Joan – on the mission of her life

A family history of breast cancer – an auntie and older sister – made Joan Kerr extra vigilant about her own health. She was ‘pretty onto it with annual checks’, alternating free mammograms through BreastScreen Aotearoa with private screening at Auckland’s Mercy Breast Clinic. It was after a visit to Mercy, at age 61, that Joan was diagnosed with breast cancer.

‘I had my mammogram and they called me back. I was suspicious and upset because this hadn’t happened before. A woman in the waiting room said to me, ‘You’re lucky to be in a world class clinic’ – sometimes comments can be less than reassuring!’

Joan had an ultrasound and a biopsy with her husband beside her, and the surgeon advised she be available on the Friday evening because he would want to speak with her.

‘You can imagine what we took from that,’ said Joan. ‘You can just tell – it’s how they look at you!’

It was a nervous and agonising wait that did not end on the Friday but continued over the long Queen’s Birthday weekend holiday. Lost test results meant it was Tuesday before Joan met with the surgeon to receive the news of her breast cancer.

She was given the choice of a lumpectomy with radiation or a mastectomy with the option of reconstruction. Joan chose a mastectomy without reconstruction and had the surgery on her 61st birthday. When she came round from the anaesthetic her husband was there with a special gift – a pair of diamond earrings. There were so many flowers that her eyes puffed up and the blooms were taken out at night and lined up in the corridor outside her room.

After surgery Joan participated in a drug trial comparing Tamoxifen and Letrozole (Femara). Her follow up examinations were thorough and regular. Three years later Joan was diagnosed at Mercy with another primary in the other breast. This second diagnosis came just 11 months after an ‘all clear’ routine check and the tumour was HER2 positive.

‘I was in the women’s waiting room. We were all sitting around in our gowns and there was a man in there with us. He was an interpreter for a French woman and he said, ‘You know, at home everyone goes around topless! We don’t care – we don’t take any notice.’ I was waiting for an ultrasound and here’s this man in the women’s waiting room wanting to be chatty and I was in no mood for that. I said to him, ‘Well the climate is a lot different here than it is there.’

Oncologist Vernon Harvey did not offer Herceptin (it was funded for women with secondary breast cancer at that time) and after a second mastectomy Joan began a course of Arimidex with no chemotherapy or radiation.

‘My husband gave me a gold ring with a ruby that time,’ said Joan.
… and another beautiful ring a year later to celebrate an ‘all clear.’ Joan retired from teaching and Christmas 2008 saw the family gathering together at Orewa Beach for a wonderful reunion and celebration.

However, that September a sore shoulder and strangely heavy arm concerned her. The GP ordered an x-ray. It was inconclusive and pain medication reduced the discomfort. The following month, while putting on a necklace, her hand strayed across a ping pong ball sized lump in her neck. Joan saw her GP as soon as possible and was referred to Dr. Marli Gregory of Breast Associates.

‘My son was getting married in Palmerston North that week and I was all ready to go. Marli could have seen me but I wanted to attend the wedding so I saw her after we returned. She took a biopsy and told me at the time she didn’t think it would be good news. She called the following day, asking me to come in. I was there at 4pm and she said it was a recurrence. ‘Are you saying it has metastasized?’ I asked and she said yes. She was reasonably sure at that stage it was HER2 positive. And do you know what I did then? I laid my hand on hers and I said, ‘What a terrible job you have.’

Early December was taken up with medical appointments, scans and family arriving for the summer holiday and on 18 December Joan began a course of 25 radiation treatments supervised by Dr. ‘Benji’ Benjamin. The family - three children and five grandchildren - enjoyed the time at Orewa, all taking turns to drive Joan in for her daily treatments.

The radiation reduced the size of the tumour in Joan’s neck but it had not disappeared as hoped. A CT scan revealed the neck node tumour was growing and spots on the lungs were increasing in size. At the time of our interview, Joan was scheduled for a bone scan as she had been experiencing severe pain in her chest, making it hard to lie down. The bone scan would also help identify a suspicious spot on her lower thoracic spine.

‘I always prepare for my meetings with the doctors,’ said Joan. ‘I have a list of questions but find that I come away with even more to be answered. My husband and I have done so much reading and think Dr Susan Love’s Breast Book is one of the best resources for information. I’ve also been reading studies about support groups. They suggest that women who go to groups enjoy a better quality of life and may have improved survival rates as a result. It is so valuable because you hear about the experiences of other women. For example, a member of Breast Cancer Support spoke with me about the pain I was experiencing – she said a friend of hers had pain too, and it lessened after radiation treatment. That was valuable information.’

Joan recently joined Sweet Louise and attended a members’ meeting. ‘I was pleased to be there, sitting in the company of other women with secondaries who know how it is. I was also surprised because you wouldn’t even know they were ill!’

The search for information is never ending. ‘There’s a process that nurses and doctors know about when you’re dying, but we don’t know all about it yet so it’s a learning experience. You’re thinking that this is your life and yet you’re flummoxed when it comes to information. I said to myself early on that I’ve had a good life. I’ve enjoyed it all and have done a lot of good things. I’ve taught a lot of kids, have raised a wonderful family and I decided, well, you just have to make the most of what you’ve got and the time you have, however long that may be. I asked Vernon what my prognosis was and whilst he wouldn’t really say, I think he was telling me it is way too soon for that but the cancer has moved so quickly.’ Joan is now taking Aromasin.

Joan has made it her mission to live as well as she can for as long as she can. ‘I didn’t know I had this strength and I don’t know where it comes from. I worry more about the people affected by my illness – my husband and kids, the grandchildren. This was all so unexpected. I made it through two primary cancers and thought I was all clear – now this, out of the blue. I have wondered ‘why me?’ but then I can’t see the point in dwelling on it. It happened and that’s that. My granddaughter says ‘You’ve gotten over two primaries and you’ll get over this.’ ‘

Friends have rallied around to help out. ‘A friend brought in a casserole one day and said she would do this for me every Wednesday! Another said to call any time and have a rant and rave! I’ve been involved with Breast Cancer Support for 6 years and they’re wonderful too. I have a loving husband – he hasn’t come up with any more diamonds yet! My daughter rings me every day from America. I am so blessed but yet I do get upset because they are upset. This secondary has just caught us all by surprise. ’

Joan and her husband spent much of last year renovating their lovely home and were hoping to travel overseas this year – plans put on hold for now. ‘I’m going to do whatever I want, even though I have so much of what I want already. But I have to say I am so looking forward to a bit of an adventure – I’ve booked a helicopter ride over Auckland! A friend told me it would be really lovely so I’ve decided to do it!’