Hi friends,
I had my first surgery on Friday August 15th. My breast surgeon wanted to do a sentinel node biopsy ahead of the main surgery so we could talk about what to do with my lymph nodes while I was awake, instead of her having to make that decision while I was unconscious.
We knew my cancer had spread to my lymph nodes, but the MRI isn't sensitive enough to say for sure how many. It looked like 4 or 5 at the time.
We also hoped the chemo and other treatments I did had a big impact and healed most of the cancer both in the breast and lymph nodes, but the only way to know is to remove some nodes and do pathology on them.
By doing this ahead of time, we would have more certainty about how many we'd need to remove.
We also did a nipple delay procedure which basically starts the mastectomy and trains the nipple to survive with a reduced blood supply. This gives it a better shot at survival!
And we did a small biopsy under the nipple to make sure there was enough margin to keep the nipple.
Drumroll please...
Pathology came back clear! There was no cancer found in any of the 4 lymph nodes she took, and the sample from behind the nipple was clear too!
This is SUCH good news. All that hard work has had a big impact!!
My surgeon was encouraged that 3 of the nodes showed treatment effect (meaning they had cancer and it went away with chemo) and 1 did not (meaning it never had cancer to begin with). To her this indicated that it's likely that only 3 had cancer at all and we got them all.
She injected dye during the surgery and only those 4 nodes took up the dye, she also felt around for any nodes that felt unusual. So this gives us a strong indication that no other nodes were involved.
Standard of care is slow to innovate and sometimes downright harmful!
She then told me that even with that information, the standard of care recommends doing radiation, or if I refuse that, to remove more lymph nodes. You might be thinking "WTF?, you just said there was no cancer there!" And you'd be right. 😖
First - the more nodes you take the greater your risk of lymphedema, a swelling of the arm (in this case) that basically never goes away. I already have some risk with removing 4 sentinel nodes.
Second - radiation comes with a lot of risks, and low benefit. It might decrease my chance of local recurrence (won't do anything to prevent recurrence anywhere else, including my left breast) by just a few percentage points. But there's a good chance it would cause tightening of the skin and tissue, could damage my bones, lung, chest wall, shoulder joint. And of course, radiation causes DNA damage and can lead to cancer!
And studies are being done left and right that indicate that more and more patients should omit radiation. I think it will become a rare part of treatment within the next 10 years.
But I don't have to wait for that! I can look at the data and choose not to put myself through that. Plus I'm doing a lot of things to prevent recurrence (both local and whole body) so I'm confident my chance is lower than the average bear.
And then like a psycho, I flew home for 3 days
I have missed Daphne's first week of school the last 2 years and I really didn't want to miss it again this year. So I flew home Sunday after my Friday surgery, and back to Austin again Thursday early morning to be ready for my big surgery.
It was hard and I was pretty tired, but man it was worth it. Daphne loved having me there, and I felt so rested and calm being at home for a few days.
Choices I made and things I learned at this stage |
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1) I took on the added risk of two surgeries in order to get better info about my lymph nodes, and give my nipple a head start on healing.
2) I chose to fly home for just a few days in between surgeries to be with Daphne for her first few days of school. It was physically hard, but so very worth it.
3) I chose not to do any further treatment on my gorgeous healthy lymph nodes even though the standard of care recommends either radiation or removing more.
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With love and gratitude,
Elizabeth
