The weakly er+ group

[DianneS]

I want to start a thread on women who are her2+ and weakly ER+. We are a small group and I feel left out.

I know many of you are strongly ER+, but please, I would like to hear from as many of us in the Weakly Positive Group as possible.

I would mainly like to know:

Are you taking either Tamoxifen or an AI?

If you are not taking these drugs, how are you doing?

What are our chances of no recurrence?

Thank you so much.

Dianne

[bejuce]

Hi Dianne,

Please know that you are not alone. I'm weakly ER+ as well (5%) and having my original biopsy retested to confirm my status. I'm premenopausal (39 years old) and my period stopped during chemo in April and returned in October during radiation. My oncologist put me on Tamoxifen, and so far no period yet. I'm doing fine on it, with no apparent side effects besides the likely interruption in my period.

As for recurrence, I'd love to hear some numbers out there. I had what I call a gigantic tumor that appeared during breastfeeding my 3rd, and I'm high risk. After my surgery, my oncologist ran the Adjuvant online program but she said that with Herceptin, I have a. 70% chance of making it to 5 years. But since I also took Tykerb, I'm trying to hope for the best and a very long cancer free life to raise my children alongside my hubby. I think the numbers vary for everyone. I'm curious though - are the weakly ER+ patients at a disadvantage? What have you learned about this group so far?

Thanks and let's keep the communication going, I love this group!

Marcia (bejuce)

[Debra]

Hello -

I am weekly er+. I am +18 as far as estrogen goes which I am told is weekly positive. Not sure if that is true or not.
I am on aromasin and have been for almost three years. I really haven't had any problems with the drug itself; just problems with being menopausal since the age of 40. It hasn't been a great trip not having any estrogen. Daily, I have to remind my body that it is not old!! I will be four years cancer free on December 5th.

Deb K.

[DianneS]

Hi Marcia,

Thanks for responding!

My doctor (I live in Canada) said that all of the AI and Tamoxifen trials included weakly ER+ and strong ER+ women so no way to tell how just the weakly ER+ women did. I suspect there are many of us out there, but perhaps not many on this forum.

If there are any studies being done on this group I'd like to know about it. If there aren't any studies I am curious to know why not? There must be a few hundred thousand of us out there.

Marcia, how are you feeling on the Tamoxifen? Are you still doing Herceptin? I had to quit the Tam because I felt ill - very fatigued and spacey. I was on it for a little over 2 weeks and quit. Ditto with Arimidex. I'm afraid there's nothing I can take!

Anyway, good to hear from you and you sound like you're doing well.

Dianne

[DianneS]

Debra,

I was almost ready to log off when I saw your message. Welcome to the club.....I forgot to say that to Marcia. Guess it's a club we'd rather not be in, eh? :)

I think you meant to say you will be 4 YEARS cancer free? Congrats! That's wonderful news!

Did it take you awhile, if you remember, to get used to the AI?
If so, do you recall how long? I felt so crummy when I tried Arimidex and Tamoxifen. Just like I had the flu...tired and OLD.
I wasn't getting out exercising because I was too tired. Since stopping Tamoxifen (after a little over 2 weeks) I feel so much better!

Dianne

[DianneS]

Anyone weakly ER+ and NOT taking AI's or Tamoxifen?
Am I the only one in the world???

Dianne

[Debra]

Hi Dianne -

Yes I meant to say four "years'. I edited that post.

It took me about six weeks to get use to the AI. I started on tamoxifen but then switched after the hysterectomy.
I didn't feel the greatest either but it did get better. Once I continued to exercise and I tried to maintain a better diet, I felt much better. I still feel fuzzy sometimes and once in awhile, a little dizzy if I spin around too quickly but other then that, I think my body has adjusted. I am told these are also problems a woman has when going through normal menopause as well so I guess I would have experienced that eventually just unfortunatley sooner then planned! As I mentioned, it did take about six or seven weeks to not feel "icky'.

Deb K.

[DianneS]

Hi Debra,

Maybe I didn't give it long enough. I felt pretty yucky while on herceptin as well and my onc wanted to wait for a couple of months after I finished herceptin before he began the Tamoxifen. I was on the Arimidex for about 3 weeks and felt progressively more nauseated, so much so that I went to ER. Did you get that? Shouldn't one feel a bit better as their body gets used to either Tam or an AI, rather than worse?

I had a bilat oophor in early 08, before the bc diagnosis so I have very little estrogen left!

What does the Aromosin do to bone density, do you know? Do you get a bone density test on a regular basis?

I do exercise daily with at the least a 1/2 walk. I do Qigong (like T'ai Chi) but it didn't help while taking these meds.

I started the Arimidex in June-July '09, quit, was still taking herceptin x 3 weeks then. Started the Tamoxifen Nov 6, now quit. Am wondering if the herceptin is still causing some se's even tho I finished herceptin in Sept. 09. ??

I see that you switched to Aromasin....does this have the same stuff in it as Arimidex? Is it an AI?

questions, questions!!

Dianne

[Debra]

Hi Dianne -

The aromasin is an AI. I am not sure how chemically different it is but it is an AI. I struggled with arimidex-----severe joint pain which is why I switched.
I have DEXA (bone density) studies every six months. I am osteopenic but I was before the AI's. Chemo and menapause at the age of 40 played a hand in that! I have been on Boniva for over a year and my last DEXA showed quite a bit of improvement in my bone density.
I wish I had good advice regarding the AI's as far as whether or not you should try it again. Everyone is so different with those drugs as I am finding out. I can't believe the difference I felt after switching from arimidex to aromasin.
Those of us that are weekly est. + really dangle in the middle. My oncologist in Minneapolis stated "positive is positive" so he recommended the tamoxifen (before my hyst). I really would like to know where the break-off is for being weekly +.
I am thinking that you are thinking-----that you should try it again. Does your oncologist feel pretty strong about an AI?

[Debra]

Dianne -

Did you have a full stomach when you took the arimidex? I found that if I didn't I really struggled with nausea. With the aromasin however, I can get by without a full stomach even though it states I should take it after a full meal. I have a pretty sensitive stomach. I also discovered I couldn't take the AI shortly before or after I take my vitamins. I can't even take vitamins on an empty stomach!

[bejuce]

Hi Dianne,

Yes, I'm still taking Herceptin and will be on it until next summer. I've noticed that I get tired earlier at night and usually fall asleep much earlier than I used to but I don't think I can blame it all on Tamoxifen having three little ones (very energetic ones). I hope to be able to endure the SEs - as I told my oncologist and surgeon, I just want to live (don't we all) and will take whatever drug that comes my way that can be beneficial. I was shocked by my diagnosis having had no family history and breastfed all three kids until they were two years old.

But now that I've had it, I'm trying to learn as much as I can about the disease and hopefully help researchers toward better drugs, treatments, and ultimately a cure. I'm learning about breast cancer research advocacy opportunities and trying to stay involved as much as possible.

Thanks for your post! Hopefully we'll hear from many others.

Marcia

[freyja]

Dianne,
Good question. I am weakly ER+ and do NOT do any form of hormone therapy. So far so good. I am 32 years old, and I feel that screwing with my hormones could have more serious side effects than benefits. I am considering starting Neratinib since I'll most likely qualify for the trial. It targets the HER2 and since I'm strongly HER2 positive and weakly ER+ it makes a lot more sense to me to do the Herceptin or the Neratinib.
I work with a naturopathic doctor and try to control my estrogen balance with diet and supplements. Let me know if you want to know more about that.
Celeste

[DianneS]

Hi Celeste,

I am working with a naturopath as well. I'd love to know what your naturopath suggests. I thought I'd list some of the suggestions from mine, below. Some of the supplements I was getting from her I found I could get cheaper at the local health food store but she does have good recommendations for diet. She suggests these 12 foods on the grocery list:

brown rice
blueberries
lemons (lemon zest has limonene, a powerful anti cancer compound)
broccoli and broccoli sprouts
carrots
shittake mushrooms
salmon (not the farmed kind)
almonds
yougart
olive oil (can help with omega 3 & 6 fatty acids as well as alleviate skin and joint inflammation & weight mgmt.)

garlic - fresh & raw....add to salads. Cooked garlic retains cardiovascular protective properties but loses its immunological benefits.

ginger..use in stir fries, baking and boiling water as tea.

Dr. Schreiber, (MD, PhD) had brain cancer over 16 years ago and these are his recommendations for diet from his article in Prevention magazine:

Japanese green tea (sencha, gyokuro, matcha) contains more EGCH than common varieties of Chinese green tea. Green tea must steep for 5-8 minutes to release its catechins. Matcha is a strong tea and took me awhile to get used to.

Pomegranate juice
Cabbages and other cruciferous greens
Garlic, leeks, onions
Fatty fish - twice a week (or high quality purified fish oil supplements)

Citrus - eat whole and grate zest onto salads, fish, etc.
Berries
Dark chocolate (yes!)

I don't want to hijack this thread into a diet thread :) but just thought I'd post this

Dianne

[DianneS]

Hi Debra,

I was taking the AI's with breakfast and vitamins, which I always take in the AM. I did the same thing when I began the Tamoxifen.

Why would I feel ok for the first week or so on hormone therapy and then begin to feel like crappola? I felt so tired I was not walking or anything that required activity. The nausea didn't hit me with the Tamoxifen like it did with the arimidex. So, nausea with the AI and extreme fatigue & weakness and spacey on Tamoxifen.

My onc says it is up to me if I want to take it or not. He says a 4-6% benefit might be seen as a lot for some women and he is encouraging me to take it but the final decision is up to me. I hate that! Four to six women out of a hundred that could benefit is pretty small. Yup, I'm on the fence...I understand about se's but thought I would get better over time as I took the Tamoxifen, not WORSE! I began it Nov 6 and quit 16 days later, and two days later felt so good. Looked much better, too!

I am thinking like Celeste, maybe it's not a good thing to screw with the hormones and if there aren't any scientific groups studying the weakly ER women, why are we subjected to hormone therapy that works for strongly ER women? Besides, I am concerned that everyone gets the same dose pill, whether you are 100 lbs or 400 lbs. Doesn't make sense.

Arrgghh.

Dianne

[emily]

Hi Dianne,

I don't log on often but noticed your post. My history is- Diagnosed July 2004 8mm tumor, ER+ (10%), PR-, Her2 +++ no nodes, no vascular invasion, lumpectomy + rads, no herceptin.
I took tamoxifin for 2 years and then switched to Arimidex. I stayed on it for one year but decided to stop as it was affecting my bone density. I had osteopenia and osteoporosis before diagnosis. I am now 5 yrs+ and so far no recurrence. I'm not sure if I made the right decision regarding the AI but I felt as if it was poisoning me.
Regards,
Emily

[flynny]

Hi Dianne, As you can see by my signature below I too am weekly positive. I am currently taking Tamoxifen and have done really well. I lost my period almost immediately after my first maybe 2nd tx. I JUST got it last Friday. It has been awful. I thought it came back because I had been bad about taking it over the past month (I forgot or fell asleep 2 or 3 times each week). My doc said it had nothing to so with it. Would love to know about reoccurremces etc.

[Shobha]

Hi Dianne,

I was given a creative solution since I am weakly ER+ and had osteopenia as well. I was given Evista (Raloxifene). Although Evista is a drug for increasing bone density, trials have shown that it has the same benefits as Tamoxifen with far less side effects.

Something you may want to discuss with your onc...

hugs,
shobha

[bejuce]

Hi everyone,

I had asked my oncologist at Stanford to retest my hormonal status after my surgery. Because I had no tumor left in the breast, she said that the only way to retest it is to get the original tissue block from my diagnostic biopsy back in February.

I got the tissue block from the clinic where I was diagnosed, and yesterday found out that my ER status came back as 30% (2+). I was 5% before. My oncologist told me that it's common to have false negatives with the hormonal staining test.

Not sure how this changes things, since I'm already on Tamoxifen. She said that I may be a candidate to take an AI for 5 years after my 5 years of Tamoxifen. I asked her about ovarian suppression but haven't been able to do much research on it yet. She said I need to consider all the side effects and the fact that the debate on whether is beneficial for someone in my position is still ongoing.

Has any of you have your biopsied tissue restained? What did you find out?

Thanks!

Marcia (bejuce)

[weety]

I am so glad to have found this group! I, too, am weakly positive for estrogen receptors, but I don't have a number--path report just says "ER-weakly +" My onc says that can mean anywhere from 5-15% but it doesn't really matter because being "kind of" estrogen positive is like being "kind of" pregnant. You either are or you aren't. She also said that the estrogen receptors are quite fragile--sometimes they can even break off before they do their staining--so it is not uncommon to get a higher number if you have it redone. Lower numbers are not common, though, so weakly positive may be more positive than you think.

So now that I am finishing my treatment (I haven't figured out how to add all the info to my signature yet--is there an easy way to do it?) and will just be continuing herceptin for the year, we are starting to figure out my next steps. I am only 39 (by the way, I found my lump while breastfeeding my 3rd baby as well) so I am premenopausal, except for the chemo induced menopause which I guess will go away sometime after chemo.

My family has a history of uterine cancer so both oncs I saw would rather I stay away from tamoxifen. But that's where the consensus ends. My current doctor wants me to take raloxifene (evista) because it is an alternative to tamoxifen and works the same way, but everything I have read about it says it is NOT indicated for invasive breast cancer, just DCIS and for the prevention of BC in high risk women. Shobha, I saw you are currently on Evista. I would love to hear more about what you were told about this drug. The other onc I saw thinks the AI route might be a better choice, but then I would have to either shut down my ovaries with lupron or do the surgery.

I don't know which to do. I hate it that everything with cancer seems to be just a "guess." Whose guess is best????? I'm already an indecisive person, so having 2 very different opinions has made this even harder for me!

I hope some of you are still checking these boards. With the holidays I'm sure everyone is extra busy! I just joined but have been doing extensive research and that's how I found this site!

Cathy

[alicem]

I really don't know what I am. The testing done on my biopsies indicate that I am ER+, but the testing done for my Oncotype DX test indicate that I am ER - . . . my oncologist has me taking Arimidex anyway. Anyone out there have a clue as to why this is the case??? (You can read details in red print in my signature below . . . )

[Becky]

Alice

At SABCS 2007 there was a presentation aimed primarily at ER+PR- tumors where they took a "molecular" picture of the tumors and compared them to the molecular pictures of ER+PR+ and ER-PR- tumors.

Bottom line is some ER+PR- tumors look like ER+PR+ tumors and some look like ER-PR- tumors and some are truly unique and are thus ER+PR- (but just a small portion).

However, the presenter also said that some ER+PR+ tumors look like ER-PR- tumors (and vice versa) and this is probably what happened to you (perhaps).

They did not do this in conjunction with any other markers (such as Her2) but the presenter was indicating that this may be why some women don't respond to endocrine therapies - because their hormone positive cancer is actually very different than what is expected.

[DianneS]

Taking hormone therapy is a highly personal decision. I am weakly ER positive so hormone therapy would benefit me 4-6%. That is a very very minimal amount of benefit, considering the serious side effect from hormone therapy. I was serious enough about considering taking it to do the metabolizer test to see if I could metabolize Tamoxifen and I am a normal metabolizer, but it makes me feel sick. So did Arimidex. I tried for weeks to take this stuff - first Arimidex for 3 weeks, then Tamoxifen and felt sicker and weaker every day. My onc said if it was him, he would not take it because of the small benefit. Everyone's diagnosis is different so everyone has to decide on their own. As far as I am concerned there is no study about weakly ER+ women - we are lumped in with studies involving strongly ER+, everyone gets the same dose pill (one size fits all?) and there is no evidence that taking it for 5 years or less - or more - are better. My onc told me that regular vigorous exercise is proving to be better at beating getting a recurrence than chemo! As far as I am concerned my immune system took a big hit and getting it built back up as fast as possible with exercise and good eating habits will help keep me strong, not more chemicals in my body.

Some women just can't take hormone therapy and do just fine. If you are willing to put up with side effects and risks , then go for it. But it's your decision and yours alone.

Have a Peaceful Holiday Season and I wish you all the best,

Dianne

[Jackie07]

I thought I had posted something somewhere...

I was 'weakly' ER + and PR-. Have been taken Tamoxifen for almost 5 years now. While contemplating getting hysterectomy/oophorectomy I 'accidentally' found out from my oncologist that the sample from my mastectomy (recurrence) in 2007 was ER -. But the oncologist thought it's still a good idea to get rid of my uterus and ovaries. Come January...