The story of how I found out I had breast cancer

Several people have asked me how I found out I had breast cancer in the first place - since I was 28, with no known family history and no risk factors. I also happen not to have a gene for it, which I know because I did genetic testing after I found out. I was just that unlucky and unlikely, less than 1%. So, here is the story. It's not that exciting, just a little bit of a caution to all women, that's all.

I'm no authority on breast cancer statistics, although yes, I do know a lot about it, but just to clear up one common misconception, 80% of breast cancer instances are in women who have no known family history and no risk factors. You may think you are less likely to get it if no one in your family has had it, but it isn't true. If you aren't checking yourself, you need to be. No matter how old, or rather, how young you are. I wasn't checking myself, not with any regularity anyway. It can save your life you know. How early you find it can mean the difference between taking chemo drugs and not taking chemo drugs, between losing your fertility as a result of those drugs and keeping it, between it spreading and not spreading, and it can change your long term odds significantly. You need to check yourself.

I had moved to Chicago for a job but hadn't started yet so I went back home for my annual exam because I still had insurance there. My doctor found something that felt like a fluid filled cyst during the exam. Right at 12 o'clock and very high up. Impossible to miss, if you were looking. It wasn't there last year when I had my exam. How could I never have noticed it, even if I wasn't checking every month? It had to be a cyst right? I was 28 and it was huge, squishy and freely mobile. If you know anything about breast cancer, you know that it is never described as soft and squishy and freely mobile. It is described more like a hard pea, and locked in place. So when you are checking yourself, don't only feel for things that are hard. The problem though is that it is hard to distinguish between lumpy breast tissue and other soft lumps. So if ever you are in doubt, don't make any assumptions.

She told me not to worry but just to get it checked again when I get back to Chicago. I panicked. She sent me for an ultrasound. They said it wasn't fluid filled, definitely solid, had to be a fibroid, because I was 28. Just check it again when you get back to Chicago they said, but you don't need to worry. So I started my job, got my insurance all set and made an appointment. Same story - not fluid filled, definitely solid, but it has to be a cyst because I was 28. The doctor said it was unusually large but that it didn't necessarily need to be removed. She recommended waiting for 6 months, checking it again and if it was getting bigger, well, then we would think about removing it. But couldn't it be something other than a fibroid? Shouldn't we check? She said no, that I was only 28.

We went back and forth about it and finally I said, I want to know now that this isn't anything. Why would I wait 6 more months to know that this isn't anything, if you could tell me now? Because you are only 28 she said, you couldn't have breast cancer. It would be extremely unlikley. So I said, well, let's just check then. If you can prove it to me, I want you to prove it to me now, not later. So she gave in eventually after a lot of discussion and did a biopsy and told me not to worry because the chances that it was anything bad were less than 1%. Well, the rest is history right. It came back as breast cancer and the course of my life has been forever altered. She didn't know what to say and I switched doctors. Not only did I have breast cancer, but about as dangerous as it can be in terms of cell growth and spread. The tumor was already 4 cm. In an ideal world you catch it when it is less than 1 cm. You need to catch it a lot earlier than I did. I was lucky that it hadn't spread (at least as far as we can know that). Can you even imagine if I had waited 6 more months, on her recommendation, just because of my age?

Then I sent my all of my biopsy slides and films etc. up to the hospital in my home town for review. Up there I found out that the tumor, based upon the characteristics of it, probably grew to that size in less than a year. I asked the radiologist at this other hospital if it looked like breast cancer on the films. What does it look like? I just wanted to know. Turns out it isn't all that obvious on ultrasounds or mammograms (or MRIs as we just found out) whether something is malignant or benign, but he told me that if they saw the same thing in someone even 10 years older, the doctors would have been terriried. He said that the sole reason the doctors and radiologists told me to wait was because of my age. It's simple, it's just a numbers game, because to them I am just a statistic, an unlikelihood. I also found out that in between the original ultrasound and the one that I had one month later - the tumor had grown measurably. It was extremely fast growing.

I really can't imagine why a doctor would ever tell a woman to wait if there is some kind of lump in her breast. It doesn't make sense to me. Likely or unlikely, it just doesn't make sense. We are talking about life and death here, we are talking about differences that impact your survival.

The bottom line is, you need to check yourself, even if you are only 20, you need to check yourself every month at the same time. And if you find something, don't wait to get it checked out and don't make any assumptions because of your age and your family history. And if your doctor is making assumptions, you need to get a new doctor, period. Just get a new doctor. Don't let them tell you about statistics and your age because it's not going to matter how unlikely it was when you find out later you have it and it's spread all over your body and can no longer be cured.