The Mum Network

The extraordinary story of Sue, who chose to have a double mastectomy.


A few weeks ago I bumped into a colleague I hadn’t seen for a while. Commonly known as Jonesy, Ian Jones is one of the good guys in business. Jonesy heads up Sales and Client Relationships for one of Australia’s largest Marketing and Communications Companies so his life is not without pressure but he is also one of the most hard working, honest and one of the funniest and most personable people I know.

Jonesy is also one of those guys that genuinely and very seriously loves his wife more than anything. She comes up in almost every conversation when we catch up. Jonesy and his wife Sue live for travel and clearly live for each other. Whilst I don’t know his wife Sue, I feel like I do as these two are genuinely the very best of friends.  What Jonesy shared with me shocked me and inspired me all at the same time.

With a tear in his eye and a flicker of emotion (rare for Jonesy, even on a bad day) he told me his wife, Sue, whom he’s been together with for 21 years and married for 17 years, was about to go into surgery for a voluntary double mastectomy due to a family history of breast cancer which had tragically resulted in many of her family members losing their lives far too early. Rather than waiting for dreaded cancer to find her, Sue took the most drastic of decisions on order to save her own life.

Sue only underwent surgery a few weeks ago and Jonesy has been documenting her progress ever since so that friends and family can be comforted that she’s making good progress.

I asked both Jonesy and Sue to answer a few questions about this extraordinary journey.

What is your family history of breast cancer?
My mother’s side of the family has a history of breast and ovarian cancer. My mother (diagnosed aged 49, died aged 54) and aunt (diagnosed aged 31, died aged 35) died from breast cancer and my cousin (diagnosed aged 31, died aged 33) from ovarian cancer. My family is quite small so this was regarded as a significant number of blood relatives to be affected by breast and ovarian cancer who had been diagnosed under the age of 50.

What was the chance that you would get breast cancer? Was it a foregone conclusion?    
Given my family history my GP referred me to the Hereditary Cancer Clinic at The Prince of Wales Hospital NSW. We visited them in 2001 and then again to 2010 to see if any of the new gene discoveries/scientific advancements/studies could help me more accurately assess my risk level, any recommendations for different screening, medication, surgery etc.

The Clinic said I could do the BRCA tests (like any women can) but if they came back negative it would mean that there is highly likely a mutant gene specific to my family.  To identify this gene a person who has had cancer but survived is needed, of which there is no one in my family.  Ian and I agreed doing the BRCA test wasn’t useful for me because if it came back negative my situation hadn’t changed – my family risk still existed. The Clinic then using a sophisticated computer system – including studies, my history etc. predicted that I had a 25% chance of developing breast cancer and a 9% chance of developing ovarian cancer.

The Hereditary Cancer Clinic provides a diagnostic service for individuals at risk of hereditary cancer and tumour conditions. Risk assessment, screening and management advice are provided to the client and their referring doctor. Genetic counselling is an integral part of this service. Individuals considering preventative surgery for cancer related to a cancer genetic condition can seek advice at the Hereditary Cancer Clinic. (summary from website http://www.canrefer.org.au/service/323)

Were you advised by doctors to have a double mastectomy or was this your decision entirely?
Both the Hereditary Cancer Clinic and my Breast Surgeon ( I had been seeing a Breast Surgeon each year since 2001 as part of my annual screening regime) gave me all the information on my two options – continue annual screening or undergo preventative surgery. The decision was entirely mine.

I could have continued with the screening with the purpose being to find any abnormalities early and therefore having the best chance of a successful outcome. However the screening would not prevent me from getting breast cancer.  The only way to prevent getting breast cancer was to have all my breast tissue removed, a bilateral mastectomy.

Was there a catalyst or major contributing factor to your decision or was the family history enough to make the decision for you?
When my risk was assessed at 25% that made a big difference.  Previous to that it was high risk but that wasn’t quantified. Then a few things came together that pushed me to make a decision.

In 2011 several lumps where found during my annual screening and I had to have core biopsies. The lumps were benign and very small so proved my screening regime was working.  However it made me realize that the screening was just going to find something early.  I would still have cancer which would mean surgery and chemotherapy/radiotherapy. Then if I was successful in treating the cancer I would still have the worry of it returning (as it had for all my family members – as aggressive secondary cancer) and need to continue with screening each year. It all suddenly seemed that the control I wanted was not going to be achieved by annual screening.

I turned 40 in 2011 and Ian and I who were always fairly certain we were not going to have children made a firm decision that our Jones’ family was going to be the two of us and a sausage dog.  The advice given to me was complete our family and then undertake the surgery.  Some very high risk women/BRCA positive decide to have the surgery before having a family.

How long did you think about having the surgery before making the decision? Did you discuss it with Ian? How was your emotional state when you made the final decision?
Through my regular screening I was always aware surgery was an option. In fact we first had an appointment with the Plastic Surgeon in 2004 to explore the surgery options. I had always thought I would probably go ahead with it after completing our family/deciding not to have a family. Making the actual decision to go ahead was quite difficult. It is hard to put yourself through something to avoid something that has a 25% chance of happening.  Ian was unbelievably patient, logical and supportive.  It was my decision to make and I had to work out if I could live with the 25% risk and how would I feel if I had the opportunity to remove this risk but had not and then got cancer. The answer for me was that I couldn’t.

I found making the decision quite emotional. There were lots of teary conversations with Ian.  It bought up memories of my Mother and what she went through and I’ve never had major surgery (or a baby) so I was quite anxious about the actual surgery and generally the unknown of being a patient in hospital.  Even after booking (and paying) for the surgery I didn’t tell many people. We told our families and I told a couple of close girlfriends about two weeks prior.  Finishing up work meant telling a few more people and Ian having time off meant him telling a few more people.  Everyone has been amazingly supportive which I have greatly appreciated. Then Ian did Facebook updates which helped tell everyone and record our journey.

What was involved in the lead up to the surgery and the surgery itself? How long to you have to take off work and how long does it take to recover?   
Once the surgery was booked in I committed to getting as healthy and fit as possible. I wanted to go into the surgery feeling I had done everything to prepare my body. I had a mammogram and breast ultrasound at the request of my Breast Surgeon. The rest was filling out forms and making payments.  We had met with the Plastic Surgeon in January before booking the surgery in and I could have had further appointments if I had more questions. The night before the surgery he marked me up – drawings and instructions (with a permanent whiteboard marker on my chest). At this appointment I asked all my remaining questions which were based around what happened on the day of surgery, recovery, help at home etc.

I had a nipple sparing bilateral mastectomy with expanders (under the pectoral muscle) at the first surgery. This involves a Breast Surgeon removing all the breast tissue and a Plastic Surgeon putting in the expanders.  The surgery took 4 1/2 hours. I had a drain on each side which were only removed once the Plastic Surgeon was satisfied – this was day 7 for me. I left hospital on day 8.

From about three months after this first surgery the expanders will be taken out and the implants put in. Between the first and second surgeries the expanders are filled up (to whatever size I want) and  the muscles left to stretch and settle.  The second surgery is only a night or two in hospital. The same cut under each breast is used from the first surgery.

I need to take 4-6 weeks off work after the first surgery.  During this time no lifting or carrying and as much rest as possible to help with healing. Gentle walking and physiotherapy is all the activity that is allowed. I am scheduled to meet with my Plastic Surgeon weekly – for check ups, fills and to get advice on when I can return to exercise, work, lifting etc. The second surgery is about a week off work. Once again rest and a gradual return to exercise.

After surgery, can you still get breast cancer or are the chances completely diminished?
My chance of getting breast cancer is now extremely low. It is still possible if the Breast Surgeon missed removing any tissue and then this tissue develops cancer. Some women choose to have their nipples removed as the nipple can contain breast tissue. I sought my Breast Surgeons advice on this issue as keeping my nipples gave me the best cosmetic outcome (scar/cut under the breast) and avoided a third surgery of having nipples created and tattooing done to colour the newly created nipples.  Obviously some women choose not to replace their nipples but that wasn’t an option for me as I wanted fully reconstructed breasts. My Breast Surgeon advised he inverted the nipple and scraped all the tissue off and that the most recent studies showed if this was done thoroughly the risk of any breast tissue being left behind was extremely low.

I had a mammogram and breast ultrasound a few weeks before the surgery and these came back clear.  The Breast Surgeon also sent samples of the tissue removed during the mastectomy for testing and this tissue came back clear.

Now that you’ve had the surgery how do you feel?
I feel relief. I will no longer read articles and see news stories about women dying from breast cancer and think that is probably going to be me.
I wont have to go through the pain and suffering and early death my Mother did and my husband and family will be spared this trauma and grief.
I feel like I have taken control of my situation and that I have removed a burden of constant, back of the mind type, worry.

Will you have implants put in post-surgery? Does it matter to you?
I will be having implants. There are several masectomy options and I chose one that involved reconstruction and that would give me a good cosmetic outcome. My first priority was my health but I also wanted to still have breasts and breasts that looked as good as possible.

Are support groups available post surgery? Would you use them?
I can’t remember how I found the Australian Pink Hope website, http://www.pinkhope.org.au. I found this website helpful with lots of good practical information and women put up their stories and experiences. I also found some blogs on the web that women had written detailing their experiences from diagnosis to final results. I couldn’t find any Australian ones though only American and as their health care system is different to ours their experiences and final surgical results varied.

I found one fabulous blog which really helped me, Www.previve.com written by Claudia Gilmore. I particularly found helpful the documentary web series and also Claudia had the same procedure as me. Claudia is quite a bit younger than me but I felt I related to her as like me she hadn’t had cancer (although she was BRCA positive), was in a committed relationship, didn’t have children, was fit and exercise was important to her, had a really positive attitude and great family support.  It was through her webiste I first came across the term ‘previve’ and ‘previvor’- I’m not going to survive cancer, I going to previve it by seeing that its probably going to come my way and taking action to avoid having to meet it.  Making me a previvor.

Pinkhope is an Australian community for women at high risk of breast and ovarian cancer. Provides a platform for connecting, gaining information and support.

Ian, were you involved in Sue’s decision, how did you support her in making this decision?
I was, but most importantly I really had to let Sue know that there wasn’t a wrong answer.  I think with any difficult decision the natural thing is to look to other people to make it for you.  I decided the best thing for for me to do was to help Sue rationalize the pros and cons but inevitably it had to be her call.  Once she had made up her mind, I felt my role was to provide unconditional support.  The decision probably took the best part of a few years to make.

Ian, whilst you always have a good sense of humor and approach everything with a grin ,you must have been worried leading up to the surgery?
Not really.  The specialists were brilliant at clearly articulating the process.  I was more apprehensive in the lead up to the decision and then Sue telling the families.  Once that was done the surgery felt more of a process to go through.  Sue looked quite relaxed in the lead up. Seeing Sue get wheeled out after surgery wasn’t great but she soon returned to her demanding self.

Ian, you’ve been fairly open and honest about Sue’s surgery by taking photographs of her at various stages of the process and sharing them with friends and family, is this your way of coping or sharing her story?
A little bit.  In the lead up, excluding the family, we made the conscious decision to keep things very private. We are a reasonably private couple anyway but it felt like the best way of managing the apprehension.  Sue and I decided to capture the main moments and share them after surgery as a way of communicating to our friends and extended family what had occurred.  It just took the pressure off Sue and I in many ways having to talk about it over and over.  The positive was that it allowed sue to read the well wishes and keep in touch with close friends as she was recovering which was nice.  People have been incredibly supportive.

Sue & Ian, what would be your advice to other women and couples who are faced with a similar decision?
Research, research and research.  And get to know your surgeon. The decision was made a lot easier by the confidence we had in the doctors.  Also, there is no wrong decision.  It is an incredibly personal journey and irrespective of what decision you make, you need to be comfortable with it.  The thing that churned Sue up was the “unknown” and a degree of inevitably about the likelihood of succumbing to breast cancer.  No one should have to live with that if they have the choice and courage to do something about it.   I am really proud of her.  Unless you are in her shoes it’s hard to comprehend what a difficult decision it must have been.


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