Risk Reducing Surgery without BRCA Mutations

Hi
I wondered if anyone has had (or is considering) risk reducing surgery without having either of the BRCA mutations? I have a strong family history of breast cancer but tested negative for BRCA mutations. I am triple negative so know that my risk of recurrence is highest in the first three years from diagnosis. I know there is nothing I can do to prevent recurrence but I can reduce the risk of a new primary. I would hate to get to three years from now, give a sigh of relief and then find myself back at the beginning again because of a new primary. I have discussed this briefly with my surgeon who was not dismissive and I have to see him again in December. Sometimes I feel strongly this is the path I want to follow and at others I wonder if I am overreacting. Would be good to hear from anyone in a similar situation.

Just bumping to get this on the main page

Hello,

I also have a very strong family history (all women on my mum’s side and lost my mum to BC) but tested negative for BRCA. However, they know there are other unidentified genes out there. I had to have an mx on one side and opted for risk reduside surgery at the same time with immediate recon on both sides. My sister is 26 and has also opted for preventative surgery. However, it is a very big and personal decision. If you talk to your surgeon about it they should be able to refer you to someone to discuss it so that you make the right decision for YOU.

X

Hi Carabel, I don’t think you are overreacting - I think it is a pretty normal thought process to go through under the ciscumstances. I’m not sure people who have not personally experienced the diagnosis, treatment and fear of recurrance would necessarily understand though.

When you say strong family history - do you mind saying how so?

Not sure I can say anything helpful because I am a few steps behind you. Age 33, sister stage 4 diagnosis at 36, fraternal gran diagnosed at 37, dad died of liver cancer last year. Have only had surgery (2x WLE) so far and awaiting chemo / radio / hormone treatment as ER+. Genetic testing for me have been alluded to but I veer between not wanting to be tested and like you - asking for risk reducing surgery regardless of the BRCA situation. I have decided to shelve genetic testing until at least after chemo - and am having IVF treatment to freeze embryos so maybe have the option of pre-implantation genetic testing at a later date if needs be.

It really does come down to what you feel you can live with and whether the surgeon would give you the option? If the surgeon didn’t recoil in horror then I think you should ask to seriously discuss the options at your next appointment. Maybe talking about it in a real “this could happen” way will help you pin down your true feelings. If talking about it openly makes you feel positive then maybe it is the right option for you. lf it makes you want to run away screaming then you obv need more time to think it through!

What I’m trying to say is I’m not sure going round in circles in your own head is going to help you decide - maybe some counselling might be helpful? Or if you could talk to women who have had the risk reducing surgery?

Hopefully someone else with more experience will be along to reply soon - hope you find the right outcome for you. I’m just going to sit over here with my head in the sand regarding gentics and risk reducing surgery for a bit longer!

Hi Carabel,

To help you along I’ve put for you below the link to BCC’s publication regarding breast cancer in families, I hope you find it helpful. Also the helpline team are here if you want to talk to someone in confidence about these issues. Calls to the helpline are free, 0808 800 6000, open again tomorrow morning at 9am.

www2.breastcancercare.org.uk/publications/worried-about-breast-cancer/breast-cancer-families-bcc32

Here’s also the link to the area of this website where hereditary breast cancer is discussed:

breastcancercare.org.uk/node/1154055

Hope this helps. Take care,

Jo, Facilitator

Clarabel i also know of ladies who have strong family history who chose to have risk reducing surgery even where no gene mutation was found but they do have to be fully assessed by a clinical psychologist before having the surgery so you can get your gp to refer you to genetics or if your in a screening programme for women with a family history then you will maybe be under the care of genetics already then they can prob discuss rik and referral to the psych and surgeon.

take care x

Thanks for your replies.
Sandytoes - as you have said there are other genes out there yet to be identified. I am triple negative as was my mum and given that this is not common my feeling is that this is more than just chance. I had wle x 2 so would be looking now for double mx and recon. What type of recon did you have? Are you happy with results? Is your sister also going to have recon?

Brady 40 - my mum and her sister have both had bc and my grandmother died of bc at age 52. I had no doubts about genetic testing as i have sisters and a daughter and they wanted to know the risk. Although I didn.t have gene mutation they are all considered high risk and will be screened from age 35. Good luck with your own treatment.

Lulu - Genetics counsellor has provided me with some data around risk of recurrence / new primary which is helpful. My breast surgeon did seem supportive when I spoke to him before radiotherapy. His advice then was to complete my treatment and come back to see him in December. He explained that I would need to go through the process of speaking to clinical psychologist etc. I guess I just wanted to speak to someone who had made this decision before I take the next step.

Carabel x

Hi Carabel
I had a mastectomy to my left breast last November. I’ve tested negative for BRCA but because of family history and also because it was a lobular tumour, I’m going to have a second risk-reducing mastectomy with no reconstruction very soon. I’m still undecided about whether to have reconstruction later but my BCN said it won’t be until at least a year after finishing rads (this May), will be major surgery and they are unlikely to do both sides at once. For me, the reconstruction isn’t as important right now as I can’t relax at all until the right breast is gone. I’ve had a psychological assessment, the oncologist thinks it’s a good decision and the surgeon is willing to do it. As everyone says, it’s a very personal decision and you have to do what is right for you, and if I were younger I’d probably do things a differently. xx

I didn’t have any counselling. Just explained how strongly I felt to my surgeon. I had immediate recon with expanders as they had to remove some skin and I had rads and will have DIEP recon or just implants (deciding on that) in Jan. The temporary expanders ate really hard,asp I can’t say I’m pleased at the moment but I don’t regret it. I believe I’m happier being symmetrical than I would have been if I’d kept my right breast. And I know I’ve done all I can to reduce my risk in the future.

My sister is having immediate recon using implants and can keep her nipples.

Thanks everyone for your comments. I spoke at some length to a nurse from BCC yesterday. She is going to match me to someone who has been in the same position as me and who has undergone risk reducing surgery. I am definitely leaning towards the surgery. Am seeing oncologist tomorrow so will find out his thoughts.

Thanks again x

Hi Carabel and others
My mum had b.c 30 odd years ago and sadly passed away in her early 30’s
My sister was diagnsed 3 yrs ago and had a bilateral mx. She was tested and told she hasnt got the gene.
I was diagnosed this June and knew straight away what I’d do. Was offered a WLE but went for a bilateral mx too with immediate recon using implants. Im 41. Like Sandytoes no councelling was offered and I dont really think I needed it. Turned out to be a v good decision as a large area of DCIS was found in the other breast
I will meet with the geneticist in December. Not sure if they will test me?? To be honest the fact that my sister didnt have the gene didnt reassure me one bit. As far as Im concerned with my family history , its genetic whether they know the name of the gene or not yet.
My only regret is not having risk reducing surgery before I developed b.c. I also want to find out about oophrectomy as I dont think I’ll have any qualms about that either
Good luck
Mandy x

Hi Mandy
Like you I think there must be a genetic link as yet unidentified. Even the Genetic Counsellor thought this likely. I am definately steering towards the surgery. I don’t think I could live with myself if I got breast cancer again in the future and knew that I could have done something to prevent it. I will be seeing surgeon again mid December and hope that he agrees with me.
Carabel x

Hi mandy

with respect of your ovaries if you dont have a known mutation in our family and you dont have any ovarian cancer in your family then your risk for ov ca is not actually increased… however i know some women woukd prefer to have their ovaries removed as that also reduces the risk of BC by around 50%… Although may not be as significant following a BC diagnosis than in a an individual who has never been affected.

good luck with your appt in dec clarabel

Lx

Thanks Lulu. Will come back on & update after appointment.

Posted on behalf of new user Tina - Jo, Facilitator

Hi, my mum had breast cancer 8 years ago and my younger sister was diagnosed with breast cancer 3 years ago. My mums eldest brother also had breast cancer and my mum now has secondary breast cancer. After being told that they believe the cancer is genetic and we don’t have either of the BRCA genes, I decided to have a double mastectomy and DIEP flap reconstruction surgery. I have 4 year old twins and I have just turned 40 and because my mum and sisters breast cancer was oestrogen triggered, I couldn’t bear the thought of the chance of developing breast cancer and not being around to watch them grow up. I had the operation in August, I am recovering well and I will need one more operation on my breasts. I wish you all the health in the world, take care and be strong. If you decide to have the operation, yes it is a big operation, and it takes time to recover, up to 12 months they say, but I don’t regret it, not for 1 minute. Xxx