Hi I’m 39 and have 2 children, boys, 3 and 11 months. My mother died of breast cancer. There are many women in my family have died from breast or ovarian. We have a variant on BRCA1, which might or might not start a cancer. There has not been enough research on this particular variant. I have elected to have everything taken away as I don’t want to end up like my Mum. I couldn’t face chemotherapy, I cared for her at home until she died.
I know I’m doing this to live for my boys but I’m scared as the Dr’s tell you the potential reality but I don’t know anyone whose been through this. I want to know the reality of post op for ovary and tube removal and medical menopause at a younger age, breast removal and reconstruction so I can plan for the boys care as I don’t have much support and mentally so I cope. I don’t have cancer so feel a fraud using this but there are not many places I can find people in the same situation as me. Even a few versions of people’s reality would help as feel like I’m walking into this blind.
Hello Athole
Thank you for posting on the Forums. It sounds like you are having to make some really difficult decisions at the moment whilst caring for two young children.
Getting information on the practical aspects of surgery and the effects of an early menopause are really important so that you can prepare for your surgery, recovery and the care of your children.
There are several places that you might go to access support. The Eve Appeal has information on risk reducing surgery (ovary and tubes) and also has an ‘ask our nurse’ service that you may want to use. Macmillan has a booklet which is a practical guide to understanding risk reducing breast surgery that you may find helpful.
I am not sure if you have come across them but BRCA Umbrella are an online forum that you will need to join where there is lots of discussion and practical advice around making decisions, surgery and recovery.
Breast Cancer Care has a service called Someone Like Me who can match you with another person who has been through risk reducing surgery if you would prefer to talk to someone in person.
Do call our free, confidential Helpline if you would like to talk this through or have any further questions. The number is 0808 800 6000. We’re here Monday to Saturday from 9am. On Wednesdays we’re open until 7pm, other weekdays it’s 5pm and on Saturdays it’s 1pm.
Please note that during the festive period our opening hours will change. We will be closing on Saturday 23 December at 1pm, and we will open again at 9am on Wednesday 27 December. On that day, and on Thursday 28 and Friday 29 December, we will be open between 9am and 5pm. We will then close again, resuming our normal opening hours from 9am on Tuesday 2 January 2018.
Best wishes
Rachel
Breast Cancer Care Nurse
Please read the Ask Our Nurses disclaimer.
Being a carrier of the brca gene myself, I wish I had known before I was diagnosed with Ovarian cancer last year. I’ve never been one for hospitals, but when your told you have have cancer I just wanted everything removed. I later found out I had the brca, but it was too late to have my breasts removed, as I now have secondary breast as well as ovarian. I would have had everything removed to prevent being in this situation now. I am 54, with grown up children, but being classed as terminal I’m still struggling with that news.
The debulking operation for the ovarian, wasn’t bad at all, I was up and about within 4 to 5 weeks, back at work by the 6th. The Chemo was s***t. You are young, so you will recover faster from surgery. If you have the gene, and your family is complete, then it is worth considering, although like anything in life, there is no guarantee that it will free you completely of getting a cancer.
Thank you both for the advice. I have the McMillan book. My ovary surgery is now book but now we have an issue with clot risk from HRT which is making me rethink doing my ovaries first. I have contacted McMillan for advice but the answer is there is no answer.
Maxi63. I am so sorry for what you are going through. Thank you for taking the time to answer me, basically to give me a boot up the bum. I’m finding dealing with the NHS really hard. There are constant mistakes. Appointments sent out wrongly, cancellations at the last minute, really important information not being given until it’s too late, being lost of consultants lists. It goes on and on and I feel if I don’t check on things nothing happens. Unlike with you I am well, goodness knows how people who are not manage. A little bit of hope for you though my Mum got 6 years after being told she was terminal, some of it well and some not. When she was well we did what she wanted too to make memories I now treasure. Make a list! Wishing you the very best.