Sorry if someone has already posted something similar. I was diagnosed with BRCA1 at the start of this year. My Mum has had multiple BC’s before and after double Mastectomy and is unsure of the benefits of such surgery. I grew up watching my mum fight and fight and am not sure I want to go down the same road but a Mastectomy did not prevent her BC’s. Should I follow advice and have both healthy breasts removed or wait to see? My Gran was 30 when first diagnosed and died from BC; my Mum was 32 and thankfully still alive. I haven’t had kids yet so also looking into PGD – has anyone gone through this?
I was wondering whether I could have some advice from both sides of the coin.
There are a few old threads here where others like you (me, us) have posted. I was diagnosed with a brca1 mutation earlier this year, but a little different from you in that I had breast cancer 2 years ago. Its tough to take the diagnosis in and a very personal journey- albeit that you meet people on the way who will help and encourage you. You have to work out (and it is W-OR-K!!) what is right for you.
Like you, when I was first diagnosed, I could not get my head around a decision about how great the need was/is to have such radical surgery. 4 months on, I have a better sense of the risks to me, (as far as we know) and although I dont want to have the surgery at all, I am beginning to see that this is where I am going.
Like you, I wanted to hear from women who had decided not to have surgery, as well as those that did. There is a site called brac umberella where there are some women managing the risks through screening. I wouldnt rush, although the onset of cancer seems young in your family, it is a big decision and my growing sense is that my doctors at least would have supported a decision not to have surgery unless/until a cancer developed and at that point then it would have been the bilateral masectomies.So for my sister, for example, if she even decides to be tested, and then if she was positive, she might choose not to have surgery.
Hope this helps. Feel free to ask questions and there are some very knowlegable and supportive ladies on this forum. Rattles, xx
Hi Emma, It is so hard when you are young to have to make these decisions. I am 31 and also have BRCA1 i have got children but would hope for more one day. It is a really personal choice whether to have surgery or not so I can only tell you how I feel. I feel that if I dont I may regret it one day if I develop BC, I dont want to look back and wish that I had had tha mastecomies years ago. I know there is that small risk of getting BC but at least i wont have regret and will kno that I did everything I could to avoid it. Each family situation is different. I hope that more people post with their support and stories. my preventative sugery is taking place in novemeber. Strawb x
emma i see your mum had breast cancer before she had her mastectomy… this means that the cancer she had afterwards would most likely have been a recurrence of the original cancer… the risk of breast cancer is about 85% chance by age 85… however if you have the gene change your more likely to get BC at a younger age typically under 60… and from your family it sounds like its in the early 30s.
having your breasts removed does not rule out your risk completely but it reduces your risk by 95% which makes your risk much less than the general population.
with people who have cancer first then removing the breast can help prevent it coming back but doesnt stop it from being there in the first place so there is more of a chance of getting after cancer regardless of whether you have a mastectomy or not.
its your decision and it can be a really really hard decision to make to have mastectomys on perfectly healthy breasts… but to put it in to perspective…
without a brca gene you have a risk of 12.5%
with a brca gene you have 85% chance of getting BC
with a brca gene you have 15% chance of NOT getting BC
with a brca gene & mastectomy prior to BC you have a risk of 4%
with a brca gene after BC there is a 50% chance of getting another BC
after BC regardless of whether you have a gene or not you always have a risk of recurrence or secondaries, but often the cancer associated with the genes are more aggressive.
i had BC twice before i knew i was a BRCA 2 carrier and have considered mastectomy over the past few years but now have had a recurrence in my lymph nodes… if id had a mastectomy i would still have got this recurrence… however if id had the mastectomy before i got cancer then it extrememly unlikely id have this recurrence in my nodes.
i hope that makes some kind of sense.
having mastectomy isnt an easy option… its a hard decision and you can have complications following surgery and some people would prefer just to wait and see if they get BC, but for others the fear of getting it or the trauma watching family go through treatment is enough to make them opt for the surgery.
dont know much about the PGD but know it is possible in some areas and there have been healthy gene free babies born in the uk.
have you seen a genetic counsellor or psychologist? they can be a good next step in getting all your facts together and helping get your head around what you want to do… also remember than not having mastectomies now doesnt mean you cannot change your mind in the future… however if you have breast removed then they cannot be stuck back on if your not happy with your decision.
I think that all preventative measure decisions are deeply personal and very difficult, I would never have imagined how hard until being in that situation.
Me - 36 when first diagnosed, now 37 and diagnosed with a recurrence which was operated a month ago. I am bRCA1 which I found out before my first surgery last year so had bilateral mx with expander implants. Was on Tamoxifen but did not work with me.
I think my experience demonstrates exactly what Lulu says.
I do wish I had known before my first BC that I was BRCA1 positive. I can’t be sure that i would have been able go through a preventative mx but I would certainly have considered it and now, with 2 cancers in 8 months, and the benefit of hindsight !!! I would def have had the surgery.
but hindsight is a fine thing - now I am really struggling with the idea of oophorectomy even though i realise it must be the right thing.
What I would say is that, if I had not had my second surgery removing the implants, my breasts looked, in my view, very nice and I was lucky to have a problem free surgery and recovery.
I don’t have experience of PGD as I had my children before diagnosis.
I am sure that you will come to the right decision for you at the time, and probably quite typical to find yourself changing your mind all the time.
I am about to go through the prophylactic mastectomy & reconstruction due to significant family history. I havent had the genetic test - there didnt seem any point since I am the only female in the family who has not been diagnosed with breast or ovarian ca. My sis is 2 years post doagnosis & my mum continues to battle (its been 10 years & she is on her 4th fight) I keep having wobbles over my decision, but ultimately, I know its the right thing for me.
My wonderful friend was diagnosed with BC almost 7 years ago & has had almost 7 years of various reconstuctive interventions. She made me realise that I still have all my choices because I have no previous diagnosis - being diagnosed changes the options somewhat. I know it wont eradicate my risk completely, but I sure wont feel like its hanging over my head anymore. No more tick tock tick tock…
I`ve watched my loved ones go through it & many many many others & I am not prepared to go through it if there is any chance I can avoid it …