Living with Triple-Negative Breast Cancer
(#8 in a series)
The mastectomy process doesn’t end when you leave the hospital. The weeks that follow involve many physical and emotional changes.
After the Mastectomy: The Unveiling
I was surprised to learn that the task of removing the bandages from my chest would be done at home. It was suggested that I step into the shower first to loosen the bandages and remove them there. I wanted to be alone anyway.
Being the pragmatic sort, I set aside two hours of crying time and not a moment more. Although we’d done some online sleuthing and saw photos of mastectomy patients, I wasn’t at all certain what I would look like just 48 hours after surgery.
Before stepping into the shower, I washed my face and put in my contact lenses so I could see properly. Showering after a mastectomy requires some thought, due to the drain hanging out of your side. We were advised to make a necklace out of string and then to hang the drainage bulb from it. Awkward.
I washed first, allowing the water to flow over the bandages. Finally I began gingerly pulling away at the edges. It didn’t hurt — in fact, I had no feeling at all in the area. No photo could have prepared me for the shock of looking down and seeing nothing where a breast used to be.
My beautiful little breast was replaced with a scar beginning in the center of my chest and reaching far under my arm, which was rather concave and misshapen. It appeared to be the best outcome, considering the potential for side effects. The doctor was able to use dissolvable stitches.
I couldn’t yet move on to the bandage on the drain, as tears began falling and I whimpered like a wounded puppy. My husband had been on the alert and entered, asking if I needed help. I cringed as he pulled aside the shower curtain. My loving husband was about to see my new physical state for the first time.
He was, of course, loving and nurturing. He didn’t miss a beat, looking directly at my chest and underarm, then into my eyes — with no sign of anything but love. A slight wave of nausea came over me as he helped remove the drain’s bandage.
After a few minutes, the whimpering was over and he helped me out of the shower. The post-surgery instructions recommended some air drying, so I took it to heart. I wrapped the towel around my waist and propped myself up on the bed directly in front of the mirror. I stared, trying to wrap my brain around this new look. I knew it wouldn’t stay that way and it was probably the worst it would ever look. It would heal and improve over time. I couldn’t help but smile at the sight of my left breast, standing alone and looking absolutely regal. I knew at once that I would be okay. A breast for a life. Not a bad trade at all. Total crying time? About ten minutes.
Right from the first day, I was able to strip and empty the drain myself. Jim was schooled in the procedure, but I preferred to do it myself. His caregiver role turned out to be less than anticipated, other than taking on more of the household chores for a few weeks. Over the next two weeks, I worked at balancing moving around appropriately and resting.
Next: The Pathology Report and Staging the Cancer
Pathology Report Brings Welcome News
We weren’t expecting results of the pathology report for a few days, but Dr. M called while it was “hot off the press.” She had good news to share and didn’t want to wait. Confirming what she observed during surgery, the report showed that my lymph nodes were absolutely clear, as was my chest wall. She staged me at IIA, which is much better than she had anticipated. (We can end breast cancer by 2020)
About Breast Cancer Staging
From The American Cancer Society: Stage is expressed in Roman numerals from stage I (the least advanced stage) to stage IV (the most advanced stage). Non-invasive cancer is listed as stage 0.
Stage 0: This is ductal carcinoma in situ, the earliest form of breast cancer. In DCIS, cancer cells are still within a duct and have not invaded deeper into the surrounding fatty breast tissue.
Stage IA: The tumor is 2 cm (about 3/4 of an inch) or less across and has not spread to lymph nodes or distant sites.
Stage IB: The tumor is 2 cm or less across (or is not found) with micrometastases in 1 to 3 axillary lymph nodes (the cancer in the lymph nodes is greater than 0.2 mm across and/or more than 200 cells but is not larger than 2 mm). The cancer has not spread to distant sites.
Stage IIA: One of the following applies:
The tumor is 2 cm or less across (or is not found) and either:
- It has spread to 1 to 3 axillary lymph nodes, with the cancer in the lymph nodes larger than 2 mm across, OR
- Tiny amounts of cancer are found in internal mammary lymph nodes on sentinel lymph node biopsy, OR
- It has spread to 1 to 3 lymph nodes under the arm and to internal mammary lymph nodes (found on sentinel lymph node biopsy).
The tumor is larger than 2 cm across and less than 5 cm but hasn’t spread to the lymph nodes. The cancer hasn’t spread to distant sites.
Stage IIB: One of the following applies:
The tumor is larger than 2 cm and less than 5 cm across. It has spread to 1 to 3 axillary lymph nodes and/or tiny amounts of cancer are found in internal mammary lymph nodes on sentinel lymph node biopsy. The cancer hasn’t spread to distant sites.
The tumor is larger than 5 cm across but does not grow into the chest wall or skin and has not spread to lymph nodes. The cancer hasn’t spread to distant sites.
Stage IIIA: One of the following applies:
The tumor is not more than 5 cm across (or cannot be found). It has spread to 4 to 9 axillary lymph nodes, or it has enlarged the internal mammary lymph nodes. The cancer hasn’t spread to distant sites.
The tumor is larger than 5 cm across but does not grow into the chest wall or skin. It has spread to 1 to 9 axillary nodes, or to internal mammary nodes. The cancer hasn’t spread to distant sites.
Stage IIIB: The tumor has grown into the chest wall or skin, and one of the following applies:
- It has not spread to the lymph nodes.
- It has spread to 1 to 3 axillary lymph nodes and/or tiny amounts of cancer are found in internal mammary lymph nodes on sentinel lymph node biopsy.
- It has spread to 4 to 9 axillary lymph nodes, or it has enlarged the internal mammary lymph nodes.
The cancer hasn’t spread to distant sites.
Inflammatory breast cancer is stage IIIB unless it has spread to distant lymph nodes or organs, in which case it would be stage IV.
Stage IIIC: The tumor is any size (or can’t be found), and one of the following applies:
- Cancer has spread to 10 or more axillary lymph nodes.
- Cancer has spread to the lymph nodes under the clavicle (collar bone).
- Cancer has spread to the lymph nodes above the clavicle.
- Cancer involves axillary lymph nodes and has enlarged the internal mammary lymph nodes.
- Cancer has spread to 4 or more axillary lymph nodes, and tiny amounts of cancer are found in internal mammary lymph nodes on sentinel lymph node biopsy.
The cancer hasn’t spread to distant sites.
Stage IV: The cancer can be any size and may or may not have spread to nearby lymph nodes. It has spread to distant organs or to lymph nodes far from the breast. The most common sites of spread are the bone, liver, brain, or lung.
Next: The Phantom Breast and the Reconstruction Question
The Phantom Breast
The days that followed brought extreme fatigue. While I experienced surprisingly little pain, I wasn’t particularly comfortable and had lots of weird sensations. When I moved a certain way it sent a tugging or prickly feeling to my nonexistent nipple. The feeling was powerful and if I didn’t look down, I felt as if I still had that breast. Even so, my skin was, for the most part, without feeling.
The Reconstruction Question
My surgeon strongly advised that I hold off on thoughts of reconstruction for a while. Not getting that process started during the mastectomy meant that reconstruction would be a bit more involved for me. After some research on reconstruction, the risks and expense began to sound more and more unappealing. As much as I appreciated balance, I felt as though reconstruction might be more trouble than it is worth. As a younger woman, my feelings likely would have been very different. A good prosthetic might do the trick for me.
As for my husband, the answer was clear:
“If you do consider reconstruction, just know that you will be doing it for yourself, because I think you look beautiful just the way you are.” I am a fortunate woman indeed.
Living with Triple-Negative Breast Cancer Series
#1 The Lump in my Breast: Meeting the Enemy
#2 Most Breast Lumps are Non-Cancerous: Would mine be?
#3 The Mammogram, the Ultrasound, and ‘the Look’
#4 The Biopsy and Breast Cancer Confirmation
#5 A New Twist: It’s Triple-Negative Breast Cancer
#6 Before the Mastectomy: Planning for the Future
#7 Mastectomy Day: What it’s like to lose a breast
Access the up-to-date Living with Triple-Negative Breast Cancer Series
Take Action! Sign the petition: We can end breast cancer by 2020
Author’s Note: This is article is part of a series chronicling my first-hand patient perspective of life with Triple-Negative Breast Cancer. Without being overly self-indulgent, I hope to convey the raw emotion that comes with such a diagnosis… and the process of living with and beyond it. Entries will appear in Care2 Causes and in Care2 Healthy & Green Living. Follow on Twitter @AnnPietrangelo