Jo’s hope for future generations – we get smarter, more effective and more successful in breast cancer diagnosis and treatment

Jo was diagnosed with Grade 2, Stage 2 hormone receptor-positive, and HER2 positive invasive ductal breast cancer. She shares her thoughts about her breast cancer journey and being part of the POSNOC  trial;

How old were you when you were first diagnosed with breast cancer and what went through your mind? 

I was diagnosed just one week before my 54th birthday. My mum was diagnosed with her breast cancer on my 40th birthday and that always upset her, so I was firstly sad that I was going to have to tell her I now had cancer too, right around my birthday again. Timing wise I was not impressed at all.

Other than that, I was not surprised strangely; it all was a bit surreal. I have had some pretty crazy things happen in my life so I on one level just thought here we go, what’s this ride going to be like.

Do you have a family history of breast cancer?

It turns out my family has had four generations we know for certain that have had breast cancer on both sides of my mum’s family. Weirdly all of the instances of cancer in the women in my family has been different, so no genetic link specifically. 

But given my uncle and father both died of bowel cancer and my remaining uncle is a bowel cancer survivor I was ok with getting breast cancer, as that to my way of thinking was an easier cancer to deal with. Mammograms had always been easier to do, and way less drama than colonoscopies, was my logic. 

Why did you participate in a clinical trial?

I have four nieces, and they have had both their aunts and grandmothers and great grandmothers on both sides of their family get breast cancer. How could I not participate in something that could help them?

I also have been lucky to have had positive experiences with other medical events in my life where I both contributed to and benefited from research by my medical team at that time. It just made sense to say yes.

Why is breast cancer research so important to you?

When you get cancer you suddenly discover so many women around you have been where you are about to go. Sadly you also find yourself discovering more are following. My treatment and experience was all the more successful because of the research done by and assisted by other women in my situation. So every bit you can do helps. Collectively it can be a pretty powerful thing. I like that being part of something bigger aspect.

What was it like being on the trial?

Comforting. Knowing I would get that extra bit of attention. 

Satisfying. Knowing my experience and data is adding to a body of research that will ultimately benefit others.

Reassuring. By participating in the POSNOC trial gets the numbers it needs to make a difference quicker. 

What is your hope for future generations?

That we get smarter, more effective and more successful in all aspects of breast cancer identification and treatment. 

Good news for postmenopausal women with a high risk of breast cancer

As an oncology nurse Lorrie Kurth has seen the effects of breast cancer first-hand.

Lorrie has a high risk of breast cancer. She has lost her grandmother, her mother and a cousin to the disease, another cousin has had breast cancer and so has an aunt.

Ten years ago, Lorrie joined the anastrozole medical prevention trial to help researchers find a way to prevent the disease.

“It’s was such a good opportunity to help other generations of my family and other families”.

At the time of enrolling in the trial, Lorrie knew that it could take 10 years for the trial to determine whether the drug would help prevent breast cancer.

Ten years have now passed and the long-term results of using anastrozole for breast cancer prevention were published recently and its good news for wāhine like Lorrie that are at high risk of breast cancer and ductal carcinoma in situ (DCIS).

The results show that anastrozole maintains a preventative effect for postmenopausal women at high risk of breast cancer for at least 12 years.

Anastrozole inhibits the production of oestrogen in postmenopausal women and has been used for several years now in the treatment of postmenopausal women with oestrogen receptor-positive breast cancer.

The use of anastrozole, which is part of a class of drugs called aromatase inhibitors, is more effective than tamoxifen in women who have already had breast cancer.

This research shows that anastrozole is a safe drug in the long-term and provides women with greater options when it comes to managing their risk. Other options include regular breast screening, preventative surgery and a healthy lifestyle.  

Lorrie has not been diagnosed with breast cancer, she is in good health and has never dwelled on her higher chances of getting the disease. “It’s not something I spend a lot of time thinking about. I work on the theory that if it happens, I’ll deal with it then. “I have had excellent surveillance throughout the trial, particularly with my family history, and this has been very comforting.”

Lorrie is philosophical about cancer and death because of her years of working as an oncology nurse. “I’ve learned from looking after people with cancer that you have to live every day and make the most of that day.”

Research continues to answer questions about sentinel lymph node biopsy

Whether or not breast cancer has spread to the axillary or armpit lymph nodes, remains an important indicator of outcome for women/wāhine with breast cancer, and may help predict the need for further treatment (e.g. chemotherapy or radiotherapy). Historically axillary node status has been determined by removal of most of the nodes (axillary clearance).  This operation may lead to arm swelling (lymphoedema), pain, some abnormal skin sensation or shoulder stiffness.

Waikato Hospital surgeons and researchers introduced “sentinel node biopsy” to breast cancer surgery in 2002. Sentinel node biopsy involves the removal of only a small number of lymph nodes most closely related to the breast cancer.

The Waikato is now a centre for a fourth international sentinel node biopsy trial. It is important we carefully evaluate the benefits and risks of introducing this lesser surgery to the axilla for women/wāhine with different types of breast cancer. Helen is a participant on the “Sentinel Node biopsy versus Axillary Clearance Part 2 (SNAC 2) trial, she recently shared with us her journey.

As the daughter of a pharmacist and a nurse, being an occupational therapist myself and married to a medical man, particpating in a clinical trial seemed sensible

“It has been difficult to remember many details about this story as it began 10 years ago, and my mind has proven to have the ability to forget the actual pain and discomfort.

I had had a history of cysts over the years so when a routine mammogram indicated I should have an ultrasound; I assumed more cysts. I was surprised to be told I had breast cancer and disbelief was my initial reaction as I felt remarkably fit and healthy and well! My next reaction was “Tell me the plan to get rid of it”. The label for my breast cancer was multifocal grade 2 invasive lobular carcinoma and the advised plan was to have a total mastectomy with reconstruction. ‘In for a dime, in for a dollar’ – get it all over and done with in one hit was my reasoning.

With this plan timetabled, my surgeon, Ian Campbell, asked if I would participate in a clinical trial. As the daughter of a pharmacist and a nurse, being an occupational therapist myself and married to a medical man, this seemed sensible. I reasoned that it may help with future treatments and improve life expectancy for others. It was SNAC 2 trial, Sentinel Node biopsy versus Axillary Clearance.

Needless to say, I ascertained there was no additional risk to myself, only a couple of extra appointments and another ultrasound with dye injected to trace which lymph nodes were feeding / draining the three tumours.

My surgery proceeded as expected but then came the news that one lymph node had cancer cells and with that news, another date with the surgeon was organised. Following this I was discharged with a drain in place which the district nurse encouraged me to keep until there was no more fluid to drain. I have been lucky enough to escape any issue with lymphoedema.

For some weird reason I had thought that the surgeries would suffice to beat this cancer but no … chemotherapy, followed by radiation, gave me better survival stats so again – ‘in for a dime in for a dollar’. I took all the drugs to combat the side effects of chemo, wore my wig and managed.  The radiation was a chore and I remember feeling weary towards the end. Now, 10 years later, the whole experience is a bit of a blur, but I know it irrevocably changed my life and furnished me with the resilience and understanding to dual with further life events.

I know that I would not have come to this place without the comfort and kindness of friends and family.”

Hilary’s story of EXPERT trial participation

“Having a cancer diagnosis makes you realise there are many different kinds of cancer and that the medical profession is constantly trying to discover how best to deal with the disease”.

Last year I had breast conserving surgery for a stage two cancer, picked up by mammogram. Among all the emotions you go through with a cancer diagnosis, there was a small sense of relief that mine had been found at an early stage by having regular mammograms, as it would have been too small to be detected otherwise. 

I was asked at Waikato Hospital if I’d be interested in participating in the EXPERT trial if I was a suitable candidate – and this brought another little glimmer of light  that in some way I could help the search for better cancer treatments.

Before my surgery, I’d been told that the follow-up treatment would be several weeks of radio therapy plus hormone therapy.

This initiated late night web searches about potential side effects and the effectiveness of radio therapy for breast cancer. I found out more than I really wanted to know about radiotherapy, but also learned that there is some doubt as to whether it is necessary for all types of breast cancer and that the only way of finding out was to carry out clinical trials like EXPERT.

Fifty years ago the only treatment for breast cancer was a radical mastectomy followed by cobalt radiotherapy and it’s only through clinical trials that breast conserving surgery has become the norm for low risk cancers like mine.

Knowing more about the treatment options and having information about potential side effects and what type of cancer I had, helped me feel more comfortable about making a decision for my own treatment.

As we live on the Coromandel Peninsula, I travel three hours each way to attend appointments, but I feel it’s important to be involved in research which will help the treatment of other women, and also so that I can benefit from the long term follow-up that the study provides.

Cancer through the eyes of a husband, my wife’s breast cancer journey

It all started with a lump in the right breast that was noticeably growing daily. A biopsy revealed that the tumour was cancerous and positive to three receptors and it needed to be removed asap. But first we needed chemo to shrink the tumour as it was now 75 x 50mm. 

The first chemo almost didn’t happen as my wife’s blood count was low. This is when we realised this was serious. We debated with our oncologist and eventually we continued with the first chemo. Lucky for us the blood count improved and we were able continue with the full treatment.

We had just dodged our first bullet. From now on we needed a plan.  The anxiety we had just experienced was horrific. We needed to change our mind set if we had any chance of beating this. We needed to manage what we could control and not worry about what we had no control over.

Don’t worry about blood test, bone scan or CT scan results.  Once we had a result, good or bad, the sooner we could plan the next step. Knowing is better than not knowing. The result wasn’t the issue, anxiety and managing stress were, so how do you mitigate these feelings.

Understand and be prepared to ask the medical team any questions, as you need to have confidence in them. If it is not working or you are unhappy, change your doctor. They are there to help and will not be offended. We were very open with everyone. This way we never had to confront someone who didn’t know where we were at.

We set goals. At the time we owned a retail shop. We sold the shop. My wife had always wanted to be a qualified primary school teacher. We enrolled at university. This also gave her something to focus on and stopped the mind wandering. Chemo is hard, but this was the drive to get out of bed and to keep going. After three years she qualified and was given her own class.

Well before we started losing the battle with breast cancer my wife wrote future birthday cards for her daughter till she was 21. This was hard, but so rewarding and another box ticked. I never asked how are you feeling? I saw my role was to support and create a positive environment for everyone, as this would be the best way to beat this disease.  

A trial participants journey

My story started with a routine mammogram in 2011 that picked up cancer tumours in my right breast.  The tumours were removed as were 35 lymph nodes from my right armpit. I came through the chemotherapy and radiotherapy treatment reasonably unscathed and felt like I had dodged a bullet.

It wasn’t until 5 ½ years later that I developed lymphoedema. My right arm had swelled up five times the size of my left arm.  The main treatment available to me is to wear a compression sleeve 24 hours a day for the rest of my life.  Wearing the sleeve over the hot summer has been uncomfortable to say the least.  Random people ask me what happened to my arm so I tell them I was bitten by a snake.  That usually shuts them up. Last winter my long sleeved tops would fit my left arm but not the right which caused a wardrobe nightmare.

I heard about the lymph node grafting trial and was eager to be part of it.  I was accepted as a participant and had the minor surgical procedure.  18 months later the swelling in my arm has reduced by two thirds and I now fit my clothes again.  If the outcome for me is that I can stop wearing the compression sleeve then I will be forever grateful for this opportunity.

I would highly recommend the lymph node grafting trial to other women with lymphedema, as it has given me hope for a normal future.