BRCA1 had double MX - what follow up do I get

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Hello

I am a BRCA1 carrier, I have had Breast cancer, as well as a double mastectomy.

Can anyone tell me what follow up scans I will get at the hospital. I have asked at my hospital and they are not sure, guess they have not come across this before!! I have been waiting ages for them to get back to me, and I just wondered what MRI scans or similar others in the same situation are getting.

Thanks in advance

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crystal

we dont do follow scans if you have had a bilater Mx there isnt anything there to scan… the only tissue that is left is minimal and is unlikely to show up.

you may want to consider having your ovaries out if you are under 50 and your family is complete as this reduces your risk of ovarian cancer but also further reduces your risk of breast cancer.

you should still get an annual follow up at the breast unit which will involve a clinical breast exam and were you to find any new symptoms they would investigate them at the time.

all our high risk ladies become low risk following risk reducing mastectomy surgery so dont have any scans… their risk of getting breast cancer or another breast cancer is lower than population risk.

only women who do not wish risk reducing surgery will continue to be scanned regularly.

Lx

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Lulu - thansk for your comments

My genetics counsellor is investigating this, as currently she
believes that we should be entitled to something as there will still be tiny amounts of breast tissue remaining.

I have also heard of someone on this site who got breast cancer under an implant.

SO rather concerned, and I do hope that there are some scans that will happen for us.

xx

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although there will be tiny amounts of breast tissue remaining your risk would be lowered by the fact that most of your breast tissue has been removed and your risk drops from 85% to less than the population average of around 9% and is between 1 and 5%.

because the risk is less than population risk you wouldnt normally get screened… otherwise other low risk groups would need to be screened too as it has to be seen to be equitable.

ill be interested to hear what your breast nurse finds out in relation to this though.

Lx