Open letter to the OBGYN who waved off my tiny lump

Dear Dr. G.:

It has been 12 years since that day in your office, when you dismissed a pea sized lump in my right breast. Before I spoil what became of that lump, I am going to back track a bit.

I was one of your first patients, when you started your practice in Beverly Hills about 17 years ago. You were eager and excited about helping women through child birth and whatever other issues they presented. You were a fantastic ear and a good doctor.

I left Los Angeles shortly after establishing a rapport with you and returned a few years later, in 2005, because I had gotten engaged to a man who had remained in California. Most of my prior support system was no longer here, I was having some issues with painful sex and I had a lump in my breast. So I made an appointment to see you.

This is a day I will never forget. I walked into your office feeling afraid and alone, really hoping to see the doctor I had known so many years before. But you were not there. Or at least your warmth wasn’t. You treated my visit much like an encounter at a cocktail party, almost looking over my shoulder to see if there was someone better to talk to, even though we were the only two people in the exam room.

I told you about discomfort with sex and you asked me if I really loved my fiancé. When I said I did, you mentioned another patient who had had a similar problem and, it turned out, wasn’t in love with her partner. I then told you about a lump that was concerning. It was small, it was hard, it was nothing you said after kneading around it for a minute. Plus, you said, I was way too young to worry about something like breast cancer. I was 33. After that you rushed through the rest of the exam and had me meet you in your office once I got dressed. This was the fun part. We could shoot the shit and you could introduce me to your next patient who was tangentially related to the entertainment industry. It was amazing how far you had come.

What wasn’t amazing was the way I felt when I walked out of your office. I was confused, insecure and not less anxious than when I had arrived. I can’t fault you for not offering the same kind of support or comfort as our past visits. Your bedside manner had changed. And, in my opinion, not for the better. But that was the doctor you had chosen to become. I can, however, fault you for carelessness. For using your fingers and opinions as a diagnostic test. What would it have hurt to have ordered a mammogram back then?

I went through years hearing your words in my head – that it was nothing – even as the lump grew. I was meek, I was afraid to assert myself and truthfully, I probably didn’t want to know it was something. Until another lump appeared under my arm. That was 5 years later. I was almost 38. And you guessed it, it was cancer. It was in my breast and had spread to my lymph nodes.

I was resentful at you back then but, rather than look backwards, I chose to put one foot in front of the other with chemo and surgery and radiation and surgery again and hormone therapy. Through all of that I learned to be my own advocate, something I didn’t know how to do when I saw you back in 2005. I learned how to do research, get second opinions, ask for tests I thought were necessary even if they weren’t readily recommended. And for all of that I thanked you in a weird way. It was a hard lesson. A terrible lesson but I swore never to put my health and wellbeing squarely in someone else’s hands again.

I was upset that maybe I could have escaped with a lumpectomy and medication instead of the barrage of treatments I had to undergo. But I was willing to let all of that be the past. Until summer of 2015, when the cancer returned: in my bones, my liver and my brain.

So now, Dr. G., I am a stage IV breast cancer patient. Do I know that I wouldn’t have gotten here if you had ordered a mammogram on that day in 2005? No. I know there is no guarantee but my odds would have been better. My chances of living a cancer free life would have been much higher. So I am writing this letter to let you know this.

The lesser part of me wishes you would stop practicing. The lesser part of me is calling you out on your arrogance and ignorance. I sent a lot of patients your way, most of who ultimately left you because of their own experiences with you. Some of those experiences were fatal. The lesser part of me feels better for pointing that out.

The better part of me wishes you well. It hopes that you move forward more responsibly. That you take my story and the story of others you have affected to become a better doctor. You are in a position of power and I hope you recognize that. Not just with your ability to diagnose and write prescriptions but with your words as an expert and someone people look to and trust.

I do hope that somehow this reaches you. I hope that you think of me every time someone comes in with a breast abnormality and every time you write a prescription for a mammogram. I also hope you are writing those often. That very small action, that scribble on a pad of paper could have changed the trajectory of my life. While I missed out on that opportunity, please do give that to the women who come to you for guidance and care. You can’t do anything to make this right, but that would surely help.

All the best.

Romancing my self

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Since my double mastectomy in 2011, I’ve had this obsession with shopping for lingerie online. I wrote about how much I love my new boobs here. And I really do. They feel more like mine than my old ones. And when I’m down or the guest of honor at my own pity party, I wind up online looking at bras and panties. Actually I tend to do it no matter how I feel, but more so when I need a pick me up.

I’ve gotten great at finding sales (Barneys Warehouse is one of my favorite places to go) and there is nothing like getting a matching bra and panty set to make me feel beautiful and frisky and to elevate my mood.

I chalk up these purchases as acts of self love. Ways to pamper myself and remind myself of the femininity that came into question early on in treatment. This was something that was important for me to find again. My body had changed in so many ways. Aside from the obvious loss, I prematurely lost my period, I lost my ability to have children. There was noting gradual about this. It was all of a sudden. And the question was how do I find my womanhood in the context of such a dramatic shift of self?

For me one of the tools is this new joy of lingerie. Every little package is like a love letter to my body. A way of saying I deserve to continue feeling like a sexual being. I deserve to feel pretty. And for that I am grateful.

What I find as I navigate this whole experience is that the more I am able to focus on gratitude and joy, even in things that seem as trivial as underwear, the better the journey is. Every time I look for something pretty to wear, I am shifting the focus from loss to gain. The gaining of a new sense of self, of self confidence and of a little bit of joy that helps get me through that moment.

There are certainly less material tools out there to find acceptance in the now, but I wanted to share this one. I often hear people deny their sexual selves after treatment and I can imagine that some may also deny themselves material pleasures. I wanted to weigh in to say there’s nothing wrong with wanting to feel sexy post surgery and there’s nothing wrong with a little retail therapy now and again. Especially if it helps you romance your new self.

I like boobs. I like my own boobs.

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It’s strange to lose your breasts, to lose a part of you that makes you a woman. For some people it’s a sensual area. For me it never was,. In fact, I never really liked my breasts that much. They identified me as female, they were objectively sexual but I never found them beautiful. They were small, oddly shaped – at least that’s how I saw them.

Now I actually like my breasts. I think I own them differently. I find them beautiful, sexual. There is not a lot of sensation in them but, regardless, I like the way they feel to the touch. For me, being a woman and feeling sexual – which was an important thing for me to find after a Breast Cancer diagnosis – came with body ownership, feeling integrated in my own skin. I owe much of this sense of ownership to the choices I made pre-surgery and to some of the sexual exploration I wound up doing after surgery (all of which I will write about in time).

I’m sure there were somatic issues, emotions I held in my original breasts, which were somehow walled off from the rest of my body. I’m also sure that some would say that was the root of my cancer. I will never know. But what I do know is that, while this is not a diagnosis I would wish on anyone, the silver lining for me is having a healed relationship with my breasts and a part of my womanhood I had unknowingly denied for so long.

Breast choices

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In 2011, when I was first diagnosed with breast cancer, I was confronted with choices about what to do in terms of surgery. My tumor was fairly large and even with neoadjuvant chemotherapy (which means chemotherapy to shrink the tumor prior to surgery), it was recommended that I have a mastectomy.

The time and energy I put into the following decisions were pivotal in my body ownership journey. Being my own medical advocate was critical. Making choices based on health and aesthetics got me out of feeling victimized and hopeless. When I look at my breasts, I feel proud. Through something that made me feel so powerless, it was nice to find a way to be present and proactive. It was easy to hear that inner voice that said “I DON’T WANT Cancer” and how fantastic it was to be able to hear “I WANT…” and then do something creative with that desire.

My choices aren’t right for everyone but I am putting them here in case they can be of help to anyone. Because an extra voice may have helped me as I was trying to figure out what to do.

  • Bilateral vs. Single Mastectomy: The cancer was only in one breast and I had to decide whether or not to have both breasts removed or just one. I opted for both with silicon reconstruction.
    • Symmetry: This was important to me. I was grateful to have life saving surgery and I wanted to go after what, for me, would be the most aesthetically pleasing choice.
    • Less Stress: With Cancer there is already a fair amount of poking and prodding that happens on a regular basis. There are frequent scans and the stress that is associated with waiting for the results. I did not want to have to go in for a yearly mammogram and add that to my list of worries. Never mind that the data shows that survival rates don’t necessarily improve when you remove a healthy breast. Tell that to my emotional center!
    • Question of Breastfeeding: Knowing I wouldn’t be able to breastfeed (if and when I did have a baby) wound up being less important than symmetry and less stress. But this was definitely on the list of things I was considering.
  • To Nipple or not to Nipple?: Through research, I learned about nipple sparing mastectomies. It was something I requested and, because of the placement of my tumor, I was able to keep both nipples. The one on the cancer side looks a little different but I am still happy with the result. (As a side note, my keeping my nipples did not have anything to do with my recurrence. Sadly I had lymph node involvement as well, so the cancer had already escaped my ducts.) The process post-surgery was trying because, while they were able to spare the actual nipple, there was no guarantee my body would resume blood flow to that area. So even after surgery, I was at risk of losing them. I’m happy to say that I got to keep them both.