I wrote this post in my personal cancer journal shortly after being diagnosed with breast cancer in October 2011.  Today – October 25, 2015 – is my four-year “Cancerversary”.  Given this week’s news about changing mammogram recommendations, which will put even more of the burden on women to make sure they receive appropriate breast cancer screening, I am sharing my diagnosis story more publicly in hopes it helps others help themselves  … and listen to their body … and get good care.  

The new mammogram recommendations have stirred up a lot of confusion. To me, the message that matters most is still to stand up for yourself and your health care … because ultimately you are your best chance of making sure you get the health care you need, regardless of screening protocols.  Now, when asked, I tell younger women:  Yes, get your mammogram as the default precaution – even though it’s imperfect and even though it didn’t work for me – unless you and your doctor discuss the pros and cons of delaying and you are comfortable with that decision based on your personal family history and situation.   Yes, do your self exam.  And most importantly, mammogram or not, be ready to stand up for yourself and fight for good medical care.

You are welcome to share this to those who you believe will benefit.  Thanks.

Protocols in health treatment can guarantee a reasonable standard of care, but they are also formidable barriers.  My cancer diagnosis was a wake-up call.

Last October I called to schedule my regular mammogram.  I felt around on a self-exam (which I rarely did) before going in, and to my surprise found something – a hard round pea-sized knot up near my right armpit.  I went in to the breast center for my appointment and told them that I felt a lump.  I wanted to make sure they knew to get that spot in the mammogram.

Their reaction shocked me.  Apparently I was outside of protocol.  Protocol is that I go to my doctor first to get a “diagnosis code” and a referral (even though the breast center has been doing my screenings for over 10 years).  Because apparently a screening mammogram isn’t the same as a diagnosis mammogram. And mostly I think the breast center wanted to get paid for the right procedure.

So I was escorted into the nurse’s office and chastised for not getting a referral from my doctor.   I was told I didn’t have the correct “diagnosis code”.  They did the screening mammogram anyway, but then refused to read it.  They called my doctor’s office for a referral.  It didn’t come immediately so they sent me home.  Mammogram unread.  With cancer.

A few days later I got a call from the breast center – my referral came through and my primary care doctor authorized a diagnosis mammogram and ultrasound on the right breast.  The woman calling to schedule me had no idea of what happened the week before.

I called the breast center and asked for the nurse.  I asked her – “What did my screening mammogram say?”  She said it was negative.  I asked, “Is it worth going back in for a work-up?”  She was non-committal.

So I scheduled the follow-up.  Even though the mammogram was negative – the mammogram done after I pointed and said “make sure you get this spot”.  When I scheduled I felt silly … like this was a waste.  I almost called back a couple of days later and cancelled the appointment.  I was still annoyed at my earlier experience, and doubted my own instincts.  But I didn’t trust that they got the lump in the mammogram, even after I pointed out the spot.  And there was something nagging at me …

I went in for the follow up.  They did another mammogram.  Again, the mammogram was negative.  Then they did an ultrasound. She found my lump.  “I think we need to biopsy this. ”

They called me back 5 days later.  After I had to call THEM to ask about my results.  The radiologist finally called me back.  It’s cancer.  My life just changed.

And I almost didn’t go in for that follow-up.  I almost accepted a mammogram result that didn’t even catch the lump … even after I pointed to it several times.  The mammogram missed the cancer twice, and probably in previous years since these tumors are slow-growing.   Perhaps because it was so far under my armpit.  Perhaps because as a 44 year old woman with dense breast tissue, they couldn’t see it.  Perhaps because one of the tumors was unusual lobular cancer which is hard to see on imaging.

But beyond a screening test that failed multiple times, the breast center then refused to read the mammogram.  Instead, they sent me home with breast cancer.  Why?  Because they didn’t have the insurance code they thought they needed to get paid.  And the radiologist didn’t want to take responsibility for my diagnosis – protocol said it was the primary care doc’s job.

So what do you do with that information moving forward when making the critical decision about where to get cancer care?

After all this digested and the shock of diagnosis wore off, I realized that I would never have confidence in the hospital that diagnosed me to heal me.  So getting treated there wasn’t an option.

Ultimately if you don’t trust your doctors and cancer center, you won’t trust anything they tell you.

I’ve learned that even though I’m now being treated by one of the best cancer centers in the country, I still have to be very vigilant about getting the care I need.  Anything outside a normal “protocol” for treatment requires perseverance and follow up.

An example is my follow-up screenings.  Protocol says that only high risk patients get an MRI and a mammogram to look for cancer.  Being a previous cancer patient doesn’t qualify as high risk – somehow.  But since I had unusual lobular cancer – which is missed on mammograms and was missed on my initial diagnosis – I qualify.  But I had to push to get an MRI.  Because screenings don’t do any good if they don’t catch the cancer.

But how many people will learn enough about their disease to push in their own interests?  And how many will just churn through the impersonal and big-business breast cancer screening system that focuses on screening large number of women but not on the individuals behind the diagnosis codes and insurance billing.

Protocols are one thing.  You as an individual are another.  Don’t be shy.  Trust your instincts.  And push for answers if the initial response doesn’t make sense.