What a time to find out you're not covered by HBF! And can I save my nipple?

strongtogether

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. 

kezmusc

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.

primek

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.

KylieG

Oh it doesn’t retain the sensation?  I didn’t know that! 😮

primek

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

arpie

I must be a rarity .... or have a wonderful surgeon!  From what I understand, mine was ‘isolated’ (ie cut away from the surrounding Skin and tissue) but not actually cut OFF!  The tumour removal went ahead UNDER the skin of my boob, with the extra fat of the boob used to fill in the holes from the tumours  ....   I had stitches surrounding the whole nipple, as it was sewn back on.  So, over the last 18 months, it has healed well.  

I now have a small ‘dent’ above the nipple, where some subsidence occurred but I chose not to have further surgery to fill in the dent. 

I probably have about 75%+ sensation on my ‘replaced’ nipple .... it isn’t the ‘same’ - but is still as sensual as it can be. 

You would need discuss it with your surgeon and go with his recommendations.  

KylieG

Dear new friends and sisters, thank you for all your patient replies and advice.  Today I had my first appointment at the public hospital, Fiona Stanley, and the difference was like night and day! I was assigned a breast nurse who will advocate on my behalf, the surgeon explained everything in great detail, and he is going to see if breast conserving surgery is possible!  I feel so heard and seen in vast contrast to my appointment with the private surgeon who didn’t explain anything, was all smug smirks and responded somewhat sarcastically when I asked about saving my nipple.  Even if I don’t get to keep my breast at least I’ll know this surgeon tried and I got the opportunity to try.  That means so much.  And they’ve given me access to all kinds of support services.  I left there absolutely floating on the kindness of these people.  I can’t recommend Fiona Stanley highly enough.  And thanks to all of you for all this information so that I was completely across everything the doctor was discussing with me! ❤️

Annie C

Dear @KylieG

I am so glad. Having a belief and trust in your medical team and knowing that you have been "heard" is the best feeling.

Use your Breast Care Nurse and definitely use the support services offered.

And yes I too floated on air out of Fiona Stanley.

My warmest Kimberley wishes to you for the best possible outcome.

Annie

arpie

That's fantastic @KylieG - with your supportive team behind you, you'll be feeling so much more confident going into the surgery - even 'relaxed'!  

Mine was also 'Breast Conserving Surgery' - with a 'mini reconstruct' at the same time (they used excess fat from the same breast as it was already larger than the other breast - not that I had noticed, but he did the first time I saw him!) 

If you like, I can send you a couple of pics of the nipple immediately after surgery & now .... 

All the best xxx

KylieG

Thanks Arpie!  And today more good news- HBF is reinstating my cover!  My girlfriends came over on the weekend and helped me write a complaint to them and they called me today and said it was their error that they never communicated with me that the cover was being cancelled so they allowed me to back-pay and continue with my previous level of cover!   I'm thrilled about that but still going public now as I was so impressed with Fiona Stanley.

arpie

FAN-bloody-TASTIC, @KylieG - that is GREAT news re HBF!!  

You will be fine in the Public system.  xxx

Afraser

As they should! Always heartening when people do the right thing.

Annie C

@KylieG

How heartening to hear that you have now had two wins, one for Fiona Stanley and two for HBF.

I am impressed that with all the turmoil surrounding you, you are able to advocate for yourself with HBF. Cherish and hold close those girlfriends. They are gold.

KylieG

Thanks so much to everyone here.  Even if I didn't reply to you personally, I read every reply to my post at least three times each and they've all been helpful and encouraging.

Blossom1961

Wonderful outcome!