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.
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
- Wonderful outcome!
- 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.
- @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. - As they should! Always heartening when people do the right thing.
- FAN-bloody-TASTIC, @KylieG - that is GREAT news re HBF!!
You will be fine in the Public system. xxx - 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! <3 I'm thrilled about that but still going public now as I was so impressed with Fiona Stanley.
- 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 - 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 - 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! ❤️