How Do You Die Of Chronic Cancer?

How does someone diagnosed with a chronic disease die of that disease within two years? On social media in mid-July, and especially in breast cancer Facebook groups, there were a lot of questions about how it was that actress Kelly Preston could have been diagnosed with breast cancer two years ago and already be dead because of it.

I don't know if her breast cancer was caught early. I don't know if the two-year timeline is how long she lived with metastatic cancer after an early-stage diagnosis or if she was diagnosed stage IV from the get-go.

To me, none of that matters. What matter is this: In the US alone, the estimated number of deaths due to breast cancer every single year is over 42,000 and people with early-stage breast cancer that is considered cured remain at risk (estimated to be between 20% and 30%) of metastatic spread to bones, lungs, liver, brain, etc, regardless of the treatments they received, regardless of how well they eat and how much they exercise.

So why doesn't the general public understand that breast cancer continues to kill in large numbers? How should the general public be expected to understand when people living with breast cancer are frequently unaware of the realities of stage IV breast cancer?

I am, of course, disappointed that Ms. Preston didn't share her story. But no one, least of all a person dying of cancer, should be told what to reveal and how to do it. If she didn't want to share her story, that is 100% her choice. But that does not excuse the journalists and healthcare experts who covered the airwaves on television and on social media with the focus on urging women to get their mammograms.

Yes - get your mammogram. Yes - if you have dense breasts, know it and get the right screening for you. Yes - ask your healthcare provider how to do a monthly exam. Yes - know that if you're a man, you can get breast cancer and check any suspicious changes. But also know and share the facts about metastatic/stage IV breast cancer. It doesn't help anyone, except maybe people who profit off fear, to silence and sow confusion around breast cancer.

Don't tell the public or your patients or your friends that breast cancer is now "chronic" even if, by the strict medical definition, it is. Doctors and journalists and media experts have a responsibility to use words in the way that their audience understands them. Chronic to me, and to my friends, means having a condition or illness that has a treatment I can stay on for years on end, to my full life expectancy or close to it. It doesn't mean that I can anticipate treatment with progressively harsher drugs, with progressively worse side effects and collateral damage, and still die early, decades before what would have been expected.

Don't tell me breast cancer is chronic when I open up my computer every single day to deaths and cancer progression of people like Kelly Preston, who died at the absurdly young age of 57 despite her wealth, despite her connections, and despite her care.

According to the American Society for Clinical Oncology, "About 6% of women have metastatic breast cancer when they are first diagnosed. More research is needed to determine how many people with non-metastatic breast cancer later develop metastatic breast cancer." The 5-year survival with metastatic breast cancer is just 27% for women and 22% for men.

Tell us the truth.

Giving hope without facts is only spreading false positivity. Saying that metastatic breast cancer is "treatable but not curable" without providing the statistics about survival and without commenting on the harsh realities of ongoing treatment is harmful. The result is the huge blind spot that was revealed in the public's shock at Kelly Preston's death.

Breast cancer continues to kill more than 115 people every day in the US, year after year. The same as it has done for decades. More money, more research, better treatments for stage IV - these are the needs everyone should hear about when talking about death from breast cancer. Not just mammograms.