Breast Cancer: Not always a lump

Lobular carcinoma in situ (LCIS) is an area (or areas) of abnormal cell growth that increases a person’s risk of developing invasive breast cancer later on in life. Lobular means that the abnormal cells start growing in the lobules, the milk-producing glands at the end of breast ducts. Carcinoma refers to any cancer that begins in the skin or other tissues that cover internal organs — such as breast tissue. In situ or “in its original place” means that the abnormal growth remains inside the lobule and does not spread to surrounding tissues. People diagnosed with LCIS tend to have more than one lobule affected.

Despite the fact that its name includes the term “carcinoma,” LCIS is not a true breast cancer. Rather, LCIS is an indication that a person is at higher-than-average risk for getting breast cancer at some point in the future. For this reason, some experts prefer the term “lobular neoplasia” instead of “lobular carcinoma.” A neoplasia is a collection of abnormal cells.

LCIS is usually diagnosed before menopause, most often between the ages of 40 and 50. Less than 10% of women diagnosed with LCIS have already gone through menopause. LCIS is extremely uncommon in men.

LCIS is viewed as an uncommon condition, but we don’t know exactly how many people are affected. That’s because LCIS does not cause symptoms and usually does not show up on a mammogram. It tends to be diagnosed as a result of a biopsy performed on the breast for some other reason.

This is from BreastCancer.org

My cancer was a lobular carcinoma, and I was complete caught off guard. Where was the lump that I’d ben told to feel for? I’d always had regular check ups and mammograms. My local physician at time of diagnosis, during my annual exam let his fingers march right on across the cancerous breast (and the LCIS) and focus on a benign cyst in the other breast - enough so that he insisted that I get a mammogram that very day. My point here: even he missed it. I get a little sore when women look at me, like I wasn’t paying attention to my own breasts, when I tell them I had a six centimeter tumor.

Listen carefully: it wasn’t a lump. It was shaped more like a pancake, centered almost directly behind the nipple, in highly fibrocystic dense breast tissue. It was Stage IIIa with three fully involved lymph nodes, and prior to surgery it was measured at six centimeters ( larger in the post surgical analysis).

Freaking scary.

I talked to a young man in a local store today, who was giving out samples of a new margarita mix ( neat!) and I remarked that it had high fructose corn syrup in it. We got talking about food additives and that I can’t have any soy products - that was on orders from my oncologist at MD Anderson Cancer Center. We don’t want to give my body any further fuel to feed the breast cancer fire. The young man told me that his wife had a lot of problems with fibrocystic breast tissue.

Me, too.

That’s one reason my cancer was missed. Mammograms don’t do a very good job at reading lobular masses. Ultra sounds are far better, and I asked this young gentleman if his wife has had an ultrasound baseline report, and she has. So I told him my story (the Clif Notes version) and said to tell her to keep right on top of it.

It really bothers me that so much emphasis has been placed on ‘lumps’ found through breast self-examination. During conversations the other day with two cancer experts at Saint Marys’ during the tumor board, we were coming to the same conclusion that Lobular carcinomas of the breast were probably being under-diagnosed due to the challenges of seeing them in conventional breast imaging modalities. This isn’t a good thing since LCIS ( lobular carcinoma in situ) is a challenging type of breast cancer to treat the first time around, and should it come back ( a recurrence ) even more difficult to treat. When you add the factors in of my cancer, that it was a triple negative - hormone receptor negative and her-2 negative - that doesn’t bode well for effective treatments on a second go round.

So what is the takeaway here? Again, you’ve got to get it right the first time, even if that means waiting to get second opinions on your diagnosis, in addidtion to second opinions on your diagnostic pathology ( the results of the Fine Needle Aspiration or Core Biopsy ).

And finally, if you, indeed, have a lobular carcinoma then seek the best care possible. Don’t be swayed by “it’s convenient” or ” I want to be close to my family during treatment”. During a brief discussion with another surgeon here in Reno, who does a lot of breast cancer cases, she says that one of the most difficult things she has to deal with it convincing women to see the larger picture and treatment plan - and not just rush to ‘have them both taken off’ ( to be blunt).

Your life is far more important than proximity to home and hearth. Go where you need to go and stay there as long as you need to stay there. It’s not easy, but the peace of mind afterward - that you have done all that is possible and within Best Practices - will help you sleep with sweet dreams afterward.

You have to make time to get it as right as possible the first time, and it won’t always be convenient or cheap. Fortunately, there is help available. We’ll talk about that next.

maven