The call came on a Tuesday. The call I’d been expecting. The call that would deliver the results of my breast biopsy. I wasn’t worried. Despite the fact that two of my sisters had previously been diagnosed with breast cancer. For some reason, I didn’t feel it was in the cards for me.
“What will you do if the results come back positive?” my husband asked over breakfast the previous Friday, just after the biopsy.
I shrugged. “That’s a no brainer. I’ll tell them to take ‘em both.”
I’d just pulled into the parking lot at work when my doctor called with the results. “No cancer,” she said.
“Great,” I replied, not surprised by the results.
“However, they did find some atypical cells. I’m afraid you have another surgery in your future. A lumpectomy, at a minimum. Unless you choose to have a mastectomy.”
My heart leapt into my throat. “Whoa, wait a minute. Mastectomy? Just what exactly are you saying?”
“You have a condition called Atypical Lobular Hyperplasia…”
ALH is a pre-cancerous condition in the milk lobes of the breast which may, or may not, become cancerous. The more risk factors you have, the greater your chances that it will develop into cancer. My doctor pointed out that with two direct relatives who have had breast cancer, along with several other factors, my odds of getting breast cancer were pretty high.
Suddenly, my mind was a whirl of choices, none of which seemed like the right choice. Still in a daze from the news but determined to gather as much information as possible before I made my decision, I went to see a series of doctors.
The first stop was a breast surgeon. I thought I was going to discuss all of my options, but as it turned out, I was there to discuss a lumpectomy (the removal of the tissue surrounding the affected area—which had been marked with a dot during biopsy).
Pros: A lumpectomy might remove all the affected cells.
Cons: It might not remove all the affected cells, which would require further surgery.
My second visit was to an oncologist, where we discussed the use of Tamoxifen (an oral chemo drug) to stop the spread of the ALH.
Pros: It is a non-surgical (non-invasive) way to treat the condition.
Cons: Tamoxifen has many unwanted side-effects, not the least of which is instant menopause (may be temporary or permanent).
My third stop was to another breast surgeon to discuss preventive mastectomy. Dr. Nima Grissom explained to me that, because ALH is contained within the lobes (or the ducts in the case of atypical ductal hyperplasia) it is difficult to detect because it doesn’t show up on imaging until it has progressed to invasive cancer. Mine was detected because they were testing a suspicious calcification (which was fine) and just happened to capture some atypical cells surrounding it. Which is why doing nothing was not an option for me.
Pros: It would provide a total cure (assuming they didn’t find any actual cancer in the pathology).
Cons: It’s major surgery.
My final stop was to a genetic counselor to discuss my family history and to better quantify my chances of someday getting breast cancer. The genetic counselor took a detailed family history and explained that, even though my sisters both tested negative on the genetic testing, it was very possible that their cancer was in fact genetic, that geneticists can only test the genes that they know today are linked to breast cancer (and that there are very likely many more yet to be discovered).
The bottom line from the genetic counselor: my chances of getting breast cancer at some point in my life were very high, likely greater than 60%.
This begged the question: If I knew that the plane I was boarding had a 60% chance of crashing, would I get on it?
Answer? No. I chose bilateral mastectomy.
What to Expect After Mastectomy:
Mastectomy is not for everyone. One of my sisters chose it, the other did not. It’s a very personal decision that should not be made lightly. Even given my odds, it was not a no-brainer. And even after I made it, I wondered if it was the right one.
What if, I asked myself, the pathology report came back and the only thing they found was that tiny bit of ALH from the original biopsy? It’s not that I wanted them to find something more, but could I justify removing both of my breasts for such a minute amount of pre-cancer?
Answer? Yes, because I did not want to live with the fear of wondering if that tiny little spot would turn into something more. I also knew that there was a distinct possibility that it might’ve already turned into something more.
And so, one year ago today, I underwent a bilateral nipple-sparing mastectomy. A few days later, the pathology revealed extensive amounts of bilateral carcinoma in-situ. Cancer that is contained within the ducts or lobes. That tiny spot had indeed grown into something more.
Things the Doctors Don’t Tell you about Mastectomy:
It hurts. Like hell. But I have a high tolerance for pain and this didn’t bother me. Too much.
After a mastectomy, you lose all sensation in your breasts. Getting used to the numbness takes time.
My friend Susie Lindau (to read her Boob Report, click here) underwent a bilateral mastectomy five weeks before I did. She sailed through with only one minor complication.
Five weeks after my mastectomy, I had a second surgery to remove a patch of skin that died. The surgery itself was easy (compared to the first one), but because of this condition, I had to take antibiotics for six weeks, which made me pretty sick.
And now, six months after my reconstructive surgery, I’ll have a fourth surgery to remove a capsular contracture.
The Emotional Toll:
This by far has been the hardest part for me. A few weeks after the mastectomy I began crying for no discernable reason. And I couldn’t stop. Medication helped, but for a long time, no matter how hard I tried, I could not summon the joy I used to feel every day of my life. But time heals all. A year later I’m finally beginning to feel like myself again.
Someone asked me recently if, knowing everything I know today, I would still make the same decision.
Answer? Yes. I have no regrets. It’s been a long journey—and it’s not over yet—but I’ve learned a lot about myself this past year. I’ve learned that I am stronger than I thought I was (my surgeon, Dr. Gabriel Kind, calls me “one tough Chicago chick”), and that it’s okay to vulnerable (and to ask for help).
Oh, and because getting pissed off is sometimes the only thing that feels good, I’ve learned to embrace my inner bitch.
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