Hi,
I am new to the forum. I have a strong famly history of breast cancer my Mother and her sister and her mother and sister. I am seriously considering a preventative double mastectomy and reconstruction. I am terrrified and have two small children I dont want them to suffer the loss I did, the cancer appeared in my Mother at 39. I dont want to sit and wait around for something to happen. I dont know where to start with this process but am prepared to go to the private sector. Any Advice would be so welcome.
Fiona
Hi Fiona
Welcome to the discussion forums, whilst you wait for the other forum members to reply with their support and advice you may be interested in looking at the BCC booklet called ‘Breast Cancer in families’ It can found by following the link below:-
breastcancercare.org.uk//docs/bc_in_families__final_12_june_08_layout_1_0.pdf
I hope you find this helpful.
Kind regards
Sam
BCC Facilitator
Hi Fiona
I have started down this process so I can tell you at least how to begin!
1st: Visit your GP to ask for a referral to a genetic counsellor. You do have to meet certain criterea to get this referral on the NHS but from what you say about your family history I think you will fit the bill. You can check this by looking up the NICE guidelines on such a referral. I found them on the internet - if you have any trouble locating them let me know and I will search for them again and post a link. I found it useful to take a copy of these guidelines with me to the GP to
sorry - posted this before I had finished typing! To continue…
…take a copy of the guidelines to prove to the GP that you should be given the referral - mine needed a bit of persuading!
2nd: I was sent a family tree style questionnaire by the genetic councellor to fill in at home and post back. It stated in the covering letter that it would take about 6 months for then to get back to me after receiving the completed questionnaire - if fact it took 8 months.
3rd: I was then given an appointment with the genetic councellor - this was another couple of months later. At this appointment I was officially given a high risk which then opened the doors to extra screening but also to preventative surgery. I expressed a strong interest in surgery at this point and was asked to come back for a further appointment and to bring my husband along to it - just to check we both understood the options. We also discusses genetic testing. As I have no living relative who has been affected by the disease, the usual test is not possible,but there is an option to have a less reliable kind of a test for about 2000 pounds. (Everything else has been NHS)
4th: Finally I was given my referral to the brest surgeon who I saw about a year after my initial referral from the GP. I have also been given the option of ovaries being removed but have decieded to shelve this one until I am 40. (I am 38 now).
5th: I saw the brest surgeon and then had a hideous month because he found a lump that he did several biopsies of before deciding it was benign. The feelings that I experieced during that period removed any lingering doubts over whether I wanted the surgery.
6th: I now have to wait for an appointment with a clinical psychologist before they operate to check I’m not just mad!
7th: I will have 1 further consultation with the breast surgeon to discuss reconstruction options and then hopefull have the surgery.
Gosh that was longer than I intended! But then again the process has been longer than expected too! I should add that I have met no opposition from the medical staff I have seen - the genetic councellors (in Oxford) and breast surgeon (in Reading) have been extremey helpful.
Hope this helps - Good luck!!
Sian
Just read my own post through and seen all the typos - sorry - I’m watching Jonathon Ross at the same time as typing…
Hi Fiona,
Welcome to the forum. I’m sorry you have this worry and I agree with sian, you should go to your GP and ask for a referral to genetics. You have a strong case so don’t be dismissed. If you have a living relative who has had bc then they could be tested for a BRCA mutation, if one is identified then you could be tested. Unfortunately if you haven’t got a living relative then you won’t be offered testing, however you could be referred for early breast screening and possibly ovarian as well. Try to go to the GP with as much information as possible, in my experience GP’s know next to nothing about genetics - my own admitted as much, try and find out if other relatives have had other cancers such as ovarian, prostrate and pancreatic and draw up your own tree to take with you.
Good luck, let us know how you get on.
Hi,
I have a strong f/h of breast and ovarian cancer.Good for you being proactive. Unfortunately if you carry the faulty gene[the chances are 50 %] your chance of getting breast cancer is nearly 80%. I was unfortunately not tested for braca mutations as i did not have any living relative with bc.Unfortunately I was diagnosed last year. If you can get genetic testing , and your relations have a known braca mutation[as there are several yet undiscovered], and if you are negative…then you dont have to get the prevention surgeries. If however you are positive…you can be more certain.I hiope that helps.There is a very good US website called ‘facing our risk’ which might be of use to you.
Hi Fiona
I have just had my second preventative mastectomy and reconstruction 2 weeks ago. Sian has explained the process so very well I wont repeat things. It has been the hardest decision I have ever had to make. To put ones self into hospital for major surgery when perfectly fit is just surreal. Having said that I have no regrets and I am so pleased I have been brave enough to do it, although I think it would take more bravery to do nothing.
Please be prepared for a long drawn out process, and also to have to sometimes chase up, pester and make a downright nuiscane of yourself to the medical proffession. There were times when I felt like giving up and that I was making too much fuss, but remember this is your future.
I found the forums very helpful but please keep an open mind. Everyone experiences stress and pain differently and I was very suprised at the difference betwen my 2 mastectomies/recons even though it was the same operation, the first being the worst of the 2.
Good luck in your progress and decision making. There is plenty of help and support here if you want it.
Jackie x
Hi Fiona,
The other ladies have explained everything very well. It is a long process, although in comparison to some I think mine has been a bit quicker. I have the BRCA1 mutation, I had a hysterectomy nearly 2 years ago and am going in next Sunday for double mastectomies. I am very nervous but am more nervous about getting cancer and it spreading. If you a really worried about it I would definitely suggest going to your GP and making sure he refers you.
Keep us posted on your progress.
Take care.
Cathy xx
Cathy
Please can I ask if your hyterectomy was as a result of discovering BRCA 1 mutation? Did you have your ovaries removed also?
Good luck for Sunday, do you plan to have recons?
Sorry to be so nosey.
Jackie.
Hi Jackie,
Yes I had it as a result of discovering the gene mutation and had my ovaries removed as well.
Am having reconstruction with expanders under the muscle and another operation a few months down the line to replace with permanent implants.
You’re not nosey at all, am happy to answer any questions or queries.
Take care.
Cathy x
Thanks for your reply Cathy.
I am currently contemplating ovary removal but hysterectomy has not been offerred to me. My main concern is the abrupt menopause, although I have been told I can have HRT. I suppose age is the biggest factor in the effects of ovary removal, I am 40 and completed my family.
Sounds like I have had the same recon method as you but I had permanent implants straight away.
I hope you are having a nice week with a few treats before you go in hospital.
Jackie x
Hi Jackie,
The option of HRT never came up, I was told when I went in I could talk to one of the HRT nurses after the operation to discuss options, but every time I mentioned it they couldn’t find anyone to talk to me so I just gave up in the end. I must say the hot flushes do take some getting used to, and you think they are getting better and fewer and then they come back with a vengance. I am 38 (nearly 39) now so was 37 when I had it done. As far as the bones issue they just told me as long as I had a sensible diet I would be ok and shouldn’t need supplements. I do think I might get some though cause my diet has never been sensible, chocolate all the way I’m afraid lol.
No treats this week I’m afraid. One of my kids goes away with school Friday morning so am busy sorting his stuff out and I don’t finish work until tomorrow (am being naughty and doing this at work!). Never mind will have plenty of time off work after to rest.
Take care.
Cathy x
Chocolate is good for you. Its official!!!
Good luck for Sunday and don’t rush back to work.
Jx
hi all, i was dx with bc at 38 then again in my other breast at 44. there are no relatives who have had bc but i guess i was lucky as they offered me genetic testing because i had both at a young(ish) age.
i was devestated to find i carried the brca1 mutation, they went on to test mum and dad but neither carried the gene therefore i am the first in the line.
my daughter was tested and got a positive result in january at the age of 21, she has opted for surgery and goes in on tues ready for surgery on weds double mastectomy with diep flap reconstruction, i am so worried as she is going to salisbury hospital and is over an hours drive away and as i will be staying at hers to take care of her two boys 4 & 2 i wont be able to get to see her daily.
i know she has made the right choice but it seems so unfair to even have to contemplate such a decision !!
anyway sorry i got a little sidetracked, my point in replying is that you dont nessecarilly have to have family history, this is such an unpredictable disease but fell that if you are in anyway concerned go to your gp and ask for a referall.
dawn xx