need to vent on er+

[MCS]

Please don't take it bad if you are er+. But all the articles, news etc is always about airmidex and onco dx etc etc for er + women but I find that apart for herceptin and thank god now for tykerb, there is so little information for us er-gals.

I tell you if it were not for this web, I don't know. thanks Christine and Joe!

how can we let this huge media know and various research centers that is so important to address us.

I'm always asked this, well you must be taking the little pill every day. There's so much ignorance out there. After the Edwards news came out, the news media only addressed hormonal breast cancers, nothing about calcifications, nothing about ibc, nothing about her2+, nothing , nothing.

I'm just having one of these days wishing for a little pill we could all take and even consider five years as no big! A woman I know that was complaining to me about arimidex,how inconvenient it was. I just blew it and told her if she knew how lucky she really was!! The whole lecture came out

Just pardon me big, ok . I'm usually so patient about it all but I need to blow steam here!

what do you think, do you have similar experiences?

XOXOX to all

MCS ( maria)

[Jean]

Dear Maria,

I can understand how you feel...(even though I am one of those er+) I have felt very fortunate that I can take an AI to counter the estrogen portion of my cancer.

First let me say that this site allows us the privledge of sharing our feelings
the highs and the lows. We are a support group that has no judgements, we
are all bonded together because we share this disease together no matter
what stage or hormone status we maybe be. We all feel the same pain
and care for each other. Breast cancer is hurtful, challenging and frustrating. We all want the majic pill to be discovered which will eradicate this disease.

All we can do is what we are currently doing here on this beautiful site
that Joe and Christine have been so gracious, kind and offering their
never ending devotion. My motto lately has been "Each day we get
a little bit closer".

Wishing you well
Jean

[KellyA]

Hi Maria,


I am also er-, and do understand how you feel. I am already feeling like I am at a huge disadvantage being Her2+ (other than the woman on this wonderful site, I am the only person I know out of the many who I know have bc), and being er- just scares me even more. How many nights I have wished that I could take the AI's and other meds.... It's depressing and sometimes I feel so helpless. I read constantly how her2+ has a "poorer prognosis" and then read how er- also has one. Sometimes I feel like the news just gets worse and worse. What I try to do, is remind myself how Herceptin has changed the prognosis for the her2 part, and even though there is nothing for us er- gals, that I am very lucky to have one target drug, rather then nothing.

One thing that I did recently that helped me enormously, was to sit down with a pen and paper and I pulled up the thread on date, prognosis, etc. and wrote down every person that was her2, er-, lymph node+ and was dx'd at the same stage or higher than myself. I wrote down the dx date and other necessary info. I was surprised that by the time I finished, I had FOUR pages of women that were doing wonderfully, with no relapses. That little exercise really gave me hope.

You know everyone is in thier own situation here- I am sure that many of us wish different aspects of each others dx's. er-'s want to be er+'s, her2+'s want to be her2-'s, stage IV's want to be stage II's, triple neg's wish to be her2+. But the fact is, that regardless of what the little pieces are, we all together make up the big puzzle, and we each need one another to see the big picture. I am so so grateful for this site, because without it, I would NEVER have the outlook that I do now. It has truely been a blessing. Try looking at that thread- I think you'll be as surprised as I was, at how many of us are doing wonderfully, regardless of hormone status, stage, etc.

Love, Kelly

[Alice]

I know I have been frustrated in the past in much the same way.A friend of mine was also diagnosed at the same time I was but she is er+ and I am er-. She just didn't quite get the significance of being able to take something as opposed to nothing. I think it is comforting for them to know that they have at least some sort of a safety net. My friend didn't realize how important that safety net was to her until I had to stop the herceptin due to my heart. She didn't realize that I have no treatment options unless there is a recurrance and then I dawned on her how comforting that little pill is to her.

[Lien]

Dear Maria & Kelly,

I can understand how you feel. ALthough I'm ER/PR positive, I missed out on Herceptin. It wasn't available in the adjuvant setting when I was diagnosed in 2004. I keep reading about how the Herceptin would cancel out the increased risk in Her2 positive tumors. I didn't get that benefit. Fortunately I have the option of ovary suppression and Arimidex. But it certainly is no walk in the park for many. Yes, it's another option and No not everyone can tolerate this therapy. Some women have very bad joint and muscle aches. Mine are mild, so I guess I'm lucky. But I can't get out of bed and start walking. I got used to that.

On another note, I remember reading somewhere that for the first couple of years prognosis is slightly better for ER pos tumors, but the difference is no longer there after 4 or 5 years. I don't think the difference in risk of mortality is very high. Just something like 6-10 %. That isn't a very big difference. I'm sorry, I don't remember where I read that.

I have never been able to find by how much my risk of recurrence / mortality is increased because of the pos. Her2. I've just heard: increased risk. Poor prognosis. But how poor? I've no idea. So I can let that thought scare me or I can choose to ignore it. I have to keep breathing, I have to keep eating and I have to bring up my kids.

Just hang in there girls. I want you to be around when I celebrate each year of survival.

Jacqueline

[Karen Weixel]

I think the fact that you are Her2+++ and can use drugs like Herceptin and Tykerb is huge.

Karen

[KellyA]

Maria,

I have some good news/information for you at this site-

http://www.medpagetoday.com/Hematolo...Cancer/tb/3077


Love,
Kelly