Fifty Shades Of Confusion
“Situation no win. Rush for a change of atmosphere. I can't go on, so I give in. Gotta get myself right outta here.”
-Big Audio Dynamite, “Rush”
When you first find that lump, dimple, or rash on your breast you know instantly that something is not quite right (I mean – come on, we’re all AWARE) and you know you need to get it checked out. What is your starting point? How to best begin the process? Do you see your primary care doctor? Do you see your gynecologist? What about a radiological center if you’ve had other mammograms – should that be your first stop? Do you have a breast surgeon that you have a history with; cyst removal, mastitis, breast reduction or enhancement? What about a local breast or women’s health center? Is that where you started?
The second guessing and the fifty shades of confusion will come much later in the process when you look back at all the appointments and tests you had to take, all the consultations, all the choices and the decisions that need to be made and made quickly. Most of us just get in the mindset of GET IT OUT, after hearing the words, yes - it’s cancer. If only it was that simple.
Frequently, when you get diagnosed at an early stage they give you choices:
*Unilateral mastectomy (one boob)
*Bilateral mastectomy (both boobs)
*To reconstruct or not to reconstruct
*Lumpectomy (removal of the lump and sentinel lymph nodes)
*Chemo and radiation
*Chemo and radiation and adjuvant treatment
I feel like it took me at least two years after my initial diagnosis to finally understand what it means to have breast cancer at an early stage and young age.
In my book, Does This Outfit Make Me Look Bald? I chronicled the whirlwind of decisions, opinions, and emotions. It came down to two extremes…on the one hand a breast surgeon, that I trusted and felt comfortable with, explaining that because I had a tumor that was within the duct and contained the best plan for me would be a lumpectomy followed by radiation. An oncologist would then determine the need and type of chemo. In my head it played out like this; simple, easy, over, move on.
Then I had my second opinion, a surgeon with a great reputation and a terrible bedside manner. She was cold and only spoke to a bilateral mastectomy but never once addressed reconstruction options. In my head it played out like this; invasive, deformed, life changing, cancer patient.
Because I had no first-hand breast cancer experience, meaning that I didn’t grow up in a family where breast cancer had pruned the family tree, I was lost. I didn’t know what the right path was nor did I understand the long-term repercussions of these surgical procedures and treatments. I had a starting point (GET IT OUT) but no frame of reference. I was blind and making decisions in a pink-hued vacuum.
There are so many things that were never addressed:
I’ve frequently thought back to the decisions I made in 2007. I made the best decisions I could and, at the time, I was comfortable with them. The second-guessing came about two years out. When I began interacting with more young survivors who, unlike me, opted for bilateral mastectomies. Some reconstructed. Some didn’t. Some had elaborate chest tattoos. Some had an affinity for the prosthetics.
Because they, unlike me, had a family history. Many had watched their family members do the cancer dance long before it was their turn taking a spin on the floor. Some elected to forgo the doctors listed with their insurance companies used doctors that had come to them through referrals. A few even opted to go to an all-encompassing breast care center that not only laid out surgical options but also treatment and reconstructive options. In both instances they were guided through the process. They were more understanding of the big picture. They chose to kill a fly with a grenade. Smart girls.
It took me four years post-diagnosis to find a plastic surgeon that put me first. She listened to my fears of recurrence and didn’t once tell me I was over-reacting. She examined, thoroughly, my severely deformed radiated breast. She thought through the best options for me taking into account my damaged skin, my body type and my need for symmetry. I won’t lie – after years of living with a prosthetic in my bra I was so eager to look normal again and buy a bra (or even a bathing suit) that could contain both boobs (I had a full cup size different between the two; the gimpy boob barely filled out a B-cup and the untouched boob was a full C-cup). She also understood my fears of having to go through treatments again. I had been through a few false alarms and it was at that point, waiting once again for biopsy results, that I realized I hadn’t been aggressive enough in my surgical approach.
My thinking now is – if my breast surgeon preferred a less aggressive surgery but my oncologist kept talking about how aggressive my cancer was maybe that should have been my first clue into how serious my situation was.
In finding my plastic surgeon, and in turn meeting my current breast surgeon (because they work as a team), I felt comfortable in finally making that leap into a prophylactic radical surgery and reconstruction. But as my luck would have it I was diagnosed with breast cancer again – three months before my scheduled surgery during a pre-surgical MRI. So everything got bumped up. As freaked out as I was by having cancer again, mentally, physically, and emotionally I was ready to rock the OR … only because I had four years of knowledge and experience tucked away.
I truly think that there should be a qualified counselor, a bosom buddy if you dare – preferably one who had survived breast cancer to be on-call within surgical offices to talk the newly diagnosed patient through all these difficult decisions. It’s all so overwhelming and I get that there are HIPPA privacy guidelines but I really think this is an untapped need for breast cancer patients because of all the options. Most women do not seek out a support group or therapy until long after these decisions have been made.
One thing I’ve learned now, as a card carrying member in the cancer club, is that other cancers mean surgery and treatment and perhaps, in some cases, a prosthesis. Breast cancer is a stand-alone cancer in the fact that one size does not fit all and so much depends upon your lifestyle, body image, level of intimacy, comfort level plus the level of competency and expertise of the surgical team. Too many decisions in too short a period of time.
There – I feel better; I had to get that off my chest.