oestrogen negative cancer.......ER-

didlems

i have had ER- breast cancer.I would love to begin a thread and invite other ER- sufferers to contribute and tell their stories.
why.......well we seem to be a forgotten lot when it comes to info and new treatments........
the ER+ girls have tomoxifan as a backup.......but we have nothing........lets have your views.......
didlems

Sierra

Hi there..

I am new here..
and am in that situation.
Shall we see who posts here then?
I have a limit as to how much typing
can be done.

Best to you..

Sierra

Marinza

Hi Didlem, I am interested in this topic, mine was ER- and PR-. (but also Her2-, so that was good.) ER/PR- tumors seem to be a mystery. I did chemo because of it, and full breast radiation after a lumpectomy. I was against the chemo, but I did it anyway, I did what we have available to us, plus the data showed that a person has a slightly better chance. Personally, I am not sure if tamoxifen is really all that helpful, I read different opinions about it. I am actually glad I dont have to take it, but I wish I understood more of the ER-/PR- situation. My tumor seemed to have sprouted almost overnight. I had a neg mammo 3 months before it. One morning I felt a lump sticking out near my chest bone, and it turned out to be very aggressive when it was removed. I met other women who said the same thing, that it seemed as if the tumor had come overnight. There appears to be very little data on what causes the ER- tumor, I would be very interested in learning more about it. Thanks for starting this thread.
M.

didlems

hello to Sierra and Marinza,
pleased to meet you.....
i had a full mactectomy in nov 2002 followed by 7 mths of e-cmf chemo,all done and dusted june 2003.i am feeling in real good form at the moment,though have had to have bone,cat and ultrascan scans these last few weeks because there is something unusual showing up in my blood that must indicate a problem.however,as they are all clear,as from today,i feel a huge weight off my shoulders that there is no cancer showing up anywhere.
so,life goes on.....the summer is coming and I just can't wait...........i shall look in daily to see if anyone can shed more light on this ER-
situation we fing ourselves in.
keep healthy and happy
didlems

Marinza

I found an interesting link about tamoxifen, and the puzzle of ER negative. The results for tamoxifen for hormone receptive tumors are remarkable! Much better than I had previously thought. But ER- is still a real puzzle...

http://www.dfci.harvard.edu/res/research/ernegative.asp

(Just copy this link, and paste it in your explorer)

Make sure you read all pages, as it is quite interesting.
<<<ER-negative cancers disproportionately strike younger, premenopausal women, African-Americans, women with a strong family history of breast cancer, and those who have inherited the mutant BRCA1 gene. Most tumors in women with the mutant BRCA2 gene, however, are ER-positive.>>>>

I find this disconcerting, because we dont have a history in my family, I am not African American ,I am menopausal, so that leaves me with possibly the BRCA1 gene, and the risk of recurrence. I feel so good these days, that I prefer to think that it wont come back, but my understanding is that it is indeed quite stubborn as the article points out. But, research is being done about ER-!

I hope more women with ER- will come to this thread, thanks again for starting it!
m.

Marinza

I meant to say, I am PRE menopausal.

I also wanted to add that I did 6 out of 8 rounds of CMF, which was horrible, horrible, horrible. At first I thought I was ok with it, but it became worse as time went by. I cut it off at 6 rounds, because I saw my body becoming a total mess, and I was very worried that there would be irreparable damage. Right now, things seem to be getting back to normal somewhat more. I was having severe depressions on occasion, with thoughts of wanting to die (all hormonal I think), and I could not stop bleeding, one period after another. My breasts felt like lead balloons, painful with every step, and I was so horribly bloated, and fatigued. The radiation was not so bad. there is a 40% chance of recurrence without it, if you have a lumpectomy. I am glad to hear that you're doing ok after the mastectomy!

I wanted to tell you what I felt around the time of the tumor. It almost felt as if I got zapped by a rogue wave, as if there was a little hole in my cell where a bad wavelength could crawl into, and then suddenly the tumor shot up. I still dont think it is a true "breast cancer", I think it is a cancer that happened to manifest itself in my breast, it might have been some other tissue, but it happened to be my breast tissue. This is what I felt, and perhaps it is true. The article seems to lean a little toward looking at different gene mutations as an explanation, and I often wondered if a mutated nucleotide could open the cell to a different vibration, and cause the cell to act like a cancer. I hope you find this interesting. I'd love to hear other people's experiences.
m.

nixic

Hi

I am 31 and er-, but strangley i am prog positive, i am told by my onc i will need Tamoxifen but i dont know if it will be worth it?? i dont know what to do...
Strange how Est- mainly affects younger women.
Nikki

Sierra

Hi Gals:

OKey dokey.. to share

I am grade 3 er-pr 3.5 lump.. one node pos.

re tamo.. dont know if I would want to take it anyway..

However, I am in menopause.. did take hrt

They offered me the choice of masectomy and I did not want to lose the breast. You have to wonder.. then what this all means.
I shall read the link. thank you.

I dont want to start worrying about this. I spent time on it before. It is what it is. I am at 4 years to date. Also, my Father had colon cancer. I did smoke.

How about you? do you still smoke or drink.
I drink red wine. That is all. One needs to live their Chocolate Cake.

Sierra best

Gracie

Hi ladies,

I'm also interested in the negative receptors. As some of you have read, my daughter has had the cancer return three times in the last six years. Like you Marinza, her lumps appeared over night. This last time was last March. She had returned from a tropical vacation last week of Feb. where she had worn a two piece and there were no lumps, three weeks later two lumps out of no where. Her first bout she had a lumpectomy, A/C and radiation. 19 months later it returned. She had a double mastectomy, reconstruction. 22 months later, last March, it returned. She had the reconstruction removed, Taxotere and more radiation. No family history, she was just 33 at first diagnoses, did not smoke, watched what she ate, exercised, she was tested for BRCA 1 & 2, neg. to both. Dr's are confused to say the least. So, if anyone hears anything promising I would love to know.My prayers to all of you.

Hugs

Gracie

Marinza

Hi Gracie, thanks for posting here, I was hoping you'd join. I've often thought about your daughter - what she went through was something else... I wonder if she should contact Dr. Myles Brown in the article, he may be very interested in her experiences. It must be terribly frustrating for both of you...

Sierra, I now how you feel, I look back at the cancer as a crazy nightmare, almost as if it never happened, and I too dont want to worry about it. It is good to know that you are 4 years beyond it now. I feel very good, and my sense is that it is gone. I too smoked (over 20 years ago), but I recently heard that there is no connection between bc and smoke. I did drink, and sometimes still have a glass of wine, and I keep hearing that there is a strong connection between alcohol, more than one glass a day, that increases the chance of bc by 30 percent. But then I also hear that a glass of red wine is no problem (my onc said it was ok, she had colon cancer herself.) I put on 30 pounds, and am in the process of losing it very slowly.

This week, Time Magazine has a very good article on inflammtion and cancer, and being overweight. Colon cancer was mentioned. Please get an issue and read it, it is definitely food for thought. Gracie, please take a look at that. It explained a lot for me, looking back at the years before the tumor came.

I also wanted to tell you that my grandfather had colon cancer. Both cancers (bc and colon) are epithelial cell cancers (the cells lining the duct). He also had a skin condition that was similar to psoriasis, dry and crackly, and my skin was somewhat like it. I used to compare his skin to mine, and when he got colon cancer, I knew for a fact that I was going to have cancer too. There is a link between colon cancer in the family and bc.

These are the links and dietary connections I have found for my cancer, but it is still a puzzle. The only other thing I can think of, is that over 12 years ago I stabbed myself with a needle full of Ethidium Bromide that I used in a lab (i used to work as a molecular biologist). This stuff is extremely carcinogenic and nestles between nucleotides in the DNA helix, causing it to become defective over time. Who knows....

I was really divided between mastectomy and lumpectomy, and chose for the latter upon my dr's recommendation. Whatever may be, will be... So far so good. But I am grateful forever to have found the tumor so quickly that it had not spread to my nodes.

To me the cancer felt as if I was taken over by something that was sapping my body. Similar to being pregnant I suppose, but not with the same joy. A cancer is sort of like an embryo, but completely taking over the body's resources.

I am still looking for answers, as you can see, but I do look toward the future, keeping positive.

Stay well, all! Looking forward to hear more about this.
m.

mar8dar

My BC was ER-PR- and I am BRAC2+ go figure.

My cancer also seemed to pop up over night. I noticed the lump in Jan 03 and then it grew so in Mar 03 I had it checked and here I am with all of you. My mother and her twin sister had BC so it is in my JEANS LOL.

Diet, exercise, alcohol, hormones, etc. what causes BC I don't think they really know. Even having BRAC2+ is no guarantee that you will get BC.

So I do try to eat healthy (forget the hormones in the milk stuff), I was exercising before BC believe it or not 7 days a week (weights and cardio), I still drink on occassion (wine, beer or the Captain (spiced rum) when will my number come up for a recurrence who really knows? I know that I have had BC and now trying desperately to live with the deteriorating body left over from chemo is an every day thing, is this pain cancer or is this pain normal the doctors are still looking into it as we speak. I have had so many tests in the last two months that I should glow in the dark. I feel for the poor ?@&amp;*#@ that purchased shares in my insurance company.

Mel

Pauline_E_

I was told my tumor was er-. Had chemo b/4 surgery 4a/c and 4 taxol to try to shrink tumor. Didn't do much. I had core biopies 4 different times thru out chemo with a research study. When I had my mast. 1/12 was told that some of the cells were showing er+ but very slightly. My onc. said this is good news. He put me on arimidex which I start tomorrow. Hope it helps.

Marinza

Here is some more info I found:

A short paper from the Annie Appleseed Project:

http://www.annieappleseedproject.org/ernegtumandr.html

From a woman who had several occurrences of primary ER- tumors in 3 years, like me, she too believes that this type of tumor is not a BC tumor, but a class in its own. Please read through this entire thread. I dont want to freak anyone out, but it is making me a little nervous.

http://www.medhelp.org/forums/BreastCancer/messages/C2367-8.html

Stay well, all.
m.

Marinza

One more. Slightly more positive news, also including postings about PR+ situations.

http://www.breastcancercare.org.uk/Chat/Forums/Youngerwomen/572066

m.

saluki

Hi Gals,
Just curious Marinza. Do you know if Pancreatic
Ca is also made up og epithelial cells.
My Mother died last year of parotid Ca (cancer of the salvary glands) and it was of the epithelial
type. Her sister died of pancreatic Ca both cancers not your garden variety. She also had a sister with colon Ca. Yet out of 18 kids none had breast cancer. That was my fathers sister.
Your info is important and disconcerting.
I've pretty much tried to put the cancer behind
me except for the screenings-- Colonoscopy was
Monday with a benign polyp. It is an important screening. What were the dietary connections to which you were referring?
By the way I found a supplement that I think makes an incredible difference in my mood. Its
a prolonged released magnesium supplement made from magnesium chloride so you don't get that laxative effect. Its called Pro-Mag put out by Douglas Laboratories. I was taking it to help
with the muscle contractures in my arm but it seems to be great for depression. Sorry for digressing from the topic but as always, you've given out so much information to digest. fondly
Susie L

Dragonfli

Hello all, I too am ER- dx in Oct @41 had 2 children by 23 , breast fed them, no family history. I am also fairly small breasted and my lump appeared at 12 o'clock almost overnight as well. I would have noticed it sooner at even half it's 2.7cm size, heck if I hadn't hubby would have.
Sierra, welcome!! I too am a Canadian I am in B.C..
I look at ER- as a good thing in a way, we don't have to take these other drugs to supress estrogen in our bodies, we don't have to worry that estrogen is feeding our cancer cells if any are left. Granted, we don't know what fed our cancer, but neither do millions with other cancers.
Good topic!!!
HUgss
Barb

Sierra

Hi everyone: Marinza (sp)

I will look at the link later.. not till the weekend is over.. if it is bad news..
what do you mean a class of its own.. not
bc plse..

note.. or did I mention: My Dad had colon cancer.
I still have not had my colonsocopy.. dont beat me up plse.. I am going.. in 4 months have to wait till then.. He passed on. it went to his lungs.. but my onc says there is no connection.
Others say there is.. What is true Plse? Have to wonder.

(I just happend to pick up a book tonight called German Cancer Therapies
from library.. Dr. Morton Walker..
I am a gal who is open.. curious.. and asks questions re all types of treatments..)
off the topic here sorry..

Sierra

Sierra

To Saluki:

I am very sorry to read your post and of your loss. One of my friends lost a sister to this pancreatic cancer also.

Hi Barb: you are in a lovely spot.. out West.. I bet

Sierra

Dragonfli

Here's a link
http://www.hopkinsmedicine.org/breastcenter/artemis/200401/feature2.html

http://www.hon.ch/News/HSN/516556.html

beachcottage

I forgot to mention no family history of breast ca.. Sierra my dad also had colon cancer.He passed away 16 months ago from heart disease and other complicatons ..(NED from colon ca) MY gastro doc said no connection...I often wonder??
Well ladies I am off to watch a little televsion...I have my last rads treatment on Monday and can hardly wait!!! Have a nice weekend...xoxo,Patti

saluki

Welcome Sierra,
I think you have found the best and most caring of support groups and in two days have managed to find yourself one of the most knowledgable people
on these boards (not me!)

Marinza-I have to laugh. I am Annieappleseed's
human experiment. I am Estrogen positive and
had spent two courses of therapy with accutane-
a retinoid---Now here is the kicker. The FDA
came out last year with a warning that accutane
can lead to osteopenia, osteoporosis and fractures. It is my belief that the severity of my fractures were not caused by chemo but the retinoids -Susie L

beachcottage

Hi Ladies...I am just catching up to this thread..Here's my story in a nut shell..

ER-PR->IDC>Stage 2>Tumor Grade 3>anigiolymphatic invasion>partial mascetomy>treatment--TAC followed by rads(I have two treatments left)..Have a few autoimmune issue's also (wheter or not it is relevant--who know's)

Marinza thanks for the link....I wonder why there’s been little research(attention) focused on ER-negative receptor tumors?? ...I wish there was something we could do to bring this matter to the spot-light in an effort to step up the research ..In any event thank you for starting this thread Didlums....Maybe there is someone out there reading this who can shed some light for us..................xoxo,Patti P.S.--Mel I am so sorry that you are suffering ..I hope that you will find comfort soon and that your docotor gives you something for pain management...Please keep us updated..xoxo,Patti

Marinza

Yeah, let's continue keeping up with research on this. That link was the first time I found something substantial about this type of tumor, last year I could not find much. It would be great if we could find some stats about recurrence for this type of tumor vs other types of tumors. Interesting how most of us had this thing sprout up overnight.

To me it was a cancer, not a "breast cancer", and it so happened that my breast tissue was my weak tissue, and for someone else it might have been the small intestine, or the colon, or the liver, or whatever. I think everyone has a "soft spot". Just musing...

Hope to hear more, I will continue to search a bit more on this every so often.
m.

Sierra

Patti and Saluki and
all listening in:

Have a lovely weekend..
and Patti.. I am sorry to hear about your Dad. It's party time for you after end of rads. re the colon connection: I hear different stories all the time. So, today is the day we have been given.

Best to all. Back next week. Tks for the links.
great info here.

Sierra

PineHouse

Thanks Marinza for recruiting me.

I have a need to connect with BC survivors who have similar cases (ER-, PR-, grade 3, usually multiple primary tumors), and this post is really a godsend!

Since 1996, I have had 3 primary occurences of BC, so yes, I believe my tumors just "pop up" while nothing was detectable a few months before.

I believe my case is attributed to hereditary genetic defect, since there's a history on my father's side (he also has prostate cancer, by the way). I have not been tested for BRCA1/2. I believe even if I was tested negative for BRCA1/2 it wouldn't mean that the cancer was not hereditary. I believe there are hundreds if not thousands of other mutations beside BRCA1/2 that we have not discovered yet.

My dream is that somewhere we'll have a registry of this particular type of BC so that someone can evaluate the data. Maybe there's a certain pattern to this occurence. Maybe there's a certain answer on how to fix the problem (a "fix" that some of us stumble upon, but yet not shared to others, I think we need to do this reaching out).

Basically I'm glad Marinza pointed me to this post. At least I can get to know a few people here who have similar BC and who have the same idea, and maybe compare notes. I am open to receive e-mails or if there's a few of us I think we also can get together via e-mails cc'ing everyone on the list.

didlems

wow !
hello to you all.
my old brain will try and keep up with so many people's replies.
firstly,marinza,on my initial diagnosis,the onc said,after biopsy,that the cancer they found in my breast was a secondary cancer because its profile was not a breast cancer........so, for some weeks i went around in a daze until further tests showed that there was no other cancer in my body,so this was the initial cancer but it wasn't behaving as a breast cancer should .....doesnt this sound similar to your theory and your cancer......?
i still find it hard to believe i did 12 rounds of chemo......after which,i had so many aches and pains, it just sent me round the bend!it was mainly very strange headaches for a few months,constant chest pain in specific areas(which was very frightning) and chronic joint pain......these have all more or less warn off......i'm just concerned now that as there is a irregularity in my blood .....the only part of my body they have not scanned is my brain.......so i'm a bit on edge !
but hey.....we girls don't sit around waiting for bad news do we........i can image that we are all busy getting on with our lives doing a thousand things at once.......like women do !
stay healthy and happy
didlems

PineHouse

Didlems:
Thanks for starting this post and getting everyone pumped up.
Your tumor that doctors said was lacking BCA profile I don’t think is the norm (even among us, a minority section of all breast cancer survivors). Did they tell you how different it was? Also, are they going to scan your brain at all or you’re going to have to keep wondering? Kudo to you for completing 12 rounds! I’m only on my 2nd right now and already complaining.

Nikki:
My first tumor 12/1996 was PR+, my onco also put me on Tamoxifen after chemo/rad. He did say there was a slight advantage you can get out of Tamoxifen even if you’re ER-. It didn’t work for me, since I discovered a 2nd, contralateral tumor while on Tamoxifen. If I was in your situation, I’d follow the oncologist’s advice (you can get 2nd opinions), but if I start seeing side effects that I think is detrimental to my well-being, I would pull out.

Gracie:
Your daughter’s story is very similar to mine. You can check out my stats at the bottom if you’re interested. I, too, don’t smoke, don’t drink, do exercise, but apparently that didn’t matter. Is your daughter done with all of her treatments for the latest dx? I send prayers for her.

Marinza:
I found 3 interesting issues regarding your posts. One is about your grandfather’s skin condition. My dad has something that sounds like that (but I don’t). The second one is the Ethidium Bromide episode. I would think if there’s any damage from it, you’ll see multiple cancers (multiple organs) instead of just one BC? The third issue is your comment that you are against chemo. I agree. I personally think the efforts for finding cancer cure should be overwhelmingly concentrated on prevention (thus it requires that we understand how cancers form). Chemo does a lot of damage to otherwise healthy bodies, but yet its job is only to clean up after the previous cancer, it will not prevent a new case of cancer to spring up.

Here’s my own stats for those who’s interested (you probably have read my case in one of the links Marinza provided).

12/1996 at age 35: Right breast dx, 2cm, lumpectomied, 3of16 nodes, ER-,PR+,HER2-, 4 cycles of AC, 4 cycles of Taxol, radiation, Tamoxifen (stopped 4/1999 at discovery of another tumor).

6/1999: Left breast dx, 2.5cm, lumpectomied, 0of12 nodes, ER-,PR-,HER2-, 6 cycles of CMF, radiation.

10/2003: Right breast, multifocal 3.1cm & 2.4cm (not related to the 1st tumor), no info on lymph nodes, currently taking Taxotere.

Paternal family history (no cancer on maternal side)-unfortunately I don’t have complete dx & rx reports:
Grandmother died of ovarian CA.
Father, currently age 75, dx prostate CA at 72.
Aunt #1, dx breast CA at 48, also colon CA later, died at 51.
Aunt #2, dx breast CA at 56 in 1993.

Well, I hope the best for everyone!!!

Marinza

Awesome Lani, that you joined the threat. I totally agree that we need to focus on prevention. Chemo is the bomb that you drop on the house to kill the mouse. (In postings last year we had a quite a thread going about the pros and cons of chemo, it would be of interest to you, but I am not sure if that thread is still around. You can click on any person's profile and read her threads.)

I found some more info on ER-, and will post that in a bit. (Lani, also check out the subsection Get Togethers, in case you're in the NY area.)

M.

joannnc

I think I read or heard somewhere that 20% of breast cancer is hormone negative. So even though we are definitely in the minority it really is not unusual. I am ER- PR- and Her2neu -. I was diagnosed 3/03 with 3.5 centimeter, grade 3 tumor at 10:00 in right breast. Had 4AC then 4 taxol every two weeks, lumpectomy with one node microscopically positive, and 31 treatments of radiation. My oncologist was very surpised that I was hormone negative because I was 54 at the time and 5 years post menopausal. The only risk factor I had was that I never had children. I really don't believe that our prognosis is any worse than hormone positive cancers. At least that is what I want to believe. Thank you again ladies for all your support.

mjamgb22

I was so glad to see this post.
My story: 41 years old, premenopausal,
Had clear mammo in May, 03, nothing was there.
diagnosed in 10/03, 2 cm tumor, clean nodes.
Grade 3, ER/PR-, HER2-,
Had lumpectomy, 4 AC and start radiation on Monday.
My tumor is at 5 o'clock position on right breast so I'm sure it wasn't there long or I would have felt it.
I look for ER- info everywhere but see very little. The links you all posted were helpful.
Thanks for starting this thread.
Margaret

Sierra

This is for Joanne. and
anyone listening in:

Joanne;

You and I are very similar
Grade 3 er-pr-one node pos.
I am a 4 yr survivor.. hope it continues
also I did not have any children
took the birth control pill.. way back
and also hrt.. did you take hrt
did smoke

Now, I see the gist of this thread is leaning
a bit towards alternative meds..

May I post this new book here..the name of it.
Myself, I take a lot of vitamins.. by a naturopathic doctor.. firmly believe in them
and also.. that we are being poisoned.. Yes I took the chemo.. but. only because that is all there is. I chose to do it.

Here is the name of the book I have
been given.. from the Library:

food for thought.. for those of us who
are.. open to explore other methods..


http://www.medicine-book.com/German_Cancer_Therapies_Natural_and_Conventional_Medicines_That_Offer_Hope_and_Healing_1575666103.html


Hope you can get this link. Anyway, it is intersting book. Makes mention of mistletoe.
Many other things as well. If I had more money,
I would take more alternatives. However, I focus
on walking, spiritual enlightenment, being kind..
and have eliminated many negative type people..
distanced them, that is sure.

One last note, my onc always tells me, he can keep the cancer at bay, but he cannot cure me.
No guarantees.

Well, must go
back in a while

Hope it is okay.. that this post is here.

Sierra