After the Mastectomy: Unveiling and Staging

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).
OR
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.
OR
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.
OR
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

For More Information:
Triple Negative Breast Cancer Foundation
American Cancer Society
BreastCancer.org

Image: iStockPhoto.com

21 comments

Sandy Erickson
Sandy Erickson5 years ago

Are they still doing this?? How barbaric! It has been almost forty years and BILLONS of dollors later since my aunts went through this. WHERE is that cancer money REALLY going?

Linda Eby
Linda E.5 years ago

Thank you for so eloquently sharing your story. I will use your comments about your "team" and how the nurses' attitudes and compassion were of help to you when I teach my nursing students about the art (vs the science) of nursing. I will also think of you if I ever get breast cancer myself. Thank you for many things.

Shirley M.
Shirley Marsh5 years ago

My admiration and respect for you wonderful women who have had to experience this awful disease and have displayed such strength and courage. My admiration and respect also for the partners who have honoured the 'through sickness and health' part of their vows; bless you all, you are an inspiration.

caterina caligiuri

*** AMMIREVOLE *** *cat

Harriet J. B.
Harriet J B.5 years ago

I guess you can say that I am very lucky. They found my breast cancer at stage 1 with clean margins and clean lymph glands. So, I had a lumpectomy, radiation and for 5 years, a medication called Arimidex. I have to see the oncologist and the surgeon every 6 months for life.

Sandy Mann
Sandy Mann5 years ago

I wish I had the support you had. It's been 5 years since my double mastectomy, chemo, radiation, and yes, I'm glad to be alive. However, my boyfriend at the time couldn't look at me when my bandages came off, nor ever after. Of course he wasn't around long after that. I realize that was his problem, not mine, but emotionally it scarred me worse than the 16 inches of physical scars across my chest. My family lives 3,000 miles away, and the only thing that got me through all this is my cat, Radar. Animals are amazing! I consider myself a warm, outgoing person, but I still won't open my self or body to a man. Yes, I've been through counseling, but nothing seems to help. It seems that I only read about wonderful men who help women through breast cancer. Does anyone have the same story as me? I know I'm a stronger and better woman now, but it's been a lonely, long journey. One of these days, I'm sure I'll have a relationship again, but right now, after 5 years, I'm finally happy alone, but not lonely.

Kathlene Lentz
Kathlene Lentz5 years ago

Living with a scarred and misshapen body is not an easy adjustment, but you seem to have handled it wonderfully well. And you are very lucky to have a husband who is loving and supportive. I have not gone through what you have (and count myself very lucky for that!), but I have experienced surgery and an iliostomy that I thought would totally turn my husband away from me. Never once did he falter! His love and support are what got me through. I imagine you feel the same way about your husband.

Carolyn M.
Carolyn M.5 years ago

I had my left breast removed 2.5 years ago. I had cancer cells in my "sentinel" lymph node, so lost 18 lymph nodes as a precaution. I did not have reconstruction. I'm glad to be alive of course, but I still don't like seeing myself in the mirror. Horrible disease, on so many levels. Thanks for sharing your story.

Susan L.
Susan L.5 years ago

Also, women need to get rid of amalgam fillings. They are extremely toxic, being 50% mercury. Mercury vapor escapes the fillings, gradually accumulating in your body. When you eat a little is scraped onto your food and then is ingested, and absorbed by your digestive tract. Find a good, holistic dentist experienced in mercury filling removal. Cilantro and organic vegetable juices will help remove the mercury from your body, or you can do chelation under a doctor's supervision.

And avoid root canals as well! Root canals harbor very toxic bacteria, more toxic than botulism. This anaerobic bacteria lives in the dead tooth, in tubules so narrow white blood cells cannot enter to kill them. Also, root canals contain metals that interact with mercury fillings, making the mercury far more toxic!





One study of breast cancer patients showed 98% of them have root canals!

Root canals can be removed, but it must be done very carefully by an experienced dentist. I believe there are also treatments that can be done by a dentist, to kill the bacteria safely, but you would need to check on that.

Susan L.
Susan L.5 years ago

It's lovely your husband is loving and accepting - but then husbands should be - " in sickness & in health " right?

It's such a shame so many women these days are having their breasts amputated. Breast cancer used to be very rare 100 years ago, now it's 1 out of 7 get it in North America.

And after amputation, the docs offer radiation and poison. Chemo drugs kill healthy cells, permanently injure vital organs, destroy immune systems, the very things you need to fight cancer! Getting chemo increases a person's chance of getting leukemia by 5 - 10%. And the original cancer has a good chance of returning in some other part of the body. Then what - the docs offer more chemo - or send you home to die.

We cannot avoid getting a certain amount of toxins into our bodies with the world being so polluted these days. But there is much we CAN do - eat only organic food, wear organic clothing, detox our livers and bowels, take supplements, avoid stress, meditate and/or pray. Also, we can avoid bra-wearing so that our lymph systems can more easily drain toxins out. Constrictive bras, especially underwire bras, are closely related to high risk of breast cancer.

Cancer is BIG business. Big Pharma makes billions on it every year. They don't want a cure. They like things as they are.

Take charge of your health. Investigate how cancer works, how it can be prevented, how it can be defeated with natural means. Read Cure Your Cancer by Bill Henderson.