“We found something on the MRI,” my doctor said on the phone last November and I almost drove off the road. With a family history of breast cancer and eleven years of scans under my belt, I had had some biopsies (and a few scares before) but this instantly felt different. So, within a week I added another biopsy to the list and was told the pathologist found something called LCIS in my right breast. LCIS stands for ‘lobular carcinoma in situ’ which, despite the word carcinoma, is not considered cancer. But if you have LCIS, you have a 1 in 3 chance of getting cancer and I wasn’t a fan of those odds. I’m young (enough). I have little kids. So screw that. Six weeks later, however, I was fondly remembering when LCIS was the least of my problems.
But back to November. I’m sitting in my doctor’s office with my ex-husband being told that I can a) accept the risk LCIS poses to my life, or b) remove that risk with a double mastectomy. It felt like a Sophie’s Choice. The appointment ended with me sure of only one thing: I needed a second opinion. I liked my doctor. But always ALWAYS get a second opinion. Recent studies show a second opinion results in a major change in diagnosis and treatment up to 60% of the time. So we were immediately in the market for a second oncologist. My ex also suggested we get a second pathologist’s opinion on the original biopsy itself (in case the first pathologist missed something), and that is what saved my life.
We found the best cancer hospitals in the country through US News & World Report and we sent biopsy samples to two of them. It cost $32. And here’s a little known secret: MD Anderson (in Texas) and Sloan-Kettering (in New York) take insurance just like every other hospital, you just have do the legwork.
I was done being sick and it was time for reconstruction and to heal.
As it turned out, the pathologist at Sloan saw something no other pathologist saw. IDC or ‘invasive ductal carcinoma’ – and this time ‘carcinoma’ meant business. I was in Vermont when I received ‘the call’ from my ex, whom my doctor had been instructed to share any bad news with first (so we could avoid me driving off the road again). I was alone when he broke the news and my whole body froze. I had just spent Christmas with my daughters and left them behind with their daddy. I was in shock. Disbelief. My fight-or-flight response kicked in and all I wanted was to get on the first plane home, scoop my babies up, and hold them tight. But then I pulled it together. It wasn’t time for flight. It was time to fight.
Since I was on the coast near the hospital that found the IDC, I called them to hopefully see a breast surgeon there. Luckily, they had a few appointments left but in order to secure one, they needed my medical records which included three years of scans, blood work, mammograms, and reports by 5pm that day. Fortunately, my family gets copies of all our medical records and keep PDFs of them on our computer. If you aren’t doing this, start now. You can’t kill cancer cells by being organized, but that enabled me to get an appointment I would’ve otherwise missed. Control what you can control.
After that appointment, everything is almost a blur. We had found my cancer early and the doctor said I could wait before removing it, but I wanted it out ASAP. A few days later, I had a lumpectomy where I was then given a choice: radiation/tamoxifen or a bilateral mastectomy. I opted for the mastectomy. I didn’t want to stress, getting scans and biopsies for the rest of my life and by March, the deed was done. I was done being sick and it was time for reconstruction and to heal.
There are days I still have fear, however I now regard my cancer diagnosis as a blessing in disguise. It’s been a second chance that has been transformational as it has helped me focus on what matters.
To date, I have had four surgeries in six months and zero regrets. I feel empowered. My mastectomy doesn’t make me feel any less of woman, it saved my life. And so did my inner voice, which started this entire ball rolling. My concerns were dismissed for a year (my own scans were all normal) before I pushed to have the MRI that found ‘something’. A year before, I had found a lump in an odd location between my breasts and sternum and my doctors dismissed it as a normal part of my anatomy. I watched it for that year…but it just wasn’t sitting right with me. And so I started pushing again and was finally given an MRI. If you have your own concerns, follow your gut, go to your doctor. If s/he dismisses you, get a new doctor. Don’t skip your check-ups and scans. Be your own advocate and ask questions. And for God’s sake…get a second opinion. Your family needs you to do this. YOU need to do this. And don’t rest on the ‘laurel’ of not having breast cancer in your family. Ninety percent of all breast cancers are not inherited. To friends and families of survivors, don’t judge their choices on their journey. Surround them with love and support. Encourage them to seek out support groups, to speak to others going through the same struggle. These groups and online forums were very helpful and had some of the answers I needed for this journey. I could not have gotten through this past year without the love and support from my boyfriend, my girl tribe and family. I understand that I am extraordinarily lucky, but I will also continue on this journey for the rest of my life because my doctors can’t tell me I am cancer-free.
There are days I still have fear, however I now regard my cancer diagnosis as a blessing in disguise. It’s been a second chance that has been transformational as it has helped me focus on what matters. It has reminded me to slow down and take care of myself, something we mothers often forget to do. I have become more mindful of my diet, what I apply to my body, and making sure my environment is as clean as possible. I try to enjoy every moment and no longer ‘put things off’. My goal now is simply to live the life I want and spread awareness and fight for a cure so that by the time my daughters grow up, they will learn about breast cancer in history class.
Gina Lamanna is the founder of Spool, a curated appointment-only boutique that provides women with a unique shopping experience.