Reconstruction ?

Hi Debbie

Great that you are doing some research on reconstruction, as there is a lot to find out.  The link below is a resources sheet from BCNA which may help you.

http://www.bcna.org.au/sites/default/files/the_beacon_53_resources_sheet.pdf

I had a mastectomy in July 2009 and have not had a reconstruction as yet. However, I have done quite a lot of research including the following ...  Reading reputable resources (such as those obtained through BCNA), attending a seminar put on by BreaCan in Melbourne - you can subscribe to a BreaCan podcast of their various reconstruction seminars. Their website is www.breacan.org.au.  Additionally, I got a referral from my breast surgeon to a plastic surgeon (private system) and had an appointment to discuss what options were best for me.  As you would know there are several types of reconstruction and it is important that you talk with your medical team to work out what is best for YOU. e.g. tram flap, implant ... or maybe nothing at all.  Unlike your initial mastectomy surgery, reconstruction surgery now is not something you have to rush into. Talk with your medical team and maybe consider making an appointment with a plastic surgeon.   Nearly two years on, I don't feel a burning desire to reconstruct, but am glad I've taken the time to do the research about what is best for me, should I shoose to reconstruct down the track.  Emotionally, it is a rollercoaster ride - you are not alone there. Good luck and keep in touch if you feel like it.  Kym

 Thank you so much , yes  I am not ready till end of the year if then, but thought I should start doing my research now as there is so much to take in. Thanks for the links. Yes emotionally it is such a ride , did not know I could cry so much. Big hugs Debbie xxxxxxxxxxxxxx

Hi Debbie,

Reconstruction is an important part of our recovery - I am trying to steer my way though the choices... not as easy as I thought, but afer what we have endured, lets hope we end up with great boobs! x

Hi, as a post script to Kyms comments, I am on the waiting list to have my reconstruction done via medicare. Ive been told that it will take about 3 years to be done.  So the sooner you get on the list the better.  You can have it done privately but I dont know about any refund via medicare.  I havnt made up my mine what type of recon I want yet ( or even if Im going to have one), but Im still on the list,  the decision can be made closer to the surgery.  The info sheet at BCNA is fantastic, but speak to your breast surgeon asap.  take care.  xxx.

Hi again, interesting that they can get fined for not doing rc in 12 months.  Maybee its worth the fine to have you on the list.  I will have to look into this myself now.  I just assumed my surgeon would tell me everything I needed to know.

Do you you have to go through your surgeon to go on the list?.

 Thanks , it is hard when you do not know, lucky I have you guys. Nobody tells you anything.Debbie

Hi Debbie, 

I had a bilateral reconstruction done a couple of years ago and had it done privately. I was offered the choice to go on the waiting list for the public hospital but I really wanted to choose my plastic surgeon, so I did go the private route. I made my choice by speaking to a few different plastic surgeons. I did have to pay the initial consult fees but in the end it was worth it until I found someone I was really comfortable with. I ended up being really lucky that between my private fund and the generosity of my surgeons that the only thing I had to pay for was the excess ($250) and the anaesthesiologist. So at the end of three operations, all I ended up paying was about $1000. 

My advice would be to shop around if you can. 

x evie 

Hey Debbie, this is the info I have gathered so far! So far from ringing a couple of surgeons in Sydney the waiting list is roughly 12months in the public system. To do it totally private will attract out of pocket expenses even between medicare and your private health fund. Sometimes they may take part in a no gap scheme (which means no out of pocket expenses for you) so ask if they will do this. The plastic surgeon will discuss what is best for you, also depends on if you are having radiation etc. Goodluck with the research it is very daunting trying to find the right Plastic Surgeon x   

Hi all,

I'm in Sydney and about to undergo a double mastectomy (9/6/11). I have top Private Health Insurance so I went to see a plastic surgeon about reconstruction. The GAP he charges for a double TRAM flap (stomach) reconstruction is $19K!!!!! For tissue expanders and then impants (both breasts) the GAP is $8K. ($4K a boob).

I nearly fell over when I heard this. So did my breast surgeon. We're all in the wrong job aren't we! LOL. So I think I'll join the public hospital waiting list for reconstruction. Are the plastic surgeons ok who do the Medicare only ops in the Public system?

Evie who was your surgeon who did it privately for the Medicare only fee? What sort of reconstruction did you have? I can't have the tissue expander option as I've had previous radiation, but I wouldn't mind the tummy tuck!

My breast surgeon has kindly offered to do my mastectomy for a no gap fee as he did my Lumpectomy (same breast) 2 years ago. I get the 'frequent cancer discount'. Hah hah.

So much to think about hey!!!

Dee

I think the trick is to find a plastic surgeon who also works in a public hospital. You then use your private insurance so you can choose your surgeon but have have it done in a public hospital.You will have to pay abit of a gap but it should be cheaper cos you've gone public.You shouldn't have to wait too long either. This was my experience with my breast surgeon-don't know if it's the same for plastic surgeons.

                                            Tonya

Hi Debbie

Big decisions for you!

I had my right breast removed during treatment for IBC in January 2009. I had decided on the day I was diagnosed to have a reconstruction, and continued to believe that this would be the right path for me.

I had stage 1 of the procedure last December. The operation was a DIEP flap reconstruction. The advantage of this operation is that it leaves the abdominal muscles intact and allows a good blood supply to the new breast, romantically referred to as a flap. It also leaves your abdomen nice and flat.

The surgery is tough. It takes over 6 hours and it knocks you about a bit. I spent the night in the ICU after the op, which is standard practice. My surgeon's advice was to take a good multivitamin in the weeks before surgery. As it turned out, I recovered pretty well and was up and about within two days post-op. I have a blog on Health Central, an American based site, that describes it all in more detail.

After I had finished my antibiotics to prevent infection, I also took a probiotic to restore my good bacteria, and I think this did some good. Another tip is to use Manuka honey on the wounds to assist healing. It's fantastic.

I have now had stage two of the process. My surgeon created a nipple using a small flap of skin cut from the new breast, and did some lipo to even up the two breasts. This was just day surgery, involving about 90 minutes in the operating theatre. Eventually, they will tattoo an areola to make it look as close to natural as possible.

At each stage I have been thrilled with the results. I look at my new cleavage dozens of time every day and I can now wear deep V necklines again. At Easter, during a trip to Cairns, I bought a pair of bathers for the first time in more than 20 years and had a swim.

Personally, I would avoid getting it done publically if you have private cover. You won't have to wait and you can be absolutely sure of getting a top job. I know of one woman who was assigned a plastic surgeon who specialises in removing skin cancers and couldn't even do a DIEP flap recon.

$19,000 sounds like a very high quote for this procedure. My surgeon, who is or has been president of the Plastic Surgeon's Association, quoted $10,000 for the op. The anaesthetist charged about $3750 and the hospital bill was about $18,000. The Medicare rebate for the surgeon was $3750, and HBA paid $250. However, we only paid the excess of $300 for the hospital bill. All up, we estimated that we paid about $8,000 for my new breast.

The stage 2 op is mostly covered, and we're only out of pocket for a couple of hundred dollars for this.

If a Sydney surgeon is going to charge so much over the scheduled fee, why not go further afield? My surgeon's name is Howard Webster and he's in Melbourne. He's a really kind man who takes a real interest in you. You wouldn't spend $9,000 in air fares to get a top job done!

Best of luck

Sue

Thanks Sue, I was talking about a DIEP flap quote. $9500 each breast-yours was $10K for 1 breast. I need both! Have found out my surgeon does 1day a month for public patients Medicare fee only. Waiting list is about 18 months so I'm on it!! Will probably go for implants as apparently my skin is ok to be stretched. I'd prefer the DIEP flap but for 2 breasts it's 15 hrs and with my triple neg breast cancer was advised not to undergo such a massive operation that will affect my immune system. I'll just have to lose the stomach fat on my own!! Not 100% sure. No hurry. I just need to survive the next 2 years. That's when this cancer is most likely to recur. Triple neg is a bad one to get! Diane

Yes, I went through my private plastic surgeon to go on his public waiting list (about a year's wait as he only does 1 'public' day a month!!!). I guess the money is with the private insurers huh!  He will do the operation, but because it will be in a public hospital and on the public waiting list there will be not be the huge gap fees. I am insured privately, but when you are looking at 2 boobs to be reconstructed and a 12-15 hour op for a DIEP flap, its $19,000 just for the op, let alone the anaesthesist and other costs. I agree, it is outrageous that Medicare covers so little of the fee.

I'm thinking I'll go for the expanders anyway as its less a toll on the body. Anyone out there had double implants for their reconstruction?

I'm so glad you are happy with your reconstruction Sue. Love the success stories!

x

I have been researching reconstruction and yes it is a mine field! Iam also looking at going on a waiting list as a public patient. I was also told that the wait could be up to 3 years but after speaking with my radiotherapist he said I should not have to wait any longer than 12 months! I had a LB mastectomy and the thought of a flap reco was awesome! Now Im leaning towards implant and possible reducing the other breast?? Im a DD with the boob thats left and would happily reduce its size. Any one else had these thoughts??

xo Christie.

I have had a right masctectomy 2 years ago in the public hospital system,I was very hapy with  the out come I was in and had the breast removed a week after being diagnosed. Then 12months later the tissue expander put in and now waiting to have the sillicone implants put in and then reducing the other breast the only thing is that the whole thing has taken 2 years and still more to go I am looking forward to wearing low cut tops.hoping it is all worth it ,

I'm having a double mastectomy and expanders in June ready for implants.  One of the surgeons I went to see gave me a great book which went through all the options in great detail.  It was called A Woman's Decision which was very comprehensive.  It was a difficult decision but the alternative is not an option!  I've already had  breast cancer and bowel cancer and because of early detection I've survived both.  Mum had breast cancer too and I have a 1 in 3 chance of getting another one, I just don't want the stress and worry anymore whenever I have a mammogram.

 I am having implants put in next Thursday 24th May. I had a mastectomy on the 15th march on my left breast. I had a mastectomy on my right breast in March 2012. I decided to have my left breast off as a precaution. A lot of cancer in my family.

I chose to have implants as I did not want to go through a long operation , which I beleive is 10hrs or more for a tram flap, as I get so sick and recovery is a lot longer.

I did a lot of research on  implants and went with a brand called Mentor. My surgeon was going to usea brand called Silimed, but after researching them found out they have a polyurathane coating which is now some concern that after a period of time it brakes down in the body and can cause cancer. Private hospital in Britain has banned them  and some surgeons in Australia have stopped using them till further reseach is done. They are approved by the TGA in Australia, but America has not approved them. After having breast cancer, I am not going tp out myself at risk and later on it may be proven that it causes cancer. 

I am lucky I have only been on the waiting list since November 2011 to have it done in the public system. I have a top surgeon and I am not out of pocket.

Well just to update my situation. Im on the official waiting list through Peter Mac. The paper work advises that I may be done sometime in the next 365 days. I dont get the option of an implant or expander due to the area being radiated. Hope my year goes quickly.

I decided to go with the DIEP flap as the area has also been radiated & expanders / implants not an option. Because it is such a huge operation I went to a highly recommended surgeon (thanks Chris!) and am going to have it done privately in August. V nervous about it all but I can't wait to wear decent necklines too!
Who is your surgeon Debbie? That was such a short wait. Dr Lam in Sydney was 1yr minimum. I'm going with Dr Pennington now.
Diane

Hi Debbie

This is Annie from BCNA's Policy team.

Breast reconstruction surgery is covered by Medicare. If you are having surgery done privately, BCNA suggests you ask for written quotes before agreeing to anything as there can be significant out of pocket costs (up to $15,000). You might also like to contact your private health insurance fund (if you have one) to ask what they will cover.

Breast reconstruction surgery is also available through the public hospital system, where there will be little, or no, charge to you. However, there may be a lengthy waiting time on the waiting list - up to two years in some hospitals.

There is information on women's options for breast reconstruction on our website (including tips from other women) and in Issue 53 (Summer 2010) of The Beacon magazine. That issue was on the topic of reconstruction, so there is lots of information and women's stories.

If you saw a breast care nurse during your treatment, or have access to one at a local hospital, she would be a good person to talk to about your options.

Let me know if you have any other queries.

All the best, Annie

I will have to check with my plastic surgeon about the implant and polyurathane coating, I don't want anymore cancers thats for sure.  I'm lucky I have private health and its all covered but still had to wait 6 months for the plastic surgeon to have time.  I have been up and down about what I'm about to go through.  Some days I'm all for it then other days I think I'll pull out.  Only 3 weeks to go now.  Its a roller coaster ride.

I wish you all well with your procedures, just look forward to the day when its all finished and we can get on with the rest of our lives.

I had a left mastectomy (nipple sparing and partial skin sparing) on 3rd Feb (2012), with immediate silicone implant.

I am having the other one off when I finish chemo etc. my breast surgeon has already agreed to it, and he even had my port surgeon place my port where it wouldn't be in the way for the other surgery (he came into my port surgery).

I am seeing the geneticists on 1 Aug (they (my surgeon and oncologist) think that I might have one of the genes - high family history), and that will make no difference about my breast surgery but will allow me to work out what to do with my ovaries (a lot to think about at 41, but I will go with any surgery that makes my life risks less, as I don't need my ovaries really).

We have MULTIPLE other cancers (including breast on both sides, dad has prostate (I was told the male version of ovarian cancer, by my oncologist) in my family too including lymphatic and others, and have MULTIPLE other familial issues like Auto-immune diseases (lupus, celiacs, eczema, asthma, rheumatoid arthritis etc etc), various other arthritises and other isues like thyroid (Mum had a mild goitre), as well as a gentic connective tissue disease.

Yep my family are total medical basket cases, I have a REALLY bad family medical history and my hubby and I decided NOT to have kids for various reasons including my genetic and family history as well as my own personal disabilities caused by the conditions that I inherited or have.

I will be VERY interested in what the geneticisits say (I can only get the free BRACA etc testing if they decide that I have enough of a family history to warrant it, otherwise it would cost $2,500 (which I do NOT have), for me the only difference a positive test would mean is that I would whip my ovaries out, but I have a younger sister and older brother, and I have 5 nieces, 2 nephews and 1 new grand/great niece, and 2 grand/ great nephews and they are at risk too, and me getting a result could/ will change there choices too).

My Dad died of bowel cancer and Mum had breast cancer so I was lucky.  We also have different cancers in our family and I have been in contact with the Familial cancer group here to see if our family can be tested/monitored for cancer types.  I have 2 sons, a daughter and 4 granddaughters, so it is a worry for me.  However, they are making such huge strides in cancer research now that in the future cancer might be just another condition that can be cured.  When I think of my Dad 45 years ago and the lack of hope he had in beating the cancer and what can be done now, its amazing. 

I underwent a Bilateral Free Tram Breast Reconstruction on 5/5/2012.  I have not paid for any treatment from chemo to radiation to reconstruction.  All of my treatments have been through the public system.  I was on a waiting list for 21 months.  I had 2 plastic surgeons do my op.  One worked on the tram area whilst the other prepared my breast area for the tram.  They were fantastic and did a wonderful job.  As it has only been around a month since my op I am still a bit tender when I stretch.  Otherwise, my recovery is going ok. 

Hi Girls, I am from Newcastle and have been refered to Dr Elisabeth Elder in Sydney.

Just wondering if any of you have heard of her?

Hi Girls

Well, I had my Bilateral mastectomy and expanders done in June last year and now have implants. My breast surgeon said I don't have to see him or have another mammagram, so that is such a relief for me.

However, it hasn't been an easy ride because one of the expanders (right) broke through the muscle and ended up under my arm. I was carrying it around like a clutch bag, LOL! I had to go back in to surgery and have it fixed and the muscle is much tighter on that side. Unbeknown to me or the surgeon, the other side had also come from behind the muscle but because I had already had surgery on that side, the expander stayed in place. I had the final implants put in about 3 months ago and the left side is bigger than the right because the muscle doesn't cover it. I can have a muscle taken from my back but I'm resisting that. My PS is very good, these things happen. One bit of advice though, go to David Jones and buy the surgical bras and wear them as soon as you've had the surgery. They do up in front, are very supportive and they are so comfortable. I wear them day and night still and I think it has helped with the left one.

 Hi Ladies,

I had my implants put in in May last year. It was a nightmare from day one. The expanders were a big problem so much pain and did not  fill in the right places in one side. when the implants went in from day one did not look right, one side flat at the top and the other side needed filling suken in from where I had the cancer taken out. The surgeon said it had to be done again. My op was cancelled 3 times by Dr and then just received a letter from the hospital to put my name on the list again asit had expired .

I was having this done through the public system.

Saw a surgeon in Queensland that will do it within the Medicare gap and in a private hospital. I am in a private fund. Only expense is $1,500 to transfer fat from my stomach to fill in the gap in my chest. This is not covered under Medicare. Took one look at me and said the implants are to long for me and that is why they have dropped and the left implant the side of the implant was put at the top , not put in correct Also implants were to wide.. Fat transfer should have been put in then implant on top.

Was so lovely to have a Dr that really cared and explained everything . The other Dr I had would get really anoyed if I asked questions. 

My advice get a second opinion and do research before you go ahead .

Hello ladies.

I have been very absent on the BCNA forums for a long time so time to update. I had my DIEP flap reco on the 8th of April, and so far Im absolutely in love with the results!!!!

The surgeon was one I researched myself and was very happy with him. I went through the public system and he told me at my consult in Nov 2012, that I would wait under 12 months for the surgery. Well he was right!

It was a huge 9 hour operation, however I bounced back very well and was allowed to go home on day 5! If anyone wants nitty gritty details, PM me and Im happy to share.

xo Christie.

So pleased to hear your reconstruction went so well Christie!! Who was your surgeon? You were so lucky to be able to do it all publicly as many wait a long time and them get trainee plastic surgeons doing part of the surgery. Often the results aren't as successful. So you should promote your surgeon and hospital so others can avoid the expense of going privately. I spent $18K in gaps for my double DIEP. Have just had nipple reconstruction 3 weeks ago so another $2K for that and revisions. Mind you, I'm VERY happy with my new boobs!! (And the flat tum!)
All the best
Diane
(A fellow triple negativer)

Dianne, yes I was very lucky being on the public waiting list. I had my surgery at the Austin and my surgeon had his team of students but I really couldn't fault any part of the process!

10/10 for my whole experience!