HER2 Support Group Forums - View Single Post - New Proposed Changes to Mammogram Guidelines

Carolyns · 12-02-2009, 04:25 PM

Hi Gdpawel (and others... luv you all),
I am speaking to you because I have always followed you posts and find you to be extremely thoughtful and knowledgeable. I am a Stage IV breast cancer warrior. I have had this disease for 21 years 3 different times – 32 years old, 42 years old and then mets at 49. The first 2 cases were diagnosed via mammogram although the first time I was delayed by a year due to guidelines at that time. My doctor felt that I was too young.

Anyway, I had the pleasure of meeting Cynthia Pearson and other amazing powerful women at a breast cancer conference last year. I was hopeful that in the breast cancer and women’s community I could find hope and that I could calm some of my fears about being lost in statistics. You see according to all of the guidelines and evidence I didn’t and don’t have any options. I pointed out the fact that over 75% of the treatments that have kept me alive over the past 4 years are not approved for breast cancer. I mentioned that as I am more heavily pretreated I am eligible for fewer and fewer promising clinical trials. There is NO evidence to support anything we are doing and yet it is working. I am working – full time – raising my son – helping my disabled parents – loving life. Expensive treatments work (extend my life) for about 3 to 4 months each - but in a chain that adds up to 4 years so far. Anyway, I wish I could say that Cynthia had some words of encouragement for me but she did not. In this big breast cancer movement I am the minority (young survivor, no history, over 5 year cancer free both times, mets for 4 years and counting) but I will not go down without a fight.

At the same conference was a speaker who had worked with HIV / Aids patients. I asked how the HIV / AIDs community had come so far in getting treatments paid and patients accommodated. And why he thought that people like me were being forgotten in this breast cancer movement. He said that he thought that the reason could be that when you have HIV – Aids that everyone is “outside of the life raft” with breast cancer you have 95% (or so) of the population at any time in the life raft (cancer free) so there is less focus on the minorities of the group. Personally, I hope that as warriors we will fight hard not to leave our fallen behind even if the larger organizations feel they must.

In my long journey with this disease I am here to tell you that the population of young women getting this disease is growing exponentially. I see it. In 1989 I looked long and hard all over Florida to find one other young woman with breast cancer… now they are everywhere.

12-02-2009, 04:25 PM	#49
Carolyns Senior Member Join Date: Jun 2006 Location: South Florida Posts: 477	Re: New Proposed Changes to Mammogram Guidelines Hi Gdpawel (and others... luv you all), I am speaking to you because I have always followed you posts and find you to be extremely thoughtful and knowledgeable. I am a Stage IV breast cancer warrior. I have had this disease for 21 years 3 different times – 32 years old, 42 years old and then mets at 49. The first 2 cases were diagnosed via mammogram although the first time I was delayed by a year due to guidelines at that time. My doctor felt that I was too young. Anyway, I had the pleasure of meeting Cynthia Pearson and other amazing powerful women at a breast cancer conference last year. I was hopeful that in the breast cancer and women’s community I could find hope and that I could calm some of my fears about being lost in statistics. You see according to all of the guidelines and evidence I didn’t and don’t have any options. I pointed out the fact that over 75% of the treatments that have kept me alive over the past 4 years are not approved for breast cancer. I mentioned that as I am more heavily pretreated I am eligible for fewer and fewer promising clinical trials. There is NO evidence to support anything we are doing and yet it is working. I am working – full time – raising my son – helping my disabled parents – loving life. Expensive treatments work (extend my life) for about 3 to 4 months each - but in a chain that adds up to 4 years so far. Anyway, I wish I could say that Cynthia had some words of encouragement for me but she did not. In this big breast cancer movement I am the minority (young survivor, no history, over 5 year cancer free both times, mets for 4 years and counting) but I will not go down without a fight. At the same conference was a speaker who had worked with HIV / Aids patients. I asked how the HIV / AIDs community had come so far in getting treatments paid and patients accommodated. And why he thought that people like me were being forgotten in this breast cancer movement. He said that he thought that the reason could be that when you have HIV – Aids that everyone is “outside of the life raft” with breast cancer you have 95% (or so) of the population at any time in the life raft (cancer free) so there is less focus on the minorities of the group. Personally, I hope that as warriors we will fight hard not to leave our fallen behind even if the larger organizations feel they must. In my long journey with this disease I am here to tell you that the population of young women getting this disease is growing exponentially. I see it. In 1989 I looked long and hard all over Florida to find one other young woman with breast cancer… now they are everywhere.