PHOTO NOTE: The photo to the left is of my late sister-in-law, Nancy Schmidt and me. Nancy lost her battle with lung cancer on October 12, 2007. I miss her dearly and dedicate my efforts to her memory.
MY STORY: We have choices in life….what clothes to wear, what food to eat, what job to apply for, whom to marry, and the list goes on. But being diagnosed with DCIS was not my choice. Like 60,000 thousand other women (and men) who will be diagnosed with DCIS this year, we are now in a club we never wanted to join. Correction, I did have a choice – left breast mastectomy with no radiation or a left breast lumpectomy followed up by six weeks of radiation to that breast. A friend of mine gave me a journal before surgery and encouraged me to write, but I thought at the time it seemed weird. What I didn’t realize is that writing things down was not only helping me, but also had the potential to help thousands who will unfortunately join the same club in the future. So, I’ll consider myself secretary of the club and will take notes others can read and learn from to help with ‘club initiation.’
I was diagnosed with DCIS (Ductal Carcinoma in Situ) on Thursday December 30, 2010. A phone call from my surgeon confirmed my pathology from the Mayo Clinic was problematic. The path to this diagnosis was bumpy and stressful and I’m documenting things with the hope that the path will be more user friendly for future women.
My journey began July of 2010 when I noticed some dark red/brown bloody discharge from my left nipple. Upon squeezing it appeared to come from one specific breast duct. It (the dark discharge) caught me off guard and daily I’d check to see if the problem still existed. After a week I decided to phone my OB/Gyn. She was on vacation (of course) and one of her team members saw me. She suggested I needed to get a surgical consultation. Saying it was “probably nothing” but yet sending me to a surgeon seemed like a pretty big step to me, but I made the appointment with the surgeon who performed a breast biopsy two years prior, resulting in a thankfully benign growth. She thought this was nothing to worry about at the moment, but said to come back if it continued to bleed. Thankfully, the bleeding stopped the next day, so I put this out of my mind.
Fast forward to October 2010. Bleeding starts up again, so I mentioned it at my annual visit to the OB/Gyn. I asked her for the name of a different surgeon (one with better bedside manner) and she gave me one to check out – Dr. Nancy Taft. This surgeon’s approach was different. First, she treated me like an intelligent human being and showed great compassion for me as a person and really spent time with me as a person and a patient. I gave her a brief medical history and one of the first things she suggested was genetic counseling. What? I thought. I’m 49 years old and done having kids, so why would I need counseling? It turns out as I gathered more information and took a preliminary genetic screening, that due to my family history of breast cancer (mom) and few female offspring in my family, that getting blood tests could arm me with information for the unknown road ahead. As genetic testing was an unexpected suggestion, I told her I’d think about that and would like to know what she’d recommend as the next step. Dr. Taft suggested a duct biopsy/dissection. This would require invasive surgery, which means messing with my blood clotting problem/Coumadin levels that are managed daily, so I asked if there were any other options. She mentioned a ductogram, which is less invasive and can identify potential issues. So I scheduled that procedure for November.
PROCEDURE #1: The radiologist numbed my breast area and then a blunt needle was inserted into the affected breast duct in an effort to locate the papilloma (or mass) that was identified during an ultrasound. This procedure was uncomfortable and got more so when I had to stand up and get a mammogram with the needle in my breast duct. A papilloma was located just under my nipple and thought to be the potential source of the bleeding. Because of the results of this test, my surgeon suggested that the biopsy of that duct was needed. I was told not to worry, as 85% of these problems were not cancer. On to the next procedure…
PROCEDURE #2: On December 13th I checked into the day surgery area and was treated well by their fine nursing staff and volunteers. The lumpectomy procedure went well – Dr. Taft expertly cut around my areola and took out the duct in question to get a large enough portion for pathology. The recovery from this was laying low for a few days, wear a compression bra (like a sports bra) and returning to usual activities a week later. Surgery was on a Monday morning and pathology was expected back no later than that Thursday. Once it became Thursday afternoon I began phoning the surgeon’s office for a report. All they could tell me was the pathology report was listed as ‘in progress.’ And so the wait began through the next day, weekend and by early next week I started getting leery. I heard back from my doctor that the tissue was overnighted to the Mayo Clinic for a second opinion. OK, this doesn’t seem normal to me….the Mayo Clinic? So the wait continued through the week and into the next. I decided to get my breast MRI in the meantime to get that done and make sure my health care providers had all the information they needed. Christmas comes and goes and I learn that the Mayo Clinic asked for another tissue sample. More waiting. Finally I got the phone call from the surgeon who shook some branches at Mayo to get a result. The words “DCIS or Ductal Carcinoma in Situ” were spoken, but all I heard was carcinoma, which to me sounded like cancer.
Even though DCIS is a non invasive cancer, it is coined “stage 0 breast cancer.” See this ongoing discussion under the mastectomy Q & A section. There is also a good article in the links section in September, 2011 more.com you should read for more information. There are currently two prescribed solutions for DCIS – both involving more surgery. The first is a lumpectomy followed by (fill in the blank #) weeks radiation every day for prescribed number of weeks and the other was a left breast mastectomy. I guess a third option could have been double mastectomy, but I didn’t see the point of taking a breast that was normal. No choice sounded too great, but my husband and I were leaning towards the lumpectomy and radiation. My surgeon suggested a visit to the plastic surgeon (or PS) to get further input. This was really good advice in planning ahead and with my surgeon’s pull I was able to get in quickly. The doctor said that because I have small breasts, if I opted for a lumpectomy, the involved portion of my breast would be removed and would need to have “clear margins” from pathology. That meant that I would be open on the operating table until pathology results came back to my doctor – about 40 minutes. This could go back and forth a number of times, raising my chances for clotting with each passing minute and also a couple passes on a small breast might mean ultimately having a mastectomy anyway. If I started out with a planned mastectomy I would be sure the carcinoma was gone from my left breast, have no radiation and reconstruction would be easier. So our minds were changed and we phoned Dr. Nancy Taft with our choice of a left breast mastectomy.
My story continues on the Mastectomy page.