STAGE ZERO: MY BREAST CANCER JOURNEY

MORE POKES, PRODS, AND PLANS: HERE’S THE IN-SITU

My earlier post indicated I underwent 8 tests. Yet, where we last left off, I had only undergone 4 of those. Buckle up… 

Yes. It was cancer. Ductal Carcinoma In Situ, stage 0. As it was explained to me, I had Ductal Carcinoma In Situ (DCIS). The good news? It was caught early. My non-invasive breast cancer was confined to the milk ducts in my left breast for now. And … stage 0? That’s even a thing? Yep. But, as with many stops in my breast cancer journey, this information was multi-layered and would lead to more questions. 

Within Stage 0 DCIS breast cancer, there are grades of severity. Grade 1 is low. Grade 2 is intermediate. Grade 3 indicates high growth rates and the potential to spread. My biopsies showed that my cancer was Stage 0 at grades 2-3. It was time to take action. We had to act now before my cancer grew into Stage 1 (the potential to spread elsewhere in my body). My shock was pacified by the survivalist and naive notion that this was no big deal. I’ll get a lumpectomy to remove some tissue – it’ll all be over within a few months. Right? 

Nope. Let’s move ahead to Test 5: the MRI. 

Fresh back from our late-summer vacation, I went to the hospital again. This time for an MRI (Magnetic Resonance Imaging). Even more information was needed before meeting with my Breast Health Care Team. The MRI images would help us see the cancer, informing the surgical staff of my prognosis and path ahead. And, for the first time in two months of testing and imaging, my right breast was invited to the party. Yay.

The 1-2-punch went like this. I went in for my MRI on a Tuesday morning. Then, I met with my Breast Health Care Team the next day. We’d review the MRI findings and talk about “what now”. 

First things, first: Let’s look at those images.

Sometimes, when you’re looking at your insides on-screen, you need to be told what you’re seeing. Like when looking at those first ultrasounds during pregnancy. Color-contrasting MRI images are not like that. The knowledge was instantaneous. What the Radiologist didn’t need to explain to me was just how much DCIS Stage 0 breast cancer I had. Though microscopic, the spread was horrifyingly rampant. At least half my left breast was lit up in a glaring hypercolor “black & white” reality. The news was not good. This was a big deal.

My eyes then panned the screen to my right breast. That boob, the one that was all but ignored all summer long, was lit up too. Though there was still a lot of uncertainty in my head, one thing was for sure. They would need to biopsy those two masses in my right breast. We had to know with certainty if it was breast cancer. 

Seeing how severe the spread was on my left. Then, hearing the news that more biopsies were needed on my right breast. Well, that was the 1-2 punch that took me down. And this news was shared all within the first 10 minutes of my four-hour appointment. 

In the end, I was told they’d need to remove my left breast nipple and tissue. I’d get to keep my skin. As for my right breast? That was a “wait and see” situation. But I knew almost instantly I would choose to remove it. In part, because I didn’t want to have another biopsy. I’d rather they just take the boob than endure another invasion. But, regardless of that mindset, another biopsy was scheduled. 

I was no longer in a position to make choices about my body. And that was scary

I also knew in these first steps of my journey, I didn’t want to walk this path. Not now, let alone again in the future. The right boob had to go. 

I jokingly shared, but believe this to be true: You never want to hear “you’re so young” from your doctor. Trust me, I’m well beyond being flattered when carded for wine. But I do want a future that includes my doctor telling me I’m old. The reality that amputation would save me was, and is, surreal. 

Test 6: Genetic testing – aka, do I carry inherited mutations to the breast cancer genes BRCA1 and BRCA2? These mutations would put me at high risk of contracting Breast Cancer again. They would also place my kids in a high-risk category. The nice thing about this test is that it was a simple blood draw. The not-so-nice thing about this test is that I was D-O-N-E. Done with the pokes, prods, anxiety, and anticipation I had to overcome during each step of this health crisis journey. 

Every time I finish another patient intake form, I feel woefully unprepared. Answering family history questions about the health of my immediate and more distant relatives is impossible. I simply don’t know. Some of this is generational: older aunties and uncles don’t talk about personal stuff. Some of it, societal: patient privacy is major, so we treat this information as precious, and it becomes mysterious. The other nice thing about the test was the potential to unveil an undeniable truth. And, finally, the best part was hearing that I did not have this mutation. If my kids had this mutation, it was not from my side of the family. But that’s another journey for another time.

Tests 7 & 8 came next. AKA: the reason it has taken me two weeks to get back to writing this post. After I received the news that I didn’t carry any gene mutations, I decided on a bilateral mastectomy. Initially, I thought, “I’m going to have them remove my right boob, so no reason to biopsy”. They could test the tissue all they want once it’s gone. 

So I canceled my biopsy (singular at that point) and enjoyed a deep breath. This is when my Surgical Oncologist intervened, and the complexity of breast cancer further revealed itself. If the masses in my right breast were cancer, the Oncologist would need to know in advance of my surgery.

Being told “No” was…Hard. I still don’t have words, only tears. What’s worse, when rescheduling my biopsy, I was told I’d need TWO. An ultrasound-guided biopsy was planned on a Thursday, two weeks before my surgery. And, if they couldn’t obtain the necessary samples on Thursday? No problem. An MRI-guided biopsy was scheduled for the very next day (TGIF?). 

Don’t ever let anyone tell you that a biopsy is no big deal. 

The anticipation for each appointment was just as agonizing as waiting for the results. Thankfully, all were negative; they found zero breast cancer in my right breast. By the time I heard this good news, I was days away from my bilateral mastectomy. Time I spent nesting, tying up loose ends, and trying to relax–while also harboring anger toward my Surgical Oncologist. “Why go through all that if they’re just taking the tissue anyway?” What I didn’t know at the time was that I’d be capable of answering that question quickly during recovery.