Moving forward

Meggs67's picture
Posted by Meggs67 in Inflammatory breast cancer, on 12 Apr 2014, 08:41AM

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

Comments

IBC

margiemoo's picture

sorry for my ignorance but what do the letters stand for?

 

Marg

Hi Marg

Deanne's picture

IBC is Inflammatory Breast Cancer.
Deanne xxx

thanks

margiemoo's picture

I am up to speed now xx

 

Same for Locally Advanced Breast Cancer

Deanne's picture

The information about Locally Advanced is also just about non-existent. It tends to be treated the same as for early breast cancer and even doctors seem to avoid using the term. It does not even have a clear definition and seems to be a grey area. There really are so many differences between the different types, forms and stages of Breast Cancer. It goes way beyond the simple early or secondary descriptions. Hope you are doing ok. Deanne xxx

mona63's picture

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

Hi Ladies

mum2jj's picture

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

Locally Advanced Breast Cancer

jeanbates's picture

Hi Stephanie,

I found exactly the same dilema when I signed up to BCNA, mine was diagnosed IBC - Locally Advanced Breast Cancer. Diagnosed Sept last year and have gone through the chemo, surgery and now almost finished the radiotherapy while a week ago given the hormone tablet and Herceptin till the end of the year. 

Hope you are doing well through the treatments, and all you girls who are connected. Lots of love Jeanx

 

Meggs67's picture

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's picture

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

Hi

jeanbates's picture

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's picture

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

Hi Terri

jeanbates's picture

Thanks for your message. I just read my post and in it I said I had a good bone density scan, well I was wrong. It showed i was osteopenia and heading to osteoporosis:-( Although it could have been worse!! So they gave me Zometa through my port to strengthen my bones. I have so many aches and pains, I know I have osteo arthritist as well. Wow what a journey so far!  Thank you for mentioning krill oil tablets I am taking them as well as caltrate. I have got on the  IBC Facebook page which is really interesting, it is based from the US but has informative info and some girls from Oz, you might be interested?  Im very glad your travelling well!:-) I haven't physically met anyone who has IBC yet. Maybe one day soon we can meet up and have a cuppa. Take care and love xo

terri parkes's picture

Sorry to hear your bone density isn't so good. Mine is fine so far, touch wood. I have only had it done once & that was earlier this year. Yes, I'm on the US IBC Facebook page but only get the messages that Terry Arnold puts on. Personally I found reading about all those not doing so well wasn't good for me. Terry A does wonderful work for IBC. I've met a couple of people with IBC face to face but I guess that's because I live in the city. One has stage 4 but had that when diagnosed & the other 2 were a few years ahead of me & doing well. One day, we might meet up in Melbourne as I certainly plan to travel there again. Just love the place!

jeanbates's picture

Meeting up in Melbourne would be great. Good idea about Facebook, most times I give myself a break and focus on the good around me and live my life outside IBC. I paint and have found that a great blessing! 


Inflammatory breast cancer

Inflammatory breast cancer

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  • Category:  Those diagnosed with breast cancer
  • Group Activities:  Online support
  • Support focus:  Early Breast Cancer

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