Amy's Story, Diagnosed at 34
I was 34 years old and 21 weeks pregnant when diagnosed with Stage II invasive breast cancer on October 10th, 2001. Since breast & ovarian cancer runs in my family on my Mom's side (aunts, great-aunts, cousin, grandmother, great-grandmothers) I was always very careful to do my monthly breast self-exam and I also started getting mammograms at age 28. All of the breast cancer struck in the early to mid 30's, so I was determined to get a jump on it. Every time I did the self-exam though, there was always that feeling of dread, that "what if" I found a lump.
Well, that feeling of dread became a reality on the morning of September 30th. I was taking a shower and decided it was time to do a self-exam. It had been a few months since I had done an exam. Being pregnant, my breasts seemed to be changing, getting bigger and more painful every day, so I had neglected to do my monthly exam. I had even skipped my yearly mammogram that year because I was right in the middle of infertility treatments. I just couldn't risk getting a mammogram if I was pregnant.
I was examining my breast and then I felt it--a small, firm lump about the size of a marble on my left breast, in the upper, outside region. I had never felt anything like this before. I kept trying to find it. Sometimes it would be there, and then it was gone. I was alarmed, but since I was pregnant it was hard to tell if this was just a clogged milk duct, a cyst or something more serious. I tried to remain calm, but it was hard not to be anxious considering my family history.
Three days later I had a needle biopsy that turned out inconclusive. That following Monday I had the lump removed and two days later I received the news that would forever change my life..."I'm sorry Amy, but it is cancer." I also remember the words that came next, "but honey, we're gonna do all we can to fight it!" He said it was a miracle that I even found the lump because he had trouble finding it while I was on the operating table. It was very close to the chest wall and hard to feel.
Those next few weeks were a fog. My family and I were in shock. I didn't think it was possible to cry so much. Even though most of the women on my Mom's side of the family tree had received a cancer diagnosis, you still never think it can happen to you, especially when you're pregnant. Millions of questions were swirling in my mind. They say not to take aspirin when you're pregnant...how can a baby survive chemo? Will we have to abort the baby...this precious baby that we tried so hard and long for?
We met with my surgeon that following night and got all the details. It was a 2.2 cm tumor which is considered stage II and it was infiltrating ductal or inside the milk duct. It was also poorly differentiated or a very aggressive tumor (which is mostly the case with young women's cancers) and estrogen receptor positive which he said was a good thing. That meant I could take Tamoxifen later on to help prevent a recurrence. However, they were not able to get clear margins, which meant there were still cancer cells around the edges of the section they removed. He did say that most women that have what I have are cured. One good thing to hold onto! Surprisingly, both my surgeon and oncologist told us that chemo is considered safe for women in their 2nd and 3rd trimester. Even though the chemo drugs cross the placenta, they had never had a baby born with birth defects. We were thrilled to hear this miraculous news!
My battle plan was laid out: four rounds of chemo (Adriamycin, Cytoxan, and 5-FU), three weeks apart. This would get us up to about a month before delivery and would allow me to regain my strength. They would not do any more surgery until after the baby was born. This worried me a lot because this meant they couldn't check the lymph nodes to see if the cancer had spread. This is usually the first thing that is done after a cancer diagnosis, but it would have to wait. They would induce me three weeks early and then do the mastectomy and check the lymph nodes.
The chemo started that following week. It was the standard, regular chemo dosage, no chemo-lite for pregnant me. I was warned of the usual side effects: hair loss, nausea, mouth sores, high risk of infection due to low white blood cell counts, and tiredness. I was especially worried about the nausea and tiredness. I was already getting tired from just being pregnant. How could I function and take care of our rambunctious 3 1/2 year old if I was even more tired?
Miraculously the chemo went very smoothly. I never felt any nausea throughout the four treatments. I think I have wonderful Zofran and the grace of God to thank for that! I only experienced headaches, mild fatigue and some GI problems. Also, I never actually lost all my hair even though I was given the chemo drug (Adriamycin) that was notorious for this. It must have been all those good prenatal vitamins and good hair genes! I did start to lose some of my hair and everyone told me to take charge and just shave it off. It's much better to do it this way then to stand there pulling out clumps of hair. So I had my head shaved about two weeks after the first chemo, but it immediately started growing back and I never lost any more hair after that.
I was a little worried about how my daughter Rachel would react to my bald head. It was quite a shock since I used to have shoulder length, very thick hair. We told Rachel what had just happened and I slowly took off my turban. She was amazing. She looked at me, smiled and said "Don't worry Mommy, it will grow back." I just couldn't believe her response. She seemed to like my new look! She would come up to me and rub my head a lot. I would also tickle her with my head and that became a favorite game with us.
I decided that the best thing to do would be to keep as normal a schedule as possible with Rachel. She was too young to understand exactly what was going on and I was grateful for this. It was hard enough just getting through this with me and my husband, let alone having to help my child deal with all the emotions. We just told her that Mommy was sick. Keeping a normal schedule also helped me as well. I could have just cried my eyes out (which I did the first few weeks) but I just couldn't live my life like that. Life goes on and I was not going to let this cancer diagnosis rob me of having a somewhat normal life with my family.
Throughout the chemo, I had monthly ultrasounds and they continued to show nothing but good news. Baby Wolfe was developing right on track and was very active! At week 30 I started having weekly fetal monitoring to track the baby's activity. Every single session showed that she was doing wonderfully and actually ahead of her due date by 2 1/2 weeks!
They decided to induce me three weeks early so as not to delay the treatment I needed to receive. On January 30th little Sarah Beth came into the world at a very healthy 8 lbs 11 oz. and with a full head of hair (more hair than Mommy!) Everyone was amazed at how healthy she was considering what she had gone through. She was truly our little miracle baby from God! Our prayers had been answered.
Because I got breast cancer at such an early age and had such an extensive family history of both breast and ovarian cancer, my oncologist suggested that I be genetically tested to see if I have one of the breast cancer genes, BRCA1 or BRCA2. If you have a mutation of one of these genes you have an 80% to 90% chance of developing breast cancer over your lifetime and a greatly increased risk of developing another cancer in the other breast. There is also a 20-40% chance of developing ovarian cancer.
After mandatory genetic counseling, I had the test, a very expensive blood test that was fortunately covered by insurance. Six weeks later the results were in...I did test positive for the BRCA1 gene mutation. I wasn't shocked, but just felt so very fortunate that I had this knowledge, this knowledge that would help us decide the best treatment options for me and to be proactive in fighting this insidious disease. I kept thinking, knowledge is power!
Because of the BRCA1 mutation, both my surgeon and oncologist recommended that I have a double mastectomy and have my ovaries removed. So over the course of the spring and summer of 2002, I had a double mastectomy with latissimus dorsi back flap reconstruction (my lymph nodes were all negative...Praise God!) and a complete hysterectomy in December of 2002. 2002 will be forever remembered as the year of the surgeries!
Since I'm positive for BRCA1, this means that my daughters, Rachel and Sarah have a 50/50 chance of testing positive. The earliest they can be tested is at age 18. Also, since I was positive for BRCA1, this meant that my mother is also positive. I also have two sisters and they were both tested. One tested positive and one tested negative. Based on this information, both my Mom and sister decided to have prophylactic double mastectomies. It was almost harder for me to watch them go through their mastectomies since they didn't have cancer. I told them they were very brave, but my Mom just kept saying that we're just being smart.
Every step of the way I had the total support of my family and friends. My family came with me to doctor appointments and all of my chemo treatments. They were so supportive and became my biggest cheerleaders! I never felt like I was going through this journey alone. My church and my MOPS (Mothers of Preschoolers) group were also there for me every step of the way, providing prayer support, meals, babysitting, house cleanings...you name it.
I also ran across on the Internet a support group called Pregnant with Cancer. They matched me up with a woman who had gone through a cancer diagnosis while pregnant and she would call me to talk, send letters of encouragement, etc. They also sent me the monthly newsletters which detailed story after story of women who had been through it, had survived, and both they & their babies were thriving. This was exactly what I needed to hear! It was so comforting to hear these success stories. If they could do it, so could I!
I wouldn't wish this experience on my worst enemy, but many good things did come out of it. I believe I'm a better person because of my diagnosis. Because of all the trials, my faith was tested and I drew closer to God. I've never prayed so hard in my life! And I do believe in miracles now because I've witnessed them first hand. I really had to let go and let God. I had to trust that God had a plan for my life even though I was experiencing this bend in the road.
I also found out about the power of prayer...I think I was on every prayer list from her to Timbuktu...I was actually on a prayer list in Poland! This was just an awesome feeling, knowing that I was being lifted up in prayer, even by people I didn't even know. It also taught me to treasure every single moment, to not sweat the small stuff, and to just try to enjoy life to the fullest. I try to find the joy in everything. Life is a precious gift from God and I treasure it more & more every day!