Updated: Mar 6
By Donna Barrett
I am a breast cancer survivor. I have been cancer free for two years. But it’s been a lonely, scary and fearful two years. While my mastectomy was able to remove the tumor and all signs of cancer, my journey did not end with that first surgery.
I was never a breast girl. Since my teen years, I’ve always been a very tall, very skinny, lanky girl. My breast size was an A cup, attempting to be B’s as I grew, but failing miserably. I learned to accept my small breasts early on. I embraced fashion and style that fit my long, lean, flat features. I could proudly rock a deep-V cut top or dress that would make J-Lo proud.
When I gave birth to my daughter, I found new respect for my breasts as I embraced the miracle of being able to nourish my newborn with mother’s milk. Breast feeding was never easy for me, but it became a necessity. When we discovered my child was allergic to all forms of formula, cow, goat, soy, I was the mommy milking machine. I fed and pumped the white gold until she was 18 months old. When the milk was gone, and she could sustain herself on other calcium rich natural foods like broccoli I was grateful to return to my little A cup breasts.
Fast forward to Indian Summer of 2017. Now in my 50’s, while my style was age appropriate, I could still wear a bikini with pride. This awareness and respect for my body and my tiny breasts, is how I was able to save my own life. Only 11 months after an all-clear mammogram, it was when I was removing my bathing suit in the bathroom, when I noticed in the mirror, a one-inch round discoloration under the skin of my right breast. Upon closer examination, it felt like a cyst. It seemed to appear out of nowhere.
I didn’t panic. It was just a cyst, I thought. However, I immediately contacted my OB/gyn office and requested to move up my previously scheduled annual exam. I even pressed to see if someone could see me the next day. I’m forever thankful, they did squeeze me in to see their Physicians Assistant. While I was in that office for an exam, this alert PA was able to schedule a mammogram at the Swedish Breast Center in Seattle that same morning. The mammogram results were significant so that they scheduled a biopsy for that afternoon. Within 48 hours of my noticing this dark discoloration on my breast in the mirror, I got the diagnosis: Stage 1A Invasive Ductal Carcinoma in Situ.
Invasive Ductal Carcinoma is the most common form of breast cancer. Common? Believe me, hearing the word, carcinoma, does not feel common. It is unfamiliar. It is frightening, like the shadow of death just did a fly over. Beyond the fear, this was my own body attacking me and this becomes so personal, I’ve never felt so incredibly alone.
I’m a planner, and so I began my plan of attack. Like a “World War Z” zombie virus, I needed to get this cancer cut out of my body as soon as possible. Meeting with the breast cancer surgeon, I was given options. Option one was lumpectomy plus lymph node biopsy, then 6-8 weeks daily radiation and chemotherapy pending lymph node results. Option two was single right mastectomy with no radiation and the lymph nodes could be taken during the same surgery. I was also offered that an implant could be inserted during same surgery directly after the mastectomy.
As a multi-tasker by nature, this was an option I liked and so I took it. The next part that was even more stressful than the diagnosis was waiting for the surgery. That was the longest 7 weeks of my life. I never asked, but I guess when your “only” Stage 1, there isn’t any rush to the operating table to save your life? I politely didn’t ask, and just assumed this was the norm.
I’ve now learned, that with a cancer diagnosis, never assume and don’t be afraid to ask questions. I had no experience with this and in my own personal head space, I couldn’t even think of who to ask for advice. I did the Google everything about IDC. Read every page of the National Breast Cancer web sites, Mayo web sites, WebMD and more.
What I didn’t know to ask the surgeons is where they would do the incision to remove my breast? When you do a mastectomy, what tissue remains intact?
I know the answers now. My tumor was on the very top of my breast right next to my nipple. They cut the incision diagonally across the main part my breast making for a highly visible, 6-inch slash across my breast. The implant used was the perfect size to match my remaining left breast. However, as the skin was stretched over that “perfect” implant, it was a tight fit. After the surgery, I was given nitro-glycerin cream to rub over the skin to keep the blood circulating and basically, alive.
Once home, I had help from my sister to care for my dogs and do basic home chores. I felt pretty good and was very mobile and not really in any pain. Then we got the lymph node report. The cancer was not present and thus, did not metastasize. No more cancer. They got it all. I felt so lucky.
Recovery seemed like a breeze. Then 10 days after the surgery, and 1 day after my sister left, I dropped a tissue. As I reach down to pick the tissue up from the floor, my upper right pectoral muscle exploded in pain and began to swell into a baseball size hematoma. The pain was excruciating. I went to the ER and was admitted overnight for observation. As I still had one drain tube, they were able to confirm the internal bleeding stopped and decided to not operate. However, the pectoral muscle remains rigid and swollen still today.
But the story doesn’t end here. This was the first post-surgery complication.
45 days after my mastectomy and implant reconstruction, the scab of my giant incision began to fall off. In hindsight, after having multiple surgeries since this, having a scab were the sutures where should have been a red flag. As the scab fell off in the shower, I looked down at my breast. Like unzipping a zipper, I could see the implant through a two-inch open seam. That scab was the only thing keeping my incision closed.
Having since moved for my job, I was no longer in the same city as my original surgeons. I ended up at the emergency room at Mayo Clinic in Phoenix. Discussions occurred between Mayo ER surgeons and my original plastic surgeon. They decided to remove the implant and not replace it at that time. This was now the second complication.
Now, as I mentioned early on, I am not a breast girl. I decided I would give flat a chance and applied for the insurance to get a breast prothesis. I also, spent many a night, just wishing I had done a double mastectomy and decided to go flat originally. But, there just wasn’t anyone I felt I could ask or talk too. The original cancer surgeons don’t even give you advice. The plastic surgeon’s goal is to make you look the same, normal, as if you never had cancer. It is easy to fall into the latter’s guidance because all you want post cancer is to get back to normal.
After this second complication, I needed a break. The Mayo plastic surgeons explained many options to me which included a spacer to stretch the skin then replace with implant, DIEP-flap reconstruction using parts of your abdomen, or the latissimus dorsi flap which uses parts from your back. I took a year to decide.
I mentioned I am a lean, athletic body type. Thus, there wasn’t a lot of fat available in my abdomen nor on my back. I chose the spacer for stretching skin and then inserting a small implant a few months later. After the spacer is inserted and the doctors ensure you are healing, the spacer is slowly filled with a saline solution to begin the process of stretching the skin.
The first two saline fills went well. The third fill is when things began to go wrong. While earlier hematoma had hardened my pectoral muscle, that muscle was still muscle and it was pulling the spacer higher into my clavicle bone and pressing it into my rib cage. I basically had a giant saline filled boob sitting about 3 inches higher than my remaining left real breast. Imagine going to work, going out to events, trying to disguise this monster boob, which entailed making the left boob look as big. I felt eyes on me all the time, wondering if I had a horrible botched giant boob job. Complication number three is now in the books.
This monstrosity had to come out. More surgery. With careful consideration, I finally decided to do the DIEP flap reconstruction. The surgeons convinced me there was enough tissue in my abdomen. But this is an 8-hour surgery. My fear of being under anesthesia and on an operating table for that length of time is frightening. Driven to be normal again, I went for it.
When I woke up in the Critical Care unit at Mayo, the most vivid recollection was the pain in my elbows. Why the elbows you may wonder? During this surgery your arms are laid stretched out flat as if you are laying on a cross, for eight hours, and not moved thus getting stiff and sore. The abdomen was injected with a painkiller and as the skin was used for a portion of my new breast, so there was no feeling in my stomach. Additionally, the new breast with the tissue, skin, vein and artery from your abdomen is too new to feel anything. I was numb everywhere except those elbows.
With DIEP flap the surgeons and nurses check on your new breast blood flow to make sure the borrowed vein and artery work in their new-found home. You also have a catheter as you cannot move to use a bathroom. If you’ve never had a catheter before, then I will spare you from describing it. Let’s just agree it’s gross. After a day once the catheter is removed, the nurses become drill sergeants getting you up and out of bed and walking. Nothing prepares you post DIEP flap surgery then the first time you attempt to stand up. You can’t stand UP, literally. There’s no give in your abdomen and so you begin your hall laps looking like the hunchback of Notre Dame. I was once again, full of fear. What had I done? I was certain I would never stand tall again. At 5’11” my mother always taught me to be proud of my height, stand tall and never hunch. It took me many weeks before I could stand tall again.
6 months post DIEP flap, the scars on my abdomen aren’t healing very well and they may have to do more surgery there. The new breast scars and how the tissue lays aren’t perfect either. I don’t have matching breasts, but I have two breasts now. I have my original made by God, and I have what I like to refer as my “Franken-boob” created by man. My previously flat stomach is even flatter. And I can still manage to rock the bikini. As for my love for low V-necks, that may take more time as the breast scars are still highly visible.
As a breast cancer survivor looking back my surgical history post mastectomy and reconstruction complications, I had to keep telling myself, “look, you beat cancer; they got it all; and you are the lucky one.” Through genetic testing at Mayo, I found that my breast cancer was not genetic. The oncologists believe I may only need the estrogen blocking therapy, Exemestane, for 3 years, not 10.
I’m know I am one of the lucky ones.
It’s hard to explain to others who have never or will never have breast cancer. While I was never one who cared about the tiny size of my breasts, and never saw a need to increase their size when I was younger, I feel now that this cancer has brought too much attention to my breasts. They're just boobs.
It’s been a little over two years since my breast cancer diagnosis. It’s exactly 849 days when this unplanned journey began forcing me to become a little obsessed with my health, my breasts and my body. My body is not perfect. My boobs are not symmetrical. My stomach has huge scar stretching from hip to hip. These are just physical scars. These will diminish over time.
As I am writing about my breast cancer journey today, on this rare palindrome date, 02/02/2020, which is when a date reads the same backswords and forwards, I’ve decided I don’t need to wait for the next palindrome to occur in 101 years to put this cancer journey behind me. It’s been a scary and fearful two years. It’s time to begin the healing my inner scars and leave the cancer behind me.
It’s time to seek out new, happier journey. To start new journeys where I know I am lucky enough to explore because I am still cancer free and I intend to keep it that way.