Preventative bilateral mastectomy & reconstruction Brisbane

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fitchick
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Re: Preventative bilateral mastectomy & reconstruction Brisb

Postby fitchick » Thu Jun 27, 2013 2:21 pm

Hi SiranthaJax.
I had an LCIS diagnosis in 2010, and after consulting with a breast surgeon, decided to have a bilateral Mastectomy.
Our family history of breast and ovarian cancer made the decision easy for me, as I had already had years of mammograms and breast lumps and although decades older than you, just wanted to minimise the risks (my mother died of ovarian cancer at 41, her mother died of breast cancer at 40, and my younger sister had IDC diagnosed several years before me). After her diagnosis, we both had oophorectomies following genetic counselling, but for various reasons we haven't been tested for the BRCA genes, but I feel we would probably be positive anyway.

I have never regretted my decision, and hold my breath every time my sister goes for her annual check (she had a single mastectomy).
I have chosen not to have reconstruction at this stage, but certainly would if I was your age.

Re the surgery or not. All I can say is, research all the options carefully, and you seem to be doing that already. It would also be worthwhile to ask your surgeon about the new proposal for the NHS in the UK to offer tamoxafen to all women at high risk (including BRCA and triple negs) as a preventative measure. I read about it this week online, and they seem to be pretty excited about new research showing it would be worthwhile.....just a thought, and will certainly talk abut it with my own daughters.

Re the surgery. I will send you a PM with some other options and recommendations in Brisbane, but am about to go out, so will do that tonight.
However, it might be worth asking your surgeon if she operates in the Public System. As Janette says, you don't always have a choice of surgeon in the Public System, but I do know that my Breast Surgeon at the Mater Private also does a list at Mater Public.
Maybe also worth exploring having the surgery in the Public System, and postpone the reconstruction for a later date when you have considered all options and maybe saved for the Private Hospital Gap, if that is what you wanted (as a public patient, it might be very difficult to organize mastectomies and reconstruction together, especially with Queensland Health budgets feeling the pinch at the moment).
Ask lots of questions here, you have certainly come to the right place to hear about our experiences.
Early breast cancer (LCIS). Bilateral mastectomy Dec 2010.

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Re: Preventative bilateral mastectomy & reconstruction Brisb

Postby Janette » Thu Jun 27, 2013 12:20 pm

Janette


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Re: Preventative bilateral mastectomy & reconstruction Brisb

Postby SiranthaJax » Thu Jun 27, 2013 11:10 am

Thanks Rosa.

Hi Ruth1, I haven't been to a familial cancer clinic. Just the geneticist to get my result and then a specialist to discuss my options. She did say that I can have an MRI and Ultrasound every six months however in my opinion, that is to long a time span for something to go undiagnosed and at the moment I feel like I have a pair of ticking time bombs attached to my chest. Maybe a bit dramatic, but that's what it feels like.

Jezza, My mum is in the same boat as me and found out just last year that she had the mutation and has had her ovaries and uterus removed. We had a look into her family tree and it turns out that of her five female cousins, three have passed due to breast cancer and two are still fighting it. Of my three other sisters, two have also found out that they have the defect, so I definitely have a lot of support family-wise and my partner and friends have been great. One of my sisters is further along the track and booked in to get the bilateral mastectomy and reconstruction next month however she is overseas, so I can't go through the same people as her.

Hi Schoolteacher, the specialist I went to mentioned the tram flap method however she said that my frame is too small to do it that way. It would have to be either direct implant or expanders. From a lot of the reading I have been doing I have heard that it is cheaper to go private through the public system. That way you can still have your choice of specialist and surgeon without the exorbitant fees.

Cheers,
Sirantha

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Re: Preventative bilateral mastectomy & reconstruction Brisb

Postby schoolteacher » Thu Jun 27, 2013 7:44 am

Good luck with your research :wave: you are being very proactive. I had a Tram flap reconstruction, unilateral, two years ago. I don't think I would recommend it for a young person like yourself. It is huge surgery and can cause back problems. It was done through the public health system.
There are huge costs associated with reconstructive surgery when you go private.

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Re: Preventative bilateral mastectomy & reconstruction Brisb

Postby jezza » Wed Jun 26, 2013 10:05 pm

Nothing too personal here! Yes..I had expanders put in at the time of my mastectomies...then fills to expand the skin and then implants. Mine have lasted over 20 years so pretty happy with that.

26 is very young to have to make these sort of decisions but its wonderful that research has come so far that testing is available and options can be discussed....but still...tough time for you. I hope you have lots of support from friends and family.

Please feel free to ask anything else. As others have said we can't give medical advice but we can certainly pass on our experiences...and between us all we have experienced a lot!!

xx 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)

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Re: Preventative bilateral mastectomy & reconstruction Brisb

Postby ruth1 » Wed Jun 26, 2013 8:16 pm

Hi Sirantha, sorry that you are faced with tis decision. I have had a bilateral mastectomy and 1 side was prophylactic due to family history. I have just received genetic test results back and its inconclusive. I have a 15 year old daughter which concerns me greatly. The Familial Cancer Centre said she wouldn't need to make decisions before around 30. I'm sure you would have had this counseling too. I had immediate reconstruction with implants but there are other more sophisticated reconstruction methods. The reason I chose implants was because I am older and I figured if I had any recurrence it would be very easy to remove the implants for treatment. If I was younger I would have definitely looked into the Diep and trans flap methods. If you go online you can get plenty of info. The public system might prove a problem doing this though and I think it would be costly but no harm in asking questions. Wish you all the best with this. Ruth
Dx IDC 2cm grade 3 ER/PR pos. DCIS grade 3, fam hist metastatic BC. Bi lat mastectomy, FEC x 4, surgical revision pending. AI x 5 yrs Femara

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Re: Preventative bilateral mastectomy & reconstruction Brisb

Postby The new girl » Wed Jun 26, 2013 6:01 pm

:wave: hi Sirantha, I cannot help with your questions, but I wish you luck in your decision and good health for the future...Rosa

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Re: Preventative bilateral mastectomy & reconstruction Brisb

Postby SiranthaJax » Wed Jun 26, 2013 5:54 pm

Apologies Janette, I won't let it happen again. Any help I can get is great, especially other people's experiences.

Hi jezza. I am currently 26 and as I said just recently found out. I know it's a young age, but I don't think the risk is acceptable to prolong getting the operation done. Obviously dependent on the health care fund, I aim to get it done as soon as possible.
If you don't mind me asking, did you have a reconstruction? If so, what kind did you get. Sorry if it's too personal.

Cheers,
Sirantha

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Re: Preventative bilateral mastectomy & reconstruction Brisb

Postby jezza » Wed Jun 26, 2013 5:12 pm

There are quite a few members on here with the BRCA gene...not sure about the Brisbane area. It certainly is a big decision. I have had a prophylactic mastectomy because of family history.

How soon are you wanting to get your mastectomies done? I'm not sure how old you are. I know you would have to be a member of a private fund for some time before you could claim and you would still be out of pocket. It certainly is wise to do your research. Good luck with it all and I hope some Brisbane members can PM you with some advice,

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)

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Re: Preventative bilateral mastectomy & reconstruction Brisb

Postby Janette » Wed Jun 26, 2013 4:21 pm

Hi Sirantha and welcome to the forum.

We generally ask members not to mention Drs names but in this case I will allow them and ask that members send any information through the private message system to you. As you can understand we can only relay our experience.

I've had bilateral mastectomies and implant reconstruction under the public health system and apart from waiting lists the PH system has been great. Lots of us have had different types of recon, some private and some public so you should get a few opinions.

With PH in NSW, you don't usually have control over who actually does the surgery even though you may be on a particular Doctor's list. Best of luck, I hope what you decide goes very well. Mastectomies are not as bad as most of us expect it to be. :hugs:
Janette




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Preventative bilateral mastectomy & reconstruction Brisbane

Postby SiranthaJax » Wed Jun 26, 2013 3:22 pm

Hi All,

I've just recently found out that I have the BRCA2 mutation and am looking to get a preventative bilateral mastectomy and reconstruction. Has anyone in the Brisbane area had this sort of thing done and if so, is there anyone that you would recommend.
I have so far seen Dr Jenny Gough who performs the removal and heard that she works with Dr Eddie Cheng.
Understandably, I would like to see a few more people so that I can be sure that I have heard all of my possible options and am going with a well reputed specialist and surgeon.

On a side note, I haven't got private health but am looking into it at the moment. Any advice on this would also be appreciated.

Thanks in advance xx


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