Success Stories: Lynda Weatherby, When Cancer Returns

Lynda Weatherby’s breast cancer experience began in 2001 when she was 36. With no family history of the disease, she was diagnosed with Stage 0 ductal carcinoma in situ, meaning cancerous cells had been found in a milk duct but had not begun to break through the walls of the duct or spread to other areas. I was told it was a pre-cancer, she recalls, but wanting to avoid future issues with the disease, she opted for a bilateral mastectomy to remove both breasts. Because the cancer was caught so early, she didn’t need to undergo chemotherapy or radiation.

I was told I had a 2 to 3% risk of recurrence, and I should go on with the rest of my life," she says. Surgery was determined to be enough.

With the surgery behind her, Weatherby focused on raising her two kids, who were 6 and 3 at the time. She also got involved with breast cancer charity work. By 2013, her older child was ready for college. That’s when she slowly began to realize something was wrong.

I was like the frog in the boiling pot of water, she says of how subtly the symptoms accumulated over a period of several years, that started with pain in her hip after running. At the beginning, I had symptoms that should have tipped me off that something was going on, she recalls, but they were easy to dismiss as being insignificant or related to age. She sought advice from a couple of doctors for pain in her bones and a pain in her side, but both doctors dismissed these as ordinary aches that may have been incurred while running or doing yoga.

By the time the symptoms built to a crisis stage extreme fatigue, a broken rib and intense facial pain from a nerve being pressed on by a tumor it turned out she had metastatic breast cancer. It was all through my skeleton and into my brain.

The diagnosis was devastating. I thought I was good. I’d celebrated my five-year anniversary," she says. The five-year mark is widely touted as the date at which you’re considered cured, but as those who’ve had a recurrence know, you’re never actually 100% out of the woods. Cancer cells can lie dormant in the body for years, even decades, and for whatever reason can suddenly begin growing again.

Five years is a research mark, and it’s important to have that measure, Weatherby says. But it’s a measure that’s built on statistics, not individual experience. It’s a false threshold. Roughly 30% of breast cancer patients will experience metastatic disease for whatever reason, and many of those occur after that magical five-year mark.

Weatherby says that she wishes she’d been more aware of the warning signs of metastatic breast cancer earlier. There’s a metastatic cascade of disease, she says, with progressive signs and symptoms you should be on the lookout for if you’ve ever had any kind of breast cancer. Pain, fractures, extreme fatigue, bleeding and unexplained nausea should all be red flags that send you back to your oncologist for a checkup, even if it’s been 10 years since you were last seen.

Anybody who’s had breast cancer needs to live in surveillance mode. There’s no point at which you can dismiss it, Weatherby says. If something hurts, it should trigger investigation, not dismissal. She says that a good rule of thumb is that if something has hurt bone pain or abdominal pain, for example for more than two weeks, you should seek care from your oncologist, an important distinction.

The chances of symptoms being missed in an oncology setting are low. Where you run into trouble is if you’re an early-stage patient and have graduated to not seeing the oncologist. You’re seen in a primary care office, or for younger women in an OB-GYN’s office. That’s where things can be attributed to something else. These providers might not be as aware of the potentially subtle warning signs metastatic disease can send out, so Weatherby encourages survivors to err on the side of caution and visit with the oncologist if something seems amiss.

Since her diagnosis with Stage 4 breast cancer, Weatherby has had better-than-median results on an oral medication that suppresses estrogen. But in summer 2019, I had progression for the first time, which means that my first therapy stopped working. The cancer gets really smart, she explains. Cancer can develop ways to work around a medication and start growing again. You hope to go as long as you can before resistance sets in, but then you have to switch to the next therapy.

Currently, there’s a pretty good arsenal of drugs for estrogen-positive metastatic breast cancer, she says, so she’s still got several options. She’ll work through them as she needs to. We’re always sort of living in hope that there’s a next breakthrough. But these medications are expensive. Weatherby knows she’s lucky to have good health insurance and that she doesn’t have to try to hold down a 9 to 5 job; she left a career in health care administration to raise her children. When the cancer returned, she focused her energy on advocacy for metastatic breast cancer. Advocacy is my unpaid career at this point, she says.

I’m very fortunate," Weatherby concludes. I’ve done really well for six-and-a-half years. The median survival rate is three years, and she’s well surpassed that. Her doctor has noted that median is a statistic, and you are not a statistic. And although the cancer is in her brain, it hasn’t impeded her ability to function. Compared to a lot of people, I have nothing to complain about, she says. But still, the question of when her cancer will make its next or final move hangs over her every day. It’s like having a sword over your head. You don’t know when it’s going to accelerate.

Her advice to other survivors is to pay attention to changes in your body. There are way too many patients like me who were kind of encouraged to think in terms of, ‘you can forget about it. It’s cured.’ But the only way to really protect yourself is to really understand what metastatic breast cancer looks and feels like. If you have those symptoms, push for an evaluation. Hopefully, it will be just a pulled muscle.

She also encourages those who want to make financial donations to make sure the money is going to metastatic research. That will be the answer to saving everyone with breast cancer, she says. If you can figure out how to stop metastatic breast cancer and intervene in the cascade of events, you’ll save metastatic lives and prevent early-stage breast cancer from becoming metastatic.

She also notes that two important bills that could help people with metastatic cancer are currently working their way through Congress. H.R. 1730 Cancer Drug Parity Act of 2019 seeks to ensure that insurance carriers cover chemotherapy medications regardless of how they’re administered (at home versus in a clinical setting or in pill or liquid form). And H.R. 2178 Metastatic Breast Cancer Access to Care Act aims to eliminate waiting periods for federal disability insurance benefits and Medicare coverage for people with metastatic breast cancer.

These are really important, Weatherby says, and she urges those who want to join the fight against breast cancer to petition your Congressional representatives to support these bills.

Credit: health.usnews.com/conditions/cancer/breast-cancer/articles/stories-from-breast-cancer-survivors