Data or driven

I went into my appointment with my oncologist today with prepared words. A speech I rehearsed many, many times over a weekend filled with worry. A speech that started with words like “confused” and “contradictory” and “opaque” when describing how my treatment felt up until now. Ending with feelings like “losing trust” and “lack of control” and “disempowered”.

My oncologist responded well. I suspected she would. She has spent more time with me because we did this all before. She knows me better, knows I respond to data, information and being heard. She gave me room to speak, she listened actively and explained everything in more detail and with more clarity than anyone has so far.

She laid out her view on why I shouldn’t go for a double mastectomy. She gave me the data: 0.5% chance of contralateral cancer (in the other boob), reduced to 0.3% chance if I have a bilateral (booth boobs off) mastectomy. I’d read data saying 0.7% but what’s a few percentage points between friends. Although there is a study showing a twofold increase in the normal risks for people with dense breast tissue, so that a potential 1.4% risk. Not to be sniffed at.

She moved on to her next argument that the hormone therapy they put me on will decrease the breast tissue density. Slam dunk. One point to her. Although it doesn’t solve the problem that a sneaky tumour might be hiding in there now. One the mammogram hasn’t detected.

Final argument and she went for a real finish: Death. Risk of morbidity is higher for mastectomy. I could die of an infection in the wound, from a heart attack or even just because it’s in the third quarter of the year. Except that didn’t quite hold up because they’re not just leaving the healthy boob alone. They want to slice and dice it to match the new boob. Breast reduction surgery carries its own very similar risk of morbidity as mastectomy. Boom.

After seeing her arguments be heard and not quite land, my oncologist said “This is your life. This is your decision.”

I burst into tears. It was the first time anyone had said that to me.

After the tears were mopped up, I left the appointment happier. I left feeling heard. But still feeling confused.

I decided to call the reconstruction nurse who is attached to the plastic surgeon. I told her I was still not sure about whether to have the single or the bilateral mastectomy. I told her I was considering implants. I told her all the doctors were advising against the double. She told me that if in the face of all those experts telling me not to do it, if I still couldn’t settle it, if I still had that “niggle” of doubt, then that’s the voice I should listen to. That’s the choice that would bring me ‘peace of mind’. And that peace was worthwhile. It was precious and the doctors don’t prioritise it. She said I should go ahead and do what feels right to me. What feels instinctive even in the face of all that opinion.

I didn’t cry. I didn’t fall apart. I felt power surge through me like an electric current. I knew what I wanted. I have all along. I’m not someone who isn’t open to data, to information. But the data let me down. It wasn’t conclusive. There are so many unknowns, so many risks and uncertainties. I have to make this decision on emotion, on gut. How will I feel afterwards? When all the doctors have disappeared and I’m left, for the rest of my life, with whatever has been done. That’s the decider.

I am going for the double mastectomy.

But I can’t ask for it for medical reasons. They will continue to argue against that. I have to ask for cosmetic ones. That I want symmetry and balance. That I want my boobs to be the same as each other. I don’t care at all about this but it will get me what I really want.

Peace of mind.

 

7 thoughts on “Data or driven

  1. Gill

    Yes!! this is your life, this is your decision, I’m glad you’ve found your peace and know what you want. Your reasons which led to your conclusions aren’t the most important factor, how you are going to feel living the rest of your life with the decision you make now is what truly matters. Now to get the whole medical team on board 🙂 I’m with you all the way whatever you choose to do xxx

  2. Lisa

    Brilliant! I’m so glad you were able to sort through all of the information you’ve been given, and make the decision which is right for you. Gill’s right that the ability to live with the decision you make now is the most important. Agreeing with the doctor’s advice despite your own preferences meant you might spend the upcoming years looking over your shoulder (figuratively speaking), wondering if you made the right decision. I applaud you! xoxo

  3. Heidi

    Thanks lovely women. Yes I’m feeling very peaceful already for the first time in weeks. So I think how it’s sitting with me is revealing. I didn’t mention in the post that we did discuss the reality that I am facing full dose chemo at six full cycles. Same as last time. This gave me enormous pause but is a discussion for another time. Today I’m just gonna enjoy having some clarity.

  4. Kamila

    Dear Heidi,
    I’m absolutely sure you are capable of taking your own decisions regarding your health and body taking into account the most up-to-date and reliable data and opinions – whetever you decide yourself is the most important. 0,3 percent is less than 0,5 percent or 0,7 percent-that I can understand, I can also understand there is not so much difference. But well, there is some. Anyway, I would have backed you if you took a totally different decision, too, and you and I and other people would find arguments for that, too! Anyway, glad that the present decision feels right – I must say all the counterarguments you have are totally convincing, to me, too. Two even breasts, a little wee tiny bit more certain health prospects. Sounds good.

  5. sokari

    Lawd Heidi, what a process to go through – but I am happy you have made a decision and hope the medical team will support it. The nurse is so right, it has to come from a place deep inside you . As the doctor said its your life, your body. Stay well dear friends xxxx

  6. Jo Ba

    Much love to you sis. Massive respect for listening to that gut o’yours…she’s a beautiful, wise creature too. All my support and love and admiration for whatever you decide…and they’re right, it is YOUR life…you’re not a stat or fact or piece of information, you’re a woman who know’s herself.xxxxxxxxx

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