Heather's Story

I was in my early teens when I heard about breast cancer and what the treatment entailed. All my girl friends and I would talk about it, and the statistics of getting it. At that time, I think it was 1 out of every 15 would be diagnosed with breast cancer. I would silently think to myself. Gee, I hope I never get that. Then I was in my mid 20's and worked for a major health insurance company. I would hear more and more about the women getting breast cancer. The statistics changed, it was now 1 out of every 12 women. The medical industry had changed slightly on how they handled operations, and healthcare coverage. But women had to pay for their own reconstruction. While working at that same health insurance company, new laws and policy changes occurred and insurance companies began to cover reconstruction of radical mastectomies but only to the cancer ridden breast. It was a change for the better, but still left women in a bind. Fighting a life threatening disease, and left disfigured, and having to come up with thousands of dollars in surgical bills to make them feel and look somewhat normal again. I really prayed I never got any cancer, especially breast cancer.

Knowing that on both sides of my family there was zero history of cancer, and that relatives now and generations back lived into their 80’s and 90’s, I never thought I would get cancer. And it was the last thing I thought I would be doing now, at age 38. Fighting the very thing I never wanted, cancer – breast cancer.

It was Friday night, March 7, 2008 when I found a golf ball sized lump in my left breast. In a millisecond my life changed. I immediately freaked out. There I was complaining to myself about my job, finances, thinking about getting a second job, my love life, my friends, etc. When I seemingly for no reason, just felt the left side of my boob, and found a lump. I immediately thought: “what are you complaining about Heather?” Nothing is as important or could be more trivial, and if anything, I should be grateful for what I do have going on. I was scared. I called my Obgyn first thing Monday morning, and got an appointment. I had a Biopsy on March 12, and at 10 am on the 13th, the pathologist called me with the grim news, Invasive Breast Duct Carcinoma.

I had a couple consultations with surgeons, and decided to go with the one I felt most comfortable. I ended up at the only Cancer hospital in the surrounding 5 state area, The Huntsman Cancer Institute. I started the whole process, MRI’s, CT/PET Scans, and additional biopsies. I had a 2.5 elliptical golf ball sized tumor in my left breast, and 1 axillary lymph positive with cancer. It was really stressful. It seemed like everyday since the 7th of March was bad news. The results of my PET scan showed the cancer in the left breast and axillary, a spot on my thyroid, and a dense spot on my Vertebrae T-3. The Dr’s said the spot on the thyroid was 100% not cancerous, and the dense spot on the vertebrae was 80% not cancerous, but would have to watch it in other scans, if not biopsy later. This was the first good news I had. Shortly after that I found out that I was a triple negative. ER/PR/Her2neu negative.

My surgeon and oncologist discussed my case with the panel of oncologists and surgeons and told me I qualified for one of the trial studies. The study was on its 3rd leg, and was using the same drugs they would normally give a person with breast cancer, plus 2 other medications that were only approved for metastatic colorectal cancer and lung cancer. I began chemotherapy treatments on April 4, 2008. The treatment plan was to undergo 6 months of neoadjunct chemotherapy, surgery and then radiation. I was glad for the extra time to decide whether or not to have a mastectomy or lumpectomy, but dreaded having to go through such a long chemo treatment.

Some of the most discouraging and devastative news came from the first surgeon I saw. Before all the pathology tests were back to determine the ER/PR/Her2Neu or even having a CT/PET scan, she told me the following: I could chose the option of having a lumpectomy that would remove a small grapefruit size lump, which no reconstructive surgery would be done, and insurance would not cover. Or I could have a mastectomy, which would remove the entire breast and nipple, but reconstruction would take place immediately, and insurance would cover. She then told me that she would strongly recommend having the mastectomy, and also consider having both breasts removed, and even my ovaries. She said that I would need to make my decision within 3 days as to surgery options. When asked about the swollen goose egg sized lump in my arm pit, she said it was not a concern and normal swelling from the initial biopsy. She also told me that I would have to take either one or both of 2 drugs given for 5 years to suppress hormones either along with or after chemotherapy. She said that chemo would leave me menopausal for sure, and if chemo didn’t do it the 5 year drug therapy would. I was also told that being 38 was a bad thing and age was not on my side. That if I was lucky I would live for 20 years and at worse I would have 5 years to live. I left that appointment so upset and frustrated.

I was depressed the entire weekend, until I saw the Dr’s at the Huntsman Cancer Institute. The Dr’s there were SHOCKED that anyone would have told me I would only have 20 years at best. They told me that it is now a Federal Law that insurance companies must cover reconstruction whether it is a lumpectomy or a mastectomy. I also learned that without knowing the pathology results and having a CT/PET scan they couldn’t tell me if I would have to take hormone suppressive therapies. I was also told that whether or not I would become menopausal was not absolute, and that it was likely that I would probably get my cycles back because I was 38, not 48. As far as the swollen lymph node in my armpit, they were very concerned and told it was NOT normal. They immediately had it biopsied with a fine needle, and it came back positive for cancer. The more information they have sooner, the better they are at knowing how to proceed with treatment. I later found out that hormone suppressive drugs would have no effect on me or my cancer, and thus no need to take them. I also found out that I did not have a gene for breast cancer. Taking my ovaries would be something I needed to consider. After all of my test results came back, I learned that my cancer is highly survivable. That first Dr spoke to me so negatively and blunt, and later found out that things are NOT so black and white. It has been hard to not let that first consult affect me.

I began chemotherapy on April 4, 2008. It has been rough at times, especially the first half of treatment. I was pretty sad when I had to cut my hair really short because it was falling out, and within days it all fell out. But after the first month of treatment, hair was nothing to be sad over. Chemotherapy leaves you with strangest sick feeling. I feel like I drank some antifreeze and it was absorbed throughout all my tissues, leaving everything from my sinus, taste and bowels disturbed. It makes my organs sort of ache, and the side effects following are hard to deal with. Sometimes it seems like if it isn’t one thing, it another that I have to deal with each week. I have to keep reminding myself that others have suffered and do suffer far worse than this. When I am feeling really icky, I constantly remind myself that the alternative is NOT acceptable, and that I can do this, I can overcome and beat this. I have left myself little notes here and there to help remind myself that I am strong and will out live my grandmother who is now 96.

I now have 2 chemo treatments left, and then I will schedule surgery. I still have not made up my mind as to whether I will have a lumpectomy or a mastectomy. I was told that neither will affect my longevity, only the percentages of whether or not I get a second cancer in the same breast. It is still an ongoing thing for me. Day to day life is not the same. I have good and bad days. It depends on when I get treatment, and side effects. Having a lowered immune system is hard. I love to wakeboard. I live for the summer months of boating and wakeboarding. Unfortunately, mostly due to some of the side effects, I have not been able to do a lot of things. Chemotherapy causes me to feel exhausted quite a bit, and takes the wind right out of you, especially the first 7 days after each chemo treatment. My chemotherapy schedule changed and my drugs switched the first of July, which gives me extra time between chemo treatments. It is really nice to have the extra time to clean my house, do laundry, and get out and have some fun with friends.

I guess it has been a big challenge to not be discouraged, and to think of all the negative aspects of having cancer and going through chemotherapy. I just have to take one day at a time. In an instant cancer changed my life. It made me realize how much I take for granted. It made me realize that life, in life the only thing that is important, the only thing that matters in life is LOVE. All else is just circumstance, and frivolity. I think in a really weird way having cancer has helped my family become closer. Not just my immediate family, but my extended family too. It has helped us communicate better, and be kinder to one another.

I have since become a lot more educated about cancer, and how devastating of a disease it really is. When I was first diagnosed I went through all the how did I get it questions in my head. Maybe it is just biology gone bad, but maybe it is more. I think I have become a lot more aware of the importance of diet. Graduating in Exercise and Sports Science in 1995, and loosing 70lbs and keeping it off for many years, I thought I knew a lot about health, diet and nutrition. But when it comes down to it, I didn’t know enough. As a society, specifically a Western Society, we have a lot of environmental factors that influence our susceptibility to disease and illness; many that we (including myself) are unaware. That combined with genetic influence, and all the other unknown factors, all we have to fight cancer and other disease is our biology – our bodies. Diet is a huge factor on our immune systems, and cellular structure. I was so concerned with looking healthy or fit, I think I forgot or dismissed foods that have the potential to prevent a lot of illness and disease. However, saying that, I am acutely aware that cancer cares not to what you eat, your religion, race, sex, nor how much or little money you have. Cancer does not discriminate. But if I can pass what I have learned on to others, it is that no one is completely immune. That when science tells us that Polycarbonate bottles leech out BPA’s known to cause disease, throw them out. When your mother says to eat your leafy greens, eat them in triplicate. When research tells us that there are “super foods” like the goji, acai, and blueberries, incorporate them into your diet. It can only help.

I think if I was a National Spokesperson for Cancer Awareness I would share the above with people. I would tell people the staggering truth about cancer, all cancer. The incidence of cancer is growing and affecting younger and younger men, women and children. That we as a society need to stand up and demand governmental, and ask private and public donations into the research and development of medications that target fighting cancer more specifically. Researchers are on the cutting edge of identifying different proteins, hormones, and drugs that target cancer cells, but funding is needed.

As a person facing a diagnosis of cancer, I would share what I have written, and the following: No matter what your prognosis, DON’T GIVE UP! I have a dear friend whose mother was diagnosed with Stage 4 Melanoma 12 years ago. She was given 6 months – 1 year to live. She’s not a tip top prime of her life athlete, and she is still here. Yes, she has had several chemo treatments and several surgeries. She has had several cancer free periods; the longest has been the last 3 years. She has had some quality of life changes during treatments and surgeries, BUT SHE HAS NOT GIVEN UP, and SHE IS STILL HERE. I think of her, often. I think to myself, no matter how bad the prognosis, at least I would know. And do everything I can to fight it. No matter what stage and prognosis you are given, find reasons to live, laugh, love and be happy.

If I can pass advice on to anyone recently diagnosed with cancer, it would be to always get a second opinion. Go with a team of Dr’s you trust and believe in, if you ever feel uncomfortable with treatment and advice, it is never too late to seek a second opinion. You are your best advocate, ask questions. Seek out treatment from a cancer specialty hospital, usually affiliated with University Hospitals. Ask about current trials and study medications. Get as much information as you can about your cancer, diagnosis, and prognosis. Find someone to talk to about your treatment, someone who has or is going through chemotherapy, as well as a therapist or counselor. Find time to relax, and do things that are stress relieving. Don’t be sad about your hair, at times I feel ugly too, but know that it will come back. Focus on the positive, tell yourself you are strong and healthy and distract yourself when you are feeling icky. Sometimes it is easy to “talk yourself into” a harder time during treatment, so practice “talking yourself out of it.” Take each day one at a time, when you feel good – go do something! And know in spite of all the people you meet that tell you, oh my mother died of breast cancer, or I have an friend or aunt that died of breast cancer; there are people who have had cancer and now living 38 years later! I have met them. KNOW that you are not alone.