What a time to find out you're not covered by HBF! And can I save my nipple?
KylieG
Member Posts: 57 ✭
I was diagnosed just over a week ago. Amid all the shock, at least in the back of my mind I thought, at least I'm covered with HBF. It was only when I was sitting in the office at the private hospital that the receptionist told me my HBF card wasn't working and I called them and they told me they cancelled my policy in May when a payment didn't go through. They said I could just back-pay the last few months and be reinstated but then they put me on hold for 25 minutes and when they came back on the line they said I had to sign up for a new policy and pre-existing conditions would not be covered! And this was the day after my diagnosis, so my brand new condition was now "pre existing"! I was devastated. I've been with them for nine years. Don't know whether to try to fight or not.
So now I'm not sure what my options are, the public hospital hasn't contacted me for my first appointment yet. In the mean time I've had my bone and CT scans done, I have a 5 cm tumour and at least two lymph nodes, so stage 2 bordering on stage 3 basically.
The private surgeon I saw said I need all the breast tissue and nipple removed but there is no cancer on the nipple or skin, so I wanted to ask if anyone else has had a similar experience and fought to save their skin and nipple? I asked for a reconstruction and he said if I want that they have to put an expander in and do a second surgery later. Has anyone managed to get it all done at once? Also my breasts are large (10G) so he said there are no implants as big as my breasts. I wouldn't mind going smaller on the other side too, is that an option? The surgeon made it sound like that's something I'll have to do on my own at a later date.
Thanks guys if anyone reads this, I'm in Perth so I don't know if that affects anything.
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That’s all very unsettling but two things - public can be every bit as good and if you have the energy (cancer can use up quite a lot), fight! After nine years, commonsense says HBF might have sent a reminder, overdue notice, anything! Best wishes.5
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I am so sorry that you've had to join us here. However, welcome. I hope you find it as helpful and supportive as I have. We're good for a vent, a cry, a rant and surprisingly quite a few laughs.
I, almost inadvertently, went down the private health insurance route to treat my BC. With 20/20 hindsight I would not do this again. We are so significantly out of pocket that it's worrying. Almost everyone here has a very good, and in more than a few cases, better experience in the public health system. The biggest difference seems to be not seeing the same specialist at each appointment. So, being somewhat hard nosed, and acknowledging that I don't know you at all, I would let go of the HBF fight, put the money that you'd otherwise be paying into a special account, and use it to pay for your medication, supplies and complementary therapies that you will use along the way. You've got a long road ahead of you. You might want to conserve your energy for other battles.
Simply, there are two types of breast reconstruction. One uses implants and the other uses your own tissue (most commonly from your belly but also from your back, thighs or bum). Both can be done at the same time as your mastectomy, or later, by inserting expanders. It very much depends on whether you have radiation therapy or not, and from the description of your diagnosis I think you will. You need to talk in detail with your breast surgeon and a plastic surgeon. Your BS will refer you to a PS.
My understanding is that surgery to rebalance your boobs is not charged for in the public system but I'm not a hundred percent on that. Happy to be corrected. What will happen though is that if it's not done all at the same time you'll be on a waiting list.
You are in the best place in the world to have BC. WA has the best survival rates in Australia, and your support services are excellent.
Make sure you get access to a breastcare nurse that you like. They will be able to guide you through the minefield. Ask your BS.
Hang in there Kylie. This is the worst bit. I promise you it gets better once treatment gets under way. Big hug, K xox
@Hils
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https://www.reclaimyourcurves.org.au/
https://www.reclaimyourcurves.org.au/perth.html
https://www.reclaimyourcurves.org.au/information-sheets.html
https://www.bcna.org.au/understanding-breast-cancer/
Hi! Sorry you've found yourself here!
@KylieG
The links above will give you some good quality information with regard to reconstruction, surgery et cetera
There's a lot to take in!
There's terminology to be learnt, like clear margins, oncology et cetera which will give you a clearer understanding of why the private surgeon made the comment "The private surgeon I saw said I need all the breast tissue and nipple removed"
Hopefully you will find the links above very helpful and my advice is take someone with you to appointments so that you can absorb and between you both pick up on everything.
Deep breaths!
Take care
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I have never used the public health system for cancer care. I worked in the public health system for 30+ years.
Yes, I was out of pocket when I had stage 1, but it was when you received money back in your tax if you spent a certain amount on hospital care. We extended our mortgage.
It was good to be able to choose when I went into hospital. There was no waiting list. I had my own breast surgeon and plastic surgeon.
Now, I am still having treatment in a private hospital and see my oncologist as a private patient.
After being in a public hospital, just recently, when I had the flu, I would never choose to be a public patient.1 -
@KylieG
My treatment and followup care has been as a public patient. I do not have private health insurance.
May I suggest that you see your usual GP and ask for an urgent referral to the Breast Clinic at Fiona Stanley Hospital.
My diagnosis and treatment was complicated by the fact that I live remotely in the Kimberley, however the clinic staff at Fiona Stanley worked with me for the best possible outcome.
I wish you the very best of outcomes. Warm Kimberley wishes to you.
Annie
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Hi @KylieG,
Welcome lovely. The ladies are right as usual. This is the worst part until things get kind of organised.
People have good and bad experiences in both systems. Although I will say I've heard more bad than good about the private sector mostly the out of pockets and follow up. I had a close acquaintence who was out of pocket well over $10k after the chemo and radiation expenses that weren't covered.
I went public and had the same surgeon I could have walked around the block to his private rooms and paid big $$$ for. A lot of surgeons do both public and private. I was also accepted into a private hospital as a public patient for both chemo and radiation. It's not a well known fact that that can be done depending on the circumstance. Thank goodness for good breast care nurses that know these things.
The best references are always from somebody who has been to a particular hospital and had a good relationship there. Maybe another opinion might not be a bad idea as well regarding what absolutely has to be removed and why. Keep asking questions until you are satisified with the answers. One thing you learn very quickly through this thing is to be your own advocate and don't stop questioning things until you have all the information you need.
Big hugs
xoxoxoxox
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Hi @KylieG - I am SO sorry to see you here, but you are in the right spot for support, comfort and tips on where to go & even to have a rant if you feel the need.
That is a shocker re HBF - hard to believe they didn't make contact when your payment bounced - probably because your credit card was expired at about that time! It is easy to miss a regular payment! If you aren't up to it - a family member (or the breast cancer clinic/nurse) could go in to bat for you - so that you get your cover back without affecting this so-called pre-existing condition! If their accounts people were on their toes - they should have sorted it within days of the payment bouncing!
The period after detection is always the most difficult - the wait for 'diagnosis', then the wait for surgery, results etc - but once you see your surgeon & have a game plan - it DOES become a bit easier even if it is still pretty frantic.
Mine was diagnosed on Jan 5 & all the surgeons were on Xmas holidays til mid January - so I had to wait anyway!! As I don't have much faith in our closest hospital (when we moved here, they said "When in pain, take a plane'' - and 20 years later, it still applies, sadly!! So I went private in Sydney for my surgery & had a big surgery gap & other 'gaps' in all sorts of procedures (including $500 gap for my pathology! I am still trying to work that one out - as I am sure all the tests were necessary!) In hindsight, I would probably ask for the same surgeon to do it publicly if I needed more, as I guess I am about $6-8,000+ out of pocket - I stopped counting a while ago! My radiation was on the public system in a major regional hospital & I couldn't fault it. I didn't pay a cent - and my husband & I were able to stay in the lodge at the hospital for nominal rent, as the treatment was every day for a month - and I am rural so had to travel just under 2hrs to get there & back otherwise. I am the driver in the family, so that wasn't going to be fun!
Mine was lobular & was directly under the nipple - so I was able to have 'breast conserving surgery' where the nipple removed 'removed', the cancer removed & then the nipple sewn back on, with some of my own fat relocated to fill in the holes. I also had nodes removed but all were clear, so didn't have to have further surgery under the arms or lymph glands. Looking at my boob now - the surgeon did a terrific job. The scarring is almost negligible 18 months after surgery.
There is a 'young womans' group that you may like to join & also a Breast Reconstruction group as well where you can put any questions to like minded folk .... @Giovanna_BCNA may be able to guide you re joining them if you like.
All the best with your appointments - I hope you have someone to go to them with you & I hope you get your appointments and HBF sorted soon. xx
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Did you receive notification of your policy being cancelled? If not I'd be quick smart onto the ombudsman to see if it should be reinstated as was and back payment as they said until they found out you have cancer. (Or let the manager know you will be contacting the ombudsman or Health Care Complaints commission about this)
Public hospital surgery is pretty quick depending on diagnosis and urgency. I waited 20 days from my appointment for bilateral mastectomy and tissue expander insertion in SA. If I'd had lumpectomy it would have been quicker. It did take me 2 weeks for first appointment due to Xmas /New Year. You could call them and ask how long to appointment explaining the situation. I had private health but chose public due to costs.4 -
My God, I am so angry at HBF right now. That is beyond rude, its fully evil. I know they are a business but surely there are human beings in there making some decisions?
Having said that, I tend to agree with kmakm. You have got bigger fish to fry right now. Focus on getting prepared. Keep your eyes on the prize.
It's a tough time ahead but you will make it through!
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Hi @KylieG, as the others have said, I am so sorry to hear of your diagnosis (and health find mixup), but joining this group will bring you much support, knowing you are not alone.
I am also in Perth and have been very happy with the care I have received since diagnosis in February this year. I had my op privately but stayed in the public system for radiotherapy (SCGH- excellent!) which saved heaps of out of pocket expenses. My experience so far, is the medical and breast care services in Perth are amazing and have a very good reputation.
Hopefully you have a surgeon you can trust, and know that they are doing their very best for you.
Sending you all my good wishes xx3 -
Hi @KylieG - I was diagnosed mid 2011, had a masectomy Dec.2011 and have Herceptin infusions every three weeks. In that time I have had three local recurrences - two ops (overnight) and last year 15 radistion 'zaps'. At the time of diagnosis I had a discussion with my GP and as a result decided to opt for public. I started at RPH and then continued at FSH. I have regular heart scans and a CT scan at least once a year. I cannot fault the care - I can't emphasise that enough - staff are always kind and attentive. Herceptin is very expensive and last week I had infusion 114, I have only ever paid for parking.
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Thank you all so much.
I think the Public option sounds great from all your comments. They sent me an auto-sent text saying my appointment is next Wednesday but I haven't received a letter or phone call so that's thrown me a little. The private hospital was moving so fast, within days of my diagnosis I'd had all my scans and met the surgeon. I know it will move more slowly of course as they have such a load. But I am eager to speak to someone about my options soon.I want to ask a question: they said my bone scan was all clear but over the past 2 weeks or so I've had a new pain in my right jaw when I open my mouth. Is it something I need to tell them? To be honest I'm afraid to ask. Does everyone now imagine all their aches and pains might be something?
Also if anyone's fought to keep their nipple please tell me about it.ThanksKylie1 -
So much is done by message these days ...... good that you have an appt!
Yep, better to tell them about the jaw pain, in case it is an infection.
Yep - we all worry about most 'consistent' aches & pains - I believe the 'standard' is if it continues to hurt/ache for 4 weeks ..... if in doubt, get checked out.
take care xx0 -
Yep. Once you've been diagnosed that worry is with you. One learns to live with it. But if any unusual symptom persists for more than two weeks, go see your doctor. They understand the anxieties that a BC diagnosis provokes.
You could be clenching your jaw with stress and that's what's making it ache. You wouldn't be the first.
Re the nipple, you might like to join the Choosing Breast Reconstruction group and ask the question there. Big hug, K xox0
