The diagnosis
I should probably disclose at the onset that I have been dealt the cancer-card twice. 10 years almost to the day between diagnoses …..which in hindsight, I should have used as an excuse to buy a few Powerball tickets or at least a handful of scratchers.
My first diagnosis was Hodgkin’s Lymphoma (cancer of the lymph nodes, a “blood cancer”) and then a type of breast cancer called DCIS – Ductal Carcinoma In Situ. It was identified in my right breast initially through a routine mammogram and then confirmed via biopsy. I had no family history of breast cancer, and I would not have found the growth through self-exam since it was so small lurking in the milk ducts.
When I met with the nurse at the breast screening center to hear the results of the biopsy, there was that strange moment where you suddenly become aware of your surroundings. It was followed shortly thereafter by the nurse saying the word “cancer” and then she added, “we need to get you referred to a surgeon”.
I had no clue at that point as to what was going to take place.
Partial breast removal?
The entire breast?
Both breasts?
Both of the breasts and lymph nodes?
What about reconstruction?
Herein lays the most important tenant of undergoing a mastectomy if you want to maintain your sanity:
RESIST THE URGE TO CONSULT WITH DR. GOOGLE OR LOOK AT RANDOM STUFF ON THE INTERNET
Start by finding
the right surgeons
I had my breasts cosmetically enhanced 20 years previously, and they still looked pretty fabulous. I knew the results were due largely to the skill of the plastic surgeon I had been referred to by a family member who was in the medical community. I was determined to find another surgical professional in whom I could place that same level of trust and confidence.
I opted for a double mastectomy due to information that was revealed through genetic testing and went in search of a general surgeon. Just as I had done with my cosmetic breast procedure years ago, I solicited professional recommendations from the local medical community. I contacted my GP/family medicine doctor and when he gave me a name, he followed with the comment “everyone I refer to her just loves her.”
Bingo.
I went online, looked at her website, read her reviews and felt an immediate sense of encouragement. Upon meeting her in person, I knew I was in the right hands. She was easy to talk to, optimistic as to my outcomes and incredibly compassionate. I had not only found the right surgeon to perform my simple/total double mastectomy with sentinel node biopsy, she had a strong recommendation for the plastic surgeon who would perform the skin/nipple sparing delayed reconstruction with implants and autologous fat transfer.
This is probably the biggest reason why I discourage going onto the internet to look at random mastectomy surgical images. It was important for both my psyche and my expectations to be looking at photographs of patients representing the work of my plastic surgeon. There are too many factors and options that influence what reconstruction will consist of and you can’t determine that by looking at random “before and after” mastectomy snapshots.
My plastic surgeon is a perfectionist, and I don’t think she would mind me saying so. For all that has transpired relative to my breast cancer diagnosis over the course of 16 months (and in excess of 86 appointments/procedures), she got me through 3 surgeries to “the promised land”. I had half joked with her during my initial consultation that I would like to have post-mastectomy what I had beforehand. All joking aside, that is pretty much what she delivered.
Throughout our time together she outfitted me with surgical drains, stuffed me into surgical garments and outlined her pre-op plan of attack with a Sharpie on my torso more than twice. Along the way, there was a kind demeanor and professional perfectionism coupled with specific “dos and don’ts” which I followed with religious devotion. I was on board with what she planned, what she recommended, what she did and what she wanted from me as her patient.
And it contributed EVERYTHING to my amazing outcome.
Genetic Testing
As I shared with you earlier, I had no history of breast cancer anywhere in my family. When the option to have genetic testing in conjunction with my breast cancer diagnosis was presented, I was absolutely on board. I know this is a challenging subject for some, the idea of looking at your DNA and possibly having “mutations and genetic dispositions” added to your medical profile can be unsettling.
Please hear me out.
I think there are two perspectives: one being “knowledge is power” and the other is “you cannot close Pandora’s box after it has been opened”. I met the medical criteria for genetic testing of hereditary cancer because I had lost my paternal grandfather to pancreatic cancer. Having joined “23 & Me” over eight years ago, I knew the mechanics of spitting into a tube and waiting for the reports to be generated from decoding those double helix strands. Here is where I make my pitch.
My sample was analyzed for 34 different genes including 19 identified as having an increased lifetime risk for breast cancer, including BRCA1 and BRCA2. I did not test positive for either of those, but I did test positive for ATM - Ataxia-Telangiectasia mutated which is associated with both breast cancer and pancreatic cancer. This information allowed me to make an informed decision to opt for a bi-lateral/double mastectomy, and also has elevated my awareness that I will need to be monitored for signs of pancreatic cancer in the years to come.
In the end, it is a personal choice whether or not to participate in genetic testing. I hope that in sharing some of my DNA puzzle, it will help you in your decision making process.