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refusing me preventative surgery..HELP!

12 REPLIES 12
Guest user
Not applicable

Re: refusing me preventative surgery..HELP!

Hi - I have a strong family history of BC (and other cancers) but no available relative for testing; however, I was offered (and accepted) preventive mastectomies having been confirmed as being at 'high risk' by genetics department - i.e. no 'proof' of there being a genetic link.

The NICE Clinical Guideline for 'Familial Breast Cancer' (CG41) outlines 'best practice' in this area - copies are available on the NICE website (www.nice.org.uk/CG041), and worth looking at if you can. It is clear about what should happen when. BUt briefly:

For women with
• a greater than 8% chance of developing breast cancer age 40–49 years
or
• a 30% or greater lifetime risk of developing breast cancer
or
• a 20% or greater chance of a BRCA1, BRCA2 or TP53 mutation in the family

the following steps are recommended:

Offer genetic counselling
• undertake personal risk estimate, if requested, and provide:
– information about uncertainties of estimation
– a written summary of consultation.

Following discussion of risks and benefits:
• offer mammographic +/– MRI surveillance if criteria met (see pages 9–10)
• if 20% or greater chance of BRCA1, BRCA2 or TP53 mutation in the family and there is an affected relative
available, offer genetic testing following two sessions of pre-test counselling
• offer risk-reducing surgery (mastectomy and/or oophorectomy), including pre-operative counselling (if no mutation identified, this should be following validation of family history or agreement with multidisciplinary team).

In my own case, my locat hospital did not offer immediate reconstruction, so my GP referred me to one that did. I was concerned about the funding aspect (I live in Wales, the hospital I was referred to was in England) but it was not mentioned as an issue.

I wish you every luck in achieving your operation. It's hard enough being in the position of making the decision, without having to fight for it to happen. But I do think the PCT would have a hard time defending a decision not to fund, if you fir into the criteria in the NICE guidelines

Fingers crossed!

Guest user
Not applicable

Re: refusing me preventative surgery..HELP!

Hi Alizzie

I too am a single parent and I know exactly what you mean. My kids didn't visit me once during my hospital stay (we all agreed this would be best). I was in hospital for a week, which felt like a lifetime to be away from them. I am in a new relationship but we don't live together & I do not have any family and relied totally on my new OH and friends. The hardest part was all the out patient appointments afterwards, before I could drive again. Do you have plans in place to look after your kids after your surgery, and someone to look after you when you first come home?

I hope your PCT see the sense in that they are potentially saving money by giving you preventative surgery.

Jackie.

Guest user
Not applicable

Re: refusing me preventative surgery..HELP!

Hi Jackie

Thanks for your reply .This is an option but pretty difficult as im a single parent with 4 kids and one has a physical disability so dont fancy bieng too far away. My father and brother are the only close relatives i have and dads getting on a bit and so wouldnt ask him to look after them, my brother runs his own company so is a little tied up, i would have to rely on friends but thats what friends are for eh!

Alizzie

Guest user
Not applicable

Re: refusing me preventative surgery..HELP!

Hi alizzie

I have had preventative surgery this year and I did not have any issues with funding. Maybe you could ask your genetics department to refer you to another PCT, if you dont mind travelling. I did not want to be operated on at my local hospital because I have worked there as a nurse, so I chose to travel another 40 miles up the motorway.

This is difficult enough without having to be involved in the polotics of funding. Good luck.

Jackie x

anon1
Member

Re: refusing me preventative surgery..HELP!

ostrich im menopausal and meno fairies stole my brain slipped cotton wool in there so cant think now. was going to log onto e-bay to see if anyone was selling brain cells he he think im an idiot xx

Guest user
Not applicable

Re: refusing me preventative surgery..HELP!

We can all see it silly 🙂 Look on our chat thread and I've explained it there, x

anon1
Member

Re: refusing me preventative surgery..HELP!

dot can u see message x

anon1
Member

Re: refusing me preventative surgery..HELP!

thanks dot xx

dotchas
Member

Re: refusing me preventative surgery..HELP!

Hi,
Just put the persons ID in the wee box above the text box that says "send a private message to (optional)
Then write your message ,only the person with their name in the box will be able to read the message.
HTH
Good luck
Dot
x

anon1
Member

Re: refusing me preventative surgery..HELP!

bear with me i will try a few things as i know im not allowed to recommend other things but i will try to do it x

Guest user
Not applicable

Re: refusing me preventative surgery..HELP!

Thanks for your reply lainey , not sure how to pm either as quite new to this too , maybe someone else can help us ?!

anon1
Member

Re: refusing me preventative surgery..HELP!

hi that is awful i am friends with a lady who doesnt know if shes brca but is high risk and had surgery. not sure how to pm u as i can give more details of who can help so could u adv me how to send a pm as im new to all this and i may be able to help love lainey xx

Guest user
Not applicable

refusing me preventative surgery..HELP!

i have just been told by my local hospital (frenchay) that they do not have a contract for my surgery so i will have to apply for something called exceptional funding. I have not had brac testing as all relatives that had bc and oc have passed away but have been told by a genetisist that i am high risk (my mother bi-lateral bc and her mother oc ) but now i have been refered for surgery i have been told i cant even see a surgeon as they dont think there is a contract for this operation and therefore it will have to go to the pct for exceptional funding. Is there anyone esle who has not had mutation confirmed and has had problems getting surgery or anyone who has had no problems ?... advice please!