Hi everyone I was diagnosed with IBC in June 2013 and been on a journey that I'm sure you're familiar with - chemo, mastectomy, radiotherapy and now tamoxifen. I'm continually frustrated by the lack of information about IBC and that much of what exists presents "horror stories". Was also frustrated to find in signing up to BCNA that they only listed early or secondary breast cancer as my choices. I/we don't fall into either group, I know we're a small number, but couldn't there be a third option. So pleased to have found you all. Stephanie

IBC is Inflammatory Breast Cancer. Deanne xxx

i can kind of relate to the 'gist' of your issue-- i dont have your diagnosis but breast cancer is a spectrum of 'disease' and treatments and i find my expereince --ie no mascetomy and chemotherapy--is also not well represented either--until you find people accidently or speak to health professionals --so you can feel a bit isolated or 'radical' when actually you are mainstream. There is often assumption that ive taken a year off for treatment or have taken a period of time off work--both of which have the assumption of chemo. Through the media, people have also assumed that i am missing a breast, that i would ask for both removed--as they think this is 'standard' for all bc! I would like the entire spectrum of disease and treaqtments to be represented best wishes

Some very good points raised here. I am triple negative, and it too is a whole other diagnosis. When my Dr told me I had triple negative , it was an almost by the way comment. It wasn't until much later that I realised the full implications of this diagnosis. I do feel for you with IBC, I have a friend with the same diagnosis and I had not even heard of it until I met her 6 months after my second diagnosis. I tried googling it back then and found very little on it. Cyber hugs to you all girls. Paula x

Moving forward | Online Network

Deanne
Member
11 years ago
IBC is Inflammatory Breast Cancer. Deanne xxx
mona63
Member
11 years ago
i can kind of relate to the 'gist' of your issue-- i dont have your diagnosis but breast cancer is a spectrum of 'disease' and treatments and i find my expereince --ie no mascetomy and chemotherapy--is also not well represented either--until you find people accidently or speak to health professionals --so you can feel a bit isolated or 'radical' when actually you are mainstream. There is often assumption that ive taken a year off for treatment or have taken a period of time off work--both of which have the assumption of chemo. Through the media, people have also assumed that i am missing a breast, that i would ask for both removed--as they think this is 'standard' for all bc! I would like the entire spectrum of disease and treaqtments to be represented

best wishes
mona63
Member
11 years ago
i can kind of relate to the 'gist' of your issue-- i dont have your diagnosis but breast cancer is a spectrum of 'disease' and treatments and i find my expereince --ie no mascetomy and chemotherapy--is also not well represented either--until you find people accidently or speak to health professionals --so you can feel a bit isolated or 'radical' when actually you are mainstream. There is often assumption that ive taken a year off for treatment or have taken a period of time off work--both of which have the assumption of chemo. Through the media, people have also assumed that i am missing a breast, that i would ask for both removed--as they think this is 'standard' for all bc! I would like the entire spectrum of disease and treaqtments to be represented

best wishes
mum2jj
Member
11 years ago
Some very good points raised here. I am triple negative, and it too is a whole other diagnosis. When my Dr told me I had triple negative , it was an almost by the way comment. It wasn't until much later that I realised the full implications of this diagnosis. I do feel for you with IBC, I have a friend with the same diagnosis and I had not even heard of it until I met her 6 months after my second diagnosis. I tried googling it back then and found very little on it. Cyber hugs to you all girls. Paula x
margiemoo
Member
11 years ago
I am up to speed now xx
Meggs67
Member
11 years ago
Hi Jean, I'm doing very well. It definitely helps when the rough journey required by IBC is successful. I hope you're doing well and that the process hasn't been too difficult for you and your support team. Very frustrating that there is so little information about IBC Readily available to us. Stephanie
jeanbates
Member
11 years ago
Stephanie, I'm glad your going well! I am doing okay. Will be having a bone scan on Wednesday to check as I'm having some pain. My bone density scan showed I've got strong bones...which is fantastic. Your whole life revolves around treatments doesn't it. I live in Wangaratta and travel an hour up to Wodonga for treatment and see the oncologist. A lot of my information I read on the internet, some sites are beter than others. Best wishes and take care Lots of love Jeanx
jeanbates
Member
11 years ago
Stephanie, I'm glad your going well! I am doing okay. Will be having a bone scan on Wednesday to check as I'm having some pain. My bone density scan showed I've got strong bones...which is fantastic. Your whole life revolves around treatments doesn't it. I live in Wangaratta and travel an hour up to Wodonga for treatment and see the oncologist. A lot of my information I read on the internet, some sites are beter than others. Best wishes and take care Lots of love Jeanx
terri_parkes
Member
11 years ago
Jean, saw you on here & hope the bone scan went ok. I too have had 2 bone scans along the way due to painful joints but all ok & seems to be a side effect of the Femara. I'm a lot better now & find taking Krill tablets (1000mg daily) really help with the joint pain. Hope everything else is good for you. How does it feel now being a little more knowledgable about IBC & your treatment? Takes me right back there when I read the messages of those with a new diagnosis. Everytime another 6 months goes by, I feel so much more positive that everything will be ok. Take Care. Terri xxx
terri_parkes
Member
11 years ago
Jean, saw you on here & hope the bone scan went ok. I too have had 2 bone scans along the way due to painful joints but all ok & seems to be a side effect of the Femara. I'm a lot better now & find taking Krill tablets (1000mg daily) really help with the joint pain. Hope everything else is good for you. How does it feel now being a little more knowledgable about IBC & your treatment? Takes me right back there when I read the messages of those with a new diagnosis. Everytime another 6 months goes by, I feel so much more positive that everything will be ok. Take Care. Terri xxx