Sarah’s Oversimplified Guide to Breast Cancer

Throughout this year, my understanding of my own cancer (and cancer as a whole) has kept evolving. A year ago today, when I first got the call, all I could think was “WHAT?!” amidst the buzz of white noise in the background: “Am I dying?”

The average person (unless they happen to be an oncologist) really doesn’t know much or think much about cancer. That is, until they or someone the know has it. It’s inevitable that you’ll someday know a woman who has or had breast cancer, whether it’s a family member, a colleague, a friend... There are men who develop breast cancer, too, of course, but it’s a much smaller chance: 1 out of every 100 breast cancers diagnosed is found in men.

I know that I didn’t think much about breast cancer at all before my diagnosis. I’d been tuned into it a bit more because, the year before my own diagnosis, a friend and coworker of mine was diagnosed. I’d seen her do so well with treatment that I realized there must be more to this word “cancer” than my automatic fearful assumptions. Don’t get me wrong-- it’s still probably some of the most distressing news you can receive from your doctors, but although not yet considered “curable”, most cancers are more survivable these days than ever before. Metastatic breast cancer, also called stage 4, is the only kind of breast cancer that kills, because it has spread to vital organs. My husband and my dad both came to my first appointment with my oncologist, and my dad had asked him the prognosis. He replied that if the disease had only spread regionally (we already knew it was in at least one lymph node in my underarm), it was “essentially curable”. If it had spread to vital organs, he noted more quietly, I had approximately “3-5 years”. 

There are technically 5 stages of breast cancer: stage 0, 1, 2, 3, and 4. Scans a few weeks after my initial visit verified that the cancer hadn’t spread beyond my lymph nodes, so due to the large size of the tumor, I was considered stage 3. Stage 0, ductal carcinoma in situ, is technically not cancer but a pre-cancer stage. If a person is diagnosed with stage 0, though, they’re not out of the woods. They will likely have to undergo a mastectomy or lumpectomy and radiation because it will become cancer eventually; preventative surgery is the best way to stop it. Stage 1 is when one or more tumors have been detected in the breast but have not yet spread beyond the breast tissue; stage 2 and 3 are similar, but stage 3 means the tumor is larger and/or more lymph nodes are involved. Stages 2 and 3 usually require chemotherapy to stop the cancer from spreading; at stage 1, doctors will use other information to make that decision. Neoadjuvant chemotherapy is when you receive chemotherapy before surgery to shrink the tumor and stop the spread; adjuvant is when you receive chemo after the initial treatment, to destroy remaining cancer cells. My plan involved neoadjuvant chemotherapy, which started two weeks after the birth of my son (because post-partum life isn't difficult enough, right?).

Left: The day I received my diagnosis, Dec. 30, 2019
Right: Dec. 2020, post-treatment and "NED"!

There are other considerations besides the staging of breast cancer. It’s a cancer that can often be driven by hormones, so many women have ER+ or PR+ cancer, which means that their estrogen or progesterone are driving the tumor’s growth and spread; they will usually need to take other medications or chemotherapy to stop this type of cancer and to prevent their cancer from returning. They may also need or be encouraged to undergo additional surgeries, such as a hysterectomy or oophorectomy; they would discuss this with physicians. There was also another factor contained in some breast cancers, a protein called HER2. This protein was discovered in 1987, the same year that I was born, and it would turn out that this is the type of cancer I was diagnosed with. My tumor was ER-/PR-/HER2+. Just a couple decades ago, this type of cancer was feared; today, I could almost see my oncologist’s sigh of relief at the pathology report. There are chemotherapy drugs these days that are really good at treating this aggressive form of cancer. For instance, my tumor was larger than 10 cm and seemed to have tripled in size during the three months when I first noticed something was off and when I was finally able to begin treatment. However, during chemotherapy, the drugs basically incinerated my cancer, and there were no remaining traces of my tumor during surgery. Thus, the doctors say I had a “pathologic complete response”, a pretty amazing response to chemo. It’s not unusual for patients who have HER2+ breast cancer to respond really well to chemotherapy, but it seems to be most difficult to effectively treat patients who have triple negative breast cancer (not ER, PR, or HER2 positive); though they certainly can have a good response, more research needs to be done to help patients in that scenario. Of course, the most research needs to be done for women with stage 4 cancer, whom cancer impacts daily.

As a stage 3 patient with HER2+ cancer, I received six rounds of neoadjuvant chemo, a mastectomy and removal of five lymph nodes in my underarm, and 25 rounds of adjuvant radiation. None of those treatments alone should be taken lightly, and together, they can really wreak havoc on your body. Still, they are preferable to dying.

So that’s breast cancer in a nutshell, from an English teacher/writer/kickass survivor mom’s perspective. I’ve learned that, though I am now considered cancer-free, doctors can never guarantee that surgery, chemo, and radiation destroyed all of a breast cancer patient’s stray cancer cells. This is why they don’t typically say someone is “cured”, but instead use the terminology “NED” or “No evidence of disease”. 

They watch patients most closely the 5-10 years following the completion of the treatment plan because that’s when any microscopic cancer cells that, if they were missed, will reveal themselves as they settle somewhere else in a person’s body. That is probably the most terrifying thing about being a cancer survivor: you can never know with 100% certainty that the cancer is gone. Headaches, bone aches, and other pains can leave you wondering if it’s the cancer recurring in a place where it can’t easily be fought or removed. This is why many doctors will prefer a more aggressive treatment plan; they want to eliminate that potential for recurrence. 1/3 of women who are diagnosed with early stage breast cancer will go on to become metastatic, and that often happens 5-10 years after their initial diagnosis. My oncologist reassured me that, with my response to chemo and my team’s aggressive plan, my odds of recurrence are less than 6%, which sounds promising. I’ve also told myself that I can’t spend my time worrying. I’d rather do something fun-- spend time with my family and friends, go outside, walk, write, read, travel, dance, live-- whatever it may be. Cancer sucks: there is no way around that, but you can look at it a thousand different ways. I am going to choose to look at it as a rebirth. I can take this time to appreciate everything more, knowing that every day is a chance to do something meaningful and special, no matter how small or simple it may seem, and to look for opportunities where I can make a difference for others.

Sources: 

Radical: The Science, Culture, and History of Breast Cancer in America by Kate Pickert

Twisting Fate: My Journey with BRCA-- from Breast Cancer Doctor to Patient and Back by Pamela Munster

My team of doctors, nurses, etc. at Mayo, who patiently answer all my questions

Young Survival Coalition Facebook group's women, who have so much to share