Kate's story about breast density and screening

I had no idea that breast density was a medical factor in breast cancer at all. I just thought it was a fact of your body, like slim ankles or being high waisted for example.

It was never mentioned to me at any point in my diagnosis, discussion of my treatment plan, or in the statistical estimations of any future possibility of breast cancers, recurrence or new.

The first time I heard it mentioned was when I was having a long discussion with my breast surgeon about whether or not I should have a mastectomy and reconstruction and the type of reconstruction I should have. He was musing out loud and mentioned, almost as an aside “You do have quite dense breasts”. I didn’t pay any particular attention to it at all!

It was only later when the topic came up on the BCNA online forum that I realised its relevance. At about the same time I read somewhere that WA was the only state that routinely included breast density measures in its mammogram reports, and that their survival rate is 92% as opposed to the national average of 90%. Clearly not a direct correlation but it did get me thinking.

I wish I’d known earlier as it would have assisted me in making my decision to have a bilateral mastectomy and reconstruction. There would have been less agonising and debate. My re-excision discovered a 4cm dogleg of ‘occult’ cells, DCIS that had remained undetected by all the mammograms and ultrasounds up to that point. I found this very frightening. What is the point of doing all the scans if they can’t see the cancers? Still, no one mentioned breast density to me, that it was affecting the ability of the technology to detect abnormalities. I really needed to know at this point, when I was debating the merits or otherwise of a mastectomy. Were these occult cells a one-off, or was this likely to happen again? If I’d known that I had dense breasts, this would have clarified a lot for me.

The next time I saw my breast surgeon I raised the subject with him. He said breast density was a hot topic in the breast cancer community. He said that dense breasts did affect detection rates of breast abnormalities and that while the jury was still out on whether it led to increased rates of breast cancer, it was increasingly looking like it did. He said one of the problems was that there was no cohesive approach, that density was sometimes being reported to GPs who were then coming back to them asking what to say to patients about it. So it sounds like the BCNA putting together a statement and position on breast density is a good idea!

For me personally, it ended up being an important contributing factor in my decision to proceed with a bilateral mastectomy. And as it turned out a wise one. Because once again, the pathology turned up yet more previously undetected DCIS, just below my nipple. Was it not seen because of my dense breasts? Probably.