Increase in ‘healthy breast’ removals causes concern to ex-cancer patient

Martin Shipton

A former breast cancer patient who had to wait longer than the target time for a mastectomy has expressed concern about the rising number of healthy breast removal surgeries being carried out on Welsh patients.

Jen Rayner, a retired former teacher and youth worker, discovered from a Freedom of Information request that the number of such “top” surgeries facilitated by the Wales Gender Service had risen from 108 in 2021 to 172 in 2022. She had been unable to get more recent statistics from Cardiff and Vale University Health Board, which has responsibility for the Wales Gender Service.

Ms Rayner, from Swansea, told Nation.Cymru: “I had to wait a lot longer for a mastectomy following a breast cancer diagnosis than any of the Wales Government’s targets.

“I also note that in the US women and girls who have changed their minds about transitioning to become ‘men’ are now being awarded large sums by their courts following claims the girls were not properly assessed for life changing surgery.”

Asked whether her argument was that women with breast cancer may be having to wait longer for surgery because of the rise in gender reassignment cases, and whether she also had concerns about whether women and girls in Wales were being properly assessed for transitioning before such surgery was undertaken, she said: “My answer to both questions is yes. The waiting list for all surgeries and pressure to find theatre capacity and hospital aftercare for all surgery is a growing concern.

“I am deeply concerned that girls and women are not assessed as to the reason why they think becoming a man is the only answer. It seems alternative support is not offered. Removal of breasts is only part of the transitioning journey with long term use of drugs, incontinence and infertility commonplace.

“What is the cost of the surgery either in Wales or if sent to England? How is the health service insuring against claims from women who decide transitioning is not what they expected?”

Support group

Asked whether she was involved with any campaign group or if she was raising concerns on her own initiative. Ms Rayner said: “I regularly meet up with other women who are still being treated for cancers. We are a coffee informal support group. I would say most of us have a family member or friend who has had to wait for cancer surgery. Plus family and friends are waiting for hip and knee operations. We find it strange that healthy breasts are being removed for non-life-threatening reasons.

She said she was a member of the Labour Party and the gender critical group Labour Women’s Declaration.

She added: “I know and understand how puberty and a life of periods makes the thought of being a woman difficult for girls.”

A spokesperson for the Welsh Government said: “The NHS in Wales is responsible for commissioning gender reassignment surgical treatments, set out in the clinical access criteria.

“Breast cancer treatment and gender affirming surgery are separate clinical services with different eligibility requirements and waiting lists. The NHS in Wales commissions surgical procedures for gender identity services from specialised centres in England. Strict criteria are followed before people are put forward for surgery.”

Target

Guidelines for managing patients on the Suspected Cancer Pathway (SCP) state that patients “should receive excellent care without delay”. The performance target for the SCP from December 2020 is that at least 75% of patients start their first definitive treatment within 62 days of the point of suspicion.

The website of the Welsh Gender Service states: “Some of our patients will also choose to access a number of NHS commissioned gender-affirming surgeries. Depending on the planned surgical procedure you may need to see a second independent clinician for review before your referral is made; we will organise this for you.

“Surgery is carried out at a number of centres across England and each have different criteria and requirements for providing surgeries. Waits for procedures can vary significantly across hospitals and procedures so reading up on these to make an informed choice is essential to make the right choice for you. Once you have chosen your provider, we make a referral on your behalf.

“Referrals themselves are sent to a central administrative hub called the NHS Gender Dysphoria National Referral Support Service (GDNRSS) and you will be notified once your referral has been processed. The Welsh Gender Service doesn’t hold information about waiting times for surgery, so you will need to contact the GDNRSS directly through their Single Point of Access support line or by email. They can give you information about your referral, the status of your chosen provider, and practical information such as travel and parking details, who can accompany you, what to take with you and where to report when you get there.”

Angharad Davies, a non-binary person living in Cardiff, said: “I am worried this shares potential untruths and myths at the expense of villainising the trans community in Wales.

“I can’t find any confirmation that top surgery and breast cancer removal surgeries in any way share a waiting list. I can find confirmation that many surgeons who do top surgery are plastic surgeons rather than cancer specialists. They do not remove cancer. Therefore in many cases surgeons with these specialties taking on top surgery will not reduce waiting lists for cancer removal surgeries.”

One research study published by the University of Michigan in 2023 involved 235 patients who had undergone a gender-affirming mastectomy – top surgery – over 30 years. It tracked their levels of satisfaction across the two-year period following their surgeries.

Published in the journal JAMA Surgery, it found that the median satisfaction rate among those surveyed was five out of five.

The research involved only a single medical centre, so for the findings to be “generalisable”, future research would need to involve people in a number of places, the study authors said.