The Beacon and Inside Story - putting it out there.

Hi Amanda,

I totally agree with you, I was diagnosed with ABC in March this year, my first diagnosis. Prior to that all I knew about BC was that it was curable, a girl friend of mine even said to me when I was going through all the tests that if I was to get cancer breast cancer was the one to get as it is cureable........... Now of course we all know different as my friends are all very supportive of me through my journey and they all know it's ABC and that I will most likely never be cured but will hopefully be under control. After 8 cycles of chemo (Abraxaine) and also being on Herceptin my blood test are showing that my tumor markers are low and I can come off the chemo for a while to give my body a break, but I will stay on the Hetceptin for maintenence. 

I too find it upsetting that pretty much all of the media focus is on the "good news story" of EBC because everyone wants to hear about cures not about the fact that some of us will not be cured and that this terrible diease will take our lives one day.

I realise it's been a few months since your original post but having just been through my first October and seen all the ads on TV it has made me feel even more isolated with the focus on EBC and early detection and mamograms for the over 50's, I am only 42 and if you were to believe the ads I shouldn't have Advanced Breast Cancer as it's an older womans disease, more focus needs to be on all ages and regular checks and cheaper/free mamograms for women from aged 40, or even 35, more money and focus needs to be on research into ABC and finding ways to get the cancer under control and extend our lives to as long as possible. I too have young children, 16, 14 & 7, and want to see them grow up and achieve what they want to achieve and be there for them on their journeys.

I agree that The Beacon and Inside Story shouldn't be two seperate issues it should be one and give everyone the full story on both types of Breast Cancer, maybe then we wouldn't feel so isolated if those with EBC understood what ABC is and that we fight just as hard if not harder against this disease as they do.

Hope your all doing well and thats my rant for the day 

Tracey :-)

I would like to see them merge the 2. It is true that EBC and ABC are separated and EBC gets more focus. I never see people with ABC invited to speak at talks/forums. When I was 1st diagnosed I wanted so many questions answered that only come from people living with the disease. I searched for support groups but there wasnt any. Now slowly I am getting group of Advanced cancer friends who are focusing on wellness.

What about some focus on the people who are experiencing remission and what are their stories in the magazines? 

It would be good to see some of the fear the community feels with Advanced cancers.. addressed. There is so much we can do to help others and ourselves with cancer. Wellness focus needs to increase to encourage people to take steps to do what they can for each other and ourselves.  Even if this means experiencing a better quality of life in how they take care of themselves.

I would like to see Pink October to have at least 50 percent of money injected into projects for the local community needs. I want more acknowledgement of alternate treatment and the use of both in tandem for the best outcome.

I would like to see them merge the 2. It is true that EBC and ABC are separated and EBC gets more focus. I never see people with ABC invited to speak at talks/forums. When I was 1st diagnosed I wanted so many questions answered that only come from people living with the disease. I searched for support groups but there wasnt any. Now slowly I am getting group of Advanced cancer friends who are focusing on wellness.

What about some focus on the people who are experiencing remission and what are their stories in the magazines? 

It would be good to see some of the fear the community feels with Advanced cancers.. addressed. There is so much we can do to help others and ourselves with cancer. Wellness focus needs to increase to encourage people to take steps to do what they can for each other and ourselves.  Even if this means experiencing a better quality of life in how they take care of themselves.

I would like to see Pink October to have at least 50 percent of money injected into projects for the local community needs. I want more acknowledgement of alternate treatment and the use of both in tandem for the best outcome.

I am pleased to see people responding with their opinions.  All opinions are valid and it is an interesting discussion.

I'd ike to see more comments as this is something I feel dearly about.  I understand the fear and that is valid also but I do wonder at what cost.  

Please those of you reading - I'd love to know what you think.

Amanda 

Perhaps the very name tells all - we are the nasty little secret inside the wave of pink positivism. I have found that many of my former associates, working with women with breast cancer, have been very slow to renew contact. It's just too confronting for them.

We badly need the kind of openness found on some of the US websites; it's a continuum after all and we should all be in it together. Can't sweep ABC under the carpet.

Great to see this discussion..... Pam

Perhaps the very name tells all - we are the nasty little secret inside the wave of pink positivism. I have found that many of my former associates, working with women with breast cancer, have been very slow to renew contact. It's just too confronting for them.

We badly need the kind of openness found on some of the US websites; it's a continuum after all and we should all be in it together. Can't sweep ABC under the carpet.

Great to see this discussion..... Pam

I would love to read more stories in my edition of the beacon around ABC. 

I have EBC and I understand the fear hearing about ABC creates. but it is the reality of our lives i think. we have to deal with our pink sisters getting diagnosed with ABC or hearing stories of ABC. but i find knowing you Amanda and others with ABC very uplifting and I learn so much from you all. your spirit, the way you want to fight is just inspirational. I think they should do a story on you for the Beacon :-) 

I'd be very interested to see what BCNA have to say regarding this. I never realised we had different issues. 

BCNA is only quiet new and needs opinions like this and those replying to this to know what this community truely needs. 

I feel if there was to be a story in the Beacon regarding ABC you could always put a kind of disclaimer on it saying this is a story regarding ABC please read at own risk or something like that. give the reader the choice. 

some may benefit, some may not. but i know I would love to read stories no matter the diagnoses. you should not be excluded. 

I think the fantastic thing about BCNA is that u learn u are not alone. I am so sad u feel that way right now... huge hugs amanda. keep warm and good on u for speaking up. 

Merylee

I would love to read more stories in my edition of the beacon around ABC. 

I have EBC and I understand the fear hearing about ABC creates. but it is the reality of our lives i think. we have to deal with our pink sisters getting diagnosed with ABC or hearing stories of ABC. but i find knowing you Amanda and others with ABC very uplifting and I learn so much from you all. your spirit, the way you want to fight is just inspirational. I think they should do a story on you for the Beacon :-) 

I'd be very interested to see what BCNA have to say regarding this. I never realised we had different issues. 

BCNA is only quiet new and needs opinions like this and those replying to this to know what this community truely needs. 

I feel if there was to be a story in the Beacon regarding ABC you could always put a kind of disclaimer on it saying this is a story regarding ABC please read at own risk or something like that. give the reader the choice. 

some may benefit, some may not. but i know I would love to read stories no matter the diagnoses. you should not be excluded. 

I think the fantastic thing about BCNA is that u learn u are not alone. I am so sad u feel that way right now... huge hugs amanda. keep warm and good on u for speaking up. 

Merylee

I would love to read more stories in my edition of the beacon around ABC. 

I have EBC and I understand the fear hearing about ABC creates. but it is the reality of our lives i think. we have to deal with our pink sisters getting diagnosed with ABC or hearing stories of ABC. but i find knowing you Amanda and others with ABC very uplifting and I learn so much from you all. your spirit, the way you want to fight is just inspirational. I think they should do a story on you for the Beacon :-) 

I'd be very interested to see what BCNA have to say regarding this. I never realised we had different issues. 

BCNA is only quiet new and needs opinions like this and those replying to this to know what this community truely needs. 

I feel if there was to be a story in the Beacon regarding ABC you could always put a kind of disclaimer on it saying this is a story regarding ABC please read at own risk or something like that. give the reader the choice. 

some may benefit, some may not. but i know I would love to read stories no matter the diagnoses. you should not be excluded. 

I think the fantastic thing about BCNA is that u learn u are not alone. I am so sad u feel that way right now... huge hugs amanda. keep warm and good on u for speaking up. 

Merylee

Very well said Toni.  I only wish I was able to voice myself like a lot of you lovely pink ladies can.  I wasn't offended by your words and I hope other people aren't either. 

Information is such a huge weapon to help us deal with this disease and we need to get it out there.

Mich xo