Referrals to the VHR Programme

Referrals to the programme may be made by one of the following:

  • a consultant breast surgeon
  • a genetic consultant or genetic counsellor
  • an oncologist
  • a family history clinician
  • a recognised non-medical referrer

A referral form may be requested by contacting: VeryHighRiskBreastScreening@northerntrust.hscni.net. Completed referral forms should be returned to this email address. Please see the VHR Referral Protocol for further information here.

Direct referrals from GPs are not accepted. If primary care clinicians are aware of women who may be eligible, they should refer such women to a local Family History Clinic.

Consultant Breast Surgeons

Consultant Breast Surgeons should ensure that a family history is taken from all patients presenting in secondary care with breast symptoms or who have concerns about relatives with breast cancer in accordance with NICE guidelines.[1]  Women should be referred to the Regional Genetics Service as described in these guidelines.

Consultant breast surgeons should refer any women known to be at very high risk, who are not already in the surveillance screening programme. It is recommended that those awaiting prophylactic bilateral mastectomy should also be referred, given potential long waiting time for surgery.

Regional Genetics Service

Women who are newly identified by the Regional Genetics Service as having a proven germline pathogenic or likely pathogenic variant in one of the following should be referred to the VHR Surveillance Screening Programme at the time of diagnosis – irrespective of their age:

  • BRCA1
  • BRCA2
  • PALB2
  • PTEN
  • STK11
  • CDH1 (E-Cadherin)
  • TP53 (Li-Fraumeni Syndrome)
  • ATM c.7271T>G (V2424G) variant
  • ATM (A-T) homozygotes
  • Or another genetic mutation with a similar level of risk
  • Or who are not tested but at equivalent very high risk (up to and including the age of 50)

If a woman has not been tested, but has a first degree relative with a germline BRCA1, BRCA2 or TP53 pathogenic or likely pathogenic variant, she has a 50% chance of carrying this variant. As a result, she will be eligible for VHR screening up to and including the age of 50 (after which she will be invited to the routine Breast Screening Programme). Women in this category under age 50 should be referred by the Family History Clinic to the Regional Genetics Service to confirm their risk and to facilitate onward referral to VHR screening. Please note the individuals are under no obligation to undergo predictive testing.

Regional Clinical Oncology Service

Women who have been treated with radiotherapy for lymphoma to sites involving breast tissue between the ages of 10 and 29 years should be referred by a consultant clinical oncologist to the VHR Surveillance Screening Programme at the time of diagnosis – irrespective of age.

Family History Clinics

Family history clinicians should refer any women known to be at very high risk, who are not already in the surveillance screening programme e.g. women who were diagnosed outside NI; women who had supradiaphragmatic radiotherapy outside NI and prevalent cases not identified during the regional identification exercise in 2013/14.

Women who have not been tested, but have a first degree relative with a germline BRCA1, BRCA2 or TP53 pathogenic variant, should be referred to the Regional Genetics Service, as described above.

 

What if a woman is considering or awaiting risk-reducing surgery?

It is recommended that women, at VHR, considering or awaiting risk-reducing surgery are referred to and attend for VHR breast surveillance screening until the surgery has been performed.

 

When do women stop receiving invitations?

When women at VHR reach their 71st birthday, they will no longer receive invites for VHR surveillance screening. They may still self-refer for annual screening after this age, at the VHR Unit at Antrim Area Hospital or at their local Breast Screening Unit.

 

 

[1] https://www.nice.org.uk/guidance/cg164