Yucky news from my oncologist: serious post

Matroyshka dolls: layer upon layer of the face we prepare to meet the faces that we meet… (http://step2loveblog.com/?p=1265)

Matroyshka dolls: layer upon layer of the face we prepare to meet the faces that we meet… (http://step2loveblog.com/?p=1265)

When I got my diagnosis of triple negative breast cancer with no primary site, I had two things to worry about: a cancer that was only 15% of all breast cancers, very aggressive and with very limited treatment options (one option); no primary site, so nowhere to target with removal or radiation. When the surgeon said “remove the whole breast,” my oncologist said “we think it’s in the tail of the breast, so a lumpectomy should work.” I was happy with the oncologist’s opinion, and put all thoughts of a mastectomy out of my mind.

Last Tuesday, chemo #7, I had a big appointment with my oncologist. She’d been away for the previous week at the the 9th European Breast Cancer Conference 2014 in Glasgow Scotland. We started with a question of mine:

“With no primary site, and five lymph nodes with cancer, do I have metastatic cancer?”


I was shocked.

“But I thought that was just called regional spread?”

“It’s the same thing.”

Wow. All of a sudden I was one of the women I’d been feeling so much compassion for. When I saw “metastatic” on a blog, or article, I actually thought to myself, “I’m doing everything I can. I won’t go metastatic.” So my appointment started off poorly, and was about to get a lot worse.

Without a blow-by-blow accounting, the gist of it was that my doctor had reconsidered, and was now recommending a bilateral—both sides—mastectomy, and recommending it “110%.” This triple negative cancer is aggressive, and we want to get rid of it once and for all, and with no primary, the safest thing to do is remove all breast tissue. You can consider reconstructive surgery, and it can be done immediately. It will require a number of revisions, since it is a work in progress when you use your own tissue, as opposed to saline implants. They will be large scars. It’s no walk in the park….”

I have been quietly freaking out for four days with this news. When I was trying to think of a visual to accompany this post, I thought of Russian matroschka dolls. The outside one, the largest, protects the others. Inside is the next one, slightly smaller, but still protecting the rest, and so on. The larger one is the me everyone sees. The next, the one that acquaintances see, the next, the one that, say, the neighbours see, then the me the kids’ teachers see, and so on, through the me my friends see, my relatives, my sisters, my children, my man, down to the tiny, unprotected and raw me. And that is how I feel. This diagnosis, not an estrogen-positive breast cancer, Stage III with a tumour on the mammogram that can be measured and staged, but a vicious. aggressive cancer with a tumour lurking somewhere out of sight. I feel so alone.

There is no doubt that I will undergo the operation. I understand the rationale. I don’t want my breasts if they harbour a cancer that can strike back again in six months or a year or two. I want the bast chance to escape this cancer, and if this is the way, so be it.

But the thought of the surgery, or surgeries, since there will be three, makes my stomach heave and my heart jump and my throat close. I feel my shoulders burn and my arms shake. I’ve had many things happen in my life that people have said “I don’t know how you do it.” Well, this time, I don’t know how I will.



14 Responses

  1. I am so so sorry to hear this. I can imagine the hell you are going through with everything and now this! But if it’s required then it’s got to be done. My neighbour had her right breast removed and breezed through it, no muss, no fuss with her.
    One thing to remember that your breasts do not define you, and that you will the same person after the surgery. But I do understand the emotional part of getting there.
    You will get through it, you come from strong women so you can and will come through this experience just fine.
    I’ll be thinking of you,
    Take care AK – xo

    P.S. Your first cousin has asked if I could send along your blog to her. I wanted to ask your permission first especially now when you are feeling so down. You can let me know either way and it will be all good.

    • Hi! Thank you for the encouragement. I know I’ll have it done, it’s just that I HAVE been defined by my chest since I was 12, and that’s a long time. But I will be saying goodbye to them. Please send my blog along to my cousin, and anyone else whom you think would benefit or be interested in reading it.

      • I have a pair of “large girls” too and I know how difficult it would be for me to have to make the decision to let them go. I admire your strength and courage as you face such major decisions while trying to get better.
        I was thinking about that needle you injected, just about had nightmares! I don’t know if I could do that, and you did it. Man, that’s really something!!!
        take good care of yourself
        AK – xo

      • One more of those needles to go, and then on to Phase 2 of this crappy side trip from my life. You’re kind saying “strength and courage” because so far I’m not feeling that way. I guess you and I are two of the women on this branch of the family tree who were gifted with “large girls.” Now I get to choose the size I want. Weird.

  2. You are not, nor have you ever been, defined by your breasts. At least not by anyone that matters. You are optimistic, intelligent, energetic, compassionate, creative, nurturing, intelligent and a stimulating conversationalist. To hell with the breasts, get rid of em. Good riddance. Terrifying? No doubt. But you will always be you, breasts or no breasts. I would give you mine if that would help. xox

    • The one thing I’m hoping is that when they examine them, they find that freaking primary site. That will be some consolation!

      • And thank you for the compliments, you made me feel much better. I know they have to go, and not for a second would I not be doing it. It’s the majorness of that operation, the proximity to the heart, hating general anaesthesia and the absence of self and the inability to wake up, plus the pain afterward that freak me out.

  3. Here here to Heidi! You are a most amazing woman, breasts or no breasts. I know it’s going to be hard to say goodbye to them, and as women they are part of us, like our hand or foot but closer and more of a friend than a utility, but if they have to go to keep you healthy then so be it. I just wish I was able to get my ass out there. No holiday time left and buying a new house puts a damper on that idea for now, but I’ll work on it.

    Sending love & hugs xoxoxoxo

  4. I’m so glad you bought that house! You totally deserve it.

    I think part of the thing is that our breasts are right in front, too. If I had to lose my butt, I’d say no big deal (hahahaha, but it really is a BIG deal), go ahead. But in front where I can see the handiwork 24/7? Yuck.

    Seeing your notes is excellent medicine. It’s like the old days and our letters back and forth. But no enclosures!!!

    • Ohh our letters!! Yes! I think we spent the better part of our free time writing letter to each other! I remember writing one very long letter in different coloured felt pens haha!! Every paragraph was a new colour ;D. Funny thing is that I still love colour & pens and will write cards or notes the same as that multi coloured letter. Some things never change! Haha!

  5. After some time I heard about chemotherapy. This therapy was more harmful to patients. After therapy you have many side effects like hair loss, memory changes, infections, mouth and through change etc. In chemotherapy patient get worst condition.

    • Chemo is very harmful to patients, yes, but also very harmful to the cancer. I can live with the hair loss, chemobrain, burning hands and feet, blistering, pain, etc., etc.; I’m counting on the cancer having a worse time than I do!

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