Invasive Lobular Carcinoma

Invasive Lobular Carcinoma, 1.2 and 2 cm. Multiple foci of Lobular Carcinoma in Situ around both tumors.

In 1994, at the age of 35, I had no idea what it meant. It didn't really matter then, because after my first mammogram and ultrasound the conclusion was that the lump I could feel was a benign cyst or a fibroadenoma. No additional tests were undertaken. I was happily ignorant. I mean, we trust experts don't we?

The fine needle aspiration biopsy in february 1997 wasn't my idea. My regular doctor suggested it. Dr. Gaustad was a thorough  man. He probably saved my life that day.
After the needle thing, the pathologist said everything was fine, but  I had to remove the lump just to make sure. The lump was removed shortly after. The whole scenario struck me as odd. Why did the lump have to come out if nothing was wrong?

Two weeks later the hospital called - 12. March 1997 - the day after my 38th birthday. "This is doctor so-and-so; we have received the pathology report. It's cancer". I could not for the life of me understand that the man was talking about me. All I could say was - Oooops! He explained what was to come. Modified radical mastectomy. My head was filled with white, cold silence. So it was cancer after all. Why wasn't it discovered in 1994? I had to tell my husband. Nils had lost his first wife to cancer. I felt as if I was about to ruin someone's life. Nils was calm. He said: "You'll be fine". My mother fell apart. She cried and cried.

A modified radical mastectomy.  It means they're chopping off the whole thing and removing the lymph nodes in your armpit. I learned after the operation that they had found two invasive lobular carcinomas and extensive findings of LCIS between the two tumors. It could  also be one tumor, measuring 5 cm, they weren't sure. The cancer cells were Estrogen, Progesterone C-erb-2 and pS2 positive. All of these, good prognostic factors. My lymph nodes were cancer free, but the resection margin was not clear.
I had a speedy recovery. The swelling (fluid accumulating)  in my armpit was rather uncomfortable, and they removed some after a few weeks. After I got out of hospital I walked around looking like Napoleon for a while, protecting the left side of my chest.  Having someone bump into me didn't seem particularly appealing. The arm and shoulder were stiff and painful.

I started radiation therapy in May. The lesion had been close to the chestwall and there was risk of recurrence. The radiation staff was very supportive. They told me that my skin would become sore. 'Sore' is a mild understatement. After 30 treatments my skin began to  peel.  It looks pretty awful, a heavy sunburn covered with green gore. Painless but extremely "hot". Every week I went for blood tests and consultations at the cancer unit. I think they found my case rather boring. After a month  I stopped taking Tamoxifen. Not the smartest thing to do perhaps, but I did. I didn't fancy an early menopause. The doctor wasn't happy.

I finished my last radiation treatment at 10 am on 3. July 1997.  A few hours later we were off to France on holiday. I had a heavy heart and I felt very lonely. My chest was burning, and moist from the skin peeling. I couldn't wear a bra.  It was so ... awkward. So ugly.

I never told anyone about how I felt about everything. I tried to be brave and couragious. When I realized my mistake, it was too late. It was so difficult to ask for help. My family, my friends and colleagues, the hospital staff were all there for me - I just wasn't able to cry on anyone's shoulder. I just froze.  It must have been the loneliest time of my life.

In November 1998 I had a prophylactic mastectomy on the remaining breast with immediate reconstruction. It was a controversial thing to do, but I found it better than having mammography every 6 months and the anxiety that goes with it. Besides, my tumors were never discovered  that way, why should I ever trust it? 
The PM reduces the risk of contralateral disease by approximately 90 percent, it does not, however, eradicate the risk completely.
The reconstruction is time consuming. The new breast looks okay, but feels like a rubber ball.  I chose a saline implant which became quite hard as they filled it up. When I bend over it creases. It looks rather funny.

I am now a 4 year survivor. The scar, the flat chest and the radiation marks don't bother me anymore, all that has now become "normality". I don't go for regular checkups. Hospital visits only bring things back. I am not a cancer patient anymore, I am simply a woman with one breast.

Whoever you are, whatever your diagnosis
My thoughts are with you.