My name is Tash I’m 29 years old and just had my appointment with the family history clinic and been told I have moderate risk to breast cancer in the future.
Abit of back ground my maternal grandmother and auntie both got breast cancer at 47. My grandmother recovered but my aunt died aged 51 after getting secondary cancers.
I’ll start getting checked from age 40 and even been told about chemoprevtion (best to have kids first if I want them).
Here’s where my head is at. We don’t have any cancer genes, my mum is 56 and so far cancer free which is great, but I have two major questions in my head.
Do I pay private for a double mastectomy? I feel like I have 2 ticking time bombs on my chest!
Do I have my own children? I know if I do they could hold the same risk as I do now, and may have these questions.
I can’t seem to find the answers or anyone going through the same thing as me and hoping for people’s views/opinions on this!
I know in the UK they don’t do extensive genetic testing very much. So I just want to confirm your family has had that. There are more genes than the BRCA’s that cause breast cancer. Secondly, if you have had extensive testing and there is no cancer genes coming up then you would have to do a double mastectomy on your own dime. Whether you want to do that or not would be your decision although I’ll have to say I haven’t heard of anyone doing it without a known gene. It is life changing although they can do great things reconstructively now so aesthetically at least you’re likely to be very pleased. But physically you will be forever negatively changed and there is no way around it. On a personal note I did a lot of genetic testing before I was diagnosed and nothing came up. Didn’t do surgery intervention as a result and a few years later I was diagnosed with breast cancer. Looking back I hate that nothing came up so that I would have made the decision to do a preventative double mastectomy. But not so much that I didn’t get rid of my breasts. I mean it just didn’t make any sense at the time without a gene to quantify my risk factor. Going back, if I knew the same things as I did then, I wouldn’t change anything. And as far as having your own children that would be up to you, too. But I personally wouldn’t let a cancer history in my family stop me from doing that. Cancer treatment has come a long way in just a decade and in another decade we may be looking back going “do you remember when no one knew if they were going to be cured from breast cancer until they died of something else?” Hell I read about a treatment here in trial that cured everyone in it of colon cancer. Everyone. Unheard of. So things are moving quickly and our children’s world will likely be very different from our’s in regards to cancer treatment.
Oh and I do want to let you know I’m from the US and we automatically start breast cancer screening at 40 no matter what. However, if you have a close family member with breast cancer you start mammograms 10 years earlier than their age at diagnosis. I believe your aunt and grandmother apply as a close family member so here we’d start you on mammograms at 37. Just an FYI.
My daughter is 33 and has been worrying about whether she is at increased risk of developing breast cancer in the future since my diagnosis, especially as my cancer was triple negative which can be associated with faulty genes. I asked my breast cancer nurse about it and she just advised that she asked to be entered into the screening system at 40. My daughter has decided to do this and not worry about it until then apart from regularly checking her breasts, which she does anyway.
We do not qualify for NHS genetic testing because I am 64 and age is considered the major factor for me getting breast cancer. My family history of one maternal aunt who got BC at 62 and one paternal cousin who was diagnosed at 45 is not considered relevant. Only first degree relatives ie mother, sister, daughter diagnosed before 50 or any male relative are considered to be strong evidence of possible genetic risk. Aunts, cousins and grandmothers are considered second degree relatives and not a strong indication of genetic risk.
Only you can make the decision about what to do. I am sure that I would have taken the same attitude as my daughter at her age although the difference is by then I had three children and she doesn’t yet have any but would like to have a child.
I am a new member to the site. Just read your questions. My personal response, having just had a mastectomy and lymph Clearence is do not pay to get a double mastectomy.
I suggest you keep up with regular checks and let the NHS guide you. A double mastectomy is a huge operation and if its not necessary seems unwarranted especially as mum is clear.
Also, if you want kids you should have them. We can never protect our children from life and all its diseases. My mum had grade 3 Oestrogen receptive, I have Her2 + so they are different cancers not genetic. My mum is now 82 and has had a good life, I am 58. My daughter’s only reason for getting breast cancer will because she is a woman (1 in 7) - nothing else. Life is a risk at every turn. Try and enjoy yourself as you appear healthy at the moment.
Look into your diet and invest in a cancer nutritionist who can guide you in making huge changes to your diet and suggest supplements that can support your wellbeing. That would be my advice. In ten years time there will be huge advancements in cancer treatment and it would be a shame to have gone through an operation that was totally unnecessary.
Hi Tasha, I have the BRACA gene inherited from my mum who sadly passed at 28. If you have the BRACA gene then unfortunately it does mean you can pass it down to your children. They will have a 50/50 chance I have decided to have surgery (a double mastectomy) as this makes me less than the average woman of getting breast cancer and I plan on my future children to do the same thing if they inherit it. I don’t have to pay for it as it’s under the NHS but you’d have to check about yourself.
Im now 23 years old and got the news a year ago. Hope this helped x
