Roleane Ligtenberg
Roleane Ligtenberg

On November 20, 2013, I was diagnosed with breast cancer (infiltrating ductal carcinoma), stage 2 grade 3. I had a biopsy approximately 10 days earlier at St. Joseph’s breast assessment. Lying on the table while the doctor took the biopsy, I cried and cried. The doctor asked why and I replied: “I’m the last woman standing.” 

Three years earlier, in December 2010, my sister passed away from breast cancer. The year before that, my mother passed from ovarian cancer. They had both tested positive for a mutation in the BRCA2 gene. I had not formally been tested but knew I was high risk. With my family doctor, I was followed closely in those years. But while lying on the table having the biopsy, it just broke me. I felt so guilty knowing I would have to tell family and friends that I too had cancer. I felt guilty because I did not test and prophylactically remove my breasts. The worst was to tell my children and my sister’s children, as we are very close, and telling my dad. I did know immediately before meeting with my surgeon that I would choose double mastectomy.

My surgeon was Dr. Barbara Heller. She had done my sister’s lumpectomy and remembered my sister. She also agreed with double mastectomy. She has such a down-to-earth personality. The day of surgery, as I was lying on the OR table, Dr. Heller entered and asked how I was doing. I could only nod as tears threatened to come. Dr. Heller held my hands and spoke with such gentle kindness. “It’s the right decision,” she told me. Waking after the surgery, I remember feeling a weight lifted and thinking “I can sleep now.”

The four weeks preceding surgery were the worst. I would fall asleep, wake around 3 a.m. and be unable to fall back to sleep. The horrible thoughts that enter your mind in the middle of the night are nerve wracking! I even ended up in the emergency room at St Joe’s one morning because of a panic attack. I am still amazed as to how a diagnosis of cancer can turn a person into someone they do not recognize. I am a nurse, I keep a calm, professional face with my clients, I supported my mother and sister during their illnesses and always managed to stay in control. Now here I was, diagnosed, and as much as I tried to calm myself and talk myself out of panic, my body didn’t listen. It felt like my body was on fire up my back and down my arms, my chest heavy. I thought at times I was having a heart attack. Even in emergency, I wanted to stay calm, give my symptoms, state my history, but the moment I opened my mouth to speak, I started crying instead. Blood work and ECG came back clear and I sent home with some Ativan. 🙂

My surgery occurred in December 2013 and I recuperated during the holiday season. I met my oncologist, Dr. Bindi Dhesy, in January. I started chemo the end of January 2014 and finished May 2014. I had a hysterectomy/oophorectomy in November 2014. I am now in follow-up and have just signed on to a clinical trial comparing the accuracy of PET scans and bone scans in breast and prostate cancer patients.

I have five children and each handled it differently. My youngest was very sensitive to how I was reacting to chemo. I had painful headaches with the first treatments, only a day in duration, and I saw him checking around the bedroom door frequently and when I started to move and act as myself, I could see him physically relax. He was 12 when I was diagnosed. My other children, ages 15 through 21, did not say much but I could sense their fear. Now that I am a year out of treatment and working full time, they act and talk as before. Even my spouse says: “You are all fixed” and  “They got it all.” 

I find now I am very emotional. I cry easily. I wonder whether I am struggling with depression. I am currently meeting with a counsellor. I think that seeing how my sister’s illness went and what I know as a nurse play into my thought process: “Be positive, but…it can come back… five years aren’t up yet.”  The fear of what if?  What if it comes back and I have to tell my children? To put them through this illness weighs heavily on my mind. I keep living but the thoughts creep in even when you don’t want them to. That is the sucky part of cancer!

I have not had reconstruction yet, as I was advised to wait two years in case radiation was needed. I thought maybe I would get used to having no breasts but as time has moved on I am not OK with it. I am meeting with a few plastic surgeons. Mastectomy scars are not pretty, but if I have reconstruction I certainly want to be happy with the results.

The history of breast cancer starts with my sister. She found a lump in 2005, stage 3 with lymph involvement. She was the only female we knew with breast cancer in our family. She needed a lumpectomy, chemo and radiation. In 2009, the cancer metastasized and she passed away on December 24, 2010, five years from her diagnosis. My mom was diagnosed with ovarian cancer, stage 3c, in 2007. She had surgery, a colostomy, chemo, and ultimately passed away in November 2009.

After mom’s diagnosis, my sister pressed to have gene testing done. The tests were positive for a BRCA2 mutation. I also tested positive and my brother is positive.

My diagnosis made me push my children to be tested and I still struggle with whether it was the right time. My daughter has an awesome family doctor whom I believe has been instrumental in helping her with this news. But she has clearly told me that she will not talk about it until she is 25. She has gone with me to an information evening for BRCA carriers. Knowledge is power and we are so blessed to have the amount of information.  At this point, she is in the prime of her life and to have this information, follow her health and continue to live and plan for the future, is a heavy load to carry. My son tested positive and will not talk at all. So I do not broach the subject. For my daughter who is negative, I am so happy she does not have this burden to carry and yet she also experienced some guilt to be negative. Normal feelings, to be expected, but difficult at the same time. My other two children are not of age yet to be tested.

To top it off, we were informed this year that on my husband’s side is a BRCA1 gene mutation. My husband Mike was tested and is positive, our daughter, who was negative for BRCA2, was retested and thankfully is negative for BRCA1 also.

Needless to say, we have a health history that needs to be followed closely, and as such we benefit from monies raised, so I asked my daughters if they would join me in making a team and raising money.

I knew of the BRIGHT Run from advertisements and my chemo nurse spoke to me about it. The first year I was not mentally ready but this year was “OK let’s do it.”  I was only team captain because of signing up our team; otherwise it was an equal desire to raise money. I know of women who have walked for Princess Margaret and we first considered that but reading that to participate there was a set amount that had to be raised put us off. There are so many other illnesses out there that also deserve money that it is only fair to raise what you can.

The biggest reason to do the BRIGHT Run was that with our history, the Juravinski Cancer Centre will be involved in my life and the lives of my children for many years.  There are also so many other people dealing with breast cancer that we know of in our work, school, and church circles. I pray that research may preserve the health of my children and future generations.

By Roleane Ligtenberg