Forum Discussion
What a time to find out you're not covered by HBF! And can I save my nipple?
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.
60 Replies
- Yes it's sad. But its removed from its source. You may have some very light touch sensation across the entire breast but thats it. Mostly it becomes numb is my belief. This article suggest some women retain sensation.
I know my sensation was felt deep into the breast tissue which was removed. I have some light touch (think of light tickling) sensation of the skin across my reconstruction and even nipple reconstruction. I guess these are the conversations to have with your surgeon. Most try to preseve the nipple if possible even if only for appearance.
https://journals.lww.com/oncology-times/Fulltext/2015/05250/Preserving_Nipple_Sensation_after_Breast.14.aspx - Oh it doesn’t retain the sensation? I didn’t know that! 😮
- Regarding your nipple it just depends on the location of your tumor. Mine was very close to my nipple and I decided not to attempt to save it as I didn't want to risk no clear margins and also had the other removed with the breast as it seemed pointless saving one. The surgeon didn't think he would be abke to gey clear margins from the beginning.
Even if you save the nipple it doesn't retain the sensation at all. So just be aware of that.
I've gone on to have a nipple reconstruction and eventually will have a tattoo to complete. - Since the moment I was diagnosed I started clenching my jaw and grinding my teeth in my sleep. Thankfully the grinding has stopped but I still catch myself at times with the jaw clenching. It's far better though. It may be just something like that.
- You are right that every random pain will stress you out - it may well be stress thats hurting your jaw. Your bone scan was clear. Do talk to them about it though. I imagine there will be some implications around dental care and it may well be something like a regular tooth abscess or vanilla ear infection. Do you have a breast care nurse or other person identified yet? If not, speak to your GP.
Regarding your insurance- do you have any family or other support people you can ask to follow it up? While Public is a good option it might be that down the line some specific treatments could be more convenient going private. - 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 xox - 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 xx - 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.ThanksKylie - 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.
- 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 xx
