THE BLOG
08/23/2014 10:50 am ET Updated Oct 23, 2014

Cancer Messed With the Wrong B*tch: Riddle Me This

Martin Barraud via Getty Images

Recently, a very close friend asked me to explain why people, especially people with
metastatic cancer, get upset when we see the headline, "mammograms save lives." It's one of those questions that can divide the breast cancer community, who should all be on the same side (remember, we're all against the cancer).

So, here's my take on it. Mind you, it's my view based on my experience. You might agree, you might disagree, but just keep an open mind.

Pretend it's the year 2012, you're 30 years old and start to notice that one of your breasts is swelling. Followed by what looks like a rash, dimply skin, and a disappearing nipple. Let's say you just started running again after a break due to a back injury and you think it's related. So, you ask Dr. Google, "Can running cause one breast to swell?" Dr. Google diagnoses you on the spot with Inflammatory Breast Cancer (IBC) and insists that you get to a doctor ASAP. Two days later you go to a breast specialist who happens to be one of the rare ones that has seen IBC before. You say, "I think I have IBC." She doesn't disagree.

Procedure dictates she must send you for a mammogram and an ultrasound to confirm, even though textbook IBC symptoms are glaringly obvious and IBC rarely shows up on a mammogram.

Problem is, you don't have insurance. The doctor and receptionist spend the next 30 minutes or so calling down a list of facilities that offer free mammograms. Only, one by one, they all respond with, "We're sorry, the patient is too young, and we can't help her. You then have to wait two weeks to get into a clinic where the tests (mostly the ultrasound and blood work) confirm that yes, you in fact do have inflammatory breast cancer.

It's a month later when you finally start treatment (six weeks from the onset of symptoms) and your breast has swelled even more, causing pain (and a crapload of anxiety).

Yes, inflammatory breast cancer can spread that quickly. But you're only 30 years old, so what's the urgency?

The urgency has nothing to do with age. The urgency has to do with the fact that you have cancer. Inflammatory breast cancer is one of the most deadly breast cancers.

One reason for this is that the symptoms resemble a breast infection, so antibiotics are prescribed for weeks, or even months, while the real culprit, the cancer, continues to spread. By the time anyone realizes the error, it's often too late.

And what about the women, and men, who have breast cancers that will be detected by mammograms but are deemed too young? By the time young women and men are old enough to be eligible for mammograms, many will be too dead for it to save their lives.

Guidelines state that the most common age for breast cancer is between 40 and 60. Those guidelines are outdated and harmful. Way too many young people are being diagnosed with cancer, and being diagnosed too late. The problem with age related guidelines is that cancer follows it's own guidelines and goes after whomever it chooses, whatever the age.

So yes, mammograms do save lives. But they only save a percentage. And early detection can only help those whose doctor actually listen to them.

I hear way too often about younger people's concerns being written off due to our age.
So why are people who are "lucky" enough to be in the correct age range the only ones that get to benefit from early detection? Why can't a 30-year-old get the same care? Is it because many people associate youth with health?

Because we look healthy on the outside, we must be healthy on the inside? Well, I know for a fact that you shouldn't judge a book by its cover, and you damn well shouldn't judge a cancer by its body.

Exactly a year after I was diagnosed with stage 3 IBC, the cancer spread to my bones, boosting me to metastatic (stage 4) inflammatory breast cancer. It meant a change in medication and treatment, and the start of scans (for me, a CT scan and a full body bone scan) taking place every three months. Up until this past April, things have either gotten worse, or remained stable. But the scans in April actually showed that things might be improving. That, coupled with pretty good blood work, and the fact that I was feeling pretty good-ish, my oncologist let me wait an extra month for scans.

In the four months since my last scans I've been out and about more than usual thanks to the seemingly endless winter actually ending. I've seen people I haven't seen for a while, and have seen other people more regularly. They always comment on how good, specifically, how healthy I look, and how good I must feel to be rid of the cancer. Then I go into my spiel about how I have metastatic breast cancer and will never be rid of the cancer, and after a look of confusion they respond, "well, at least you look good."

Fine, I look healthy on the outside, but in those four months since my last scans, my body has actually been breaking down. New scans last week show progression. The cancer is spreading.

Once cancer is in your body, it's there. Sneaky microscopic cells hide out sometimes for a long time, and then bam, reappear. Cancer does what it wants. There's no way to know what it will do next. Or is there? Hmmm, there's this thing called research. Where doctors can study cancer, particularly in patients with metastatic cancer, and see how it behaves. How does it grow? What makes it grow?

And more importantly, can anything stop it? Yes, every cancer found through mammograms and early detection can be considered a victory. But a short lived one. Even the earliest found cancers at stage 0 can return, sometimes very quickly, and reappear as stage 4. Then what good did the early detection do? Yes, being more aware helps, but giving people a false sense of hope that early detection means longer lives is dangerous. About 30 percent of all cancers start out, or end up, at stage 4. Yet metastatic cancer only gets at best 5 percent of funding for research. Everyone with metastatic cancer will die from the disease. Some very quickly. Yet it's still possible to live for years beyond what doctors think. Why aren't we being studied? Follow us! Find out why one of us may be progressing quickly, while another one is slow. Why can someone do well for years with mets, but then die within a few months of a new area of progression?

My cancer is now in four spots in my bones, as well as the lymph nodes under my arm, and a lymph node between my trachea and esophagus, that is making it difficult to breathe and causing me to have painful coughing fits. There are a few other areas "of concern," but we won't know more until more test are done. My oncologist is switching my medication. I'm now getting two injections once a month, and have a new daily pill (it's supposed to be two daily pills but one of them is $11,000/month -- but that's a whole other post).

The hormone therapy I was on clearly stopped working, even though four months ago it seemed like it was. Why? How? Most treatments are trial and error. But cancer has been around long enough that we should have more answers, and more options for treatment. I'll very gladly offer my body, as I continue to live and breathe, and grow cancer. Put me on a table, á la the "Operation" guy, and poke and prod me until my nose lights up and you get your answers.