Newbie here

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

Postby Lola » Fri Mar 09, 2012 8:32 pm

Thanks Lisa..

Im contemplating going for the surgery at the end of the year but dont know if you can go public then opt to be transferred to the private for convalescance... I just couldnt share a room after flap surgery and reconstruction.. if i go through the private system it will be $4490 out of pocket.. Ive got my psych app on the 26th March and then my Gyne app later that day to book in removal of my ovaries..
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"

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Re: Newbie here

Postby Lisa8 » Tue Mar 06, 2012 11:48 am

Forgot to add that my surgeries in public system were free. I have private health now so looking at having my ovaries and tubes out in a private hospital. Not sure what out of pocket costs will be yet. Good luck!

Lisa8
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Re: Newbie here

Postby Lisa8 » Tue Mar 06, 2012 11:27 am

Hi Leah!

I grew up in Sale and Pacwood was my best primary school friend. Such a small world! I am happy to share my experiences with you.

Dx at age 30 while breastfeeding my son who was 9 moths old. Triple neg bc, 5cm and 2 pos nodes (2008). Mastectomy and axillary clearance.
Had dose dense AC chemo and taxol, followed by 5 weeks radiotherapy.
Genetic testing revealed positive for BRCA 1 and 2 mutations.
Had prophylactic mastectomy with immediate reconstruction with expanders in 2009.
Had implant exchange surgery in 2011.
Now 33 weeks pregnant. Can't wait for baby to arrive now!
Will have ovaries and tubes removed either next year or year after (36 or 37 years of age). Don't want to leave it too long because ovarian cancer scares me silly and killed my mum.
All treatment through the public system. I didn't have to wait too long for prophylactic mastectomy. It was 3 months/category 2.

If I can help in any way just PM me. Lisa :hugs:

Lola
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Re: Newbie here

Postby Lola » Mon Mar 05, 2012 7:34 pm

Thanks for all of your replies. Sorry I havnt been on here as much as Id like to be... Ive been so busy with DH away and the three kids!

Im off to see the plastic surgeon tomorrow in Melbourne so hopefully I will get an idea of costs then! Ive found out so far that the breast surgeon is about $600 out of pocket which is pretty reasonable!

Wish me luck!

ps I met the lovely Pacwood today and she was a lovely person and very informative. I hope i get to see her again soon and have a cuppa!
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"

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Re: Newbie here

Postby chrismelb » Sat Mar 03, 2012 7:56 pm

Seeing as your surgeries are prophylactic i have no idea re Medicare and costs. I had all my surgeries etc thru the public system but i had cancer first. I am sure you'll get a good idea from a breast surgeon and maybe a few phone calls. I wonder if it changes things cos you are a carrier of the gene? Good luck.
Dx 9/03 EBC
5/12 ABC bones-Herceptin,Tamox&Zometa
8/12 Liver mets-Abraxane,Herceptin&Zometa
6/13 Xeloda/Tykerb Xgeva
11/14 TDM1 Xgeva
1/15 Rads to tumour in head
2/16 Whole brain rads lepto. mets, continue TDM1
8/16. Navelbine, Herceptin
1/17 Neratanib Xeloda & Herceptin.

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Re: Newbie here

Postby kerryw1 » Sat Mar 03, 2012 10:19 am

Hi Leah

I'm glad you found this forum......it's a great source for sharing with real people who have had similar experiences. I can't offer up much in the way of your surgeries as I only had a lumpectomy but all of my treatment has been through the public system and I don't have too many complaints.

Cheers
Kerry
:heart:


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Re: Newbie here

Postby JudyB » Tue Feb 28, 2012 5:02 pm

Oh yes, very good advice Suzanne. I was sent to a private hospital and then silly me asked to go there for my chemo as well. My specialists both told me that it would all be free and as I knew someone else with the same insurance who didn't have to pay I assumed I wouldn't have to either. It ended up costing a fair bit although I did get a hell of a lot of it back.
DX Sep 09, LB mast with axillary diss. Grd 2 Ductal Carc. 50mm diam. Margins clear. 1/13 nodes. OR+ PR+, HER2- . FEC x 3, Taxotere x 3, RADS x 30, Tamoxifen, DIEP reconstruction April 2011, Femara 2013, Oophorectomy 2013.

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Re: Newbie here

Postby Suzanne_ » Tue Feb 28, 2012 2:18 pm

Meant to say, go through the public system for radiation ... I went private (unbeknowance to me at the time :gappygrin: ) and it cost a small fortune. Wish I had been given the choice but wasn't and didn't know any better :mad:

good luck
Suzanne
Op 15/3/11: Lumpectomy, lymph nodes clear. Results: HER2-Positive
Treatment: Taxotere & Cyclophosphamide 3 weekly X 4. Herceptin 3 weekly X 12 months. Radiation X 6wks. Arimidex 5yrs.

PHEW!!

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pacwood
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Re: Newbie here

Postby pacwood » Tue Feb 28, 2012 12:52 pm

Hi Leah

Welcome to the forum! Tammy has given me your number and I will be in contact with you soon.

Christie xo

Triple Negative BC.
RAD's x28 commencing 12/11. finished 23/1/2012!
Reconstruction time! Initial consultation February 2012 @ Peter Mac.

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Re: Newbie here

Postby Skettie » Mon Feb 27, 2012 10:14 pm

Hi Leah,

Welcome! Sorry you had to join us. 32 here. I'm not a likely candidate for either brca genes so didn't qualify for testing.

Can tell you that if you choose to go public for your treatments / surgery that your out of pocket expenses are likely to be very low. I was public for mine and I'm probably out of pocket from the very beginning to after treatment finished $400ish. I've swapped to private for my follow up appointments and the gap after Medicare is about $45 a visit. Reconstruction is my next stop, not certain on costs for that as yet.

You'll find lots of answers on here, it's an amazing forum :-)

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Re: Newbie here

Postby DancerMel28 » Mon Feb 27, 2012 9:37 pm

Hi Leah and welcome to the forum! I was diagnosed at 28 but after undertaking genetic testing was found not to be postive for Brca 1 or 2 so no answers for my BC as yet. Just wanted to say hi :wave: as I'm a fellow Sale girl. Hopefully there will be others along soon to answer your questions.

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Re: Newbie here

Postby JudyB » Mon Feb 27, 2012 9:16 pm

Hi Leah and welcome. I have just turned 50 so not in a similar situation to you. We have a couple of people from your area on the forum and they are closer to your age, I am sure they will say hi when they see your message.

You will get heaps of help here, I'm sorry you need us but very glad you found us. Keep in touch!

:hugs:
DX Sep 09, LB mast with axillary diss. Grd 2 Ductal Carc. 50mm diam. Margins clear. 1/13 nodes. OR+ PR+, HER2- . FEC x 3, Taxotere x 3, RADS x 30, Tamoxifen, DIEP reconstruction April 2011, Femara 2013, Oophorectomy 2013.

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Re: Newbie here

Postby Suzanne_ » Mon Feb 27, 2012 7:07 pm

Welcome Leah :hugs:

Sorry I can't answer your questions, but I know you will get so much support from the wonderful women here .. they helped me so much in my own early days here, not sure what I would have done without them :heart:

all the best
Suzanne x
Op 15/3/11: Lumpectomy, lymph nodes clear. Results: HER2-Positive
Treatment: Taxotere & Cyclophosphamide 3 weekly X 4. Herceptin 3 weekly X 12 months. Radiation X 6wks. Arimidex 5yrs.

PHEW!!

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Re: Newbie here

Postby Janette » Mon Feb 27, 2012 7:02 pm

Hi Leah and welcome to the forum. Great to see you post.

We do have some ladies with the BRCA genes, infact one ladies has both the 1 and 2. I'm sure you will hear from them soon.

You will get lots of support and information here.
Janette


Lola
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Newbie here

Postby Lola » Mon Feb 27, 2012 6:47 pm

Hi there! My name is Leah, Im 31yo and reside in Victoria with my husband and three children, two boys and a girl aged 5yrs, 3 yrs and 6 months. We have a strong family history of BC and I found out when I was 18 that I am a BRCA1 carrier. My maternal grandmother has had breast cancer and a masectomy, my mother has had a hystorectomy, my aunt has survived ovarian cancer and now her daughter, my cousin is dying of secondary cancer at age 37 after getting through BC and surgeries.

I have made the decision to go ahead with an ovary and tube removal mid year and later in the year a prophylactic bi lateral masectomy and abdoplastomy.

I would love to hear from anyone else who carries this gene and surgery. Mostly I am curious about thoughts and feelings going into the surgery journey and what medicare covers out of this!

Love to you all
Leah
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"


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