The Royal Australasian College of Surgeons has said surgeons can do better when it comes to breast cancer patients accessing a bilateral mastectomy.
“I think obviously it needs to be discussed wider because it's been brought up now and I think it's something we've probably… may have been neglecting and it should be readily discussed with all our patients and options discussed and… listen to what they say,” Royal Australasian College of Surgeons New Zealand chair Dr Philippa Mercer said.
“When you’re just purely doing a mastectomy on that side, then it is removing healthy tissue but it's a decision to be made between the breast nurse, the surgeon and the woman involved,” Mercer said.
For women that have had a cancerous breast removed, the procedure is another way to achieve symmetry by removing the other breast, instead of reconstruction.
It’s commonly referred to as ‘going flat.’
“If a person requests the contralateral mastectomy then a discussion would include the safety, is a person fit enough for surgery, the risks of surgery because there can be general risks, there can be the wound risk, infection, bleeding and there can be chronic pain after the wound,” Mercer said.
“But also the benefits, for example, a lady whose got a mastectomy on one side and the other breast is heavy and uncomfortable and they find their prosthesis uncomfortable and that’s a valid reason for them to discuss it.
“There are risks with and complications with reconstruction - sometimes the results are superb, sometimes the results can be absolutely terrible and major complications and it's all discussed but that is obviously on the cancer side, so there’s been no choice about that on needing an operation, whether it's reconstruction or not, but we're talking about the other side which is a normal breast and it is a greater balance of risk and gains.”
Sarah Bartlett had cancer in her left breast when she received a bilateral mastectomy in 2017 at Canterbury District Health Board.
“I went in with a list, I knew what I wanted and I had my ideas and my facts and I said to him straight up, I would like both off,” she said about her first consultation with her surgeon.
While DHBs always offer reconstruction choices if patients are fit for surgery, the same weight isn’t given to a secondary mastectomy.
“I was very respectful of my surgeon and listened to what he said and I understood what he said and I felt that we came to quite a good understanding in that he supported my reasons.”
Bartlett said she had seen her mother’s frustration with having one breast after having a mastectomy for breast cancer, before she passed away from the disease.
“Difficult to get clothes to fit, get underwear to fit, dealing with prosthesis and all that kind of stuff.”
Bartlett said after hearing other stories of women not being able to access a bilateral mastectomy, she thinks it’s “a bit of a luck of the draw who your surgeon is and their approach to treatment”.
“You're at a point where you're questioning your wellbeing, if you are actually going to survive this, there's a huge journey in front of you and I think for a lot of women, they just don't have the fight in them to go into a surgeon’s office and to face someone with all that knowledge, it's almost like a power position really, and to be able to say, “hey, this is what I want,” she said.
“Luckily I am quite stubborn and assertive and that wasn’t a problem for me.”
Bartlett said as a cancer patient, your mental health has already been affected and mental wellness is a significant factor in the decision to ‘go flat.’
“Especially in the last few years, we've had such a big push on mental health and so this feels quite archaic that they’re not willing to go and listen to patients… put the pens down, push the stats away, you know, close the note books and just listen,” she said.
It's for these reasons that Bartlett thinks patients would benefit from having an advocate available to attend consultations with them.
“To help them voice and to help them prepare for meetings as well and to know what they want to say and how to say it,” she said.
Joanne Mclay received a mastectomy at Canterbury District Health Board in March 2020 as part of her breast cancer treatment.
Sue Garmonsway asked her surgeon if she could have a secondary mastectomy after having her right breast removed.
Mclay said she told her surgeon at her first meeting after hearing her diagnosis that she wanted both breasts removed, and at a check-up appointment after the mastectomy.
“Only to be told that they don’t remove a healthy breast and that most women prefer to keep one but I'm not most women, I'm me,” she said.
“I have to pad myself up and it’s lopsided all the time. It’s just wrong. I should be able to feel comfortable in my own body.”
Mclay said she cannot afford to privately access the procedure.
“People can go and get boobs put in any time they like but we can’t get one removed for our health?”
In a statement, Christchurch Hospital Surgical Breast Group chair Malcolm Ward said the DHB does not comment on individual patient cases.
Ward stated the procedure is available for patients “who are experiencing significant physical or mental morbidity following mastectomy”.
He said this would involve a detailed consultation process between the surgeon and patient, covering all available treatment options.
“At this stage there are no plans to amend our approach to offering secondary mastectomy, however any new national guidance would be considered,” he stated.
Health Minister Andrew Little told 1 NEWS last week he was going to take the issue up with the Ministry of Health “to make sure that we are getting that consistency across the country that I think everybody deserves in this day and age”.
A breast reconstruction expert group originally formed in 2019 but put on hold because of the prioritised response to Covid-19 is now in the early stages of working on technical guidelines for clinicians and district health boards, the Ministry of Health said in a statement.
“The guidelines will acknowledge non-cancerous breast mastectomy as a pathway for some patients, although there is an expectation that each case will be managed on a case-by-case basis, in consultation between patient and clinician.”
But the ministry previously stated the draft guidelines will only cover rebuilding the breast, not the removal of breast tissue.
The ministry stated the draft guidelines will go out for consultation later this year.
Since 1 NEWS highlighted breast cancer survivors not being given equal access to post-surgery options, women around the country have shared stories on 1 NEWS’ Facebook page about being denied the procedure themselves, or of it happening to family members or friends.
A common theme in what's being reported to 1 NEWS is a level of subjectivity from surgeons.
Some patients were told healthy tissue won't be removed, one was told she was too young and “must want a reconstruction”, and another patient was told by her initial surgeon told she wouldn’t feel like a woman without her breasts.
Capital and Coast District Health Board apologised to the patient who was told she wouldn’t feel like a woman in a media statement this week.
“It seems her expectations were not met in this instance,” director of provider services Joy Farley said in a statement.
“This is unacceptable, and we sincerely apologise to (the patient) for her experience. The surgeon initially involved in this case was a locum and no longer works in New Zealand.’
Dr Philippa Mercer of the Royal Australasian College of Surgeons said she thinks the personality of the surgeon is having an impact.
“I believe more and more the skill set of our surgical team is that we should be…have an open mind,” she said.
“I think it’s made me more aware of it and by having this discussion across the country will make people much more aware of it and be more open to that discussion and that’s what our women want and need.”
Mercer said the College of Surgeons has been focusing on training surgeons about bias and communication skills for several years.
“That’s a leading part of our work now,” she said.
Mercer said she’s disappointed “people are upset.”
“I think that we can do better so my recommendation for the women that really want to pursue this, they need to go back to their team and have a further discussion and explain that they've thought about it, discussed it with their family or friends,” she said.
1 NEWS asked if it’s fair that the patient would have to bring the procedure up and may not even know about it.
She said the options after a single mastectomy of ongoing monitoring, secondary mastectomy and reconstruction should all be brought up by the surgeon at the first patient meeting.
Mercer agrees with colleagues around the country that it’s best to delay a bilateral mastectomy and then “if you want to discuss it bring it up again and again and I encourage that”.
“I think the issue is doing a delayed mastectomy on the other side, these women… involves theatre time, bed access in the public sector and all those are very limited and that is the issue for these ladies.”
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