BRCA1, no cancer but removal of ovary, fallopian tubes and breasts

hello. my 28 year old daughter has been diagnosed with breast cancer in the beginning of march this year. she also was diagnosed with the faulty BRCA1 gene. the rest of our imminant family has also been tested. my husband still has his results pending. our son thankfully has not got the faulty gene but i also have it. im in the process of having my remaining left ovary and both fallopian tubes removed (jan.) and also later in the year my breasts. becauseour daughter had a consultation with her cancer doctors regarding the same op’s and was told, that- if she would have her overies and fallopian tubes removed, she would be plunged into early menopause and would have high risks of heart issues, strokes aso… now i am totally freaked out , because of these facts ( i have thanatophobia/ phobia of death and dying) and i would really appreciate, if you as a nurse, or any of the ladies on here in a similar situation, can shed some light, info, share information ?! probably also important to mention. i am 54 and i have a coil. so i wouldnt even now if im in the menopause, or not… i know a bloodtest can clarify that… my panic is focust on the heart and stroke issue… im very worried and scared

T

Hi @templar-1310

It sounds like a difficult time for you and your family. You may find it helpful to call our helpline to talk through how you’re feeling. We often find we can help more by talking on the phone.

If someone is pre-menopausal, having a risk reducing oophorectomy (removal of the ovaries and fallopian tubes) will cause an early menopause, often called a surgical menopause. Early menopause in women under the age of 45 can increase the risk of coronary disease and stroke, as you mention, due to the sudden loss of ovarian function and how this affects the body. This risk isn’t the same for women over 45, although if they are pre-menopausal they may still experience menopausal symptoms. You can read more about this in the link.

Some people may be offered HRT after surgery to help manage menopausal symptoms and reduce the associated risks. For women over the age of 45 this decision would be based on any symptoms you experience. Women under the age of 45 may also be offered HRT, but this may not be appropriate for your daughter due to her breast cancer diagnosis. Her treatment team will discuss this with her before her risk reducing surgery.

If you have already been seen by a gynaecologist to discuss your surgery, you may want to call them to talk through the concerns you have. You can also talk to the genetic specialist looking after your family. Do make sure they are aware of your thanatophopia so they can provide any additional support you may need.

You may find our information about managing your risk of breast cancer helpful. The organisation BRCA+CHAT also have a list of helpful resources.

Sometimes talking to someone who has been through a similar experience can be helpful Our Someone Like Me service can put you in touch with a trained volunteer who has had risk reducing surgery to talk to for support. Your daughter may also find this service helpful.

We also offer a range of supportive services for anyone affected by breast cancer.

As mentioned above, please do call our helpline if you would like to talk this through or have any further questions. Your daughter is also welcome to give us a call. The helpline team have time to listen, talk things through and signpost you to additional support and information if necessary. Your call will be confidential, and the number is free from UK landlines and all mobile networks.

Our number is 0808 800 6000. If you have hearing or speech difficulties dial 18001 followed by our number and the call will go through Relay UK. Our helpline has access to telephone interpreters if language translation is required.

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Best wishes,

Cassie

Breast Care Nurse

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