Health Minister Andrew Little has asked Ministry of Health staff to ensure all district health boards are presenting breast cancer patients with all post-mastectomy options, if they’re fit for the different surgeries.
It comes after 1 NEWS told Little of the situation where most DHBs are not offering a secondary mastectomy to women as an equal option to breast reconstruction.
“That is the option available to women in some parts of the country and that therefore should be available to all women in the country. We've got to make sure that those choices are being presented to women so that they can make them and that the surgeons that are called upon to do that work are doing it,” Little said.
He said in this day and age, with the developments in health care that have happened, the issue was “deeply worrying”.
“In the end, women have got to be able to make the decision about their bodies once they’ve had this sort of treatment,” he said.
Little said officials told him this week that training currently being given to surgeons dealing with post-mastectomy has led to a standard emerging where women that choose to “go flat” can do so and it’s not a decision of the patient’s surgeon.
“It’s an issue I’m happy to take up further with the ministry to make sure that we are getting that consistency across the country that I think everybody deserves to have in this day and age.”
Auckland, Waitematā and Bay of Plenty DHBs put the secondary mastectomy option on the table for patients for symmetry reasons, if the patient is fit for the surgery, according to statements from the organisations.
The majority of DHBs offer it only on a case-by-case basis, with varying criteria that include a high risk of further breast cancer, patient comfort or if it’s psychologically appropriate.
Most suggest the procedure is done at a later date.
Breast surgeon Dr Ineke Meredith said it’s important patients can access the surgery that’s right for them if they’re fit for the procedure, and if they want further surgery following a breast cancer mastectomy.
She said both reconstruction and mastectomy carry patient risk but there’s a huge difference in risk profile as a mastectomy is a straightforward procedure and takes one to two hours where as a double reconstruction could take up to 12 hours and involves follow-up procedures and a recovery time of six to eight weeks.
Meredith said for those reasons a reconstruction is significantly more costly.
Breast cancer survivor Sue Garmonsway said she is awaiting the procedure privately after being told a secondary mastectomy was not an option when she requested it at a follow-up appointment a year after her initial mastectomy.
“The assumption was that I was struggling with body image issues and a referral was made for some psychological counselling, which I found surprising,” she said.
“I’m conscious that I’m paying for it myself through insurance money I received when I was diagnosed with cancer and I’m conscious not everyone is in that position, but for me it’s a closure. It’s an end of a situation for me mentally and I’m looking forward to it.”
Garmonsway said she was told of the different reconstruction options available in the same appointment she was told about her cancer diagnosis, but a secondary mastectomy was not mentioned.
“My feeling is that there is a real drive towards offering women reconstruction because that’s realistically what the majority of women would want, but there’s no conversation about women who prefer to have both of their breasts removed and that needs to also be part of the conversation. I think that the medical profession needs to understand that for some women that’s an option we'd like to consider,” she said.
Garmonsway said she “really struggles” with the reason she was told she could not have the surgery being that healthy breast tissue is not removed.
“Women can have breast augmentation or reduction, they can have breast lifts on their healthy breasts as a result of the reconstruction process so to my mind that is also touching healthy breast tissue,” she said.
Garmonsway said she’s conscious it’s a really personal decision but for her the surgery will allow her to “move on and live life”.
She said factors in her decision include removing concern and anxiety about further cancer, particularly as her first diagnosis came when she was asymptomatic, and also achieving symmetry.
“It’s about looking in the mirror and seeing two sides that look the same for me. At the moment I don’t have that and it’s also quite a practical outcome for me.
"I lead a fairly active life and I find that having my breast creates discomfort; I need to wear a bra even though it’s a scar. I have to wear a prosthesis and it’s heavy and uncool at times.”
In a statement, Waikato District Health Board said it was not common for all options to be given equal weighting as not all options may be appropriate for the patient.
"Prophylactic mastectomy may well be offered in a context of persisting high risk (e.g. BRCA positive, strong family history)… Adding a prophylactic mastectomy also substantially increases the risk for a patient…" it said.
Belinda Tran Lawrence, creator of the Aotearoa NZ Breast Cancer Community Facebook page, said after sharing her double mastectomy experience with others, she heard that some women were being denied the surgery.
“I did very definitely have to say, ‘Right, no, no, I'm definitely not having reconstruction, this is definitely what I want,'” she told 1 NEWS about her experience.
“I don't believe across the board that women are getting all the information, that the options are being laid out for them in an unemotional, unbiased, prejudiced fashion that: ‘This is what you can choose, this is what's available and also this is the pros and cons of various roots and also this is what other women have experienced.’”
Tran-Lawrence said the situation is “variable” and “not fair".
“Why are we saying that women have to live with that discomfort for the rest of their lives when if we can fund a reconstruction, why can't we fund a mastectomy? It would cost less,” she said.
Tran-Lawrence is calling for remaining flat to be seen as a “viable option that is a healthy, happy outcome for women” that choose this surgery after breast cancer treatment.
A spokesperson for the Breast Cancer Foundation said the charitable trust thinks women should be able to have thorough conversations with their surgeon about removing their healthy breast and have the option to have the surgery.
"Women should be listened to and supported on their decisions. This should be an available option to all women through DHBs and not dependent on where they live," she said in a statement.
The trust stated additional surgery has added patient risk and that it’s important women have the opportunity to access accurate information about the procedure from their surgeon.
"A common fear patients have is of the cancer 'returning on the other side' but the risk of this, or even a new cancer developing, is very rare (unless they have significant family history) and so wouldn’t be a sound reason to justify the surgery," the spokesperson stated.