So, here I am again, at the base of yet another cliff. Except, this one doesn’t even feel like a cliff to me. It feels like I just took a step down, like, I don’t even feel like I’ve scraped my knee this time.
Remember how I said last week that my doctor and I both suspected I was having progression? Turns out we’re both very smart, because indeed, I have some liver mets now. The largest one is 1.5 cm, and I’m having it biopsied this week to confirm it’s indeed cancer, and if so, what flavor. Let me take you in the way-back machine to last spring, when I first got diagnosed, because this will help you understand what we hope to learn from the biopsy.
So, when I first had the biopsy of my breast tumor, the pathology lab at the community hospital where I go for care decided it’s neuroendocrine breast cancer. NBC is extremely rare, like, 20 US cases per year. Not 20 mets cases, 20 total cases. Like, really extremely fucking rare. Neuroendcrine cancer in general isn’t super common, but when it happens, it usually starts in your digestive tract or your lungs, not your breast. NBC tends to be a bit more aggressive than regular breast cancer.
My doc sent the tissue sample to a second lab, who came back with a different diagnosis, based on the exact same sample: invasive ductal carcinoma with neuroendocrine features. How these two diagnoses differ, I’m not really sure; I think it has to do with how neuroendocrine-y the sample is? But the path lab at the community hospital was like “NO! IT’S NEUROENDOCRINE! I’LL FIGHT YOU!” That is to say, they felt strongly that they were right. My doc decided to treat both the neuroendocrine aspects, and also the breast cancer aspects, by choosing chemo drugs that would work on both. And I had a pretty good response to those drugs. My breast tumor shrank such that when the mastectomy happened, it was just scattered cancer cells in a field of scar tissue, instead of a 7 cm tumor. And the hip and sternum tumors were no longer cancerous.
The thing the two pathology labs agreed on was that my cancer was estrogen-receptor and progesterone-receptor positive, and HER2-negative. Some breast cancers are positive for all three; some are positive for just one or two of those; and some we call triple-negative, because they’re negative for all three. Now, ER+ cancers like mine should respond to what we call endocrine therapy: drugs that strip the estrogen out of your body and prevent any estrogen that’s left from attaching to your cancer cells. Unfortunately, because we’re seeing all these new tumors, we know that my cancer isn’t responding to these drugs.
So, what we want to know now is, is my cancer no longer ER/PR+? Cancers can and do evolve, the way bacteria do, and that means they do sometimes become triple-negative over time, the way bacteria become resistant to antibiotics, Knowing I have triple-negative disease will impact my treatment plan, and which clinical trials I’d qualify for. In addition, I’d like another couple sets of eyes on my sample to see if we can figure out if it really is neuroendocrine breast cancer, or not.
And finally, we’re also going to send a sample for genomic testing. You’ve probably seen this on the news or in several recent documentaries–the idea is, we’d take a look at my specific cancer and see what kind of mutations it has. Sometimes drugs designed for other cancers will work on breast cancers that have specific mutations, so it could open up the possibility of using some other drugs on my cancer. We’re also going to get serious about clinical trials now. My doctor says he’s going to put my name on lists for any trial he thinks might help, and having my cancer sequenced could help with that.
What this also means is, I’ll be going back into chemo starting next week. I made my oncologist promise he wouldn’t screw up my book signings (I actually threatened to punch him in the nuts if he did), so y’all better be there on May 4 at Sole Repair on Capitol Hill in Seattle! Get your tickets at this link. I start chemo on May 5, but my oncologist assures me that it won’t screw up the big event at MamaCon, where you’ll get to see me, Rebecca Gallagher, Tracy DeBlois, and Michelle Back on May 15, and there will be free booze. Did I say free booze? DARN TOOTIN I DID. Get your tickets at this link.
In addition to the whole liver mets thing, we’re being proactive on those brain mets and I’m having gamma knife surgery today. I’ll write about what it’s like, and maybe share some photos, in the coming days. As my regular readers know, I usually write twice a week, but with all this treatment going on, I’ll probably be dropping down to once a week instead, but I’m committed to continuing to share my life with you guys. Because, despite everything cancer has taken from me, it hasn’t taken my fundamental need to overshare. So, you all should mentally prepare yourselves for side effect stories in the weeks to come. You’d better hope none of them involve anal burning!
Aha! I was behind on my reading and see the note about genomic testing now. š I am glad you are doing a biopsy. Mine was Her2- and became Her2+ which obviously makes a huge difference! Hopefully genomic testing opens up more options too. (((hugs))) Now eat more bacon, for me. I seem to be out of bacon…
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Thank you for sharing all the details of what you are going through… Maybe it helps you to know the information is helpful to others? You are dealing with a lot, remember to take it one day at a time. Have you tried meditation? I have it as a tool in my coping toolbox, I bring it out as needed… It helps me to stay in the moment and appreciate the present. Thinking of you… Hoping you will have the energy and motivation to keep us informed as you carry on carrying on…
What the fuck? Anal burning?
You crack me up. And I completely blame you for my rampant use of the F word lately. You make it so cute.
You make it sound so sciencey and I actually understand so much more reading your posts. Don’t kick Eddie in the nuts, kick the cancer. Gosh, if only we could do that!
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One of the steroids they gave me last year can cause anal burning. Luckily it didn’t to me…and luckily for my doc, he didn’t screw up that book signing schedule! š
I really don’t know what to say. I just know I want to hug you. And then take you out for pie and coffee and talk about anything that comes across the table which tickles our fancy and give you some breathing room from this bullshit.
Beth, I have been flipping around your blog, wishing you the best in your treatment, feeling the terror all moms feel when they contemplate the fact that they are definitely mortal, and I happened upon your comments about prematurity. I know this is off the subject you wrote about today, but I wanted to say, I hear you on so many things. My brother died in a horrific construction accident when I was 21 and he was 25. My life as I knew it ended. I didn’t deal with that trauma very well and unfortuantely encountered all of the world’s worst people – people who say stupid things and invalidate your love and your grief and even the person you lost. At 31, I had my first child. She was 32 weeks, and I nearly died before I even got to see her. The NICU was a nightmare – I try not to think about it. My PTSD is so severe I impress myself with my ability to leave the house. My second child was born at 34 weeks, and I had a nervous breakdown afterwards from the new and the old trauma. I don’t think I’ve ever had anyone show me any real kindness or understanding for what I went through – my husband is the silent, unemotional type – but I read what you wrote and I recognized in myself that terrible pain. You’re smart to express these things and to be honest about how bad they are. It’s hard to go through these things and know that there are no promises – there’s no cap on how much hell you can go through in life. I wish I could say I’d met my quota and could get comfortable again. I wish that for you, too. Thank you for you honesty – it means a lot.
I’m sending you such a huge hug right now. We NICU moms gotta stick together!
You never fail to crack me up while tears blur my vision… more love sent.
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Got my tickets and looking forward to seeing you on May 4th. In the meantime, lot of good thoughts being sent to you and yours.
Thank you for explaining all this. I have learned so much from you and I worked at a cancer hot line for 7 years. Thinking of you today and everyday.
Beth, I am sorry that you’re dealing with another issue.
I’ll be curious to know what flavor your new cancer is. I have a friend who is on a trial for triple negative (for lung, kidney, bone and liver mets). Now she is only dealing with the liver mets, and those are shrinking. Everything else is on remission.
I wish I could attend your book signing. I love the cover!
I am thinking of you. Wishing you never face any complications. Wishing you recover quickly (I have some awesome remission stories from stage 4 patients).
I also wouldn’t mind reading about anal burning. But I would rather you don’t have to deal with that.
XOXO
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I keep reading your posts, every one as you publish. I don’t think I’ve commented before. I just wanted to let you know, though I am a silent reader, I am a devoted one. I am keeping you in my thoughts and prayers, sending you good vibes. Thanks for keeping on posting, even though sometimes it must seem too much.
I have no words. Just love and strength. And nut sack kicking.
Beth, Thank you for your post today. I will be thinking of you through this process. I will be having scans in a few weeks and just the thought of them makes me super nervous. I hate cancer! I loved meeting you. Good and the bad.
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