Hi all,
I’m after a little bit of advice, please bear with me.
I’ve not had BC but tested postitive for BRCA1 in August 2011, and my genetics counsellor immediatly referred me to breast surgeon.
I have met with my surgeon many times and everything is ready to go (pre op photos were done 2012, saw a psycologist 2012)
I had a date for surgery in April which was cancelled as they said my implants had not come in, but then they changed that to say surgery time had been taken. I havent had a new date since.
So 2 years since I have been referred and I’m wondering whether I should see if I can have the surgery elsewhere?
It’s causing me alot of distress since my cousin has been diagnosed aged 23 with BC last year. I’m contantly worrying daily now, and feeling very low.
Other ladies I spoke to that were going through the tests the same time as me have been post surgery for about a year now, so I’m wondering whether it’s post code lottery type of thing going on.
I’m 27 and have 2 young children.
Any advice much appreciated
Sam x
Whilst waiting for replies maybe you would like to talk things through with a member of our helpline staff who are there to offer emotional support as well as practical information. The free phone number is 0808 800 600 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 10.00 to 2.00.
have you thought about contacting PALS (patient liaison) at your local hospital. They basically deal with complaints and if somebody has been bumped off the waiting list for no good reason they can sort it out for You.
if you know of a surgeon in another trust you can request a referral for a second opinion but you wont necessarily get seen any quicker but your gp might know better about waiting times if hes referred others or perhaps you could contact them yourself to find out waiting list times before requesting referral.
this is totally unacceptable. I work in the NHs, and at the very least transparancy and communication should be a prerequisite! I would write to the chief executive of the trust as well as PALS (as per prervious post). Be balanced and not angry, but clear about how let dpwn you feel in what is clearly a very distressing situation. I’m sure that we all apreciate that medical emergencies happen and ‘elective surgeries’ will be cancelled, but your need is very valid non the less!
Good luck and hope it is resolved soon. You deserve it as much as anybody and prevention is far better than cure!
Thank you for you replies
I have been intouch with PALs for the 3rd time today.
I will be having immediate reconstruction using strattice as reccomended by my surgeon but what they didn’t tell me was that this had never been performed in this hospital before and that they didnt even have the equipment.
The only thing I was told was I may have to wait a few months for a request for funding to be put in.
Anyway, PALs have put my mind at ease today and told it’s looking like my op will be sept/oct time (I was told that last year so wont hold my breath!)
Sam im glad you have made some progress… might still be worthwhile asking if they know of other doctors who have done the procedure… was it you that chose this option or did they tell? it doesnt sound like their care is what i would be expecting. the surgery is a two-way thing and you should be having an experienced surgeon… especially at your age when you have your whole life ahead of you you want the surgery to actually look good.
,aybe that second opinion snt a bad idea and may well be quicker if your own unit keeps fobbing you off.
have you been on the brca umbrella website which is a site setbup in the uk for brca carriers… trhey have a very useful reconstruction gallery and discussion groups on the different recons available. brcaumbrella.ning.com/
They had reccomended this reconstruction and sent me away to think about it v’s expanders which was my first idea.
They had brought in the oncoplastic surgeon, a few months before I had been referred, especially to perform this procedure in the hospital so they didnt have to refer patients elsewhere.
At one clinic appointment,Sept 2012 ish, where they told me ‘due to the state of the nhs’ I’d have to wait, I asked if having a different recon or delayed would help in getting this sorted quicker, the answer was no.
Im really hoping they are true to their word this time, I really cant wait to see the back of them and my ticking time bombs.
I have been on brca umbrella for sometime and the ladies are lovely on there. I have also been intouch with Wendy and followed most of her advice but as you can tell it just goes around in circles. I dont feel I can really argue with the hospital when they tell me they are bombarded with BC patients.
I will let PALs contact them on my behalf from now on, can’t fob them off like they do to me.
Dear Sam,
I really feel for you and all you have had to go through. I had to wait 7 months from decision to surgery and like you opted for the strattice and immediate implant. I am 4 weeks post op. I do not know where in the country you are but my surgeon (in Swansea) has performed this particular procedure 6/7 times (has done many other types of reconstruction) and is a specialist breast reconstructive plastic surgeon. As I understand it (my mum used to be a PALS Manager), you have the choice of 3 hospitals through the ‘choose and book’ program – it is your right. If I were you, I would research or ask on this forum for surgeons in your area that have performed this type of surgery before. Then request to have your surgery through the choose and book system with that hospital/surgeon. You would have to go to your GP, express your concerns, and discuss your terrible experiences to date and ask him/her to do a new referral to the desired hospital – check out this link for more information: chooseandbook.nhs.uk/patients/whatiscab
One on the most vital elements of undergoing this op is to have faith in your doctors; you have to be able to feel confident that they know what they are doing. You do have rights to good care despite the ‘state of the NHS’. Not all hospitals are running the way yours has, not all of the system is broken.
On another note if you want to ask any questions about this type of surgery etc. just send me a private message and I will happily share my experiences and knowledge. I am 34, BRCA1 and had no BC before I opted for my surgery.
All the best and I hope this helps.
Mema
Thanks Lulu but I didn’t name a surgeon or hospital. As for Sam she could simply name her rough location and then people could personally message her to recommend a surgeon or hospital. Is that what you meant?
xx
