CONTACT JOAN CONTACT JOAN

Lisa Frost

I never had a blog during cancer. I kept a Caring Bridge journal while going through treatment to keep friends and family up on my condition. I saw other people’s cancer blogs. I read many of them. When you have cancer it seems like so many people have cancer. You learn about or meet someone new almost every day. I didn’t think I needed to blog. Who wants to hear another cancer story? I didn’t think that it was important to tell mine. Cancer, blah blah blah cancer, right? I used to feel that way, that my story amidst other stories just wasn’t all that important. The other day I was talking to a breast friend of mine that said to me, “you just never know who is going to relate to your story”. She wasn’t talking about my story, just stories in general. Two and a half years after my diagnosis I have decided that she is right. My story does matter. I do think that there are women out there that can relate to my story and more importantly there are women out there who will hopefully read my story and take action to prevent going through all that I had to. If that happens just one time then I will be happy.

I didn’t have a lump. I never did. I am a nurse and my husband is a surgeon. A doctor that removes cancerous breasts. I felt lumps in my breasts ALL of the time! I told my husband more than once that if I ever had a lump in my breast I would never know because to me they were always lumpy. My mother had breast cancer. Non-invasive breast cancer when she was post-menopausal. Her mother died of breast cancer. This however was not considered a strong family history of the disease because they were both post-menopausal when they were diagnosed. I started having mammograms when I was in my early 30’s anyway despite “not” having a strong family history (2 maternal aunts also had the disease and a first cousin, so I don’t buy it) I had yearly mammograms. They were always negative. The reports always said, “patient has dense breast tissue” whatever that meant. I was told that dense breast tissue was typical with younger women. It didn’t matter to me, my mammogram was negative so everything was good. Every year a negative mammogram. Sometimes they needed more pictures to get a better look. A couple of times I had to go back to have an ultrasound on my right breast “only” to look at something closer. The tests were always negative. I would receive that letter in the mail that stated your mammogram reading was “benign”. It worked for me, until November 2011.

I didn’t have a lump. I was going for my yearly screening after learning that a close friend was just diagnosed with breast cancer. I was a little bit late for mine so it prompted me to get mine on the calendar. I went in with absolutely no worry whatsoever. This year would be the same as any other. I am a nurse, I check my breasts in the shower all of the time. I have my husband check them when there is an area of concern. I get yearly mammograms, I do everything right! Or…did I? When the mammogram technician took me into the room for films she asked me if I had any areas of concern. I told her my usual story that my breasts are always lumpy and it seemed to be my “norm”. She lifted my left breast to put it on that cold hard metal plate and in that short 5 seconds alerted me to the fact that I had “a mass in my breast”. What did she just say? She has no idea what she is talking about! I don’t have a mass in my breast! I feel my breasts every day in the shower! Wouldn’t I KNOW if I had a mass in my breast? Apparently the answer to that is NO…. There I was living that famous cliché “your life can change in an instant”. Her exact words to me were, “I can not, in good conscience let you leave here today without getting a diagnostic mammogram”…. I will never forget those words. We called the ordering physician and he faxed an order over. There were more films and then an ultrasound by the technician and then the radiologist came in to look. By the end of the day I knew that I had breast cancer and that it had spread to my lymph nodes and I never felt a thing….ever.

I was diagnosed with stage 3C lobular carcinoma. I had cancer in 24 of the 30 lymph nodes that they removed during my bilateral mastectomy. My tumor was 7cm (the primary one) and the general biology of my tumor was very good. It was NOT a very aggressive cancer, thankfully. It was a “slow” growing cancer. Really? So…how does a very large and slow growing cancer NOT get picked up on a yearly mammogram? If that technician hadn’t felt my “mass” would my screening mammogram have been read as benign again? What if they had just performed ultrasounds in both breasts instead of just my right breast? Would they have found my cancer years earlier? In retrospect there are about a hundred “what ifs” that I have wrestled with in my head over and over, but it doesn’t change a thing. My oncologist believes that my cancer was growing in my breast for years. It was there and it wasn’t picked up on my yearly mammograms. It wasn’t picked up on my breast exams (by myself and my Gyn doctor) because it was lobular and there was no lump. It was by definition a “density”, aka dense breast tissue. (Dense breast tissue is not synonymous with cancerous tissue, just to clarify).

This is the important part of my story. If you only read one paragraph please read this one! Not all women have dense breast tissue, even young women. If you have been told by your physician that you have dense breast tissue then you need to start asking more questions. You need to know your family history of breast cancer regardless of BRCA status (I am negative) All women need to be their own advocates for their best health. Not all breast cancers start as lumps. Not all cancers are picked up on mammograms. Some women need ultrasounds and/or breast MRIs. Do NOT assume that every doctor knows what is best for you. Speak up and ask questions. I know that the standard of care is changing around the country where dense breast tissue is concerned. In some states it is now required that high risk women with dense breasts be given alternative screening methods such as ultrasounds and breast MRIs, but not all physicians practice this. It takes years for all doctors to adopt these new practices. Despite the fact that 6 women on my mother’s side of the family had breast cancer (2 of them terminally) I was the only pre-menopausal woman to have had the disease and I am BRCA negative. Some physicians would disagree on whether or not I fall into the “high risk” category. This is where I start screaming “PLEASE BE YOUR OWN ADVOCATE”! Ask questions and if you don’t like the answers then get a 2nd opinion. It just might save you from getting chemo or having your breasts removed. It just might save your life.

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