Surgery and date set!

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This is a long post, so apologies in advance. I spoke to the surgeons’ assistant yesterday, and I have my surgery date—May 22, next Thursday, six days from now. On Tuesday of this week I spent almost seven hours at St. Mike’s and saw my surgeon, the director of the breast centre, my plastic surgeon and my oncologist. I went in absolutely wired because I didn’t have a plan. For 16 weeks of chemo, I thought I was getting a lumpectomy, then was told no, bilateral mastectomy 110%. That started five weeks of agony, anxiety, terrible dreams, depression, crying and frenzied research online, on triple negative breast cancer forums, on breast cancer forums, anywhere I could find info. After a week I was just reading and rereading the same articles. I couldn’t absorb any more.

There isn’t much out there for women triple negative breast cancer with no primary tumour. No primary site for breast cancer is rare—statistics from a 2012 multi-centre study in the journal Cancer looked at 770,030 breast cancer patients, and 750 had no primary site. Of the 750 they studied, there was no distinction of patients with triple negative breast cancer, so that study means nothing to my situation. Triple negative is 15% of all diagnosed breast cancers. That’s the biggest problem—the subset of triple negative with no primary is infinitesimally small, so there are no studies. 

No primary tumour means there’s no target for surgery or radiation. The emotional response is bilateral mastectomy—get them the hell off me. When I finally got my diagnosis of TNBC (triple negative breast cancer), chemo was started immediately. No one asked me “What do you think of paclitaxel? How does some cyclophosphamide sound? Would you like to schedule that every three weeks, or does dose-dense suit you better?” No, my onc said this is the drill, the pharmacist sat with me and explained, the dietician told me what foods to avoid. That was fine by me.

Then after chemo was finished, it was “Ah, here are your options, it’s your decision.”

What? My decision? I don’t want this decision. Some women do want it, but I don’t. I want the people who went to medical school and specialized and read journals and go to conferences and Tumour Board every week and see 30 women a day with breast cancer to make this freaking decision for me.

But no one wants to take the risk. Triple negative means there are no markers on the cancer cells, so none of the targeted cancer treatments that work on 85% of breast cancers work. The standard of care is three chemo drugs, which I had, and thank God and all things good, I had a very good clinical response. After chemo and before radiation (a must because of the metastases in my lymph nodes) however, there is no standard of care when you don’t have a primary tumour/site. That’s why all my frenzied reading. Of course I’m only trying to catch up to what my onc and surgeons already know. And the docs gave me four surgical options and a non-surgical (yeah, sure, let’s do nothing and see how that works), but the plastic surgeon customized a fifth option, which I’m going with. 

I thought I was wasting the plastic surgeon’s  time seeing her for a second appointment when, after five weeks, I still couldn’t face a bilateral or even unilateral mastectomy, but knew I could never walk away with these large, dense breasts intact, harbouring God knows what. But I sat with her—Dr. Melinda Musgrave—and my boyfriend, who has been with me at every single specialist appointment, and half of my chemos, and she went through my most recent MRI, the two additional ultrasounds that my oncology radiologist at Princess Margaret Hospital wanted to rule out a different non-breast cancer (all clear, still sticking with the breast cancer diagnosis), and she went over all the options that I had been offered, and then said, “or, we could do this.”

I’m thinking of it as mastectomy-lite. Breast-conserving surgery on both sides, taking my sizeable natural breasts to a demure C or D cup. Everything that gets cut out goes to pathology. Maybe they’ll find my primary. Maybe they’ll find markers that make me not triple negative. Maybe they’ll find DCIS. My oncologist says depending on what they find, I may still proceed to the bilateral mastectomy, but at least I’ll know I explored my options. The surgeon will remove lymph nodes (called an ALND—axillary lymph node dissection) from levels one and two in my right armpit—the ones that alerted me to this great experience in the first place. Those will be analyzed in pathology too. The number of lymph nodes with cancer is the best predictor of survival. The one he removed in the sentinel node excision had cancer, so then I wait and see. My right breast will get radiation, as will the armpit.

So, surgery is in six days. Not long enough to get my house—and groceries, meals, laundry, school stuff, etc—organized. Please cross your fingers and say a prayer or send me all the good vibes you can. Thank you!

 

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7 Responses

  1. holy F#*! Six days and now five. Thank god you have a competent daughter to oversee Luca.

  2. Jacquelyn, I’m so glad your team has come up with a solution that you all can live with. I know what it is like to have a diagnosis so rare they don’t have a go to protocol, but in your case the options are daunting and many and you have to live with the consequences. I so feel for you. I think you chose the right path for you right now.

    You know i think about you all the time. And through this nightmare you’ve even managed to be there for me, day and night, even if just by text. You are a strong and amazing woman Jacquelyn, much more than you know.

    I’m praying for you, and sending you all the love I can, deflected from the love coming my way. There is more than enough for all of us, and it grows exponentially.

    Xoxoxo Julia

  3. Thinking about you big time today, J. Wishing my heart out for a smooth day tomorrow and recovery. I’ll be with you every second.
    Julia xo

    • It was a smooth day, except I didn’t get any dinner. Since that was the only mix-up, I considered it an excellent day. Thank you for your thoughts, I’m sure they helped!

  4. Jackie, I sent you a text tonight, because it’s too late to call.You most likely won’t read this message tonight either. I just want you to know that first, I REALLY wish I was there to help you out. Second, I’ll be with you in spirit all day tomorrow as you go through surgery and recovery.
    Sending love and hugs xoxoxoxoxox
    Jen

    • I read the text, and the surgery went really well, I felt calm going into it (could have been the lorazepam I took at home). Now I get better. Thank you for the xoxoxoxox

  5. Hi Jackie, Happy to have texted with you before your surgery & got Tessa’s text after ❤ Good to know that all's well and I hope that your recovery is smooth and short. Sending love xoxoxox ❤

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