My Latest Tumble and I Explain Breast Cancer Alphabet Soup

Well I’m still in limbo about whether The Boob Whisperer will take my new insurance or not.  Apparently his office has applied for a contract with my new health plan but it hasn’t happened yet.  Meanwhile I’m still having some shoulder and muscle pain on my left side.  It’s exhausting especially if you’re out of shape which I totally am.  I was practicing softball with Lili this morning for a couple hours and I’m completely whacked.  I barely even ran and the one time I did I tripped and went down like a lead balloon.

Lili thought it would be fun to point out that’s the third time she’s seen me trip and fall in the last year.  A couple weeks ago we were walking to the car in a parking lot and I tripped on a curb and biffed it.  Right in front of this guy sitting in his car.  He was very nice and ran over to see if I needed help.  Once we got back in the car I laughed and said “well that sucked.”  Lili said that it was the longest slow motion fall down she’d ever seen.  Most of you know I’m blind in my left eye from meningitis in 2004 so what looks like clumsiness is actually no depth perception and a huge “blind” spot.  You can read more about my blind adventures here.

Moving right along, I wanted to have a little teaching moment.  Many women (including me before my diagnosis) think breast cancer is a lump found on your breast.  Sometimes that is the case but many times it’s not.  The most common type of invasive breast cancer is ductal, and about 70-80% of all invasive breast cancers are ductal or IDC-invasive ductal carcinoma.  My cancer was lobular which is the second most common invasive breast cancer although it only represents about 10% of cases.  Invasive means the cancer has “invaded” or spread to the surrounding breast tissues.  Lobular means the cancer began in the lobules where the milk is produced.  Milk travels from the lobules into the ducts which then carry it to the nipple.  The thing about lobular breast cancer is that it is super sneaky and is often not detected on regular mammography especially if you have dense breasts. I probably should have been getting 3D mammograms but even then it’s not always detected.  It frequently presents as a thickening of tissue as opposed to a spherical shaped “lump.”  I always thought it would feel like a marble.  You need to be aware of ANY changes in your breasts, armpits or nipples.  IDC or invasive ductal carcinoma is when cancer cells begin forming in the milk ducts and have spread beyond the ducts into other parts of the breast tissue.  There are non-invasive forms of both lobular and ductal carcinomas known as LCIS-lobular carcinoma in situ and DCIS-ductal carcinoma in situ, where the cancer cells are contained in the lobules or ducts.  There are also some less common breast cancers like inflammatory.  I know it’s a lot of letters, like breast cancer alphabet soup but since 1 in 8 women are diagnosed with invasive breast cancer in their lifetime it’s important to educate ourselves.

There are numerous factors oncologists use to determine what stage a patient’s breast cancer might be.  Staging goes from 0 which are the non-invasive or in-situ cancers to stage 4 or metastasis (mets) where the cancer cells have traveled to distant organs like bones, lungs, liver, brain, etc.  I was Stage 3A, 8.5 cm tumor, 2 out of 14 lymph nodes positive.  From breastcancer.org:

Stage 3A describes invasive breast cancer in which either:

  • no tumor is found in the breast or the tumor may be any size; cancer is found in 4 to 9 axillary lymph nodes or in the lymph nodes near the breastbone (found during imaging tests or a physical exam) OR
  • the tumor is larger than 5 centimeters; small groups of breast cancer cells (larger than 0.2 millimeter but not larger than 2 millimeters) are found in the lymph nodes OR
  • the tumor is larger than 5 centimeters; cancer has spread to 1 to 3 axillary lymph nodes or to the lymph nodes near the breastbone (found during a sentinel lymph node biopsy)

Once there is a Stage 4 diagnosis it is usually treated like a chronic disease.  I’ve probably said this before but it bears repeating – there is no 100% cure for invasive breast cancer.  If you’ve had a bilateral mastectomy followed by chemo, radiation and hormone therapy if warranted like me, the best you can hope for is no evidence of disease (NED).  Even if the surgeon believes all cancerous tissue was removed there is the possibility that one or more of those cells sneaked by.  There is just no way to know definitively.  This is why my oncologist and most others say NED and do not say “cancer free.”  I think it is an important distinction because one sounds cautiously optimistic while the other sounds a bit like a false sense of security.  I’m sure there are those that will disagree with me because maybe hearing the words “cancer free” makes it easier to live with the uncertainty, but I am a realist and the reality is every day is gifted but not guaranteed.

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