In honor of Breast Cancer Awareness month, I’ve decided to repost a … Read the rest →]]> I’m in the war of my life, at the door of my life, got no choice but to fight til it’s done.
War of My Life, John Mayer

In honor of Breast Cancer Awareness month, I’ve decided to repost a series of blogs I wrote last year (2013) about my breast cancer journey. Writing about the process helped me cope with the feelings I had before, during and especially after my surgeries, and I received several emails from women going through the same or similar experience.

My hope in reposting these blogs is that more women whose lives have been impacted by breast cancer will know that they are not alone. And so, without further ado, here is the start of of my journey:

I love John Mayer. More correctly, I love John Mayer’s music. I mean, he’s not hard on the eyes but he is commitment phobic and, well, I’m a happily married woman. But his music is bluesy and soulful and it speaks to me.

Last Monday, as I drove the 55 miles from home to work, I heard the song War of My Life, and while I’ve probably heard the song a hundred times, this time, it spoke to me. And I realized that, since I received the results of my breast biopsy on April 30^th (see I’m a Noble Warrior, I’ve Got This), I’ve been engaged in the war of my own life.

Here’s how it started. On Monday evening, April 29^th, I picked up a voicemail from my doctor. “Great news on the biopsy, Suzanne. No cancer. I’ll call you tomorrow to check in.” I heaved a small sigh of relief (I didn’t really expect it to be otherwise) and went to bed.

The next morning as I’m driving to work, the phone rings. I answer it (using my built-in, hands-free setup), and it’s my doctor. “Hi Dr. McClure,” I said, “thanks for the great news on my biopsy.” “Yeah, about the biopsy,” she begins, “it’s true that you don’t have a cancer, but they did find something called Atypical Lobular Hyperplasia.”

“Atypical what?” Turns out that Atypical Lobular Hyperplasia (ALH) is a pre-cancerous condition (in the milk lobes) which may or may not become cancer. “So that means there is surgery in your future. An excisional biopsy (lumpectomy) at a minimum. Unless you decide to do something prophylactically.”

“Wait, what?” I said. “Prophylactically? As in, mastectomy?” By the time I pulled into the parking garage at work I felt like I was living in a parallel universe. And then, when I’d gathered my wits about me, I set out to learn more about my condition. And when I’d gathered all the facts, I made the decision to have a bilateral mastectomy. Here’s why:

1. A person with no risk factors for breast cancer has a 10% chance of getting breast cancer in their lifetime. People with ALH have a 4-5 time greater risk of getting breast cancer. So instead of 10%, my risk is now 40-50%.

2. Women between the ages of 45-55 (I’m 52) with ALH have the highest future risk of developing breast cancer, making my risk higher than 40-50%.

3. Women with a strong family history of breast cancer have an even higher future risk of developing breast cancer.

I have a strong family history of breast cancer.

In 2007, at the age of 51, my sister Diane was diagnosed with ALH. Before undergoing a lumpectomy to remove more tissue, she had a breast MRI which revealed nothing out of the ordinary. The lumpectomy revealed that she had cancer, and that they did not get clear margins (meaning there was cancer in the perimeter of the sample).

After undergoing another MRI, the radiologist saw something in the other breast that looked like it could maybe be something suspicious after all. A second lumpectomy was performed on the other breast which also revealed cancer with no clear margins.

It became clear that my sister’s best option was bilateral mastectomy with reconstruction (also known as radical mastectomy). The pathology of the tissue removed revealed hundreds of tiny tumors in both breasts that were not seen on imaging.

Three months later, at the age of 49, my sister Pamela found a lump. A mammogram revealed nothing unusual. An MRI revealed a tumor. Deciding on the more conservative lumpectomy, the pathology revealed two tumors, side by side: one tumor was cancer, the other was ALH.

Though both of my sisters tested negative for the breast cancer gene (BRCA 1 and BRCA2), a woman who has more than one immediately family member (mother, sister, daughter) who has had breast cancer but tested negative on the BRCA 1 and 2 test, has about a 40% chance of developing breast cancer in her life.

So, what does all that mean for me? In terms of risk, I’m not sure. It isn’t as simple as adding the risk of having ALH to the risk of having strong family history together. The truth lies somewhere in between and every medical professional I’ve spoken to, from surgeons to oncologists to genetic counselors, seems to have a different answer.

But the bottom line for me was this. Whatever the actual risk percentage is, it is too high for me.

And so, after carefully considering all options—weighing the pros and cons of each—I have decided that, rather than playing Russian Roulette with my life and opt for the most minimally invasive option (lumpectomy), I’ve decided to eliminate my lifetime risk (as well as a lifetime of fear) by having a bilateral mastectomy (I prefer even numbers and don’t wish to be known as the Uniboober).

But I didn’t come by this decision quickly or easily or without a lot of struggle (I’ve swung to both sides of the pendulum so many times it’s made me dizzy), and until last week, I wasn’t 100% certain I’d made the right decision. And then, last week, events unfolded that crystallized my decision. Here’s what happened:

Last Monday, while discussing my situation with a coworker/friend, she said, “You know, Suzanne, it seems to me that you’ve been given a warning sign. Maybe your mother is trying to tell you that she couldn’t stand to see another one of her babies suffer the way your other two sisters did.”

That night, I broke down and cried for the first time since this began (which is shocking for me, I’m a crier). Big gulping sobs that shook my whole body. As I crawled into bed that night I snuggled the teddy bear that my mom had crocheted for me when I was eight twenty-eight and when I held him, I felt her love. And then I talked to her. “Mom, I need for you to tell me what to do. And you need to pretty much hit me over the head with the answer.”

Tuesday I saw the breast surgeon who told me that ALH is tricky because, when it becomes invasive cancer, it isn’t normally seen on imaging (as in both my sisters cases).

Wednesday night my sister Pamela called. I hadn’t spoken to her since the day of my diagnosis and I didn’t know which way on the pendulum she would swing. When I finished telling her of my struggle to make a decision she said, “Well Suz, it’s a no brainer. Have the surgery. All of us Whitfield girl’s should have it. I wish I’d done it myself.”

And in her words I heard my mother’s voice, as clearly as if she’d been standing in front of me (hands on hips and wagging a finger at me). And so my decision was made.

On Thursday I woke up feeling lighter than I had in a long time.

On Friday I spent the morning communing with butterflies (I simply adore them) at the Conservatory of Flowers in San Francisco’s Golden Gate Park. That afternoon I met with the plastic surgeon who will be doing my reconstruction, and he was funny and kind (seriously, his name is actually Dr. Kind) and it further cemented my decision.

And finally, as I sat in rush hour traffic on the freeway heading home, I kid you not, a white butterfly flittered in front of my window, pausing for several seconds before taking off.

In that moment, I knew my mother was speaking to me. Good job, Suz. You made the right choice.

And so, sometime soon (I’m trying to plan around the John Mayer concert on July 23^rd) I will be having a bilateral, nipple sparing mastectomy with reconstruction.

What about you? What “war” have you had to fight, and how did you go about making your decision? I want to know.

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. … Read the rest →]]>

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 Decision:

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:

The Pain:
It hurts. Like hell. But I have a high tolerance for pain and this didn’t bother me. Too much.

The Numbness:
After a mastectomy, you lose all sensation in your breasts. Getting used to the numbness takes time.

The Complications:
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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The Diagnosis

Back in April I was diagnosed with a pre-cancer condition called Atypical Lobular Hyperplasia (see Russian Roulette or Mastectomy) and, because of a strong family history of breast cancer, decided to have a preventive bilateral mastectomy.

The decision was … Read the rest →]]>

The Diagnosis

Back in April I was diagnosed with a pre-cancer condition called Atypical Lobular Hyperplasia (see Russian Roulette or Mastectomy) and, because of a strong family history of breast cancer, decided to have a preventive bilateral mastectomy.

The decision was a difficult one, in part because I wondered how I would feel if the post-surgery pathology report came back showing no further instances of this pre-cancer condition. Would I feel as though I’d made the wrong decision? I mean, it is a pretty very extreme surgery and the pre-cancer I had might never turn into cancer.

In the end my two sisters who are survivors convinced me that, regardless of the outcome, I was making the right decision. By having a mastectomy, I would be eliminating my lifetime risk of getting breast cancer. No more six-month mammograms. No more breast MRI’s.

No more worrying.

And then last Monday my breast surgeon called me with the results of the pathology. I held my breath and awaited the verdict, determined that I would be fine with whatever the results were. “We found several more instances of the atypical lobular hyperplasia,” she said, “and extensive amount of ductal carcinoma in situ in both breasts. The good news is that because the cancer was contained inside the milk ducts (has not yet penetrated the breast tissue or lymph nodes), your surgery would be considered a total cure.”

Diagnosis and cure all at once. Cancer and the cure. I had breast cancer but now I’m cured.

I had breast cancer.

Surprisingly, that news threw me for a loop, and I’m still trying to process it. The scariest part?

Why wasn’t it seen on imaging?

Necrosis

Meanwhile, as I continue to absorb my diagnosis, I have a new complication to deal with. A visit to my reconstructive surgeon last week revealed a good-sized section of skin on my left breast that appears to be dying. Apparently this happens when the surgeon cuts too close to the skin and leaves it too thin to survive.

But for now it’s a wait-and-see game. This week I will apply an antibiotic ointment used on 3^rd degree burn victims to the area and when my doctor returns from vacation next week, we’ll decide if another surgery is in order to remove the affected area.

There WILL be Unicorns

The good news is that I have received not one but two unicorns to help me heal, and since I already have two fluffy kittens, I think I’m all set. Now it’s time to just lie back, watch some Downtown Abbey and try to stay away from all the baked goods my sister left behind from her stay while my body continues to heal.

Thank you to all of you who have left encouraging messages over the past couple of weeks. I can’t begin to tell you how much they’ve meant.  I’m hoping in the next week or so I’ll feel up to responding to your comments once again.

Reposted from August 13, 2013.