Here's the Article I've Been Waiting For

Finally, here's an article about the value of adding an MRI and/or ultrasound to mammography for women with dense breasts. It's all here, and from my experience, it's all true. Ask your doctor if you have dense breasts and talk about a good screening program. As the article states, having dense breasts (common in young, premenopausal women) makes one six times more likely to develop breast cancer! That's huge.

My Mammogram Comments

I've been waiting to weigh in on the new mammogram guidelines because I wanted to see where the conversation would go.

I'm disappointed, though not surprised, it hasn't yet made it past a clamoring for the status quo. "Give us back our mammograms and all will be well!"

Actually, the findings show that's not the case, especially for young women. Even more so for those younger than 40, a population that no one's looking to screen. And the group where breast cancer rates are growing the fastest.

Forget awareness, let's get specific in our goals and demands: Develop a viable breast screening modality that will work with young women's dense breasts, and give it to all women starting at 30.

The fact is, if I can get breast cancer at 37.5--someone who's healthier-living than most and who has no genetic risk factors (I had the test, so I know for sure)--anyone can.

There will be a lot of advice to women on how to proceed in light of the new guidelines, but here's my 2 cents. Ask the doctor who orders your mammogram to tell you if you have dense breasts (if the report doesn't indicate, have her/him go find out from the radiologist). If the answer is yes, ask for a breast MRI. This, not a mammogram, is the "gold standard" for young women with dense breasts. It's the best we have for now, but I'd love something easier, something better.

And as for breast self-exams--feel your breasts, know your body and tell your doctor when you think something is different or not right.

I could go on, but I think the Young Survival Coalition says it well in their press release:

"This current debate regarding the effectiveness of mammograms highlights the issues facing young women. While over 11,000 women under 40 in the United States are diagnosed with breast cancer annually, there is still no screening method for early detection of breast cancer in young women. Survival rates for young women diagnosed with breast cancer are significantly worse than their older counterparts and the disease is often detected at later stages and is found to be more aggressive. Without access to proper and timely care, a woman’s odds for survival decrease.

Mammography has been found to be an ineffective screening mechanism for this population because of their breast density. Accordingly YSC urges all young women to be familiar with their bodies, know their own personal risk factors for breast cancer, be aware of the signs of breast malignancies and to promptly consult with their health provider if they have any health concerns."

Is Mastectomy a Better Option if You Have Dense Breasts?

This BBC article says there's an increased risk of breast cancer recurring in dense breasts. The focus here seems to be seeing if women with less-dense breasts might be able to skip radiation after a lumpectomy.

I'd say it also suggests that women with dense breasts should opt for a mastectomy rather than a lumpectomy. It also makes a great case for giving women diagnosed with breast cancer an MRI before surgery to get the clearest picture of what else might be going on in dense breasts before deciding on a lumpectomy or mastectomy.

In my case, an MRI showed two additional areas of concern in another quadrant of the breast, away from the two tumors I found.

After reading this, I know I'm happy I chose mastectomy rather than lumpectomy. I'm also happy I chose to have radiation. Hit it with everything up front so hopefully I'll never have to deal with it again.

To most people who've never had to make the choice, I'm sure a mastectomy seems very drastic, but it gives you more reconstruction options. In my opinion, it's not as horrific as it's held up to be. It ain't no picnic, but it definitely isn't the end of the world.

Mammograms Have Flaws

I'm loving the articles questionning the universal value of the mammogram. There are cases when the screening is not enough and when it's too much.

Here's a link to the New York Times article that includes these great sections:

"One risk factor is having dense breast tissue, which is a double threat: cancer is more likely and harder to detect, because X-rays do not penetrate this tissue as well as they pass through fat. The only way to find out whether you have dense breasts is with a mammogram, and the radiologist’s report should mention density, Dr. Esserman said. Patients may have to request the full report."

"Younger women, she said, are less likely to have cancer, and they tend to have dense breast tissue, so mammograms are more likely to miss tumors. For them, she said, “it’s radiation without much benefit.” (Dr. Susan Love)

But the article falls short because it doesn't tell women what they should do if the report says they have dense breast tissue.

I'd say if you're following up about something odd that you or your doctor feel, demand a sonogram and a MRI and biopsy if they're not offered--whatever it takes to find out for sure what you're dealing with.

If it's just annual screening, I'd suggest talking to your doctor about MRI as a better screening tool for you.

A couple key takeaways for me: mammograms aren't good at catching the very aggressive cancers, and they can't penetrate young women's dense breast tissue. Young women very often have more aggressive cancers. So, ergo, let's put more effort behind studying this disease as it affects young women.

My favorite paragraph is this one:

"In a certain sense, I have to confess that I’m happy if the public gets offended or infuriated” by the debate, Dr. Formenti said. “I want taxpayers to say: ‘You have no clarity. Study it. Stop telling us you are a good girl if you get a mammogram.’ ”

Yes, let's talk about it, and then let's really do something about it!!

For a Moment, I Thought This Was Settled

OH MY GOSH!!! You have got to be kidding me. I got a call yesterday from my ob/gyn's office saying she had written orders for a bi-lateral breast MRI, and to call them back to schedule.

I did that this morning and was told the nurse wanted to talk over some more things with the doctor, and she would call me back this afternoon.

When she called, she asked how I was doing, and, with that uncharacteristic pleasantry, I knew something was up.

She said the ob/gyn is turning this over to my onc to schedule. I asked what that means for me going forward. She had no answer.

I know the answer: it will continue to be a fight to get both tests arranged, and the farther out from diagnosis I am, the less compelling my need for both tests will seem--to everyone except me.

When I asked the question about who's handling this going forward of my onc's nurse, she said she thought I'd be happy they're making this easy for me.

What's easy about working to get this all with one dr--my ob/gyn--for over a week and still having it split between two?

My ob/gyn's office says they need "guidelines from the onc." But they didn't say they would take over handling this once they have those. And, when my onc's nurse called to make my day, she didn't say they were providing guidelines to the onc so she could do it all in the future.

So--I told the onc's nurse to get my onc and my ob/gyn to work together on this, come up with a yearly plan and decide who's going to run it all. I also said if either one isn't on board to please ask the two of them to find me doctors who will work together to get this done.

It can't be right that I would have to start from scratch and have to make months-out appointments to find doctors who will make this work.

I'll keep you posted.