Newbie
Got my TNBC result yesterday and joined this group today. Had a partial L breast masectomy and sentinel node biopsy (2 nodes removed) on 22/8 as had 9mm tumour (Grade 3)..Op results show clear margins and nodes. Still on leave from work but will be returning shortly. Meeting with oncologist shortly to discuss chemo so having bone density test on Thursay. Have also signed up for LGFB workshop. Not sure where to next so any advice for this Adelaide based lady would be really appreciated.
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Welcome smead - altho sorry for your breast cancer diagnose. I also had clear margins and nodes but due to BRAC1 gene had a bi-lateral mastecomy and start of re-consruction with tissue expanders. Also grade 3 and stage 1.My tumour was 18mm and finished my chemo May 1st. I'm now waiting 2 months to have my implants put in. The LGFG workshop was a lovely experience and lots of great free products - I hope you enjoy your day. Do you have the My Journey Kit ? I found mine invaulable. Your oncologist should help you plan your next steps. What hospital are you attending - I was RAH and had no problems. All the best with the chemo and one tip I can give is have Ice before and during treatment to help with mouth sores. Leanne Xx
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We dont really want to welcome you to this journey but we all of us embrace each other. This network is a brilliant way to stay on track and not get lost. I don't know what I would have done without it so congrats on joining. I had never done any blogging or anything like that before but now I understand my kids being hooked on Facebook. You will love the LGFB workshop. It was weird at first when they asked us all to take off our headgear, I hadn't shown anyone other than my family and closest friends my bald head before. But all the ladies were in the same boat and we quickly got used to it. It's a lot of fun on the day and I am still using the same products from the 'show bag'. As you don't know what chemo you will be having yet, your hair may survive but with TNBC you'll probs lose it. I didn't end up getting a wig, thought they'd be too scratchy so I have stuck to scarves and learnt to tie them in lots of different ways. I found a great tutorial on the internet for how to draw your eyebrows on called EyelineHer. Easy to do too. It helps to practice when you have eyebrows first. Sorry I'm probably getting ahead of myself in giving you info. I'll stop there. But if you have any questions, we are all happy to help. Good luck with everything.
Love Janey xxx0 -
Hi Leanne
Thanks for your reply. I haven't been tested for BRAC 1 although my mum passed from disease after a 34 year journey losing one breast in 1974, the second in 2004 and then mets to lung in 2008. She never had radiotherapy or chemo as part of her treatment regime. Testing has never been suggested and the surgeon never spoke about bi-lat just a partial masectomy - even after TNBC result - testing andor bi-lat hasn't been mentioned. Yes, I have the My Journey kit - really good resource and I'm glad I joined bnca which has been really useful. I'm at Flinders and it has been good so far. I'm just in information overload at the moment and I can't get over how different everyone's treatment is even when it appears we are at same stage, etc. I still have some big decisions to make.
I wish you well with the rest of the reconstruction.
Sandi (smead)
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Hi Janey
I have read several of your posts and just loved your poem which summed up my journey to where I am today. I probably won't have started chemo before I go to the LGFB workshop - just wanting to get in early. I probably won't go with the wig but silk scarves - am wondering whether to get eyebrows and eyeliner tattooed before chemo! Don't know why as I am a mascara and lippy type of person but I have to work and I'm really trying to keep this as normal as I can whilst dealiing with an abnormal situation. Also I'm now wondering whether I should consider a bi-lat masectomy given my TNBC status although haven't been BRCA tested and it hasn't even been suggested. Something to ask the surgeon next time we meet, me thinks. One day at a time as suffering information overload. Thanks for your reply and all the best to you.
Sandi (smead)
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Welcome to the triple negative club.
I have already had a lumpectomy and I'm on my second round of chemo. I'm also about to go for the gentic testing as my Grandmother was 1 of 9 siblings, 8 of which had breast cancer, ovarian and other various cancers. Seems pretty plausible I have inherited the gene but I'll feel better when I know the outcome and it may aid me in future surgery options.
Like you I wanted to go to the lgfb workshop before chemo and found it really beneficial, you also get some really good freebies too. I bought eyebrow stencils, powder and false eyelashes from priceline so im well prepared. There are also really good tutorials on youtube to draw your own natural non drag queen style brows. My hair started come out after the 16th day of chemo. It got really itchy and I was casting everywhere. Got it all shaved in felt such a relief, don't get me wrong I'm still a coward and can't manage to look at my bald head in the mirror. I am armed with my wig, beanies, scarves and a full face of war paint so I'm getting there.
Yes we have been dealt a shitty card but the women on this site have been my savior's and its incredibly cathartic to converse, cry and vent with people in a similar predicament.
Take care and look after yourself.
Love Gillian xxx
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Welcome to the triple negative club.
I have already had a lumpectomy and I'm on my second round of chemo. I'm also about to go for the gentic testing as my Grandmother was 1 of 9 siblings, 8 of which had breast cancer, ovarian and other various cancers. Seems pretty plausible I have inherited the gene but I'll feel better when I know the outcome and it may aid me in future surgery options.
Like you I wanted to go to the lgfb workshop before chemo and found it really beneficial, you also get some really good freebies too. I bought eyebrow stencils, powder and false eyelashes from priceline so im well prepared. There are also really good tutorials on youtube to draw your own natural non drag queen style brows. My hair started come out after the 16th day of chemo. It got really itchy and I was casting everywhere. Got it all shaved in felt such a relief, don't get me wrong I'm still a coward and can't manage to look at my bald head in the mirror. I am armed with my wig, beanies, scarves and a full face of war paint so I'm getting there.
Yes we have been dealt a shitty card but the women on this site have been my savior's and its incredibly cathartic to converse, cry and vent with people in a similar predicament.
Take care and look after yourself.
Love Gillian xxx
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Good to know your name Sandi. Yep! This is the journey with lots and lots of decisions. Ask lots of questions especially about your mum's history and take your time deciding. It needs to be right for you.
I'm a mascara and lippy type person as well. I never wore a lot of makeup before this all happened but now I am even wearing foundation!
I ordered some makeup online from the USA for the eyebrow stuff ages ago but it still hasn't arrived. The funning thing is that my eyebrows have started to grow back now so I don't need it anymore. I wear a soft cotton cap under scarves as the silk ones were apt to slide off.
Keep positive.
Love Janey xxx0 -
Hello Sandi.
The whole triple neg status is a bit confronting hey. Anticipating the side effects is the hardest as you really dont know how you will feel! I also thought about cosmetic tattooing but opted not to. It would have been a reminder of something from my cancer treatment and I didn't want that. I did become an expert at applying eyeliner and stenciling eyebrows though!!!
Ask your LGFB ladies to help. Oh and for pretty silkk scarves check out the Amoena website, I used their and they were lovely! Some silky and some practical cotton ones too.
xo Christie.
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Hi is it just me, or do we all become super sensitive to our body after surgery. I've had my surgery, had my bone density test today which for me has to date been the most confronting thing. However, I'm getting these weird sensations in my upper body especially in the opposite side to the op site - really freaking me out! Also I feel a bit in limbo between surgery and meeting the oncologist in 10 days time - did any of you feel like this? Does this feeling go away? Feeling a bit lost at the mo
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Hi smead I had my surgery on 28th Nov and didn't see oncologist until 21st Dec 2012. Having to wait so long gives you time to over think everything. I coped by reading all the Cancer Council booklets that were revelant to me and the My Journey Kit books - do you have the kit ? I understand your lost feeling ,do you have someone close to talk to ? Leanne Xxx
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Hi smead I had my surgery on 28th Nov and didn't see oncologist until 21st Dec 2012. Having to wait so long gives you time to over think everything. I coped by reading all the Cancer Council booklets that were revelant to me and the My Journey Kit books - do you have the kit ? I understand your lost feeling ,do you have someone close to talk to ? Leanne Xxx
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Hi Leanne
Probably half my trouble is reading to much - I've got the Cancer Council booklets and the my journey Kit books and there is so much to take in. My other half is in denial still - he is doing what he can to support me but he is still very much in anger mode and he is finding it difficult as I'm the strong one who everyone leans on. Saying that he is very supportive in other ways but we are both having difficulty in talking about this. Silly isn't it that we've been through 30 + years together and have been able to talk about anything and everything but not this.
Thanks for listening xoxox
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Hi Smead, I think we are as the saying goes " like two peas in a pod ". We have been married 30 yrs last january,so coming up 31 and he did not read any of the books,even the one on caring for a cancer patient and still won't let me talk to him about my cancer and feelings. He was supportive during treatment but know it's like it never happened. I'm a person that needs to talk things out and he just shuts me down,I'm close to walking out the door again - I did 10 yrs ago but let him back into my life and now I'm starting to regret it. My 68 yr old Mother and 22 yr old daughter have been my rocks. As I said in another post, I live 6 hrs from Adeaide - Cowell and maybe when I have my implants at RAH soon,we can meet. Hope you are well Leanne Xxx
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