My Breast Cancer Story - Part II

(. . . You can find Part I here.)

Over 182,000 women were diagnosed with Breast Cancer in 2008 and over 182,000 stories could be told. This is just one of those stories.

My quiet life was about to become one of doctor appointments, paperwork, blood tests, and screenings. I had 15 appointments and saw 3 new doctors in the first month alone.

Everybody's Cancerworld is different depending upon your diagnosis. The worst breast cancers have already metastasized before they are found. I was fortunate; mine was Stage 0, non-invasive, and my oncologist gave me an excellent prognosis. Grateful doesn't begin to describe the fact that I had 2 treatment choices and neither involved chemo:

1. a lumpectomy followed by radiation,
2. a mastectomy

I researched my options, got first and second opinions and decided on the lumpectomy. Two weeks before my surgery, a complication arose. On a visit to my OB/GYN, an ultrasound found a suspicious cyst the size of a grapefruit on one of my ovaries. Quickly, a hysterectomy was added to the scheduled lumpectomy -  giving me two surgeries for the price of one. Any cancer is scary, but the thought of ovarian cancer was frightening.

I knew going into the operating room I'd be in recovery by 4:00 - if all went well. If the cyst turned out to be cancerous, it would be closer to 6:00 because lymph nodes would need to be removed. Coming out of the fog of anesthesia I glanced at the nurse's watch -- it was 6:30 -- my heart sank and my fear rose. My husband Mark and my friend Susie were waiting for me after I left recovery. 

• Upon seeing them I sighed and said, "I guess I've got the BIG 'C'." 
• "What are you talking about" Susie said, "It's not cancerous!!".  Surgery ran long because the cyst was fused to my bladder and they had to call in a urologist. It wasn't even attached to my ovary! Oh...that's why I have a catheter.

 Two days later, the surgeon gave me more good news/bad news:

• Good news - final tests confirmed there was NO ovarian cancer.
• Bad news - only 1 of the 6 margins from the lumpectomy was cancer free. I would now need a mastectomy. 

My reaction? WHO CARES if I have to lose another body part, I DIDN'T HAVE OVARIAN CANCER!! I was ready to celebrate!

Now I had to make a decision about reconstruction. Implants weren't for me, and I did not want the TRAM or LAT flap surgery that involved sacrificing my abdominal or shoulder muscles. Nothing set well with me until I learned about a new procedure called DIEP Flap reconstruction. The surgery was relatively new & complicated - it involved microsurgery and required a skilled surgeon. But, it was less invasive than other options. I held my breath as I scanned the list of recommended plastic surgeons:

• Austin - no
• Houston - YES! ... Dr. Aldona Spiegel. She was highly qualified...     (700 DIEP surgeries to date), 3 hours away, I had family there.

DIEP (Deep Inferior Epigastric artery Perforator) Flap Procedure

With this decision came more blood work, x-rays, a cardiologist appointment, a stress test, an echo cardiogram, and several trips to Houston. Unfortunately, Dr. Spiegel didn't have an opening until March and my breast surgeon recommended the mastectomy sooner than later. When her nurse said there had been a cancellation I grabbed the date: December 11th, two weeks before Christmas. The mastectomy would immediately be followed by the reconstruction. Another 2 for 1 BONUS!

Over Thanksgiving, I had a lot to be thankful for but I felt guilty when it came to my cancer story. I was about to get rid of the belly fat from 3 pregnancies in a 'paid for' tummy tuck-like operation AND get 2 new, perky "girls"; without having to go through the trauma of chemotherapy and radiation. Most are not so lucky, it didn't seem fair.

The surgery lasted 6 hours and I spent 36 hours in ICU. Actually, my left breast spent 36 hours in ICU and the rest of my body went along for the ride. They needed to monitor the 'flap' every hour for proper blood supply. I was able to get out of bed and walk the halls the next day - bent over. After 4 days I left the hospital and stayed with family (sleeping in a recliner). December 18th my drains came out and we drove back to Austin.

Doppler wire inserted into the reconstruction site

to monitor the blood flow in my new breast.

All goals were met, I can leave the hospital!

Christmas that year was wonderful! All 3 girls were home and there was not the typical hustle and bustle. For the first time EVER, all presents had been bought and wrapped before my surgery. We had time to eat, watch movies, eat, play games, eat, put together puzzles, and eat some more!

Christmas Eve 2008

Two weeks after surgery

The pathology report from the mastectomy was supposed to be available before I went home to Austin. On December 21st, I still had no news so I called the doctor's office in Houston. I was told the report was in and he would be calling soon. Christmas came and still no word. The phone rang on December 26th and it was Dr. Baker. I could hear kids in the background and learned that he and his family were driving to Missouri. He was making a special call on his own time to give me some good news and bad news. 

• Bad News - they had found a SURPRISE 2 cm. invasive tumor in the breast tissue they removed. In a moment I had gone from Stage 0 to within 0.001 cm shy of being Stage 2.
• Good News - I was ER+, PR+ and HER2+. According to the report, all positive outcomes meaning still no chemo. The doctor had given me a special gift, that of a worry free Christmas. 

The day before New Year's Eve I went by myself to see my oncologist. After the usual hello's, he dropped a bombshell. 

"Looks like we'll be adding chemotherapy to your treatment after all". 

It turned out there was a major mistake on the pathology report. Being HER2 positive does NOT have a positive outcome. It doubles the chances of a recurrence because of its aggressive nature. Without chemotherapy, there was a 1 in 3 chance that my cancer would return as a distant recurrence ... as Stage IV ... meaning it might spread to my lungs, liver, brain, or bones ... there is no Stage V. This was the one time I should not have gone to my appointment alone...I cried the whole drive home. I would soon read many sentences that had "HER2" & "poor patient prognosis" in the same sentence...

As a way to pay it forward for those who have breast cancer right now but don't know it, please help me raise much needed funds for cancer services. You can visit my donation page here:

http://fundraisers.mammajammaride.org/alicemueller2016

...Part III continued here "Herceptin, My Wonder Drug"