Disadvantaged by our genes

Inherited Cancers Australia

Last week I attended an event at Parliament House in Canberra, advocating for preventive (prophylactic) mastectomies to be nationally classified as Category 2 surgical urgency (recommended within 90 days). Health Minister the Hon Mark Butler attended and was shocked to discover this is not standard practice, even within the same region in Melbourne. In some hospitals this surgery is being classified as Category 3 (recommended within 365 days) – similar to ingrown toenail surgery or a tonsillectomy.

Our organisation raised this issue at an event in March 2023. Nikki one of our community members shared her story of being diagnosed with breast cancer at 23 years of age while awaiting a prophylactic mastectomy. ?She has a BRCA1 gene variation, and her mother was diagnosed with breast cancer at 32.

While I fully support the recommendation, this is just a small part of the bigger picture. I am unaware of a single person who has undergone a prophylactic mastectomy in Australia in the public health system in under 90 days - the typical wait time is 18 months or longer. This categorisation won’t solve the problems of insufficient theatre time, lack of hospital beds or other factors leading to excessively long wait times. It also won’t address the issue of disproportionately longer wait times for revisions or implant replacements post-mastectomy and delayed breast reconstructions.

Information collected from our recent survey, informing our report – Breaking the Cycle – Insights from the Inherited Cancers Australia Community showed over half of respondents had waited more than 12 months for a prophylactic mastectomy. Three respondents reporting they had a cancer diagnosis while waiting, but we know there are more.

When I chose to have a risk-reducing mastectomy almost 15 years ago, it was one of the most difficult decisions I’d ever faced. Despite having a prior diagnosis of triple negative breast cancer at 29, I had to join a public waiting list. ?After a year of anxiously waiting - including a cancellation a few weeks prior to my scheduled surgery - I reluctantly opted to use the private healthcare system. I had no extended family in Australia, and I needed my mum to travel from London to stay and help me - my daughter was 2 years old at the time. I increased my credit card limit so I could access this procedure in a timely way, feeling fortunate to be in a situation to do this.

I’ll never forget my surgeon words: “You made the best decision” he stated, “Without question, you will need revisions after the initial surgery”. Revision surgery is classed as the lowest priority in the public health system. As it turns out he was right. I experienced complications from the smooth implants they had used and ultimately required two additional surgeries - all carried out at no additional cost and on my terms (because of my private health insurance).

Unfortunately, due to the issues with my initial implants, I changed to micro-textured polyurethane implants. These were manufactured by a company the TGA in Australia will no longer approve and the type that are known to cause the highest risk of BIA-ALCL - a rare breast implant induced lymphoma.

Three years ago, I decided I wanted to replace those implants. The risk of BIA-ALCL although low was still there and they were almost 10 years old. Again, I knew I would wait years in the public health system, with one surgeon suggesting I go to emergency and claim I’m in pain to try and get in quicker. While I was making my decision, I underwent an ultrasound that discovered a potential rupture in my left implant. A subsequent MRI reported it appeared intact. Fast forward only seven months and during surgery it was discovered that sure enough, the left implant was badly ruptured, meaning a prolonged hospital stay and recovery (see cover photo).

Last year one of my new implants started noticeably swelling. I spent three nights in a private hospital on IV antibiotics with the surgeon unable to identify the underlying cause - the fluid drained showed no bacterial infection. I had an ultrasound before going into hospital that once again identified a rupture however yet again an MRI confirmed it was intact. The constant anxiety is draining, and I’ve come close to removing them completely. But I’m not ready to go flat…yet, perhaps I should start saving for that surgery.

I’ve had nine surgeries to manage my cancer risk. I’ve never kept a running total of my out-of-pocket costs to manage my risk of cancer but at a rough estimate, it would be well over $35,000. All these decisions and costs are to keep me alive and well, and here for my children. But they also save our health system money by not having to treat me for cancer again. Our Breaking the Cycle report also highlighted many people in our community are spending significant amounts of money to manage their risk of cancer.

Unfortunately, my story is not unique. Many people in the inherited cancer community face similar challenges. I know of women who have been told they should just be glad they no longer have a risk of cancer when they have expressed being unhappy with their reconstruction, and some who forgo reconstruction to get the surgery quicker. I spoke to one woman who had her surgery cancelled twice, including on the day it was supposed to occur. Another woman was given 10 days' notice for her mastectomy, and she’d not met the surgeon. Other women who travel long distances from home encountering complications without family support. Sadly, the list goes on.

I am passionate about ensuring universal access to genetic testing in Australia. However, we need to ensure that people identified as at an increased risk, are able to access public health services in a timely way to manage or reduce their risk of cancer.

Categorising prophylactic surgery as Category 2 is an essential first step, but the harsh reality remains. There is still much more to be achieved for inherited cancer risk families in Australia, we should not be disadvantaged by our genes.