October breast awareness-LA Times
 

You may not feel the same way I do, but I feel that the media obviously ignores us when it comes to information about HER 2+ and it simply upsets me!

Recently, the LA Times has written a couple of articles on breast cancer, barely naming our minority group.

I wrote the LA Times. Below is my email to them. Again you may not agree with me, but if we don't speak up, who will?

Although I appreciate the LA Times article on 10/20/10 and the fact that you mention the other group of non responsive to hormone treatment, I believe that the subject is totally ignored for the HER 2+ women in the media. It's completely obscured. A couple of weeks ago another long article was also published in the LA Times, also not addressing this group. When I mention to people that I have (had) breast cancer, they automatically assume is hormonal, becasuse that's all the media emphasizes.

Why my concern? Well, you see I am one of those HER 2+ women.

I would like the LA Times to write another article on that segment of the population only.
An article that is well researched and documented. We do not have the privilege of a pill to control our hormonal balances so to prevent cancer from returning. Some women get hormone treatment even on preventive basis, before a diagnosis of breast cancer. I don't have that at all to prevent my HER 2 + cancer from coming back. How would you like to be in those shoes? I pray that I could have a pill every day! We would like a vaccine that can control the over prodution of the protein.

I believe that 20-30% of women are affected by this factor. Why should the minority be ignored, until a few years ago till the use of Herceptin came along, we had no good prospects. Herceptin was approved in Europe before the FDA gave the approval here. How would you like to hear that if you in an advanced stage? Now we have Tykerb as well but again is not the same as for the other 80-70% of women.

Breast health awareness is for ALL breast cancers. My type of cancer needs more money for research. Grants are needed to allow researchers to look more into this side of breast cancer illness. We trash pharmaceutical companies for outrageous profits, the media never looks the other way, the consequences of not doing the research and bringing new drugs. The process for approval of drugs is long . Without future research, I will die. How would you like to live with that sword on your head?

Please be informed. Address all sides of the issues.

Consider asking the Avon Foundation and visit www.her2support.org for information.

Re: October breast awareness-LA Times
 

Good for you MCS... I agree that there must be more awareness for Her2+ BC... before I had it, all I had ever heard about was hormone positive.

all the best
caya

Re: October breast awareness-LA Times
 

Way to speak up! And you are right, a lot of people know about breast cancer, but so many do not know about ours! Thanks for speaking up!

Re: October breast awareness-LA Times
 

Thank you so much! I am a nurse, and had never heard of HER2 until I was diagnosed, along with 2 of my cousins!

Re: October breast awareness-LA Times
 

Very well written ...good for you!

Re: October breast awareness-LA Times
 

Nice Job---thanks for taking the time to do this. We are talking about the LA Times you know----I don't think they will followup but I hope they surprise me.

Re: October breast awareness-LA Times
 

Maybe we should all be writing our major papers.....and Foxx

Re: October breast awareness-LA Times
 

MCS,I know the feeling,but I have recieved Cure magazine since I was dx'd in Feb 2009..www.curetoday.com it has quite a few
issues on Her2+ cancers,yes it would be nice if we were recognized,this is why I always come back to Her2 support!

Re: October breast awareness-LA Times
 

MCS,

I applaud your initiative to write the LA Times. The majority of your email was great stuff. The only concern I have is the dramatic ending about the sword on your head & similar comments.

We should direct our anger at the real enemy: Cancer.

In order to educate the public about Her2 breast cancer we might not want to risk putting a potential source of help on the defensive.

I think your idea to contact the Times is awesome. Are you helping to get the word out on the FDA decision not to FastTrack TDM1?

Re: October breast awareness-LA Times
 

A local publication here had an article on survivors and it misquoted one of them regarding HER2 cancer. I wrote to the editor suggesting that they get facts checked by a professional before they print them.

Am I stupid?
 

Breast health awareness is for ALL breast cancers. My type of cancer needs more money for research. Grants are needed to allow researchers to look more into this side of breast cancer illness. We trash pharmaceutical companies for outrageous profits, the media never looks the other way, the consequences of not doing the research and bringing new drugs. The process for approval of drugs is long . Without future research, I will die. How would you like to live with that sword on your head?

I may have taken the above quote out of context, however...am I stupid to not think that I am going to die because of my HER2 DX??? I am commenting on the letter to the LA Times. Am I stupid thinking that my through treatment with chemo, surgery, radiation and a year of Herceptin gave me a very decent chance at "long" time survival? Yes, more reserach and more info about HER2 DX would be wonderful, but in the meantime...do others think they are going to die?

Sorry to be so frank with this question, but this statement scared me. Please let me know what you think. Thank you in advance for your comments. I am not propeller head.

Greetings to all, Catherine

Re: October breast awareness-LA Times
 

MCS,

I applaud you taking the time and effort to object to something you feel strongly about, however, I may be in the minority here, but I believe her2 cancer is getting more of it's fair share of research and media attention.

While one time it would have been a death sentence to know one was her2+, I think this is not the case now, and has become the opposite ,and although I am also hormone pos, I don't equate that to my her2 survival at all but feel we have herceptin to thank for this.
I once read the term here that we now have what is "The sexy cancer" as huge amounts of funds and trials are going into her2 and I agree.
To answer Catherine, I also am thankful for any new research of course Catherine, and while I don't expect to live forever, I do expect many more years of survivorship ahead thanks to the aggressive treatment and herceptin I had as early stage!

Just my own opinion of course, in any group of bc patients my sympathies lie more with those triple neg ladies, although the PARP trials are helping these people really do only have chemo to rely on for now.

I think we are fortunate and I'm thankful for all those brave women who participated in the early herceptin trials to make it possible for me to have had it when dx:)

Re: October breast awareness-LA Times
 

Re: October breast awareness-LA Times
 

I agree Pink, I'm highly triple pos, but still feel my hormone status has no bearing on my her2+ and is a seperate issue.

In saying that, I'm grateful to have had herceptin and arimidex to help me after treatment to avoid a recurrance.

Re: October breast awareness-LA Times
 

MCS, you ROCK!

Re: October breast awareness-LA Times
 

MCS,

I think you started a good trend. I'm sure our local papers are looking for good stories.

I knew nothing about breast cancer before I was diagnosed. We could all write our stories and share our own experience with cancer.

We could take the work Joe has done on the website on step further and let others know we are here. We can let the public know what we need to advance treatment.

Let's turn our anger and frustration into a focused and constructive force.

Re: October breast awareness-LA Times
 

Should we just change our subscription to NY Times? :)

http://health.nytimes.com/health/gui...prognosis.html

Re: October breast awareness-LA Times
 

Re: October breast awareness-LA Times
 

What an excellent source of information. I've even learned some new things.