look at the results. I was terrified that my biggest fear would be uncovered and they'd have found lobular cancer lurking somewhere. This was the only moment I regretted getting the scan. It took me a few hours, but I finally decided to open the report. 

It is an incredibly detailed report - to quote my oncologist, "I feel like I just examined your entire body in 5mm slices!" I opted for the whole body/brain/spine, and it noted every prior injury, herniated disc, arthritis, and all of the myriad things that are happening in this 50 year old menopausal body. What it didn't find, though, is breast cancer. 

For the first time in 4 years, I could take a really deep breath, and feel reassured that for the time being, I might have a normal life expectancy. I might die of something besides cancer. I had the first night of truly deep restful sleep I've had in 4 years. 

I had a list of "To Do"s and immediate triggers for my life that would've been in place should the results have been different. I'm a planner, a type A personality, and a "get your shit in order before it hits the fan" kind of gal. I've been planning for my death since the second I was diagnosed - and though I have no regrets about organizing my will, my estate, my clutter, and my digital footprint, I can now take a break in that planning and go for the "there's no cancer found" list of triggers: signing up for another 1/2 Ironman, setting some strength and physical goals, planning on a Grand Canyon Rim to Rim to Rim. Planning to turn 50 this year cancer free. 

I've spent far too much energy and time spiraling down the rabbit hole of cancer recurrence, and I'm so relieved to stop, just for a little while. Our family has a theme every year, and 2025 is our year of Celebration - we are celebrating life, love, family, friends, turning 50, and the many things we have to be fortunate and grateful for. It feels a little more like a celebration after this news, and it was worth every single penny. 

Here's to a 2025 Celebration!