I was recently diagnosed with BRACA1 folloing treatment for triple neg. breast cancer. Doctors not in agreeement about how to manage risks and have given me conflicting advice.
What they do agree on is that little is known about women with triple negative cancer AND BRACA1 diagnosis? Anyone been in a similar position?
Many thanks,
I am not BRCA 1 but BRCA 2. I was diagnosed last october following a BC (hormone positive) diagnosis in Jan 10. I had a mx, chemo and rads and this year underwent ovary removal and a second mx as part of risk reducing surgery.
I know that BRCA1 is more likely to be triple negative cancer. I think the risk of ovarian cancer is also greater with BRCA1 than BRCA2.
I was 41 when diagnosed and had 3 children, so the decision to remove my ovaries was relatively easy. Surgery was keyhole and only in 1 night and fully recovered in 2 weeks. My onc refered me to a gynae onc and he “strongly” recommended this surgery as he said there was no effective screening for ovarian cancer and especially as I had completed my family and chemo had put me into menopause. Removal of ovaries also is meant to help reduce the risk of a second primary breast cancer.
I know that NICE recommend an annual MRI scan for BRCA1 and 2 patients, but this is not always followed.
I didn’t feel comfortable with just regular checks and decided risk reducing surgery was the route I wanted to go down. This decision wasn’t easy but I didn’t think I could live the rest of my life worrying about getting another BC or ovarian cancer, let alone worrying about the cancer I did have coming back again. (I didn’t have a great prognosis, even though it was still just a primary).
My advice is talk to the helpline here as they can offer informed advice and other BRCA patients. I asked for an appointment with the genetics consultant as well which also helped. I think what you decide to do also depends on your age, if you have a family etc.
Good luck and feel free to pm me.
Cat
Thanks Cat,
I am now 42, have a daughter aged 4. I have just learned Im post menopausal (i think, but that is another story!). After seeing onc. I had decided to proceed with surgery to remove ovaries as I was advised that this woud reduce breast cancer risk by half. Then surgeon says, no, this is wrong, as triple negative is not hormone driven, I need to view risks to ovary and breast seperately. He made it sound inevitable that I would get a new cancer if I dont have surgery, but could not specify risks. Now I am frightened as I dont want to get cancer again, but I am scared of surgery too. I also think I am at a high risk of a secondary/recurrence for at least the next year. I know this is going to sound bizarre but Im scared that it will just come back somewhere else but I feel the rational choice is to have the surgery. Its helpful to hear your experience. How did you cope emotionally and physically with all that surgery after treatment? Rattles, x
Hi Rattles,
I have the BRCA1 mutation and had triple negative bc in 2010. In 2003 I had hormone positive BC. You can read my bc story on my profile and if you would like any more info, please feel free to send me a pm.
There is someone here who has BRCA2 and also had bc twice. She is also a bc genetics nurse. I am sure she will be posting here soon. She is has wonderful knowledge and great understanding.
Take care of yourself
Love Maria
I can understand your onc’s perspective, but my understanding is than another primary could be either triple neg or hormone positive. My cousin who is also BRCA 2 had triple neg cancer, but another cousin and myself were hormone positve. The stats I was quoted was 50-60% of another primary in my other breast. This is lower than the 60-85% chance we have of getting it first time but was still too high for me.
I am 2 and 1/2 weeks post my risk reducing mx and physically doing well (except for a seroma that appeared today!). I had an immediate reconstruction both times. Emotionally about 4 days after the latest surgery I had a mini-meltdown and felt very sorry for myself, but I know that I have done the right thing. My BCN, who has been wonderful throughout, suggested I be referred to a clinical pychologist who specialises in cancer patients and I agreed. This last 18 months has been a whirlwind and I think time to reflect will be a great help.
My brother died of lung cancer aged 31 and I know that he would have done anything to prolong his life.
I feel I owe it to my 3 children (boys aged 5,10 and 13) to do everything I can to be their Mum for as long as I possibly can.
Cat
Hi Rattles, I’m BRCA1+ and was planning RR mastectomies when I was diagnosed with triple negative cancer in both breasts last August. Had bilateral mastectomies and am due to have ovaries removed soon to reduce my risk of ovarian cancer. Other BRCA+ relatives have also had TNBC and had mastectomies and BSO. BB
Hi Rattles
Like Maria said im a genetic BCN and im BRCA2 and had TNBC at 40 although i also had an ER pos cancer at 37. (ps thanks maria)
although TNBC is more common in BRCA1 mutations than the general public its not as common as ER pos tumours are so although having your ovaries out wouldnt reduce your risk for this type of tumour it does mean that it reduces the risk of getting a hormone positive one in the future… as a mutation carrier multiple cancers are more common.
i had a hysterectomy and ooph in sept but not had RRM yet as like you i kinda feel that having my breast off when its already somewhere else is a bit like shutting the stable door after the horse has bolted but i will be 3 years post TNBC dx in a years time and that is the usual time frame for relapse for TNBC so planning to have RRM next year.
something else which might be of interest… BRCA1 women with TNBC statistically do better than people who get TNBC but do not have a mutated gene… so a little glimmer of light.
for a BRCA1 your risk of OV ca is about 40-60% (for BRCA 2 its about 20-40%) in your lifetime and this is reduced by 95% following proph BSO.
for BRCA 1 and BRCA 2 the life time risk of BC is about 80% and risk of a contralateral BC was something like 43%.
love Lulu xxx
Thanks to all for replies- it’s very reassuring to know that there are other women out there with similar issues, and cant emphasise how much it helps. I cant work out how to post a reply and see previous replies, but I am still struggling to understand certain aspects.
Rationally, I can see I couldnt live with myself if I didnt do everything I could to prevent cancer recurrence and I am now very frighted about first scans since last year. But, it just does not “feel” right to remove currently healthy organs, and I keep thinking is this really the best science can offer us? dont know much about the surgery either- options/risks/what to consider etc.
I have forgotten why the surgeon saw it as important that the risk of a horomonal cancer after triple negative was less likely (maybe its cos I had assumed a halved risk simply by having ovaries removed?)Lulu some of the terms, I didnt understand (co…?) can you explain? I thought as a triple neg., I had a high risk of recurrnec for first 3-5 years, is that right? Also, does anyone know if I have ovaries removed FIRST, will I be able to take HRT (given triple neg. status) or not? I suffer with some unpleasant menopausal symptoms currently and am taking progesterone until I see a gyneocologist. Right now, hormones are making my life miserable and although I am told I am fine, physically I feel like hell and so this was my rationale for sorting ovaries out first.
Any suggestions? Thank you all, xxx
Hi Rattles
you have to do whats right for you… its your body so dont feel pressurised into doing something your not comfortable with but so long as you are aware of the implications of doing or not doing something then it should be your choice whether you wish surgery or not.
the risk of 2nd cancer is obviously quite high anything over 30% is usually considered high… so to have a risk of a new primary of around 40% then that would be considered high risk.
TNBC has the highest risk of recurrence or relapse in the first 3 years following treatment it drops dramatically between 3-5 years and if you get to 5 years you are pretty much considered cured from that cancer.
as for the HRT… generally your gynaecologist wouldnt want to give you HRT regardless of symptoms or tumour hormone status… but your breast surgeon might be happy for you to have HRT… my BS is happy for me to have HRT even though one tumour was ER8 and the other was TN… my only symptoms are hot flushes so dont feel i need the HRT… although it had bone and heart benefits so i havent rules it out completely.
if your onc/gyn/BS arent willing to give HRT then PM me as i was at a study recently on menopause after cancer and one of the speakers said she would take out of area referrals.
i was a bit more afraid of ovarian cancer as the only female relative in my family who had a genetic cancer was ovarian and she died at 45 so i was worried that it may affect at younger age in my family.
what is CO? do you mean contralateral? this means in the other breast… you sometimes see terms contra or ipsi lateral… ipsilateral is in the same breast.
Lxx
I need advise! I was diagnosed at the age of 44 with triple negative breast cancer. BRCA1 & 2 negative. I am scheduled in 2 days for surgery to remove my ovaries. I am down to the wire and still don’t feel 100% certain this is the route to take. Any advise??
Hi ladies
Hope you don’t mind me joining this thread. I’m not BRCA 1 or 2 but have 9 relatives in my mum’s family with breast cancer before age 45. I had WLE for ER+ breast cancer in March and I want a bilateral mx as soon as my treatment is over ( I’m on chemo now then rads) Our family have been tested but not found either gene and all are ER+. The onc says the incidence of BC in our family is too high for there not to be a genetic fault but that there are lots of genes which cause BC but they can’t be identified yet. I would have liked the mastectomies before treatment but he said i would have to have counselling first to make sure I was making the right decision(even though he agreed with me that I was!) I just want to give myself the best chance of surviving and being around for my daughters. I would also like my ovaries removed as I believe it would decrease the chance of a recurrence as my BC was oestrogen fed. He says this isn’t necessary but my own experience tells me it is as my Mum and her one sister are the only survivors and they are also the only ones who had a double mastectomy and oopherectomy (Mum had it 38 years ago at age 29) Does anyone know whether we have a right to ask for ovaries to be removed? Would love to know before I go to see him again.
Thanks
Rachel x
Hi rachel
If your family has been tested and no gene change identified then this normally lowers your risk from ovarian cancer and oophorectomy as a treatment for Breast cancer is unproven. If all the cancers in your family are breast then this also means it’s less likely to warrant ovary removal. But even if your risk of ov ca is low you would still be at population risk.
There are obviously risks involved in having your ovaries removed but I think if you feel strongly about it then you def should get a referral to gynae to discuss it in more detail. It’s not up to Onc, surgeon or geneticist to decide if you can or cannot. All you want to do at this stage is discuss it. But I dint think it’s an unrealistic request.
Your genetic service may also offer psychological support and this can be useful too.
Also who in your family was tested and how and when were they tested? If it was the oldest affected person done over 5 years ago through research then it may nit be as righteous testing as they do now. Or that individual may have had a sporadic cancer even where a gene fault exists.
Good luck
Lulu xxx
Hi Lulu and thanks for your reply-that’s very helpful and I will definitely ask for referral to oncologist as my nan had ovarian cancer not breast cancer. My mum and her 2 sisters were tested 4 years ago, but the others were longer ago than that. We are all going to be retested once my chemo is finished.
Rachel x
Hi Ladies,
I am almost 3 years post Triple Neg Bilateral BC.I am also BRCA2 and have my appointment with Plastic Surgeon tomorrow.
Hi Lulu, can’t believe how fast time has gone since I last spoke to you, thank you so much for your comments and I am sure the ladies on here will agree your knowledge and understanding have been a great help.
My dad was diagnosed with BC, sadly passed away 17 years ago of secondary, and at that time I was advised there was no connection between father/daughter as far as BC was concerned. Male BC was virtually ‘unheard’ of then. I specifically went to my GP to ask if I could be tested but was refused.
My aunt, on my mothers side had ovarian cancer 10 years ago and recovered after hysterectomy. My onc referred me to genetics as I also had endometrial cancer 5 years ago and he said I was young to have had 3 cancers within 3 years. I am 56.
Since the fact that I carry BRCA2 gene fault was diagnosed I have decided to have double MX, my appt is tomorrow and I must admit I am really nervous about it. The BCN has told me I may be limited as to my choices as I have had radiotherapy to both breasts and my pelvic area.
The risk of the BC returning or me getting yet another cancer is very hard to live with so by having the MX I feel I am giving myself the best chance I can.
Hugs to all
Brenda x
hiya Brenda good luck with your appointment.
even with radiotherapy you should still be able to have LD +/- implant or implant only recon… if your not happy with what that PS recommends ask to speak to another… they all have their own ideas… i have had rads to both side although not to pelvis and was offered both LD and implant and my own PS said no to DIEP and TRAM cos i didnt have enough fat but i saw another PS and he was happy to do tummy recon if i wanted but i dont think i fancy that kind.
i was also told at first i could have skin and nipple sparing with expander implant surgery by breast consultant. the PS was very very keen on LD plus implant and at that time i wasnt keen on the invasiveness of the LD. i felt he was kinda pushing for it… they both said i should keep nipples but iv since decided that as both cancers were ductal it may be wise to get rid of my nipples. im planning to go back and discuss it all again as its a year since i last spoke to PS and iv changed my mind 100 times over.
ill be looking forward to hearing what your PS recommends for you.
Lulu xxx
Im finding this all interesting. Lulu why is it that the BRCA1 TN have a better outlook that the TN that are not carriers ? doesn’t look like I’ll ever really know if I am or not unless I want to folk out £2,000 for the test to be done privately 
Mekelar i dont really know why that is but they have done some research looking at outcomes and the BRCA1 TNs seem to fare better. ill see if i can find the research paper.
Lx
Thanks Lulu 
Comments/questions?
I would be interested in the research on BRCA1/Triple negative research too Lulu.
Re.HRT- my onc. says HRT is fine, my surgeon says ‘no way.’ Which is why I am confused about his views that any likely further breast cancer would be triple negtaive again- as far as I can tell most people who responded on this thread seemed to get triple negative, second time around. I can cope with bone pain (mostly) and hot flushes not too bad, but keep getting urine infections which I have been told is due to atrophy and other symptoms. These are severe enough to undermine my quality of life enough to want to address them, but I would want info. re. susbequent risk to weigh up.
Re.Risk.I couldnt get surgeon to comment on risk as he said there was not adequate data but his view was that risk was significant and should be thinking of “when, not if” scenario(and it would make a big difference if I knew risk was 30,40, 50 per cent in terms of the decision-making). He also talked about further tumour in treated breast as well as new cancer.
Re. recurrence rate- is this from diagnosis, or post treatment, if I finished my treatment last March, does 3 years mean next March, or March after this?
Re. gene testing-my sister is very angry I was not eligible for testing under NICE and only learned of BRCA 1 through a research study. Again, there seem to be ladies who dont qualify for testing even though there is a strong family history. It doesnt make sense.
Re. ovarian cancer.I dont know alot about my paternal family (and its here that the incidence of cancer is younger) but if no/limited ovarian cancer is the mutation going to be mainly linked to BC in my family? Does it vary in terms of how it affects individual families? Anyone know?
Thank you all, Rattles
hi ladies… this isnt the actual research but a summary of the main points…
sciencedaily.com/releases/2010/09/100929191314.htm
rattles the evidence with regards the HRT is that you need to weigh it up for you… there are topical HRT treatments like vagifem which is a pessary and is of a very low dose so unlikely to cause any systemic effects but can help with the urogenital atrophy.
the evidence relating to HRT that exists today is based on they HRT preparation of 15 years ago which use equine oestrogens… they are no longer in use and the dosage is much lower and some of the HRT preparations probably have less hormones than some foods and other substances that are consumed.
the evidence suggests the risk of 2nd cancer is around 50%… so its not really a case of ‘when’ more than ‘if’ but it is a possibility.
Lulu xxx