This is Ariel Ford, founder of Caresquare. I am blogging today from the hospital. This morning I underwent a mastectomy and immediate reconstruction.
Over the last three months I have had three increasingly invasive biopsies, an MRI and multiple mammograms and was finally diagnosed with Ductal Carcinoma In Situ (DCIS) in my left breast. DCIS is when cancer forms inside the milk ducts. Who knew you could get cancer in your milk ducts?!?!?!.
DCIS is considered Stage 0 cancer. It is kind-of like the staging ground for a tumor to form, but we caught it before any tumor appeared. In addition to removing all the breast tissue, one of my sentinel lymph nodes was removed too. Everything will be biopsied to make sure things haven’t spread, but my doctors believe I am looking good. If the biopsies come back clean, that means I won’t need any chemotherapy or radiation. Phew. Double phew.
Dr. Nima Grissom performed the mastectomy, and Dr. Loren Eskenazi performed the reconstruction – all at CPMC in San Franciso. Dr. E. also augmented my right side so everything matches. And she did it all in one step, and even saved the nipple! Dr. Eskenazi is one of the only surgeons in the country performing reconstruction in this way, and she is really on top of her game. I did extensive research and all roads kept leading back to her. Traditionally the reconstruction is a three-procedure process that takes place over a number of months, but my size and desire to keep the implants small made me a good candidate for this procedure. Everything is still bandaged and under wraps, I am nervous and excited to see what everything looks like.
At this point in my whole cancer adventure, there is no drama. I am spending the night in the hospital tonight, but I have to say I feel great. Haven’t even needed pain medication. Compared to a C-section this ain’t nuthin’! It’s amazing how much childbirth and child-rearing changes our capacity for, and relationship to, pain.
The drama in all of this was really the three month long diagnosis process. Three months of poking, prodding, imaging and incising…and then the interminable waiting for results, only to learn that more tests would be required. The not-knowing was the worst. With all the tests and waiting, my mind was forced to go through all the possible outcomes, including the very worst case scenarios. I spent weeks contemplating my life and possible death. Interestingly, this deep reflection provided multiple flashes of intense euphoria when forced to face my own mortality head-on. I learned to come to peace with my potential demise out of all of this, and was surprised to find what a comfort that was.
The diagnosis finally came back showing DCIS with no invasion into the surrounding breast tissue or anywhere else in my body – the BEST possible scenario given the circumstances. After three months of waiting, this actually came as good news to me, and the icing on the cake of course was getting a new pair of you-know-whats out of it…
The other major drama in all of this was dealing with everyone else’s emotions around cancer. Wow – I was not prepared to manage that, and at times felt quite defensive about it. I did not sign up to help everyone else process this - I am busy taking care of my own physical and mental health around it. But it can’t be avoided. During the lengthy diagnosis process, I did not share any of the news with anyone except family and two dear friends. When I finally got the diagnosis, it came as good news to me for reasons described above – I had already done the cancer processing months prior and really didn’t want to be taken through it again. I wrote an email to everyone I knew and told them, and also asked to please stay positive, and try to refrain from showing me their cancer face and sustaining long, meaningful eye-gazing sessions every time I walked into the room. But some people just couldn’t help themselves….
That being said the outpouring of love and support has been incredible. I am blessed with a very loving and positive family and community. And it is also amazing how many people told me “I had the same thing” , “my mom had the same thing” , “my sister had the same thing”….everyone has been touched by something like this.
The first question people ask me is “How did you know”? I knew something was wrong in my milk ducts. They felt bad – sore, tender, too sensitive. I didn’t know it was cancer, but I knew something was wrong in there because they were uncomfortable – they felt like they had never fully emptied after breastfeeding. I never had a lump, it was the whole breast. I thought it was related to breastfeeding but nine months after stopping breastfeeding I was still tender and my husband encouraged - or demanded, really - me to get it checked out. I am glad he did. They could see evidence of DCIS in the first mammogram. Sadly, it took another three months of poking, prodding, magnetic resonance imaging and surgery to finally get the final diagnosis, mostly because my body fat is low and my tissue dense so it was just hard for them to get a great read.
Turns out the hormones related to breastfeeding actually accelerated the process of the DCIS forming. It would have happened anyway, but it happened faster because of the hormones. DCIS forms over a number of years, and it has to form for about three years before it can even be detected in a mammogram. Some women can live with DCIS their whole life and never get a tumor. But there was no way I was willing to live with that risk.
I have no history of breast cancer in my famiIy at all. None. This was not genetic. I highly encourage every woman reading this to start getting regular mammograms. They are not a big deal, and can save your life. I think they recommend you start getting them regularly at age 40. I am 39. It kinda seems like it is never too early to be careful….