Just been diagnosed

Kcteds

how do we decide what to do.Is going public really going to be longer than going private.Read some info that out of pocket could be up to $12000 ,worried that I won’t be able to afford that amount.

Afraser

I had private hospital insurance but many, many people on the network have spoken positively about the quality of the public system and also possible advantages. We have the benefits in this country of a good public health system. Your first priority is early treatment. Until you know what's what in your particulat case, you can't really make a decision. Start public, scope what your treatment is likely to be, make decisions later with more knowledge. Best wishes.

Kcteds

I have to have a mastectomy,but don’t know if I should get reconstruction surgery.
i really need to talk to people that have had breast reconstruction,and ladies that have the prosthetic.I only have to have the right breast removed.No radiation or chemo.

Afraser

Well, no chemo or radiation is heartening. You only need to make a decision right now about reconstruction if you plan to do it  immediately with/after your mastectomy. There is a group on this website where you can talk specifically about breast reconstruction so you should have a look there and talk to those who can advise. You have the option to wait and make a decision later. In most cases, you can have a reconstruction of a particular type years after your mastectomy. I'm not the best to advise on this as I had a left breast mastectomy and no reconstruction. I have a prosthesis and find it simple and easy. Questions to ask are: how do you think you will feel about your body? I am very comfortable with my missing boob and scar but it's perfectly OK to say you may find this really hard. Do you live in a humid, hot environment where you may find a silicone prosthesis less comfortable? It's not easy as a whole lot of decisions tend to land on you all at once. Get into the breast reconstruction thread but also talk to your surgeon once you know who she/he is. Best wishes

arpie

Welcome to the forum, @Kcteds  .... You've come to the right place for great advice .... the $12000 price, I assume is including reconstruction?

Great that you don't need chemo or radiation - less hoops to jump thru!  

When you see your surgeon - ask him if he works in the public system & if so, what is the wait?  Generally speaking, if it is a matter of weeks, it would be worth waiting for it if it means it is no cost to you in the public system.  If it is a matter of months ..... you may like to reconsider going public, as a long wait can 'do your head in'.

IF you go private - the surgeon SHOULD give you a quote - and advise how much you will get back from both medicare & your health fund.  I went private for my Breast Conserving/Lumpectomy Surgery (which involved a small amount of reconstruction) and was out of pocket about $3000.  My surgeon worked out of a hospital that wasn't 'in' my healthcare 'umbrella' - so was charged another $500.  There was $450 'excess' ...... so that basically took the gap up to $4000.

Just make sure you ask for a written quote.  

Do you have anyone to go to the meeting with you?  An extra set of ears can be invaluable!  

All the best for your meeting with the surgeon - I hope you are happy with the outcome.  

@Afraser has given some wonderful advice about reconstruction options!  Most of my buddies haven't bothered with the reconstruction ..... but - that is an individual choice that only you can make.

take care xx

kmakm

Hi @Kcteds. Yes, do join the Choosing Breast Reconstruction group. I found it to be incredibly supportive, informative and helpful. I had a double mastectomy and DIEP reconstruction almost three months ago.

It sounds like you have decided you do want reconstruction, is that right? If you're still uncertain, you could go to the Breconda website. They have a good decision making tool there.

I went private and while my out of pocket costs were large, they were not $12,000. It is perfectly in your rights to ask how much the operation will cost. Do you have a breast surgeon? Has he/she given you a list of plastic surgeons they recommend? If so, ring their offices and ask the cost. You could also ask your breast surgeon about the timeline of when you would have your mastectomy, and if you want immediate recon, if would that would alter the date.

My understanding is that the best results are achieved with immediate reconstruction, ie mastectomy & reconstruction in the same operation. I also believe that if you go for this option you won't have to wait too long in Victoria. But again, ask your breast surgeon!

Your breastcare nurse can be a good sounding board and source of information, as are the good folk at the BCNA helpline on 1800 500 258. I like to ask lots of questions and found speaking to lots of people about my recon to be very beneficial.

Are you in Emerald, Victoria? If so, I am not too far away from you. If you'd like to meet and have a chat over a coffee let me know. I'd be happy to help.

Keep the questions coming. Hugs, Kate xox

Sister

You don't say whether you have private cover @kcteds (or maybe I missed that).  I do have cover but was about to cancel it.  Financially, things have been very tight but I have mostly gone through the private system.  I have discussed the finances with each of my doctors and in each case, they either bulk-billed or the gap was very small.  The hospital, of course, is another matter - but my private cover was good for that.  My surgeon does practice in the public system, too so I would have seen him there if necessary.  My rads will be done publicly.  My cousin, however, has gone completely public.  She was diagnosed a few weeks after me with the same cancer (last Christmas) and I think her first surgery was around May - mine was 2 weeks after diagnosis.

At this stage, I too am uncertain as to whether I will go for a reconstruction.  I think that's where the money will come in to it and from reading on this forum, how quickly you can get through in the public system depends on where you live.

So far, the major expense (if you don't count the health fund premiums) for me has been the gap charged at the specialist lymphodema physio for my cording.  That is almost $60 per session and, while I hoped that it might be limited to just a few sessions to "fix it", it's looking like it might be a regular long-term thing.  

Kcteds

Thank you sister,yes I do have private,but was concerned that it would be dear for out of pocket.
appreciate your input,I would not like to wait as long as your cousin,so I quess it would have to be private.Just wondering as you haven’t decided to have reconstruction,what procedure did you have.Do you have a saline implant?Do you have multiple trips to have it topped up until you decide if you want reconstruction.

tigerbeth

@Kcteds sorry you find yourself here ,  good luck going forward , lots of info , advice & help on here .
I have gone completely public & could not be happier with the treatment I received .
In Victoria your operation will occur within one month of diagnosis which is fantastic .
Whilst I did not have a mastectomy it's my understanding the wait may come if you do not opt for the reconstruction at the time of the mastectomy . 
Check it out with your surgeon & remember if your not happy get a second opinion .You need to be your own advocate , but as I stated I have been impressed with the care I received in the public system .
xx

Kcteds

Thanks tigerbeth,that’s good to know.Yes I would want to have reconstruction at time of mastectomy,but just worried about hidden costs,and ongoing surgery as I think they would put a saline thingy in until I healed.

Sister

At this stage, I have nothing.  Surgeon won't even consider anything within 12 months of surgery. I am about to have radiation which can affect both the skin and any implants.

Kcteds

Yes radiation means you have to wait until it’s finished,before you can consider reconstruction.
luckily I don’t need radiation but have to decide if I want reconstruction so I can book in my mastectomy.I will know a bit more tomorrow as I intend to ring my health fund to see if they have a surgeon that has agreed to not charge a gap.If they don’t know ,then I’ll try to get into the public system and have both mastectomy and reconstruction at the same time.Thanks for the reply as I am lost with what’s the best thing to do,and I just want to get it over with as soon as possible and start recovering,in saying that I don’t want to rush too fast that I may miss an option that may be available to me.Stressing and worried and trying to understand everything is getting me down.