It’s been a month since I posted publicly. Where to begin? Saying goodbye to the ta-tas?
The day after the last post here (July 5), I got the pathology report. It wasn’t what we were expecting.
Invasive lobular carcinoma (ILC) tends to be slow growing (mine has the smallest possible growth rate number) but my tumor measured at least 2.8 cm (one margin was positive, more surgery). Going in, the docs (UW and Swedish) thought it was <1 cm.
All four sentinel lymph nodes were involved. Going in, the docs (UW and Swedish) did not expect this because of how slow this cancer grows, in general, and my very low growth rate marker.
So. Not small. Not contained. Still Grade 1, however, due to very low rate of growth and minor cell mutation.
Because I have a bottomless need “to know”, I began a deep-dive into the National Institutes of Health (NIH) database. No surprise (at this point): invasive lobular cancer isn’t studied as widely as ductal because it’s not as common.
A bit of second-guessing (an aside)
DAMMIT I lost 35 pounds. I eat right. I exercise.
I’ve been tested every six months for six years, alternating mammogram and MRI. MRI is supposed to be the gold standard for catching lobular. This wasn’t caught by MRI or mammogram – it was an accident. Something looked wrong, biopsy showed the “something” was benign but oh by the way here is some other stuff that’s not.
What happened in 2011 to lead to bi-annual tests?
Two lumpectomies: one was lobular carcinoma in situ (which is not considered cancer) and one was abnormal ductal hyperplasia. Both are risk markers for future breast cancers.
In my mind VaMason caught the non-cancerous (contained) lobular carcinoma in situ (LCIS) in my right breast with a mammogram, six years ago. But maybe (probably) it was just like this time: some calcifications that were suspicious but the lobular stuff got swept in as an aside.
Still, my mind wants to revisit decisions: did I make a strategic mistake by sticking with Swedish for imaging? By staying with satellite clinic (suburbs) instead of going downtown (which I had done for years and years with VM)? By not actively seeking out an oncologist?
The one thing I feel is true — based on my reading my notes from 2011 — is that I did not understand how high my actual risk was because my biopsies revealed the two most common forms of breast cancer. I don’t know if that was because I didn’t hear or because it wasn’t expressed. AND I know that my oncologist did not talk to me about developments in ILC in our annual visits.
I understand that waiting is the hardest part. This cannot be overstated.
We scheduled body and bone scans for the following Wednesday, July 12th.
The folks at SCCA are awesome. My very long day was abbreviated after I checked in on the 12th, with the bone scan having been rescheduled into the wait time for the body scan.
Both were negative. Minor celebrations ensued!
Talk with Dr. Javid
Dr. Javid (my SCCA surgeon) phoned on Friday the 14th. This is what I wrote on Facebook:
She’s going to ask the lab to profile my cancer even though they don’t currently base treatments on that data. (No research.) I pointed out that they might next year. She agreed.
We talked about bilateral mastectomy. She said it was a personal decision and it does reduce risk of recurrence. But risk of cancer returning in the left breast (5-10%) is greater than new cancer in the right (0-5%, assumption that there is none there rests on quicksand IMO).
The little voice says Do This. I’ve talked to three people who did; all had undetected cancer in the other breast.
One reason for doing it is that early detection isn’t a thing with lobular, at least my lobular.
She said recovery is 3-4 weeks and that exercise is limited to walking. Three drains instead of one (one for each breast and one for the lymph nodes). No riding the motorcycle, she said. I laughed. (How do they remember these details?)
Radiation is now six weeks, not three. What I’ve read suggests chemo is 13-15 months. Then five years of endocrine drugs.
Towards the end of the call, when she asked if there was anything else, I started to cry.
This evening, I wasn’t able to focus while cooking dinner and almost burned the roasted veggies, forgot to pull the cast iron pans out of the oven before turning it to 400, then sat a hot frying pan on a plastic cutting boardish thing. And cried into Mike’s shoulder.
Yesterday (Th), my original oncologist (Swedish) called and left VM. She had just gotten the pathology report from SCCA and offered to consult. I’ll call her Monday. My energy is AWOL.
My Facebook post from 21 July
I was not expecting the slight lifting of weight off my shoulders that happened when I realized I had decided to have the bilateral mastectomy.
The “known” (and voluntary) scary thing is easier to cope with than the known-unknown (you know there’s something but you don’t know how bad it will be).
I tried to talk about the turtle as a totem/talisman today in our EEO/AA meeting. Our “ice breaker” was to share something that you always have with you. If I had been one of the first, I would have stuck with the phone. But I was past the halfway point – and committee members were sharing very personal stories.
So I started with the phone and then decided to give being personal a try. And burst into tears. And then Paula, the lovely woman who manages our committee (and whose voice reminds me of my Aunt Annette), had embraced me with a hug and a kleenex.
So here’s the long version of that story.
More then 20 years ago, in Singapore, I bought a small jade and gold turtle; I can’t remember if its tiny sparkles are diamonds or zirconia (probably the later). I wore it a lot when I wore suits.
It’s been on my mind, so I found it and fondled it and then put it back in its resting place with other pins (broaches) that I don’t wear anymore.
Then my coworker Jacque taught me the Turtle standing meditation (qi gong) that she learned from Master Wong (18th generation). Last weekend, at the Seafair pow wow, I was wandering around, looking at the arts and crafts and spotted a small turtle on a pendant. I tried it on and knew it would be going home with me. So now I’ve moved the jade turtle to my wallet (I told you it was small!) and I’ve worn the pendant every day but one since buying it.
For those of you not familiar, the turtle is a symbol of longevity in many cultures – certainly Chinese and Native American and Hawaiian …. Sea turtles have made the oceans their home for 200+ million years, and the shell has been unchanged for 200 million years.
Soaring Crane (again)
Back in 2008, my acupuncturist suggested I check out Soaring Crane qigong. I did, and I practiced for at least three years. I continued to practice the lying down meditation for much longer than that, but eventually I let it go. A few years ago, I took a six week mindfulness class as part of King County wellness. That has helped with the stress around Mike’s illness.
Now is the time to resume Soaring Crane, which no longer seems to be taught in greater Seattle. However, I found a group at Seattle Cancer Lifeline and went to my first session on July 21.
The bilateral mastectomy is set for August 30, after my birthday and the solar eclipse on August 21. (I didn’t want to wander around in eastern Oregon in the heat with drains.) I asked Dr. Javid if waiting would be an issue and she said no. I’m glad because had we rushed this I probably would have gone along with breast-conserving surgery.
We’re having a BBQ on the 26th that will be partially an “I’m alive” party for Mike, partially a birthday party, and partially a “say goodbye to the ta-tas” party.