Preventative Surgery
Preventative Surgery Hi all,
I am new here and I’ve been reading all your messages with interest. You are all so brave!
I’ve been thinking about having preventative surgery with reconstruction and need some advice as I am a bit lost and scared.
I am 31 and had my first mammogram last year. I had to go back for a needle aspiration test as I had fairly severe calcification in my right breast. Thankfully it was all fine.
My Mum and Aunt both had cancer when they were 34 and again in their 40s. My Mum then had it again in her 50s. They are both alive as the cancer was not an aggressive type of cancer.
My Gran had it in her 80s and recovered well and my Great Grandmother died of it.
Now, I’ve not had the genetic testing although I have discussed it with the genetic counsellor who seems to think it would take over two years to get the results back as my Mum would need to be tested first. In two years, I am 33.
My Mum had my brother and me before getting ill but I am not in a position to have children now and not for the next 3 years I would imagine. I suppose I am scared I will get cancer and affect my fertility with the cancer treatment hence why I am considering the surgery.
How did you go about it? I have an appointment at the Royal Marsden at the end of this month to discuss this but I am not sure what to ask, what to expect, will this be covered by the NHS if I am covered or am I better off going privately, what type of surgery have you had? Etc…
I realise this is major surgery and not a decision to be taken lightly. I am scared but also pretty determined to explore this as I’d rather have my life…
I hope you can help.
Thank you.
Nxx
Hi there and welcome.
I will try not to waffle and cut a long story short…
I am 32, and you may have seen that I get my test results next week ! Yikes ! I am scared, but also (quite bizarely) looking forward to getting my results, I just want the waiting to be over so I can get on with my life or get booked in for my surgery !
My story - the shortened version !
Mum was diagnosed aged 52 and we were offered genetic counselling due to other family history - once the family tree was done it was felt that it could be genetic and mum was offered the test. it took 2 years to get the results, she was found to have a BRAC2 fault, which meant that I (if inherited the gene fault) would have 85% chance of breast cancer, and a slight increased risk of ovarian. That was 5 years ago. At my second annual breast check last year I spoke to the nurse about my options and she thought I should get an appointment with my genetic counsellor to discuss my options. (My youngest realative with BC was aged 33 so started to panic) In Feb this year, I started the process. Initially I knew nothing so started to research preventative surgery and until about 8 weeks ago decided that I wanted to see the surgeon first. I then had counselling and saw the psycologist, this also coincided with the programme “My breasts or my Life” I personally found this very useful, although I know some ladies didn’t, if you read some earlier threads you will see the comments. Basically it was the story of a 24 year old and her decisions around surgery.
Not sure if anyone on here has a copy ?
Everyone is different, some ladies on here are happy with screening and certain lifestyle changes for the moment. I personally (if I test positive) have decided that I can’t live with 85% risk and want to do everything I can to reduce my risk. That is just me though. I too hope to have children one day (once I have met my price charming anyway !) I am not sure if they can harvest eggs or whatever for younger women who have to have chemo etc.
I think once you have had your appointment you will be in a better position to think about what you want to do, I guess the sooner your mum has the test the sooner you can get the results.
I am not sure how you would go about getting the test done privately. Surgery is avaialble on the NHS, I am under the Manchester team and they have been great. There are many different options for surgery which if need be will be discussed with you. There is loads of info on here about surgery options and other ladies who have already had surgery will be able to help you with that.
I am happy to chat with you further, please feel free to contact me personally on the other site, not sure if you have registered but you can send private mail.
phpbbserver.com/breastcancer/viewtopic.php?t=1164&mforum=breastcancer
Hope that this helps and you get the info you want. Hope I haven’t waffled too much.
L xx
It’s very difficult Hi N,
I’m so sorry to hear of what you’re going through, its a difficult place to be and the not knowing makes it worse.
From what I understand (and I’m no expert) your Mum or your Auntie would need to be tested for the breast cancer genes and if one was found, then they could take a blood test from you and match it with your families. It does take a while as it was explained to me its like looking for a single spelling mistake in a 60 odd chapter book.
I lost my mum to breast cancer 17 years ago, then my Auntie (Mum’s sister) got it, in both breasts. My Auntie agreed to have the blood test done for me, and that took about 5 years to come back saying that there was a fault. Once that was identified my blood test was back after a month as they could match the gene mistake.
I had bilateral mastectomys exactly 3 weeks ago now with immediate reconstruction via a TRAM flap. I can honestly tell you that its the best decision I have ever made. I am getting back to normal and it really was’nt that bad at all, what’s a week out of your life for peace of mind and I feel now I can get on with life and watch my own daughter grow up and not have to worry. I visited my consultant last week who said that my risk is so small now, he feels that he does’nt need to see me and that I can contact him should I feel I am worried about anything. That was such a great feeling for me.
This site will be wonderful for you, I’m a bit older than you so I feel my decisions were maybe a little easier to make, I’ve had my family and had been sterilised before having my ovaries removed.
Good luck in whatever you decide, please keep in touch to let us know how you are getting on.
Take care,
Lynne xx
Thank you ever so much for taking the time to respond to me.
I am so scared and only at the beginning of my journey. I have an appointment on 31st August.
I am also meeting my Aunt to discuss this as she was a non-executive board member of the RMH at one point I believe. She also is heavily involved with other cancer trusts. She’s no expert but she will certainly give me some pointers.
I’ll be back to post after my appt and report what was said.
Thank you ladies
Nat xx