If you have a strong family history of Breast Cancer …

[EatenTooMuchChocolateAgain]

Would you want to have / or have you had genetic testing to test for BRCA 1 or 2 genes?

If you did have testing and you were positive for the genes have you had preventative surgery?

There is history of BC on both sides of my family, I’m having surveillance mammograms done yearly since I was 40, I’m now early 50’s.

Im very undecided whether to have genetic testing done, any thoughts on pros/cons welcomed!

Looks like it might reopen next year https://nhsjewishbrcaprogramme.org.uk/

I had the testing, thankfully it was negative. We have t got a strong family history of breast cancer, but my Auntie had it (maternal side) and I got it when I was 48. I was offered the testing but was a bit undecided. I decided to do it though cause I have a Sister and might one day have Grandaughters who could be at risk

strong family history on maternal side here. I requested the testing through my GP and it only involved a series of backwards and forwards letter between Addenbrookes and I. They requested access to my Mum’s medical info (which she had to consent to, obviously) and as she was going through treatment they were able to sample her blood, it was negative so they then gave me a probability which was slightly higher than average population so I will have mammograms from 40.

I have dense breasts but don't know where on the scale. What can you do differently if you know you have them?

Yes I did, and thankfully negative. Have been offered preventative tamoxifen, but I can’t make my mind up about it.

I have a very strong family history of breast and ovarian cancer and got tested back in 2017. Several family members have the gene but my results came back negative. In 2023 I was diagnosed with leiomyosarcoma which started in the womb and am now Stage 4.

This makes a lot of sense, thank you. My mums breast cancer was lobular, my grandmother's DCIS (x2, bilateral). Do you know how easy it not it is to get an annual/biannual MRI? Would be willing to pay private. I have dense breast tissue and previously had a mastopexy (which, on no scientific basis, has convinced me everything getting moved around in there is more likely to hide cancer...)

I was offered this after having DCIS. I did a lot of research into it and discussed it with my oncologist. He said that people often only look at how it improves breast cancer rates but it actually increases the risk of other cancers like uterine cancer. On the basis that I get frequent checks for breast cancer but other cancers like uterine and ovarian cancer often only show symptoms at a very late stage, we agreed that it could be riskier for me to take it rather than not take it. There are also higher risks of heart disease and strokes on tamoxifen. I have still clear 5 years after BC and am glad I didnt take it.

Sorry, OP, I think I have derailed the thread a bit. Yes, get genetic testing if offered. Yes, take preventative treatment if offered. I’d want risk-reducing surgery. But Tamoxifen has its own cancer risk downside, which does need to be considered.

Unfortunately, it’s not easy to get anything other than standard NHS care, which is mammogram. Even I, whose cancer did not show on mammogram, was only offered mammograms as follow-up, which, only a year later, proceeded to still not see the cancer that had returned and grown to 10cm over several tumours. You can tell how incredibly angry I am. But I just didn’t know. Those with confirmed lobular breast cancer that does not show on mammogram are sometimes offered MRI as a follow-up if they advocate for it, but it’s very much trust dependent.

Ultrasound can be better for dense breasts. But they only do ultrasound if there’s a specific spot to look at.

MRI with contrast tends to be best. I had that too, and while that did see about 2cm, it missed the other 8cm - so still not super reliable. You can have a breast MRI privately. I do know someone whose cancer recurrence was found this way, after being told she was fine by her normal hospital.

The majority of people will have a vastly better scan accuracy than I did, so I don’t want to ever put anyone off having a mammogram. The difficulty is in having the combination of lobular breast cancer and dense breasts.

I'm sorry this happened to you. Unfortunately I have little faith in the NHS for a myriad of reasons and am happy (and fortunate) to be willing to pay privately. I have a 4 year old and am the main earner, so want to be extra on the ball about these things. My dense breast tissue and family history scares me. My CAN risk score was above average. Sending you best wishes

@WhereAreWeNowIt was done by keyhole surgery. I now have three small scars on my abdomen, like thick red lines; the longest is no more than an inch. The stitches fell out after time, as planned. I had three weeks off work, which the gynaecologist recommended, but I felt a bit of a fraud, because I recovered pretty quickly. I think anaesthesia has improved a lot since my last operation, aged 17.

I stayed in over night, but that was mainly because I’m a single parent; if you have an adult to look after you, you can go home the same day. DD and I stayed with my DM for a few days afterwards (she’s not good with stairs, so didn’t want to come to ours). I don’t drive so can’t remember what the recommendations are.

The gynaecologist told me I could have HRT for 6 months if I wanted, but not more, presumably because it would increase my risk of breast cancer. I don’t have any particular menopausal symptoms atm.

Thanks @ChannelLightVessel . I was hoping to take just 1 week off work but maybe that's unrealistic. Glad to hear that menopause symptoms aren't too bad for you.

I have not had the test but may enquire about it as my Mum had BC, my aunt and my cousin also. Do you need your Mum's consent to do the test or anything? Mine has passed away but not from BC.

Thank you. From how it was explained by the genetics team at Sheffield children's hospital I would only be tested for BCRA if my sisters came back positive as she has breast cancer. Luckily it returned a negative result.

I didn’t know you could have mammograms younger? Nobody has ever suggested it to me. My Mum had breast cancer at 40 and my paternal grandmother also had it. How do I go about getting these please?

Make an appt to see your GP, explain and they should refer you to the breast clinic.

my mum and her sister had breast cancer amd their half sister had cervical cancer.

I have annual mammograms but chose not to have the genetic testing.

You should be able to. But maybe it’s area and trust dependent. My two DDs have been recommended to start screening from their mid-30s. It’s in the letter from the genetics team to me. They’re not near that age yet, so how easy it will be when they try to access it we will find out.

Thank you @daisypondand @FrangipaniBluei will look into it 👍

What they told you is the standard NHS/NICE guidance. The NHS jewish programme is different and allows you to be tested even without any family history. It's definitely worth keeping an eye out for when it reopens next year.

Here are the NICE guidelines on family history/genetic testing https://www.nice.org.uk/guidance/cg164/chapter/recommendations#clinical-significance-of-a-family-history-of-breast-cancer