Diagnosed with genetic BC - please help - first post

Hello

This is my first post. I’ve been diagnosed with genetic BC - so a double mastectomy is on the cards with reconstruction at the same time and discussions about ovarian cancer to follow. So far the cancer is small and local. I first went to the breast clinic 30 September and the biopsy was confirmed 20 October. No surgery date booked but should be a matter of weeks.

I am 36 and have a son, 4 and a daughter, 18 months.

I feel numb. I have no idea what is round the corner. I am scared.

I would really like to hear from anyone who has had a similar experience. What reconstruction did you have? How did you feel right after the operation? How quickly did you feel able to get back on your feet, how long till you could care for children? How do you feel when you look back on the time before and immediately after the surgery? Has there been any emotional backlash?

Thank you.

Claire2010

Thank you

Hi Claire and welcome to the BCC forums

In addition to the support here our helpliners are available 9-5 weekdays and 9-2 Sat to offer support and information and you are welcome to call for a listening ear.

BCC have published information to support you through this difficult time, you can read or order copies via these links, one is a resource pack designed for those newly diagnosed and there is also an information booklet about reconstruction:

breastcancercare.org.uk/healthcare-professionals/publications/diagnosed-with-breast-cancer/*/changeTemplate/PublicationDisplay/publicationId/82/

breastcancercare.org.uk/healthcare-professionals/publications/treatment-and-side-effects/*/changeTemplate/PublicationDisplay/publicationId/107/

Take care
Lucy

Hi Claire
I am 42 with a 9 year old son and was diagnosed in March. Have since had mastectomy, chemo and radiotherapy - finished last week. I then had the results of my genetic test ( i lost my sister 10 years ago to breast cancer) and it has come back positive.

For me the treatment has been a bit of a rollercoaster, trying to balance work, being a single mum and coping with cancer. It helps to stay positive, eat well and rest - though as a mum thats easier said than done! Sometimes though having kids to make you get up and do things is a real help - mine is old enough to understand pretty much evrything i have gone through and hes been a star but is understandably a bit more clingy than he was.

I was not allowed reconstruction immediately due to radio therapy and now have to consider a second mast as prevention. The whole process is mindblowing if you try and look at it all at once. The only way i coped was to bite off bits at a time, but we are all different and you will know whats right for you.

I am sure others can advise on reconstruction - i will be watching the thread as i will be interested in the answers too!

I hope the op and treatments go well - its a battle but we have to win!
Jill

i claire sorry to hear of your diagnosis.

im a brca2 carrier and iv had breast cancer twice at 37 and 40… both were before i found out i had the gene… so i was treated conservatively with lumpectomy and not mastectomy.

im on the waiting list for mx but have deferred it for a while as im just recovering from hysterectomy with ovary removal… my plan is to have implant only recon although i was offered LD (back flap) as well but decided against it initially but do have the option to have the LD at later stage.

my kids were older at 11 and 15 at the time of the first cancer and 14 and 18 at time of second one so the issues they have are so much different to wee ones like yours.

at the outset it was a shock especially the second cancer cos it was found on my annual review mammo whereas the first was a lump i found myself… it does however get a bit easier as time goes by.

love and hugs

Lulu x

Hi

I can’t help with the genetic side as it’s not in my family but just wanted to offer a freindly hello. I had an MX after a failed lumpectomy 2 weeks ago & waiting for recon til after chemo & rads. feeling numb is completely the norm. like life has stopped or you are exisiting in some parallel universe. I have a 4 year old daughter which is the aspect I find hardest to deal with so can sympathise with the fact you have small children. the only good thing I would say about that is they keep you grounded & help you stay relatively “normal” once the shock of all this settles a bit (which it will - I never thought it would but after a few weeks you DO get used to it). also they are too young to really understahnd what is going on so will hopefully not be so emotionally affected by the full implications as if they were a little older. having said that it is of course a strain caring for young children at the best of times so it is going to be hard work. You must try to look after yourself & accept ALL the help that is offered & don’t be afraid to ask for it too. often people really want something they can actually DO to help so just accept anything going.

There is a lot of support on here & I have found it very reassuring to hear from others who have gone through this & come out the other side.

Hope that is of some little help - XXXXXXXXXXX