High risk prophylactic mastectomy questions

For those with a High Risk of Breast Cancer -BRCA1 and BRCA2 Genes, Family History, LCIS
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fitchick
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Re: High risk prophylactic mastectomy questions

Postby fitchick » Tue Feb 28, 2012 10:50 am

Welcome Phoenix, You have come to the right place for support and advice for such life changing decisions. As others have already told you, costs are such an important consideration. There are lots of us on this site who are/have been high risk and have decided on prophylactic surgery, so ask as many questions as you want. Hope all goes well in your quest for good health.
Early breast cancer (LCIS). Bilateral mastectomy Dec 2010.

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Re: High risk prophylactic mastectomy questions

Postby jezza » Mon Feb 27, 2012 8:53 pm

As Sue said....get in touch with your Drs surgeries. You are entitled to a "quote". Different Drs fees can vary enormously and you can be really out of pocket if you don't "do your homework".

You have surgeons, assistant surgeons, plastic surgeons, anesthetists etc to consider as well as pathology and hospital accom.

Good luck with it all. You are doing the right thing by asking questions.

jezza
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)

SueM44
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Re: High risk prophylactic mastectomy questions

Postby SueM44 » Mon Feb 27, 2012 8:42 pm

Hi Phoenix
When I went for the initial consult with my plastic surgeon his receptionist was able to advise on fees including which ones I had to pay up front, and called the anethaistist to get his fees. She gave me a print out on the gap and how much I would have to pay out of pocket all up. Both the breast surgeon and the plastic surgeon had assistant surgeons who also charged. I was out of pocket about $4500.
So maybe contact your drs's rooms as they may be more helpful than medicare.
It seems like a lot to be out of pocket but I have had 6 after care visits since my operation for 'pump ups' and checks and haven't had to pay anything.
Sending you hugs and am sorry you have had to join us here but you will find lots of info on this forum
:hugs:
Sue :)
dx Jan 2010 7mm IDC Grade 2. ER+ PR+ HER- had WLE and SNB in Jan followed by 30 rads. Hysterectomy May 2010. Genetic testing revealed BRCA 2 September 2010
Bilateral Mastectomy & Immediate Reconstruction Nov 2011

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Re: High risk prophylactic mastectomy questions

Postby Lola » Mon Feb 27, 2012 6:57 pm

This is really interesting as I am a BRCA1 carrier and going to have my ovaries and tubes removed mid year followed by a prophylactic bi lateral abdoplasty at the end of the year. I am going through Prof Bruce Mann in the city of Melbourne and using a plastics surgeon named Mr Dean Trotter. I am fully covered with no excess and I called Medicare today and they cant tell me what they can pay. Private health cover anything to the scheduled fee and my accommodation at Francis Perry house but I have no idea what my out of pocket expenses are going to be and what medicare will cover.
me 31! Brca1 Carrier
DH 34
DS1 5
DS2 3
DD 7 months and still feeding!

"some people appear bright until you hear them speak"

SueM44
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Re: High risk prophylactic mastectomy questions

Postby SueM44 » Tue Dec 13, 2011 5:38 pm

Hi
I have just had a double mastectomy with immediate reconstruction.
The order of events I did things are:
Found a lump
Diagnosed with bc Jan 2010
Lumpectomy and radiation finished April 2010
Hysterectomy May 2010. This was done due to the type of bc I was diagnosed with- and on advice from my oncologist. She initially only suggested only overies out but after discussion I decided to have a full key hole hysterectomy and she agreed this was best for me.
Genetic testing completed in September 2010 and blood test repeated December 2010 . Braca2 positive.
Double mastectomy with immediate reconstruction- tissue expanders followed by implant exchange surgery in the future and possible nipple reonstruction.

I have private health insurance and did most things privately including the radiation. This was my choice because it enabled me to do things in my time frame and choose my hospital.

As you will see on the forum there are so many different treatment plans depending on your 'team', disgnosis and your personal opinions. Also nothing happens quickly even if you stamp your feet........ :ouch: the one thing I have had to earn is patience. :biggrin:
My team were all referred by my gp after I found the lump. Saying that i had defiantly discussed the possibity of genetic counseling with my gp and I had a referral to a gyno when I was diagnosed.

I have no idea how much all that has cost me as I just paid it and then took my bills to Medicare and they did a duel claim which was directly debited back into my account. I did initially try to keep track but it spanned a few calendar years so I gave up.I think there will be two options as there are for everyone.
Private- you pay and claim back, some for Medicare and some from your health insurance.
Public - no out of pocket expenses.

You really need to find a gp to refer you to a surgeon. I pretty sure that is the only you will get some one on one discussion time with them, regardless wether you go private or public.
A gp will also refer you for genetic counseling. The first part of the process is a huge form in which you need to document your family tree with types of cancers, dates of diagnosis, age of diagnosis, deaths and hospital names for treatments. After filling in form they will contact you for a discussion. This can take months. In this session is an oncologist ( the voice of reason) and a genetic counselor. They have checked the information you have provided and I signed a consent form on who could be privy to this information. Then you have a big discussion about what you will do with the results when they come back. Only then did I have a blood sample taken and got a call for results three months later. I then went back, had another counseling session and had the blood test repeated.

Hope all this info has helped.
Whatever you decide I wish you well on your journey.
dx Jan 2010 7mm IDC Grade 2. ER+ PR+ HER- had WLE and SNB in Jan followed by 30 rads. Hysterectomy May 2010. Genetic testing revealed BRCA 2 September 2010
Bilateral Mastectomy & Immediate Reconstruction Nov 2011

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High risk prophylactic mastectomy questions

Postby Fossyg » Tue Dec 13, 2011 1:34 pm

Hi. Sorry if these questions have been asked before. To the ladies that have had preventative mastectomies to reduce risk - what, if any, proof did you have to provide to convince your surgeon to perform surgery ? Did you have to show your genetic results, death certificates of relatives (bit extreme) etc. Was it difficult to convince your surgeon ? Did you have any that refused or have any relatives/friends that were unsupportive ? Did you get any rebates financially and if so, again did you have to show evidence ?

I'm a bit concerned about handing over documents with genetic info to insurance companies


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