Going public - will I have any choices

southernsun · March 18

Hi all - I received a call last week telling me that my biopsies show cancer in one of my breasts. It's not a total surprise as there is a very strong family history of it - I always felt like a ticking time bomb. Regardless, I feel like a bit of a zombie at the moment, the situation is consuming me. The shock of it and not knowing what is ahead is awful.

I have an appointment with a surgeon at a public hospital tomorrow. I suspect they will recommend lumpectomy with radiation, but I would prefer to just have a bilateral mastectomy and be done with it. I watched my mum go through 5 years of anxiety wondering if it was coming back. Ideally I would have the immediate reconstruction, but I presume that wouldn't happen in the public system.

Has anyone gone through the public system and been given choices as to the treatment they have, or do you have to go private to make these choices? How can I find out what it would cost if I was to fund it all ourselves? Just wondering if we can find the money, how much would we need?

rachosk64 · March 18

Hi southernsun, my name is Rachel and I had breast cancer 25 years ago and went via my private health insurance. I needed a lumpectomy, then had chemo and radiation.

My dear friend was diagnosed with metastatic BC last year and went via the public system here in Qld.
She had to have her breast removed, which was her choice and recommended, but they were unable to provide her with a bilateral mastectomy, given that the cancer was only present in 1 breast. They would not do both under the public health system at the same time. She was of the same opinion as you, she did not want to have the other one there thinking she might develop cancer in the other breast in the future. She just wanted them both removed.
She was going to see if she could get on a list for elective surgery for the other breast. The other option for her is to join private health, wait the 12 months, and get the surgery done that way.
I am not sure of the requirements in your state, but if you are going public, I am thinking it might be the same outcome.
I am sure this is a very stressful time for you with the recent diagnosis, so reaching out as you have done may get you some varying options and advice that I hope will help with your decision.
Regards, Rachel

Mareealso · March 18

Hi Southernsun, So sorry to hear of your news but know that there is a lot of experience in this site to help you. I went through the public system in Victoria and my sisters also were treated in Victoria's public system. The 6 of us ( we all had b.c. ) were given varying advice (lumpectomies, mastectomies and bilateral mastectomies) and differing follow up treatments. The best advice I can give you is to be very assertive in what you wish to occur and where. Go into appointments with another cool headed person who knows what you want to happen and that way, if you are a bit shell shocked, they can step up and say what you want. Push for your own wishes to be heard and ask your medical team to explain the decisions they make about you and why they think those decisions are in your best interests.Wishing you positive thoughts for your next steps.

Mareealso · March 18

Follow up info...tests for familial cancer are free or not expensive at all at familial cancer centres if you can show a strong trend. I'm BRCA2 positive and the advice we (family) were given was double mastectomies plus removal of ovaries and fallopian tubes. Didn't have to fight for it, sisters who had cancer earlier (1996) were told lumpectomy, single mastectomy was good enough....it's not what we were recommended now..

MrsMorrisey · March 18

I am going through the public system as I don’t have private health insurance and I live regionally so no choice of drs but have been quite fortunate so far.

My med onco I have to pay $225 then get $125 back. Surgeon consult is $110 and $85 back but no charge for surgeries.

Radiation onco is free due to cancer centre being at the hospital under NSW health.

Definitely take a trusted person with you to your appts to write everything down.

If you are in the city you’ll probably get the opportunity for a second opinion if needed.

I didn’t because we don’t have enough drs but they were okay and didn’t feel the need.

Do heaps of research on all your options. Double mastectomy is a massive op but if you think it’s right for you then definitely be your own advocate. One thing I have learnt is you need to be clear in your wishes but keep options open and room for change if need be.

Best wishes to you xx

Blossom1961 · March 18

Every state is different, which is very stupid. I am in Vic and went through the public system. My surgeon gave me options inc double mx and immediate recon. Since Covid, things have changed.

First thing, Talk to your surgeon and explain your anxiety. If however, your Dr will only do a single, you can go on to the public list after as needing the other removed due to mental anxiety.

I paid nothing for any of my treatment or consults or surgery

arpie · March 19

Wow - well done @Blossom1961 - that's the first time I've heard of public patients being able to do the double mx & recon without going on a wait list!! So has that stopped now, since covid?

Bummer

I am/was public for both my Med and Rad Oncs ... and never paid a penny (including all my Rads sessions.)

I generally see/saw the same Med & Rad Onc over the last 5 years unless they were on holidays or maternity ... so had full continuity with them.

I went private with my surgeon tho (just to get it done as soon as possible & with the surgeon of my choice) & there were charges with each visit as well as a sizable 'gap' in the cost of my surgery (vs private health care.)

southernsun · March 19

Thanks everyone for the comments. This is all so much to take in. Our closest public hospital is 2 hours away and isn't the best, so Im even more nervous. Having said that, the surgeon and breast care nurse were really good and didn't try and rush me.

At this stage, the lump is only 7mm and there is no indication of lymph node involvement, which of course can't be confirmed without surgery. As expected, they have recommended a lumpectomy, 4 weeks radiation and probably the anti-hormone tablets as well. And because of my family history, I will get the genetic testing done.

I had in my mind that I would rather have my boobs removed and just have to recover from the surgery, than have to have continual treatments that may or may not work and I feel like rubbish the whole time. I have read some terrible accounts of the side effects, radiation, hormone treatments and chemo have me way more scared than the operation.

Anyway, I think I have decided to do the lumpectomy, and the radiation. At the same time, Im going to sign up for private health so that in 12 months time I can choose a different path if I still feel that way.

And so the journey begins.

Afraser · March 19

@southernsun

Good choice! These decisions are best taken with plenty of information and a stress free environment (if possible!) to make your mind up. I had little choice about a mastectomy, have never regretted it, but a bilateral
mastectomy (and reconstruction if you go
that way) is major surgery. You may still want to do it when you’ve had time to think, consider the results of your genetic testing and recover from your current treatment. Ultimately you too want a decision you have never regretted. Best wishes for the next steps.

Blossom1961 · March 19

@southernsun Well done on making a choice. Don't worry about your public hospital not being great. The cancer section is usually run a bit separately and have staff much more in tune with your specific needs.

@arpie The choice given for a dbl mx and recon was possibly because my surgeon had a name for himself for being one of the best recon surgeons so he basically made his own rules. I chose flat one side so didn't make any difference to me anyway.

Going public - will I have any choices

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