It was 1968 and I was only 18. In my left breast was a fairly large lump. Because two of my aunts had been diagnosed with breast cancer, I feared the worst. I knew little about breast cancer in those days. I didn't know that most lumps are benign and breast cancer at my age would be extremely rare. I was SO relieved when the doctor assured me that it wasn't cancer. To give me peace of mind, I decided to have the lump removed. It was indeed found to be a benign fibroadenoma.

This would not be my last lump. I have fibrocystic disease. In fact, I have developed so many cysts over the years that I became blasé about it. My gynecologist would frequently aspirate them at my yearly visits when they increased in size. Self exams seemed pointless because I was always so lumpy. Due to the number of cysts that I developed, I had yearly mammograms and ultrasounds.

Three years ago, at age 48, I had two more masses. However, this time the doctor wanted to investigate further with fine needle biopsies. This was a first for me and my anxiety level rose. Fluid was removed from the first mass in my right breast and I sighed with relief because I assumed that meant it was just another cyst. The second mass, in my left breast, was a different story. There appeared to be no fluid with this mass. This had me worried but I was assured that it still "looked" like a cyst. Two days later I received a phone call that one of the masses had exhibited some "hyperplastic features" but within the range of normal. They recommended a follow-up in 2 months. This is where I made my second mistake- I didn't ask for a copy of the report. I had already mistakenly dismissed the first mass as okay because they had gotten fluid from it. Thus, I made the assumption that the problem existed in the second mass from which no fluid was ex! tracted.

The next day, my gynecologist called me and suggested that I might want to have the mass removed rather than wait for the follow-up. I agreed. I collected my mammograms from the diagnostic center and went to see a surgeon. I explained that I was concerned about the mass in my left breast because they couldn't get any fluid out of it. Unfortunately, he listened to my tale and never mentioned that the report showed concern for the hyperplasic features in my right breast- not my left! In fact, he suggested I could possibly avoid the surgery if he used a larger needle to aspirate the mass. Naively, I agreed to the procedure and sure enough he drained the cyst. When I left the doctor's office I felt assured that I had nothing more to worry about.

The following year I went for my routine mammogram and they reported no change. It wasn't until TWO years after the needle biopsy that my mammogram and ultrasound raised flags again. This time the doctor suggested a core biopsy of the same mass in my right breast and it indeed came back as invasive ductal carcinoma. I was in shock but even more so when I gathered my records to take to the surgeon. This was the first time I ever saw a written report from the earlier fine needle biopsy. I realized that I had misunderstood the doctor and had reported the wrong concern to the previous surgeon. Had I gotten a copy of that report at the time, I would have insisted that the mass be removed two years earlier! It was a costly lesson to learn.

So now I had breast cancer. What to do now? I was referred to an eminent breast surgeon in the area. He recommended a lumpectomy for my 1.6cm tumor along with a sentinel node biopsy. He explained to me that should one of those sentinel nodes be found to be positive for cancer during surgery, he would then continue to do a full axillary excision. He also gave me an informational video tape that had been made by the local hospital that showed the whole procedure from beginning to end. This was SO helpful ! to me. It lessened the fear of the procedure itself.

The wait for the day of surgery seemed endless. My life seemed on hold because I wasn't sure how much life there would be after the surgery. Finally, on President's Day 2001, I was rolled into the operating room. I awoke to the smiles of my husband and son- my sentinel nodes were clean! I had not had the full axillary excision. The doctor reported that he had gotten clean wide margins and he felt my prognosis was very good.

The next step was to decide on my post-surgical treatment. By this time I had read a book for newly diagnosed breast cancer patients. I was learning to be my own advocate. I requested copies of all of my surgical and pathology reports and I made appointments with two separate oncologists- one that was recommended by the diagnostic center and the other by a friend who had been treated for breast cancer by a local expert.

I knew that my cancer was 1.6 cm, greater than 90% estrogen and progesterone positive, Her-2 negative, node negative and that the doctor got clean margins. However, after my surgery my tumor had been upgraded from low grade to intermediate grade because some cells were poorly differentiated. My Bloom-Richardson scale number had gone from a 5 to a 6 because the tubular formation was now rated a 3. It had already been hinted to me to expect chemotherapy, radiation and Tamoxifen. So when I saw the first oncologist, I wasn't surprised that he made that very recommendation.

However, I was surprised by the second oncologist. I thought the recommendation would be the same and it would only be a matter of which doctor with whom I felt most comfortable. Instead the second oncologist told me that he did not recommend chemotherapy. In the time following my visit to the first oncologist, an additional report from the pathology department had been released that said that my S-factor was only 1.8%. Thus my cells were dividing at a fairly slow rate. It gave further evidence that mine was a slow growing ca! ncer. T he doctor explained that because my cancer was so estrogen positive, it would respond very well to Tamoxifen. On the other hand, because chemotherapy kills the cancer cells during the dividing process, it would not be as effective with me. He did explain that 80% of oncologists would recommend chemo based solely on the size of the tumor. If that is what I wanted, he would not argue. However, he felt that the damage to my body from chemo was not worth what he felt was a 1% gain that I might get from it. After much soul searching, I opted to go with the second oncologist's approach… no chemo. This was a difficult decision because I had to fight the guilt that I wasn't doing EVERYTHING to stop recurrence.

During all this time, I had various other tests done. Since I had a strong family history of breast and prostate cancer in my family, I had genetic testing. This thankfully came back negative. I also had a baseline bone scan. Once the genetic testing came back, I started taking Tamoxifen. Within the first month, my sporadic periods stopped. I also started my radiation treatments. My radiation oncologist determined that I need 25 treatments with 5 boost treatments in the tumor area. I tolerated these treatments fairly well. I had to put up with the normal redness and itching but nothing I couldn't handle.

When it was over, I thought I could finally start moving ahead with my life. WRONG! Immediately following the radiation, my husband and I left town to attend a wedding in a remote area of Oregon. At this time I was still using the aloe gel that was given to me by the radiation oncology center. Little did I know that I had been building up a sensitivity to this gel. As the irritated skin became redder and angrier, I reassured myself with the memory that at my last radiation treatment the doctor said that my skin would get worse before it got better. So I continued to slather on the gel thinking I was helping the situation. It soon became apparent that the rash was spreading. ! By this time it was late Friday afternoon and I was in a town without a doctor. I called my dermatologist in Southern California and he recommended cool compresses and cortisone. Unfortunately, I innocently continued to use the gel as well. By Sunday, the rash went from the middle of my neck down to my diaphragm including both breasts. I was miserable. At this point we knew I had to get medical help. We drove from Oregon to Southern California in one day so I could see my own doctor who diagnosed my rash as severe dermatitis. It took 3 weeks before it completely cleared up.

However, during those 3 weeks my breasts became very sore and lumpy again. At my post radiation checkup, my oncologist wanted to do more mammograms and ultrasounds. This revealed that I had numerous cysts so I had them aspirated. In addition, I started to have pelvic pain. This was more than the cramps that I'd had for years. My oncologist wanted to test my estrodial (E2) levels. He also ordered a transvaginal ultrasound. My tests revealed that I now had a 4.5 cm cyst on my left ovary and a 1.5 cm cyst on my right. My estrodial level was 386, indicating my hormones were at ovulation levels.

At this point my oncologist recommended that we wait and repeat the tests in 6 weeks. He felt I might be having an initial surge of estrogen in response to taking the Tamoxifen. During that 6 week wait, I went through a lot of anxiety and doubt. Was the estrogen feeding my cancer? Did I make the wrong decision by not having chemo? Why was there so little information on the net concerning this side effect? Would I have to have abdominal surgery? I felt so alone. I had not joined a support group because by choosing not to have chemo, I felt I had not earned the right to complain. Now I had an unusual side effect that isolated me further.

At the end of the 6 weeks I repeated the transvaginal ultrasound and estrodial tests. This time my E2 level was even higher (431) and I now had a 5 cm cyst on my right ovary! The oncologist ! felt we had to get my estrogen levels down because he felt it was competing too much with the Tamoxifen. He recommended that I either have my ovaries surgically removed or make them ineffective with the drug Lupron. I chose the Lupron because I have always tried to keep my female organs. I know that the ovaries make testosterone as well as estrogen and I was afraid of losing my libido permanently.

I had my first Lupron shot on September 11th, the day the terrorist attacked the World Trade Center. I was told to expect hot flashes, night sweats, and vaginal dryness. After six more weeks I still had no side effects and my pelvic pain had abated. I was sent for new testing and this time my cysts had disappeared and my estrodial level was less than 10!

It's been seven months since that first shot. I still have not had a single hot flash. I recently passed my one year cancer-free anniversary. I've also had my last Lupron shot. So now I wait. Will my estrogen levels go back up? Will the cancer come back? The more time that passes the easier it is to believe that life will get back to normal. But what is normal now? I know it will never be ignorant bliss. Cancer has changed that. However, now I am part of a wonderful on-line support group "Breast Cancer Survivors and Friends" and life is getting better. I now can believe in tomorrow