Multiple primary breast tumors, ER negative

[lani.t]

I read a few posts regarding ER negative breast cancer, and I can tell that most are frustrated at the fact that there's less information about ER negative disease.  Is there a BC support group/forum you know of that specifically deal with ER negative?

I had 3 different occurences of ER negative breast tumors since 1996.  All believed to be PRIMARY tumor instead of recurrence.  First tumor was treated w/ adjuvant chemo AC, second tumor was treated w/ adjuvant chemo CMF.  Now oncologist is running out of early BC chemo regimen for me and decided to go with chemo regimen for advanced BC.

I do believe AC & CMF served its purpose, which was to prevent & kill off metastasis.  But the fact remains that my breasts keep producing new tumors in 1-3 years rather than the 7-10 years generally believed.  I think the ER negative disease is a completely different disease and can not be lumped with other BC cases.  It's frustrating to me that doctors want to use "standard recommended treatments & answers" to address my case.  The standard applies for all BC, most of which were ER positive.  

There are sporadic studies out there, but it would be nice if you have any resources you can recommend.  I also long for support groups that talk specifically about ER negative disease.

Thank you much.

[CCF-RN,MSN-rf]

Dear lani.t:  There is no bias against ER negative breast cancer in terms of research.  Although there is always more to know, what we do know about ER negative breast cancer is that it tends to be more aggressive and it is less common - only because most breast cancer occurs in older women, who tend to have estrogen positive cancers.  Unfortunately, you may not hear about ER negative tumors as much because you hear more about the ER positive cancers.  I think this is partly because of the new drugs that have just been approved for ER positive tumors.  The direct consumer marketing folks have put a lot of this information out into the public audience so it sounds like everything is about ER positive tumors.  In fact, oncologists are very familiar with ER negative tumors.  Perhaps others will reply to your post and you can begin a dialogue.

[lani.t]

To snowWoman:
THANK YOU!! I read the commentary on that study.  I have read older articles regarding ER negative tumors but this was the latest & greatest.  They do talk more about HER2 overexpression which unfortunately doesn't apply to my case (I guess I should say my specific case is ER negative, HER2/neu negative), but there's also some optimistic tone regarding other ER negative tumors.

To everyone:
Anyone who has/had ER negative breast tumor(s) or anyone who has info, if you're willing to share your notes or start a correspondence, I appreciate a post or an e-mail (***@****).  Thank you!!

[surgeon]

It's not that ER status has to do with tumor genesis: in other words, cancers begin in an organ, starting presumably with cells that are normal for that organ, which mutate in such a way as to cause uncontrolled growth. To a greater or lesser extent, these cells retain some characteristics of the original cells: some colon cancers produce mucus, for example, and some don't. Some endocrine tumors produce hormones, or hormone-like substances; some don't. Likewise, some breast cancer cells retain sensitivity to hormone stimulation in the way the original cells did; some don't. So ER status or lack thereof has to do with how the cancer "evolves" after the mutation occurs, as opposed to being a factor in developing cancer in the first place.

[SnowWoman]

Here is some recent research/news regarding ER negative breast cancers:

http://jncicancerspectrum.oupjournals.org/jnci/

Go to "Browse all issues"

Then choose "December 2003 -- Vol., 95, Num. 24"

Look under articles ("Effect of Epidermal Growth Factor Receptor Inhibitor on Development of Estrogen Receptor

[ashridge]

I am one of the lucky ones, post-menopausal ER positive tiny (7mm)invasive ductal tumour discovered at routine mammogram 3 years ago. Lump and 10 lymph nodes removed (all negative)and radiotherapy given. Was put on Tamoxifen but couldn't tolerate it (extreme vaginal itching & discharge)so was switched to Arimidex about a year ago. I am now starting to feel extreme vaginal discomfort with this and wonder if anyone else has experienced this? I have a check-up this week (supposed to be 6 monthly but it's been 9 months). I am very tempted to ask to come off Arimidex as well, but since my sister died of BC and a maternal aunt also, there MAY be a genetic tendency. What would your surgeon advise (I live in the UK).

[czern]

I agree with you wholeheartedly. I had a lumpectomy last year with the standard AC and radiation. I knew that my cancer was aggressive but had no idea that it may recur so soon. This gives me a real heads up to be more vigilant. Thanks and I will be glad to keep in touch.

[lani.t]

Thanks for comments regarding the ER negative multiple tumors.

To SURGEON:  A bit more info, my first tumor was in right breast, lumpectomied, chemo'd (AC), radiated, and then I was on Tamoxifen because of the PR status being positive.

Second tumor was discovered in left breast about 1 year into Tamixofen.  This was lumpectomied, chemo'd (CMF), radiated.  Tumor was PR negative this time.

Third case was a multifocal (2 separate lumps) tumor discovered about 3 years post any previous treatments.  At this time bilateral mastectomy was done (note that it's prophylactic for the left breast and left breast was found to be free of disease).

I am confident we followed the correct procedures handling each of my cases given the situation at the time.  I just would like to find some kind of explanation for ER negative disease.  The ER positive people already have their explanation starting with the fact that estrogen encourages breast cell proliferation.

Thank you for your comments.  It helps to have contacts with someone who has seen many BC cases.

To CZERN: Are you interested in exchanging notes via personal e-mail?  I don't even know if we can do that.  Are you still undergoing treatment right now?  Just remember though that most tumors don't just recur.  In a way I'm lucky too that everything just happened in the breast and not somewhere else.  Wish you the best.

[surgeon]

If a woman has a recurrance or a new tumor within a breast, which implies that the first time around it was treated with lumpectomy and radiation, the standard would have been to have mastectomy with the second tumor, whether it was felt to be primary or recurrant. I assume that was done, and that the third was in the remaining breast. If that pattern occurred in a patient of mine, I'd strongly urge removal of that breast as well. When you say your breasts keep producing cancers, it suggests you still have both breasts. Is that the case? If so, was it with the approval of your doctors? As to ER negative tumors: it's not really that there's less information. It's well known that as a group they behave more aggressively than ER positive tumors, and need more aggressive treatment. They do represent a minority of breast cancers -- since more cancer occurs in post menopausal women, and most postmenopausal women have ER positive tumors. But studies of treatment and behavior are always broken down by ER status, so I'd say as much is known about each kind. Clearly, there is more to learn about all cancers.