Breast Cancer — Without Breasts?

This wasn’t supposed to happen to me. Truly.

I know lots of women with breast cancer utter those words, as I also did during my first go-round with Stage 1 in 2006.

Following my 2006 diagnosis, my doctors offered this advice:

“Treat this cancer to the max. It’ll be a year of hell, but it’ll buy you 40 more.”

“I can do a year of hell for 40 more,” I said. “I’m in.”

What did “in” mean? It meant a radical double mastectomy, chemotherapy, an oophorectomy (removal of my ovaries and fallopian tubes).

I did it. I did it all. I did it to the max. I was 4 years, 10 months cancer free when it happened.

On January 9, 2011, I had just come in from ice skating out on the lake with Don and Theo. We were cold, but happy, exhilarated from the rush of the skates gliding on the smooth surface, trails of shaved ice left behind in our wake.

I flopped on the couch, turned on the news, and pulled a polar fleece blanket over me up to my chest. That’s when I felt it.

Even though I was wearing a thick sweatshirt, I felt it.

My forearm brushed over something that felt like a large marble.

“What in the heck is that?” I thought to myself.

I reached down into my sweatshirt and there it was — a lump the size of a large, red, round grape just below my left nipple.

Don was sitting in the easy chair next to me.

“Honey?” I said. “Could you come here? Check this out?”

He did. I saw a shadow cross his face.

“Was this here before?”

“No,” he said. “This was definitely not here before.”

I contacted the oncologist on call at William Beaumont. I knew there wasn’t anything he could tell me over the phone. But it was comforting just to talk to someone, let them know what’s going on, ask them to start putting the ball in motion.

The next day, with my sister Lisa and husband Don by my side, I went to see my oncologist. She felt the lump. Could be a necrosis, she said. Could be something to do with your implant. Or scar tissue. Or early stage breast cancer.

She left the room and conferred with her colleagues and the breast cancer surgeon, Dr. Nayana Dehkne. Dr. Dehkne ordered a biopsy, stat. I went straight from my oncologist’s office to the other wing of the hospital, where I was prepped for a biopsy.

Dr. Dehkne ruled out a problem with my implant and scar tissue via ultrasound. That left two options: necrosis (hard lump caused by trauma to an area) — or a return of my breast cancer.

Two days later, the biopsy results confirmed what I already knew in my gut. Breast cancer.

So, how does this happen? How, many of my friends have asked, can you get breast cancer when you no longer have breasts?

Science is not perfect.

When I had my double mastectomy, the doctors told me that it is impossible to get every single cell of breast tissue that exists in my body. They try. They vacuum it out from around my collar bone area, under my arms, scrape the cells off of my chest wall. But even in the best circumstances, they can only get 98 or 99 percent. There are some left behind.

Science is damned good. But it’s not perfect.

So, in that 1 or 2 percent of the cells that remained, the Monster found a foothold. Between my left breast implant and my left nipple — which isn’t EVEN a nipple, but a reconstructed, very well done look-alike — it found a few leftover cells of healthy breast tissue to invade.

That’s how it happened.

That’s how I went from planning a square dance to celebrate five years cancer free to battling cancer again — and this time, a Stage 4.

What’s my prognosis? No one knows for sure. But, at least when I asked THE question — Are we talking weeks? Months? A year? My oncologist said, “No, we are not talking months. I do not have a crystal ball, but I believe you could live for years.”

That will likely mean I will move in and out of remission, and will require chemo when the Ugly Monster rears his hideous head.

But that I will happily do, given the alternative.

Once again, I’ll do whatever it takes. I’ll do treatment — and to the max.

Just let it work.

Dear God, when they scan my body in a few weeks to gauge the impact the chemo is having on the cancer in my body, may it be receding, not static, or, even worse, spreading.

Please let the chemo dissolve cancer cells like the dots on a Pac Man game.

Let me score high. Let me enter my initials as the new Champ.

I’ll gladly do another year of hell to buy myself 40 more.

– Amy Rauch Neilson

Guest Post: Pumas in the Crevasse

Guest Blogger and Survivor Gene Rooks tells why she decided against reconstruction.

by Gene Rooks

Knowing Amy through our IClub connections, and sharing the breast cancer experience, I had to laugh at her stories about being naked in Iceland (see Naked at the Blue Lagoon post), and the decision to go with “innies” or “outies.” I also applaud her decision to go for reconstruction the whole way — including the outies. But I am a whole lot older than Amy, and I chose a different route.

Unlike some of you, I don’t carry a breast cancer gene. But at the age of 73, during a routine mammo, a suspicious shadow showed up. I went for the return screening on Dec. 5, and as the technician, and then the radiologist, came in and went over and over me with the sonar, I just knew something was there. At the same time, I had a feeling of complete peace come over me, as I also knew it was in God’s hands, and I would be all right, no matter what the progress of the disease might be.

Things happened so fast, I really didn’t have time to stress out over it. An immediate biopsy was ordered, and I reported to the doctor on Dec. 20 for the results. My dear husband was with me, very apprehensive. My two daughters, ages 45 and 50, were on tenterhooks about the possible diagnosis.

My surgeon was very capable, but not especially sensitive. He walked into the room and announced, “Well, it is cancer, and we will be doing a modified radical mastectomy.”

I wasn’t surprised, but I was speechless. I had expected he would slide into the diagnosis and discuss options. But my sweet husband, in utter shock, sputtered, “But, what will they put in its place?”

Now I found my voice. Quite firmly I said, “Nothing!” It’s funny that the initial discussion was about reconstruction rather than than the procedure itself.

The doctor assured him reconstruction could be done at the same time as the surgery, and they surely had enough fatty tissue to work with. But they also would need to reduce the size of my other breast, so they would match. My surgeon said, “You wouldn’t want an 18-year-old reconstructed breast next to a 73-year-old one!”

I again reiterated that there would be no reconstruction, as I wanted nothing to do with moving around any more tissue than necessary, and certainly not a surgical attack on the other breast.

All this of course was right before Christmas, with its usual full slate of activities and long to-do list. Again, I didn’t have time to stress, and didn’t. There was not a tear shed by me, or even any feeling of anxiety.

Surgery was scheduled for Dec. 30, and I was home the next day. A lovely way to start the New Year, but we had some remodeling scheduled for the kitchen and dining room, and we went right ahead with it, so I had plenty to keep on my mind beside my healing process.

The healing process actually wasn’t as smooth as the surgery itself. Fluid under the skin kept building up, even with the “ticks” in place to drain it. I had to have more installed, and when the skin eventually adhered, it developed a deep fold.

I was really upset by that. I complained to my surgeon that there very well could be pumas in that crevasse. He looked at me like I was nuts; he was too young to remember the Smothers Brothers. (For readers also too young to remember, they had a hilarious routine, the punch line was, “There are pumas in the crevasses.”)

He offered to do a correction, but I thought not. I did some research and found a plastic surgeon willing to do surgery to modify the scar area. It is strange that Medicare and insurance companies are more willing to pay the higher price for reconstruction than a much simpler scar modification, but I found one, and he did a wonderful job.

So, Amy, it is probably just as well I didn’t get to accompany the group to Iceland. I would really have gotten some stares with my original, now 76-year-old breast, and a nice, smooth, flat surface on the other side.

But I am happy with it, my wonderful husband doesn’t have any problems, and my clothes work just fine with my store bought silicone gel boob. And, most importantly, I am into the fourth year, all clear.

Innies or Outies?

My three-year-old son's belly button. Definitely an Innie...

Here’s a question I thought I’d never have to answer again once I left the gradeschool playground — Innies or Outies? That was the question at recess on days when the swings and the monkey bars had become a little too hum-drum. Not only did you have to declare yourself as one or the other, but you had to prove it by lifting your shirt and showing your belly.

It was a little like Dr. Suess’s story of the Sneetches — a group of yellow, beach-dwelling creatures who distinguish themselves from one another by the green stars on their bellies. Those with the green stars are part of the “in” crowd while those without…well, I need not go any further — I’m sure you remember the wrestling for top dog that is just a part of growing up. And, like cooties and indoor recess on rainy days, when I moved on to junior high, I was happy to leave that part of my life behind.

Fast-forward to 2006. It’s a cool autumn day in November, two weeks before Thanksgiving. I’m sitting in one of the examining rooms at my plastic surgeon’s office, perched on the edge of the examining table, wiggling around and trying to get comfortable as I sit on a fresh piece of the ever-present roll of crinkly white paper.

“You’re going to need to decide whether you want innies or outies,” he says to me as he’s looking over my paperwork. About 30 seconds pass before he realizes I am sitting there in stunned silence (he has known me long enough to realize that silence is not something I’m known for). He looks up at me over the the top of his glasses.

“You know, innies or outies,” he says, pointing in the general direction of my breasts in way of explanation. I look down at them. They are only partially covered by my ill-fitted gown. I finally realize what he’s talking about. My nipples.

“Innies or outies?” I say quizzically.

“Yes, you get to choose. But remember, whatever you choose — that’s the way they stay.”

So, that night at home, I broached the subject with my husband, Don.

“Innies or Outies, eh?” he said. “Hmm.”

“What do you think?”

We debated the pluses and minuses of Innies and Outies but in the end, it was clear the decision had to be mine. Choose Innies and I’d have the freedom to forego bras at my leisure –because (BONUS!) fake boobs never sag. Choose Outies and they’d look more “real” — but I’d have to cover them or they’d poke through the light-weight fabric of summer tank tops. Though that seemed like a bit of extra trouble, truth was, I wanted my new breasts to be as close to their predecessors as possible. And so, I chose Outies. And though I often look down, I’ve never looked back.