Breast Cancer — Without Breasts?

5 02 2011

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




19 responses

5 02 2011

You always score high. Think about it. But I’ll repeat the prayer daily.

5 02 2011

And we will be with you every set of your year of hell and celebrate each year after that for the next 40 years! Here’s th growing old together!

5 02 2011
Molly MacDonald

Well written, informative, helpful to other women and a post that will bring those who pray to their knees on your behalf . . . .

Amy, I would like to consider making you a regular contributor to The Pink Fund blog, particularly if you would write about your ability or inability to work, what kind of effect the loss of your income due to treatment will have on your family etc.,

If you are up to it, I could meet you at Beaumont during one of your treatments.

You have my email . . . .

5 02 2011
Linda Stanislawski

Amy, we are standing with you that your treatments will be highly successful. Praying for you to kept in peace, strengthened in joy, and encouraged by the love that surrounds you.

5 02 2011

Amy… I guess I did not realize you had had the bilateral mastectomy. How horrible that the beast found its way back. CANCER SUCKS, I know this first-hand. But, a second go-round…. that’s unjust to the 100th degree. I will continue to pray for you. If your success has anything to do with your spirit and your attitude, then cancer will certainly lose this fight! God Bless you and your family.

5 02 2011

Not only are you strong, but also very inspirational!!! I feel that your words and your story are going to touch many lives.

5 02 2011

I see you are a very strong lady! I’m on the side lines rooting for that high
score!! I want to thank you for explaining everything along your journey.
Love Kelly

5 02 2011
Joi Morris

Excellent blog Amy. I have posted it to the Positive Results Facebook page.

I have a dear non-BRCA friend in the same situation. She had bilateral mastectomies and her initial cancer was found early with no node involvement. A month before her 5 year anniversary she didn’t find a lump but her tumor markers went up and she discovered that her cancer was back, but in other organs.

I pray for you and for everyone else I know who is Stage 4 that treatment keeps the beast at bay. That you get to raise your kids and dance at their weddings. And that you get to hold your grandchildren in your arms.

Rooting for you,

5 02 2011

You are an inspiration. Keep fighting the fight.

5 02 2011
Mary Goedert

Awesome style, awesome attitude, awesome candor, awesome ferocity….and I feel an awesome prognosis in the cards….

5 02 2011
Amy Rauch Neilson

Thank you, Mary. Your comment came in at EXACTLY THE RIGHT MOMENT. I was just about to fall into a heap on the floor and sob at the fear of death…

5 02 2011
Margaret Stark

Hey there girlfriend! In our kitchen, I’ve laughed with you until I couldn’t breathe and now, I cry with you both tears of pain and hope. I have a bracelet that I have started to wear in honor of you and this battle that “we” are fighting even from a distance. You have many prayer warriors at work dearie and know that we love you and are so inspired by your words and spirit! Your journey is a blessing to so many and your blog such a tribute to women! Thank you! 🙂

5 02 2011
Amy Rauch Neilson

To MANY MORE of those times in the kitchen when I make you laugh so hard you can’t breathe…I’m grinning just thinking about it.

5 02 2011
Bob Adams

As you know Amy, I’m in the “older” category of age. I regret I won’t be here 40 years from now to celebrate with you, but you can be sure I’ll be looking down and saying “well done” girlfriend.

5 02 2011
Amy Rauch Neilson

I love you, Bob. I LOVE YOU! When are you coming to Detroit? You know the Neilson B&B ALWAYS has a room waiting for you!

7 02 2011

I pray God gives you all the time needed on this earth!! I pray the cancer cells disapear and never show up again. You fight girl – fight, fight, fight!!

24 02 2011

I learned about your blog at dinner tonight at a restaurant in Houston, TX. Stand tall and proud, pick up the stick and beat it back. You own the stick and you know how to use it. I believe in you.

6 12 2015

I stumbled on your blog researching breast cancer without breasts, I am considering having both breast removed after some genetic testing came back BRACA 1 positive had breast cancer 4 years 10 months ago stage 1 I am also removing ovaries and fallopian tubes. I cringe to think the cancer could come back again I know its not 100 percent when you have the surgery but here’s hoping!!!!!!!!, I wish you another 40 years with your family

23 01 2016
Leah Douglas

I just had reconstruction after a double mastectomy, I am going g through this right now….. I just had to have a biopsy yesterday, I’m worried and praying. I ddnt not have breast cancer, I had BRCA1 gene, so I was trying to be proactive. My mother passed woth breast cancer at my age 22 years ago. I know God has a plan and I’m in His hands.

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