BRCA 1

For those with a High Risk of Breast Cancer -BRCA1 and BRCA2 Genes, Family History, LCIS
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Re: BRCA 1

Postby Janette » Thu Dec 19, 2013 11:07 am

Janette


alexandra87
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Re: BRCA 1

Postby alexandra87 » Thu Dec 19, 2013 9:04 am

Hi everyone :)
Thank you for your replies.
Turns out the doctor I was referred to was at a private hospital, I have called my doctor and asked for a referral to someone in the public system.

Our local hospital doesn't have a breast clinic but I think there may be one in rockhampton, I will ask my doctor.

I do have private health but I am not sure what it will cover as I am unsure what preventative surgery would fall under and it doesn't state that preventative surgery is covered or not covered.

I would like to get an MRI through the public system which I have been told I am able to as soon as I can.

I got a bit worried when I realised my referral was for a doctor at a private hospital, I know how important health is but I just don't have thousands of dollars spare so I am hoping to go in the public system.

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Re: BRCA 1

Postby Tracey Gibney » Wed Dec 18, 2013 11:54 pm

Alexandra is there a public hospital with a breast clinic near you? If so I would contact them.
EBC 94 aged 34. Mastectomy CMF, tamoxifen. Mets 07 brachial plexus, supra clavicular node, sternum. Treated with AI's Rads x3 Ooph 09. 2014 met to chest wall,surg, rads. 12/14 Multiple bone mets, rt axillary nodes further recurrence chest wall. Failed on Faslodex. 8/15 Ibrance

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Re: BRCA 1

Postby jezza » Wed Dec 18, 2013 6:00 pm

Never be afraid of saying that you can't afford it. You were quite within your rights to ask your Dr. if there was some way you could get advice from the public system. I don't know where in Qld you are and whether there is somewhere closer where you could go.

It sounds like you have been referred to a private Dr. Therefore if you went ahead with surgery and recon further costs would be involved...even if you have private health insurance...do you? If you went private with no insurance the costs would be huge. You certainly need to start ringing around. Also having preventative mastectomies may have different rebates...I really don't know.

I just googled and here is the Qld cancer support page with a phone no. Start with them. Let us know how you get on as your experience may be of help to others.

https://www.cancerqld.org.au/page/need_ ... /helpline/

Hope you get some helpful advice there.

jezza xx
Dx Jan. 1992 9mm Grade 3 IDC node neg. LB mast. Prophylactic RB mast. 6 months later. No chemo. No rads. Saline implants. 22 years NED. (No Evidence of Disease)

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Re: BRCA 1

Postby Janette » Wed Dec 18, 2013 4:13 pm

Hi Alexandra,
You could perhaps call the Cancer Council and ask for their advice. There may be a health information line in Qld, there is one in NSW and some have nurses giving advice I think.

Certainly some of our Qld members might be of more help. Often a Breast Cancer Clinic is under Public Health, I don't know if there are any where you are.
Janette




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Re: BRCA 1

Postby alexandra87 » Wed Dec 18, 2013 3:38 pm

Can anyone tell me who I can contact about getting more information?

My doctor referred me to a doctor in Brisbane which is over 1,000 kms away and $200 for the first consult.

I don't have lots of money and flights and $200 an appointment is a lot of $$ to have to spend just to see the doctor and find out what I should do, is there someone I can see in the public health system?

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Re: BRCA 1

Postby Tracey Gibney » Mon Dec 02, 2013 8:41 am

Alexandra I don't know if you have seen it but 60 minutes did a story called Breaking the curse about two young woman and there intention to have preventative mastectomies. You can watch it by going to their website. It is a very difficult decision you face. Also like many things it is not a hundred percent guarantee as breast cancer can occur in even the very small amount of breast tissue that is left behind. There is also a website called Pink Hope that I think would interest you
Tracey
EBC 94 aged 34. Mastectomy CMF, tamoxifen. Mets 07 brachial plexus, supra clavicular node, sternum. Treated with AI's Rads x3 Ooph 09. 2014 met to chest wall,surg, rads. 12/14 Multiple bone mets, rt axillary nodes further recurrence chest wall. Failed on Faslodex. 8/15 Ibrance

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Re: BRCA 1

Postby schoolteacher » Sat Nov 30, 2013 8:00 am

We did have a member who did a tv show as she has the gene and her daughters were filmed discussing the need for prophylactic mastectomies.
Another family ( I think) showed young women preparing for surgery.
If any doctor/surgeon refused you I would get a second and/or third opinion. It is your life at risk. BCNA may have more information for you.
:hugs:

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Re: BRCA 1

Postby alexandra87 » Wed Nov 27, 2013 8:08 am

Hi,

Thank you both for your replies.

I had genetic counselling before I took the test and when I got the results, it would be good to speak to someone who has had a mastectomy for the same reasons but. My younger sister is also affected by the gene mutation and is in the same position as me.

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Re: BRCA 1

Postby Janette » Tue Nov 26, 2013 9:57 pm

Hi Alexandra,
I'm very sorry to hear you have been diagnosed with the BRCA 1 gene. I doubt that your young age would be an issue in having mastectomies, under the circumstances, but I don't really know. Under the Public Health System there is little to no cost for masts and reconstruction generally.

Have you been offered any genetic counselling? Perhaps the peer support program from the Cancer Council could link you with another person who has had the surgery for BRCA. Hopefully others on the forum will be able to answer from experience. :hugs:
Janette




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Re: BRCA 1

Postby The new girl » Tue Nov 26, 2013 9:49 pm

:wave: hi Alexandra,I cannot answer your questions but I hope someone else here can, all the best....Rosa

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BRCA 1

Postby alexandra87 » Tue Nov 26, 2013 9:32 pm

Hi,

I recently got my test results back and have the gene mutation BRCA 1, I am 26 and have never been diagnosed with breast cancer.

I am thinking of getting a preventative mastectomy but am wondering will I be refused because of my age and the fact I haven't had children yet, I still plan on having children but am happy not to breast feed them. Also what sort of costs are involved in the mastectomy and reconstruction?

Thanks


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