BRCA1 / Category 3 / Waiting list...is this normal?

Claudia7477

Hello All, I'm hoping for some advice and feedback.  After being diagnosed with HER2 positive BC, I was treated at St.Vincent's public (Melbourne).  I was sent to Peter Mac, genetic clinic where I was found to carry BRCA1.  I was told to finish my treatment (radiation) and then to return to Peter Mac to deal with the results.  Six months later I had my ovaries removed.  Another six moths later I was added to the waiting list for DIEP surgery, despite the fact I had made the decision to have the surgery.  Now 18 months later I am still on the waiting list, to be told that the plastic surgeon is on unplanned leave and everything is further delayed.  As I understand it, I can: be referred to another plastic surgeon at the Peter Mac, get a referral and ring around other public hospital or go private (jeez...why didn't I think of that one 18 months ago?)

Has anyone else had similar experiences?  Is this a Peter Mac thing or just the way the public system works?  

Keeping_positive1

I am told that the waiting list can be two years or longer in the public system.  It moves very slowly indeed, sorry I can't be of more help.  There may be a way around it, hopefully a member will come online and give you some more succinct advise than I can offer.  
All the best, it sure does suck having to wait that long, afterall this is Australia not a third world country.

primek

My surgeon said to me, whether you carry a gene or not currently your treatment is just the same. 
So ovaries are gone which is great.
Remember this is prophylactic surgery and at this time doesn't pose an immediate risk. You would still be under breast surgeon and oncology review so it's not like you aren't being reviewed.
But it wouldn't  hurt to make the phone calls you suggested  and also ask if replacement surgeon has been hired to cover leave.

youngdogmum

No, it’s normal. I’m a cat 3 for DIEP in Queensland. I have been told I might get done slightly earlier than others given my young age under 30 but ultimately it’s not essential surgery and this is public health care in Oz. It’s a great system for life threatening things.
however my young friend I met at chemo came back brca2 during treatment and has had her implants and bilat mastectomy done already after being referred in August, I think it was only 2 months wait. Its probably the need for plastics as opposed to just breast surgeons being DIEP.
if you have private cover maybe get some quotes to see your out of pocket and decide from there?

Keeping_positive1

All the best @Claudia7477 and I hope you can get a referral sorted out soon.

strongtogether

All the best and hoping you get your surgery done asap. 
I just wanted to say that we are lucky to have our public health system, it sometimes takes some time but the services really are excellent. 
All the best.

Christine_66

hi..
I will be having a bilateral mastectomy in the coming months and went to see a private reconstructive plastic surgeon to get a quote to have a Tram Flap procedure and was quoted $13500 for his services and then the anaesthesia bill would be separate. This cost would be roughly $800/hr for a 10 hour operation. 😱😱😱

I have decided to go on the public waiting list here in Brisbane. Most of these procedures are done at the Mater and the surgeons are all very good! This was the advice given to me by Choices (cancer support dept) at the Wesley Hospital here in Brisbane. 

Who knows by the time my number comes up...may have decided to not go down that path??? Time will tell 🤔🤔

Christine x

iserbrown

https://onlinenetwork.bcna.org.au/discussion/comment/182930#Comment_182930

@Christine_66

Not sure what area you are from but the link above will give you support groups 

Christine_66

I am in the Western Suburbs in Brisbane...thank you ❤️

FLClover

@Christine_66 I think that’s a really good idea. None of us are comfortable with the idea of losing our breasts, but once they’re gone it might not be as scary or distressful as you initially thought. Plus, waiting for a public surgeon will def give you that time to really think about what you want without the pressure, so you can know you’ll be comfortable with your decision. You can explore all the options and talk to women who’ve had the procedures you want done. In the meantime, you can wear prostheses of it’s too unnerving to go out flat. Many many options. Have expanders put in if it’s possible at the time of the mastectomies, and half the work will be done. I think it’s pretty unfair having to pay that much privately. 

Cath62

About to see a geneticist to see if I should be tested for Brca gene. I have already had lumpectomy, chemo and radium. If positive I will remove overies and consider what needs to happen re breasts. Video appointment with the specialist at the Wesley on Friday 15th given Brisbane lockdown due to uk strain of covid19.

FLClover

Good idea @Cath62, good luck with that. If you go ahead, i hope results are negative 🤞

Locksley

@Cath62 Good luck.  Hope all goes well for your appointment.

Christine_66

Hi ladies,
just a little update from my last post. Saw my surgeon yesterday and my bilateral mastectomy is booked for 20th April. I’m able to finish my weight loss program (end March) and continue with my swimming and gym programs to be as healthy as possible for my operation. While I will be anxious as this day comes closer, I am feeling a sense of relief today finally making this decision.  It actually feels like a weight has been lifted 🤗

FLClover

Fantastic @Christine_66, it’s good when you know what you want 😊