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Nancy Limburg, Breast Cancer Survivor

survivorshipThe first week of August 2011 while I was breastfeeding my 7 month old baby I felt a lump in my right breast.  Actually, it was more like a thickened area than a lump, not what you would think breast cancer would feel like. At first I thought that it was a plugged milk duct or mastitis.  I tried to massage it out and pump a lot but it didn’t go away.  Several days later I called my doctor’s office and made an appointment.  During my doctor’s appointment I was reassured that it “didn’t feel like cancer” and was probably just something to do with breastfeeding.  He waffled back and forth and finally decided to send my in for a breast ultrasound (mammograms aren’t very accurate during breastfeeding).  I happen to work above the breast cancer center at IMC so I scheduled the ultrasound for an afternoon that I worked.  The day of the appointment was the Friday August 19th before school started and at 3:00 that day class lists were to be posted on the doors of the school. I was pre-occupied about which teachers my children would get, and not too concerned about the breast ultrasound.  It really seemed like overkill because I was 35, in good shape, eating healthy, was a healthy weight, had just run a marathon a few months before, and had absolutely NO symptoms of having cancer.  I had been breastfeeding my baby and had my breasts out to feed my baby multiple times a day.  My milk looked normal and I had an adequate supply.  I really didn’t think there was reason to be concerned, it was just to make sure that everything was OK.  What I didn’t know, was that my life was about to change forever.

I started my ultrasound with the technician and she was lightheartedly showing me the full milk ducts in my breast.  She then said that she had to go get the radiologist.  He looked around for a few moments and told me that he was very concerned that the lump I was feeling was cancer. My head started spinning, I couldn’t believe what he was saying, and told him that I was too young for cancer, and had 4 little children and a 7 month old baby.  This wasn’t happening to me….  He then looked in my axillary area and saw several lymph nodes that were on the upper size of normal.  He decided that I immediately needed a biopsy of both the tumor and the lymph nodes.  I would have to wait for Monday for the results, but he was almost 100% positive it was cancer.  I walked out into the parking lot completely shattered and sobbing.  I called my husband and told him what had happened.  We were both in complete shock!    I tried to go back to work, but ended up going home, laying on my bed and crying.   I started having some complications from the biopsy site with milk leaking whenever I had letdown.  After the longest weekend of my life, on Monday August 22nd, at 5:45 pm I got the call that indeed I had breast cancer.  It was invasive ductal carcinoma both in my breast and in the lymph node.  Because of the leaking milk the radiologist made an appointment for me to see a surgeon the next morning.  That was the first of many Dr’s appointments, tests, and procedures I would have in the next year.

The breast surgeon explained to me that I would need to have anything from a lumpectomy up to mastectomy and also may need to have my ovaries removed depending on my BRCA testing (this was the first time that BRCA was mentioned to me).  My mother had breast cancer in her 70’s and my grandmother passed away from breast cancer when she was 68.  They were both post-menopausal, and 1 in 8 women get breast cancer during their lifetimes, so I wasn’t very concerned that my cancer would be related to a genetic mutation. We decided it was best to do the test.  Because my cancer was a little more advanced with positive lymph nodes, the surgeon thought it was best to see an oncologist prior to determining a treatment plan.  I had my first oncologist appointment on Thursday and it was decided that it was best to start chemotherapy right away and then have surgery after chemotherapy.  My tumor was 2.5 cm which is medium size, grade 2, and at least 2 lymph nodes were positive which put me in the 2B stage.  The tumor was estrogen and progesterone positive and HER 2 positive. No one knows for sure, but for a tumor to get to be that size, I had probably had cancer for 1-2 years. I likely had cancer the whole time I was pregnant.

The next day I had a port-a-cath placed for chemotherapy.  The following Monday, 1 week after my diagnosis was confirmed, I started chemotherapy.  Chemotherapy was the hardest thing I have ever done in my life.  I had many side effects, such as mouth sores, nausea, vomiting, fatigue, diarrhea, depression, anxiety, anemia, losing my hair, and many others. The anemia was so bad that I had to get a blood transfusion.   I went from running 30 miles a week to barely being able to walk up the stairs without being out of breath.  I finished chemotherapy in the first part of January 2012.  I missed a lot of the holidays with my children because I didn’t feel good, and also missed my baby’s first birthday party.  I worked as a nurse practitioner during most of my chemo but towards the end, quit my job because of fatigue and stress.

Several weeks into chemotherapy I received the results of my BRCA testing.  It was positive for a mutation in the BRCA2 gene.  Everybody has a BRCA2 gene, it is responsible for repairing mistakes in DNA.  A mutation makes it so the process of DNA repair doesn’t work the way it’s supposed to and contributes to uncontrolled cell growth (cancer).  It increases the risk of several different cancers: Up to 90% risk of breast cancer, 20% risk of ovarian cancer. Peritoneal cancer, pancreatic cancer, and melanoma are also slightly increased.   There is also a 7% risk for men to get breast cancer and also an increased risk of prostate cancer. I met with a genetic counselor and after some research it was determined that I received this mutation through my mother.   I tracked down some third cousins who I have never met, and knew nothing about, whose family has been greatly affected.  One cousin died in her early 30’s from breast cancer and there are many other breast cancers in their family.  I had NO idea that this mutation was in our family, and was the first to test positive in my immediate family.  Many think that only women carry this mutation, but men can have it and pass it on also.  I sent out letters to my mother’s family informing them that they were also at risk for carrying this mutation.  Most ignored it initially, but since, many have tested positive and because of the knowledge caught their breast cancer very early.  Others have had preventative mastectomies and ovary removal.  I have a lot of guilt about the BRCA mutation because there is a 50% chance that I have passed it on to each of my children.  Life is hard enough without having to worry about cancer.

I had a bilateral mastectomy in February 2012 and had tissue expanders placed for later reconstruction.  My pathology showed that the chemotherapy had completely destroyed the cancer in my breast, but I had a few cells remaining in my lymph nodes.  This is associated with decreased survival compared to if all the cancer in my lymph nodes was destroyed.

In April 2012 I underwent 25 daily treatments of radiation.  I tolerated the radiation really well and besides a sunburn, the worst part of it was getting myself there on time every day.  After radiation, I started taking medication to suppress estrogen in my body.  My tumor was fed by estrogen and survival is improved if medication is taken to decrease the amount of estrogen in the body.  I took Lupron to shut off my ovaries, and then Anastrazole to block the remaining estrogen that is made by fat and the adrenal glands.

About 6 weeks after my radiation finished, I had a DIEP flap reconstruction.  The surgery consisted of removing tissue from my stomach and re-vascularizing it to my chest.  It is like having implants made out of your own abdominal tissue.  The surgery took 13 hours, and I was in the hospital for 4 days.  I got a tummy tuck with this and I love it!  Overall I am happy with my reconstruction.  I returned to work several months after my reconstruction.

In November of 2012 I had my ovaries and fallopian tubes removed by laparoscopy.  This was done for 2 reasons, the first is that I have an increased risk of ovarian cancer because of BRCA2, and the second was to decrease estrogen in my body.  This also meant that I could stop taking the Lupron.  The surgery was easy and I had a quick recovery.  The worst part about it was being in full blown menopause at the age of 36.  There are many side effects to early menopause such as hot flashes, cognitive decline, osteoporosis, sexual dysfunction, and increased risk of cardiac disease.  Many young women with breast cancer haven’t had children, or would like to have more children.  I was lucky because I already had 4 children and didn’t have to worry about all of the fertility issues associated with breast cancer.

Breast cancer took a high emotional toll on me; it took away my sense that everything would be OK.  I think the way a lot of people deal with others tragedies and illness is to think that it will never happen to them.  I don’t think that anymore.  Initially I couldn’t stop thinking about breast cancer and would have given anything not to think about it for 5 minutes.  Gradually, those thoughts went away and I have many days when I don’t think about it at all.

This year on June 22nd, I was riding my bike up Emigration Canyon with my 12 year old and started to have chest pain and difficulty breathing.  I went to the ER thinking my breast cancer was probably back.  Surprisingly, it was a collapsed lung.  I ended up requiring surgery in July to repair the hole in my lung.  It turned out that the reason it collapsed was because of radiation damage to my lung.  This is an extremely rare complication, and really set me back emotionally and physically.  I have had some complications from the surgery and am slowly working my way back to normal.

Most recently because of early menopause and chemotherapy I have osteoporosis in my spine.  I have to take medication to treat this so I don’t have fractures when I’m older.  This is hard to believe when I am only 39.

Right after I was diagnosed I would think over and over how this happened to me.  I worked in the medical field as a nurse practitioner, and am very health conscious.  I had a yearly appointment with my OB/GYN and never missed.  I had absolutely no physical symptoms of something being wrong.  I was too young to even get a mammogram.  What could I have done to prevent this? I would see pictures of myself a few years prior to my diagnosis and ask the question how could I not know that I was sick?  If only I could go back and tell myself that there was something wrong I could have avoided this nightmare.   The only thing that would have helped me, is knowing that I carried a BRCA2 mutation.  If I had known this information I would have been getting screened at an early age.  My cancer would have been caught very early and I likely would have been able to avoid chemotherapy, radiation, and all of the complications that have come with it.  Or, I could have had a prophylactic mastectomy and avoided cancer all together. I have a distant cousin in her late 20’s who knew about her mutation from an early age, was getting screening and found out she had early breast cancer that hadn’t become invasive.  She had a mastectomy and reconstruction and is moving on with her life.  This could have been me.   Knowledge is power!  This year I have become a peer support group leader for FORCE (Facing Our Risk for Cancer Empowered) which is a national organization dedicated to helping individuals with genetic mutations that cause ovarian and breast cancer. I would like to encourage women and men with a family history of breast cancer to speak to a genetic counselor and obtain genetic testing if it is indicated.  I will encourage my children to be tested when they are older, so they can avoid what happened to me.

Cancer has given me a new perspective on life. I have learned what is important to me which is my family and children.  I’m not worrying anymore which teachers my children have:) I appreciate my health and body a lot more than before, especially that I am able to run, bike and spend time outdoors.  Right now I am a little over 4 years out from my initial diagnosis and have no evidence of disease and I hope to keep it that way!