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Posted 5/29/2006 4:12 AM (GMT 0)

I am a fairly new member and as you can see by my footnote, I had bilateral mastectomies in 2004.  My cancer was estrogen receptor negative.  I am curious as to whether there are any other estrogen receptor negatives here?  I have not been impressed with any articles I have read on the subject, and feel quite scared and hopeless when I do read about it.  confused

If you have any input, I would appreciate reading it.

Grams4

Posted 5/29/2006 11:47 PM (GMT 0)

Grams,

Believe me, you are not alone (the board gets kind of slow around holidays as most women are off and about visiting, but you can expect more replies later in the week). I am both esto/prog negative and HER2+3, to boot.

There's not too much out there for us hormonally negative gals, either. In some ways, that's a good thing, since it means our type of cancer won't get "fed" by what our ovaries are (or were) pumping out. But it does make you think, "hey how come they don't have any pills for us to take?"

(Although, from what I read of those who are taking meds for hormonally positive DX, those pills can have some pretty nasty side effects, too).

What are your specific concerns about being estrogen negative? Most of what I read seems to be fairly positive for us negative ones (is that an oxymoron?).

Hang in there!

Erin

 

Posted 5/30/2006 1:33 AM (GMT 0)
Hi Grams,
I am a triple negative, diagnosed at 36, just after giving birth to a wonderful baby girl. Since I am triple neg. I do tend to question what was actually fuelling the darn thing! From what I have read, although ER- do tend to have a worse prognosis (and the prognosis is also poor for those who have been diagnosed while pregnant), chemo tends to "work" better on us. I have also tested positive for the BRCA gene. Try not to get too worried about what you read (yah, easier said than done), and if you need to verbalize those worries, we are here for you.

Chantry
Posted 5/31/2006 3:11 AM (GMT 0)
Thanks for replying Chemosabe and Chantry! I think the thing that bothers me most is the fact that ER- is more aggressive and the more likely to recur.

I come from a small town and it seems that every breast cancer survivor I have encountered is ER+. I have been very anxious to hear from ER- survivors.

It does tend to make me uneasy knowing that there is not a preventative medication available for ER-. But, I do agree with you, Chemosabe, that the meds taken by ER+ seem to be a real hassle.

Thanks again for replying to my post and for the support.

Grams4
Posted 5/31/2006 12:21 PM (GMT 0)
I am negative also, only in my dx! LOL I will be a 6 year survivor in Oct. Hang in there and stay positive on the outside, it works wonders.

Hugs
Sara
Posted 6/1/2006 8:38 PM (GMT 0)
yes there is an ER- club around here, don't worry! ;-) i was er-/pr- and her2neu e+++ ( so i had herceptin for a year). i was dx in 2001 and had bilat. mastect. too. i remember feeling very "left out" of the tamoxifen-thing, and hated seeing the ad in the magazinges with the lady with the big pink boxing gloves!! (happy for others of course, but still felt left out). yes ER- might mean more highly likely to reoccur, but there are LOTS of survivors of ER - around.... so don't dwell too much on generalities. it's hard not to, i know... but welcome to the group and come hang out with us! hugs---stefanie
Posted 6/2/2006 3:15 AM (GMT 0)

Wackygal - I feel better already...just having heard from those of you who have posted returns.  It feels good to know that I really am not alone after all.  I try not to dwell, but it crosses my mind more often than I like to admit. 

Thanks for the input and the support.

Grams4

Posted 6/2/2006 4:19 AM (GMT 0)

Hi there Grams4,

Just wanted you to know that if ever you need to talk and just chew someone's ear off i am a very good listener and check in here regularly.... I may not be ridding the same wave this very moment, but as i said i am a very good listener...

I send you all the strength i can muster for you to keep on strong.  Hope to hear from you... Brandi

Posted 6/7/2006 2:27 AM (GMT 0)
Hi Grams4,
I think it is me that you are looking for. I am 9 years out, ER-, Her2 +++ and by the grace of God, still here. I have had numerous treatments, but they were worth it. I have used my 9 years well, I think. I'd like more though. There are many of us that are ER- and still here. The board has been kind of quiet and I have been out of town. Like Jackie said, Never give up! I have never had a goods prognosis. If you ever need to talk, I'd be happy to speak to you. Hugs, I am, DiVanDyke.
Posted 6/9/2006 2:43 AM (GMT 0)
Thank you so much, DiVanDyke. And congratulations on your 9 years out! I may only be 1 year 10 months out, but I am aiming for much, much more.

What kind of treaments have you had?

Grams
Posted 6/11/2006 1:58 AM (GMT 0)
Hi Grams. I have all negative receptors, with bad prognosis. That was 4 years ago and so far so good. As you know, there is no further treatment for us, so I supplement and eat lo-carb. It has been proven that those who eat lo-carb diets (complex carbs and no simple carbs), have less chance for recurrence, as glucose is cancer's choice for fuel. Simple carbs cause insulin levels to rise, which causes glucose production in the body. Best to you.

Posted 6/11/2006 3:51 PM (GMT 0)

Hi Grams4! I am also Estrogen Neg. I felt the same way when I would talk to gals that were able to take the tomaxfin. It really made me angry. When I was rediagnosed several years ago, I thought that "was it". Wrong! I had weekly treatments of Navelbine and Herceptin for 26 months and in Feb, 2006, got an all clear. I take Herceptin 1x a month now as a preventative measure. This week an announcement came out that there is another new drug that has been approved that will take over if and when the Herceptin stops working. So you can't ever give up. Many of our members now are in clinical trials that may be able to help us in the future. There are lots of us on this board that are survivors w/ the same diagnosis that you had!

Hugs...Deb

Posted 6/11/2006 3:58 PM (GMT 0)

Hudalives: I debated on whether or not to respond to your post. I wasn't sure that it was worth the time that it would take me to type this. You make me very angry. You come here using the words "sorry for your grief". You have no idea what we are experiencing. You make it sound as though someone has died and I resent it! You come here to promote a website that is controversial and which, by doing so, is agst the rules of this website. I see that your posts have been deleted from one of the forums and I think it should be from here also. Please don't attempt to try to understand the women's feelings on this board because there is no way that you can. IMHO, you don't need to be posting here!

Deb

Posted 6/11/2006 8:23 PM (GMT 0)
Deb - Thanks for looking out for me with Hudalives. I was really thrown by what she wrote (and confused). I read her post late last night and actually cried over her cruel words "sorry for your grief". I don't even know what she was talking about. I assume it was relating to a herb or magical cure?

Anyway, thanks for all the wonderful posts from everyone, and especially to you, Deb, for your entry June 11 at 10:58 a.m.

I am just now catching on to the triple negative thing...and I guess I fall into that category. Sorry to be such a baby. I think I am just now trying to accept what has happened to me over the last two-years.

God Bless
Grams
Posted 6/11/2006 8:40 PM (GMT 0)

Grams: I am so sorry that the idiot upset you. It seems, from time to time, we have these individuals that feel they have the right to come here and post. Most of the time they are promoting some wierd meds, treatments or website.

Hey, what has happened to each of us hits at different times. No matter how well we think we are prepared - both mentally and physically - there are still all of the stages that we have to go thru....anger, grief, depression,etc. So don't be to hard on yourself. Go w/ your feelings and also share them w/ your support team. Whether it is your family, close friend (s) or medical team. It is important for them to know how you are doing mentally as well as physically. Keep coming here for support cause we have lots of it.

Hugs...Deb

Posted 6/12/2006 1:48 AM (GMT 0)
Deb - I also wanted to thank you for the information about Navelbine. I haven't heard of it before, but I will look into it.

I don't plan on ever giving up. I think I have just spent so much of my time in the past trying to be brave and looking like I am totally in control, that I forgot to grieve, hurt, scream and yell, and blame all the forces that betrayed me.

Thank God for your "all clear" dx in February.

Hugs right back at you!!!

Grams
Posted 6/12/2006 2:46 AM (GMT 0)
Grams: I know that feeling of not taking the time for yourself. For some reason, we think that we have to be superwoman. Heaven help us that we should show that we need help or time for ourselves. Hang in there and come here and post anytime. Trust us, we all have experienced the same feelings.

Have you had Herceptin?

Hugs..Deb
Posted 6/13/2006 3:19 AM (GMT 0)
Deb - I haven't had anything since my last chemo treatment December 2004. I am triple negative.

Thanks for the hugs!
Grams
Posted 6/14/2006 9:50 PM (GMT 0)
Hi Grams4,

Well, I would like to answer your question. I have been rather unusual in that there were so many mistakes made. And I mean by myself as well as doctors.

But, I'll list them and then maybe you will have a question.

I had 10 out of 18 positive lymph nodes. The tumor was under my arm. Please  forgive typing as I really can't see well. They did a lumpectomy because they said that there was no cancer in the breast. I had chemo and a stem cell transplant and then radiation.

\I later had a recurrence because the cancer was in the breast in the first place, most probably.

I had a 5 cc. tumor and it was removed by the world's best breast surgeon. Then, they did chemo and radiation. I was also in the hyperthermia trial that was only in two place in the U.S. I have been truly blessed with the very best of everything.

I also had complications from the radiation and more surgery later. I just had a PET last week and it was miraculously clear. The girls on this board have gotten my through all of this. It is a wonderful place to be. Love and hugs, Di

 

Posted 7/1/2006 4:48 PM (GMT 0)
Hi everyone,

I just got my result recently (yesterday) and I am also a double negative and Her2 (3+), node negative. I did not realise that it was so bad to be double -tive until I read this site. I have to undergo further surgery (they want to remove a bigger margin around the area in which they removed the tumour) and they are planning chemo after that.

From what I read on this site should I expect to have a much lower life expectancy with ER PG negative cancer? be objective please I am 34y/o, single and I would like to know what I should expect so I can make plan etc.. I need to find a goal and a reason to live and fight if I cannot have a family etc.

Thanks
Kari
Posted 9/2/2006 12:41 AM (GMT 0)
tongue  Hi Grams, I'm at a loss on this subject but interested. Ihave been taking hormones most of my life it seems. Birth control until I was 32, then after a hysterectomy I have been on Estriodol, at first it was Estratest. After 14 yrs I just went thru all the biopsies, and even removal of the mass. I have no idea if it was estrogen related but very curious. Will I ever be put back on them? I have a very hard time, emotionally, and with flashes, etc, and I want my hormones back!!!!!How do I find this info out for myself?
Posted 9/3/2006 5:30 AM (GMT 0)
ms.kentucky - Welcome to HealingWell.com Forum. You will get a lot of good advise and information from the wonderful women on this site. In answer to your question: When you get your pathology report back, you will be able to read about your estrogen receptors, progesterone receptors and HER2 status. Each will have either negative or positive associated with it. Estrogen positive girls are able to take tamoxifen, etc. as added protection after radiation and chemotherapy. Estrogen negative girls are not eligible to take the estrogen medications after chemo and radiation, but it seems they respond better to the chemotherapy. Let us know what your path report reads and keep on posting.
Grams
Posted 9/4/2006 6:10 AM (GMT 0)
I am at a loss about this estrogen or progesterone, related cancer. I'm waitin on biopsy results now, and I'm just guessing that they will be checkin my stuff for the hormonal tests, but I've been taking estriodal, or estratest for over 13 yrs, and its not easy when they pull the rug out from under ya and stop your hormone treatment. How are we supposed to handle living without our medication[as in my hormone therapy], the side effects of not bein on them are pretty bad. I'm sure I can do it tho if the doc comes back and says I have to. But I swear I'll go crazy without my hormones!!!!!! How do you ladies handle that part of this.
Posted 9/6/2006 1:31 AM (GMT 0)
Hi Everyone,

I was ER/PR - too....that was 12 years ago!  I had a bump in the road in 1999, but am doing great.  Thanks be to God! 

Susan

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