BCNA Breast reconstruction online group

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Louie
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Re: BCNA Breast reconstruction online group

Postby Louie » Sun Nov 10, 2013 6:55 pm

Hi Jezza, yes I have actually just received stats on the BCNA private recon group and it has had almost 8000 individual page views in the 11 weeks since it started. I am very happy with that, along with the positive feedback from the ladies who are feeling empowered through having access to womens stories, images and opportuity to chat. Funnily enough the most popular page is the nipple reconstruction.

Thanks for the your info on the nipples too.

Louie

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Re: BCNA Breast reconstruction online group

Postby jezza » Sun Nov 10, 2013 11:40 am

My graft for nipple was taken from the end of my caesarean scar so is not noticeable. Tattoo was done by my plastic surgeon who learnt from a tattoo parlour!...lol

I don't think she does them herself these days...too busy.

And yes Louie its good that here you can see how many have read a thread...its quite surprising sometimes when you see that a thread has had hundreds (and sometimes thousands) of "views".. Maybe thats something that you could ask about on your site.

jezza
Dx Jan. 1992 9mm Grade 3 IDC node neg. LB mast. Prophylactic RB mast. 6 months later. No chemo. No rads. Saline implants. 22 years NED. (No Evidence of Disease)

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Re: BCNA Breast reconstruction online group

Postby Janette » Fri Nov 08, 2013 12:09 pm

Louie,
I've had mine for 5 years now and from memory the nipple was made from breast tissue and the graft was laid to form the areola from where the skin was lifted for the nipple. Very happy but methods may have improved. My graft was taken from quite low on my abdomen and I have a couple of pubic hairs growing from areola. Not a problem though and still very happy with the outcome. :hugs:
Janette


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Re: BCNA Breast reconstruction online group

Postby Louie » Thu Nov 07, 2013 10:54 pm

Thanks girls for the replies.

Yes school teacher I am so well informed now, as I go through the stages I suck in the knowledge.

Hi Janette, how long have you had your nipples? They must be nice and stable if you are so pleased. I have discussed the T cut on the breast, I guess the one called 'local tissue flap' as it uses my breast skin. I am assured it will be stable. Then tattooing. He did say the diameter of the areola will be 4-5cm. this seems large, but i dont remember my natural ones now. he also deliberately scars the areola area so it looks textured, sound like maybe your is also like that.

XXlouie

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Re: BCNA Breast reconstruction online group

Postby Janette » Thu Nov 07, 2013 9:47 pm

Louie,
I made the decision to go with nipple recon and tattoos and love the results, wouldn't change it. Had a skate flap and graft from my abdomen. My areola is textured and looks real.
Janette




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Re: BCNA Breast reconstruction online group

Postby schoolteacher » Thu Nov 07, 2013 9:00 pm

I agree. Knowledge is power. I read so I knew the questions to ask:) one thing I have learned on this journey is that not everyone is given the best advice or treatment. You can't just put yourself into someone's hands blindly trusting. You need to skew informed decisions :wave:

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Re: BCNA Breast reconstruction online group

Postby Louie » Thu Nov 07, 2013 6:38 pm

AND....what I love here is you can see the level of interest in posts, good to know that people are reading and what they are reading and that messages arent going into thin air.

L:)

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Re: BCNA Breast reconstruction online group

Postby Louie » Thu Nov 07, 2013 6:35 pm

Hiya Jezza, you are most welcome to join. You would have some wisdom to share I am sure. Recon 20 years ago, wow. Now you would be a great person to share on the BCNA blog too!

I am looking forward to seeing how your photo area might be different to BCNA.

When I see how your works I could write up about it and post a link to see if any of our ladies are interested in your resources here. The more the merrier I say.

And yes it can be all consuming. And important to get a balanced view. But i know it has worked well for me. I have decided to go with nipples after connecting with ladies who have had procedures done. Not all great but it gave me the power to talk about the pros and cons with the plastic surgeon, i had informed questions to ask. And thats what its about I think. Empowering us to ask the right questions and the difficult questions.

cheers L:)

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Re: BCNA Breast reconstruction online group

Postby jezza » Thu Nov 07, 2013 6:01 pm

Yes Louie, spreading the word is hard. I had recon 21 years ago and there wasn't even ANY online forums then!

Its a shame when people find a forum when their treatment/ recon is almost finished but thankfully a lot of these ladies have stuck around and helped others through. I know I would have loved a forum to ask all those niggling questions that you forget to ask your Dr or you feel are a bit silly to ask.

I'm sure your members would probably like a browse through our recon section as well as its pretty long now and we can certainly direct our members to yours if they want further reading. I know at first some feel that they just can't get enough info...it sort of takes over your life fo a while.

Also most recons aren't perfect reproductions and its wise to look at photos and see different results.

Haven't been on the BCNA site for quite a while...must pop in for a look.

jezza
Dx Jan. 1992 9mm Grade 3 IDC node neg. LB mast. Prophylactic RB mast. 6 months later. No chemo. No rads. Saline implants. 22 years NED. (No Evidence of Disease)

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Re: BCNA Breast reconstruction online group

Postby Janette » Wed Nov 06, 2013 10:37 pm

Hi Louie,
I agree that there is a great need for information and pictures are so helpful. I did lots of research into recon and found a very helpful forum based in Japan at the time with contributions from all over the world.

We established our section years ago now and some wonderful ladies have contributed. I hope your group goes well.
Janette




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Re: BCNA Breast reconstruction online group

Postby Louie » Wed Nov 06, 2013 7:13 pm

Hi ladies, thanks Christine, Jezza and Carmel for your encouragement. Carmel we are having a good time on the BCNA blog for sure. I am so motivated by the breast reconstruction cause. I am sorry that I did not know of this sites photo blog, I guess thats a part of the frustration around this topic. Finding where the information is drives a huge part of the problem for individual ladies who dont have support people in the know.

So I am so happy that Jezza and this site administrators support other helpful links. We just need more easily accessible information that is relevent for Australian ladies. Whatever form it takes.

cheers Louise

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Re: BCNA Breast reconstruction online group

Postby carmie » Wed Nov 06, 2013 4:51 pm

I have to say Louie has been great getting it all up & running & researching so many different things for everyone in the group. Much the same as you fabulous ladies who do it here !!
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Re: BCNA Breast reconstruction online group

Postby jezza » Wed Nov 06, 2013 4:02 pm

Hi Louie..

It sounds like your site is very similar to the private recon one we have on here which has been going for some years now. We like members to have posted a few times before they are allowed access to that section. I see that you first posted yesterday.As you would know there are some strange people out there in cyberland so to protect members access is not automatic.

BCNA is a wonderful organisation but I know that when the online forum was new a lot of our members weren't receiving much response to their questions so ended up here. It sounds like it has picked up which is great.

Good luck with your group...there is certainly a steep learning curve ahead when you are researching reconstruction!

jezza
Dx Jan. 1992 9mm Grade 3 IDC node neg. LB mast. Prophylactic RB mast. 6 months later. No chemo. No rads. Saline implants. 22 years NED. (No Evidence of Disease)

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Re: BCNA Breast reconstruction online group

Postby chrismelb » Tue Nov 05, 2013 6:20 pm

Thanks for letting us know Louie. I for one find the BCNA website very user unfriendly and I have used a few forums previously.
I hope your group is helpful and successful
Dx 9/03 EBC
5/12 ABC bones-Herceptin,Tamox&Zometa
8/12 Liver mets-Abraxane,Herceptin&Zometa
6/13 Xeloda/Tykerb Xgeva
11/14 TDM1 Xgeva
1/15 Rads to tumour in head
2/16 Whole brain rads lepto. mets, continue TDM1
8/16. Navelbine, Herceptin
1/17 Neratanib Xeloda & Herceptin.

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BCNA Breast reconstruction online group

Postby Louie » Tue Nov 05, 2013 6:15 pm

Hi ladies, i am new here but not new to breast cancer.

I have spent most of my time on BCNA online network and find it a very easy to get around and welcoming online forum. I have often come to this site to read posts when I was actively researching for my illness or around the topic of breast reconstruction. But I never joined as one forum was enough for me at the time.

Researching for breast reconstruction was by far the hardest part of my BC experience, (apart of course from being diagnosed in the first place). I really needed to connect with women who had had breast reconstruction and to look at their photos and ask questions. At the time I could find no avenues at all to help me and have since found out you have here a private place to view photos. I have yet to be accepted into that group. My reconstruction procedures are almost complete but I wanted to do something to fill that communication gap that made my experience so difficult.

I have read here that the sight administrators welcome any useful links so I wanted to let you all know of one in case you were interested in having another useful resource to help with planning your reconstruction experience.

I facilitate the . It is a private space where women are sharing their breast reconstruction stories and images. It is a place that women planning reconstruction can view the images of other ladies who have undergone or who are undergoing procedures and connect with them and ask what ever questions they need to empower and inform them.

Conversations on the blog include

• Photo stories
• Implant and tissue transfer reconstruction
• Radiation and its effects on reconstruction
• Nipple reconstruction and nipple tattoos
• Pre-operative and post-operative tips
• Various other relevant breast reconstruction resources from the Australian media


It is a private site that is members only, but it is not anonymous unless the women sharing wants it to be.

If you are interested in joining just follow the link and request membership with a little bit of information about yourself and why you want to join.
http://www.bcna.org.au/group/61026

warmest regards Louise XXX
Last edited by Louie on Wed Nov 06, 2013 8:37 am, edited 1 time in total.


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