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Lorilyn's Story

Name:	Lorilyn
State:	Florida
Date of diagnosis:	May 15, 2017
Age at time of diagnosis:	61
Stage of diagnosis:	Stage 3C w/ 11 mets to nodes
Last 'NORMAL' Mammogram:	Four months prior to diagnosis
How was cancer diagnosed?	MRI

I had my first mammogram when I was 38. I’m 61 now. I was told when I had my first mammogram that my breasts were so dense that if I got breast cancer, it would probably never show up on mammogram. I never forgot that comment by that radiologist. I've had mammograms every single year since I was 38. Never missed. They were always a nightmare with callbacks, biopsies, ultrasounds, and surgeries that turned out to be benign. BUT NO ONE EVER SUGGESTED GETTING A BREAST MRI.

I felt a new lump at a prior surgery spot in August. When I went in for my blood pressure test in October, my doctor suggested I have another mammogram and an ultrasound. In December, both showed no change since the previous mammogram in April. That was December 2016. The radiologist said I could do one of two things if I wanted to do more testing to make sure. I could have the site biopsied, or I could have an MRI of the breast. That was the first time anyone ever mentioned an MRI of the beast to me.

I opted for the MRI. Good thing I did. The spot I found turned out to be benign, but there were two cancerous spots on my left breast unrelated to each other. In other words, distinct primary sites. Very rare. But they did not show up on mammogram or ultrasound. One of the spots was where I had had previous surgery. The other spot I assume was hidden by dense breast tissue. Nobody found either spot on exam, ultrasound or MRI. Turns out, my cancer had gone to 11 of 15 lymph nodes, even though the largest tumor was only 1.7 cm. The lymph node involvement did not show up on MRI. That was found during the surgery. My surgeon said for a tumor this small, it was very rare it would be in that many lymph nodes. But the two cancer sites did show up on MRI.

I asked for the MRI. It was not recommended to me by the radiologist. They would have been fine if I had just elected to go home without any more diagnostic tests based on the mammogram and ultrasound. I asked based on what that doctor had told me over 20 years ago, that if I had cancer in the breast, it would probably never show up. That one comment by that doctor saved my life.

But if someone had told me about breast MRI’s, that I should have them based on my history (dense breasts and five surgical procedures for benign breast disease), my cancer might have been caught sooner, and I wouldn’t have had to go through a double mastectomy (I chose to have the other side removed at the same time), 16 rounds of taxol and adriamycin chemo, and 30 rounds of radiation therapy.

I still have a long ways to go. I also am having reconstruction. I think it’s important that women know that mammograms are not effective for women with dense breast tissue or lots of biopsies or surgeries. They need to have MRIs. We need to get this changed.

I am an author and plan on writing about my personal experience in the future. I have been blogging about it on my blog. Right now I’m editing another book and need to finish that series before I start another project. But I am more than willing to share my story to help other women.

Lorilyn's Personal Story and Plea to Women with Dense Breast Tissue

Lorilyn and Dr. Cappello meet in Jacksonville Florida

http://LorilynRoberts.com

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AYD In The News

What is Dense Breast Tissue?

How Do I Know if I Have Dense Breast Tissue?

What Do I Do if I Have Dense Breast Tissue?

Are You Dense? Fact #1:
Breast density is one of the strongest predictors of the failure of mammography screening to detect cancer.
Are You Dense? Fact #2:
Two-thirds of pre-menopausal women and 40% of post-menopausal women have dense breast tissue.
Are You Dense? Fact #3:
Adding more sensitive tests to mammography significantly increase detection of invasive cancers that are small and node negative.
Are You Dense? Fact #4:
American College of Radiology describes women with "Dense Breast Tissue" as having a higher than average risk of Breast Cancer.
Are You Dense? Fact #5:
While a mammogram detects 98% of cancers in women with fatty breasts, it finds only 48% in women with dense breasts.
Are You Dense? Fact #6:
A woman at average risk and a woman at high risk have an EQUAL chance of having their cancer masked by mammogram.
Are You Dense? Fact #7:
Women with dense breasts who had breast cancer have a four times higher risk of recurrence than women with less-dense breasts.
Are You Dense? Fact #8:
A substantial proportion of Breast Cancer can be attributed to high breast density alone.
Are You Dense? Fact #9:
Cancer turns up five times more often in women with extremely dense breasts than those with the most fatty tissue.
Are You Dense? Fact #10
There are too many women who are unaware of their breast density, believe their “Happy Gram” when it reports no significant findings and are at risk of receiving a later stage cancer diagnosis.