HER2+, ER+, PR+ and are taking Tamoxifen.

[AlaskaAngel]

I do hope the extensive discussion about choices in treatment is more helpful than confusing or frightening.

It is hard to know what is best for treating humans who are so strongly premenopausal, and harder still to figure it out when you are one of them... especially since there are so many variables that come with each person's situation. The choices are difficult for HER2's especially because as a group we are younger and have to give up a lot more QOL to live longer.

If the average age of bc has been assumed in general to be 61 (which is not exactly child-bearing age) then there would have been a tendency to just see tamoxifen as protection for most patients even though that may not be the case for a subset of patients that happen to be primarily younger. Tamoxifen has a much longer documented history than the AI's. Even just 5 years ago the AI's were not available except in clinical trials.

Because testing for HER2 has not been done across the board until recently and there have been problems with accuracy of testing, it has taken a while for the questions about tamoxifen for HER2's to be considered.

As I understand it, taking an AI like Arimidex or Femara or Aromasin is useless if you are not menopausal, but is more effective than tamoxifen if you are menopausal. There also seems to be some information to the effect that tamoxifen may not be a good choice in particular for HER2's. The result is that a lot of HER2's who are young enough to still be possibly premenopausal are going for ovarian suppression/ablation so that then an AI can work for them.

Now that Herceptin is an option for HER2's, do we even know whether a course of that in combination with chemo is enough to keep cancer at bay without any SERM like tamoxifen or AI for those who are HR+?

A.A.

[Bev]

Great thread AA. Looks like we'll have to write the book on this one too. BB

[snoopy]

Excellent thread - very helpful to read the thoughts and opinions of other.


Thanks to everyone who has contributed.

[panicked911]

I am also a triple positve ( er 80% and pr 70) and saw my main onc. agaion this week - again had the tamoxifen discussion - and she was adament that for her 2 - Ai's was the best solution - she did not rule out switching me to tamoxifen in a few years but said at least in the early going and until I pass the 2 yr, 3 yr and 5 yr mark NED she was strongly against switching.

The only reason this came up again is b/c of all the muscle/joint aches I have been having - she thinks it might be from the Lupron shots and herceptain. We agreed to wait to make the swutch until i am done with herceptain in November . She sid ti taken 3 months for it to leave your body. So by February we will see how much of of the side effects are herceptain related or due to arimidex and lupron.
I also told her about this sight and the poles we have been conducting ( she heads clinical trials for a major breast cancer center in NY) and strongly beleives that herceptain is ot the cause of the side effects many of us are experiencing. For me the most frustrating has been the "brain freeze or fog" and the inability to get words out - this became more pronounced when I went to thr 1x every three weeks of herceptain.
Would LOVE to go back on tamoxifen - felt great on it but based on what i have heard and read deathy afraid to do it...

and it's a bear to read. It's a retrospective study of Her1, her2, er, and pr status and tamoxifen resistence in women treated with tamoxifen only
by Arpino, et. al.

http://jncicancerspectrum.oxfordjour...nci;97/17/1254


In summary, our findings support the hypothesis that loss of PR in ER+ breast cancer is a surrogate marker for increased growth factor receptor tyrosine kinase activity that causes lower PR expression and tamoxifen resistance in some patients. The results raise the possibility that overexpression of only HER-1 and/or HER-2 affects tamoxifen response substantially only when PR is negative. If PR expression is maintained, perhaps signaling through the HER family pathways is low despite overexpression of the HER receptors themselves. Although response to trastuzumab has not been shown to vary by ER status, if the hypothesis that lack of PR expression is a reflection of active signaling in the HER family is correct, then the response to trastuzumab or other small-molecule HER-2 inhibitors might be different in the PR+ and PR– subsets, an idea that could be explored in ongoing adjuvant clinical trials. Finally, if the link between PR negativity and high growth factor receptor signaling can be confirmed as a cause of tamoxifen resistance, then therapies targeting the growth factor pathways in combination with tamoxifen should be investigated in patients with ER+/PR– tumors in future clinical trials.

[saleboat]

Dilly--

Thank you for posting that link. I hadn't seen that article in full. It puts my mind at ease a bit. I was 90/95 ER/PR and I'm on Tamox.

Jen

[Chelee]

I am lost on what I am suppose to be on? My onc doc wants me on femara....but yet I went for a 2nd opinion they said they really felt I was pre-meno and I should be on tamoxifen. I really feel I was pre-meno also. So why does my onc doc want me on femara? I don't know what to do? The other place I went to has been treating cancer patients for so many more years then my current place.

They really stressed the tamoxifen for me. I did have a menstral cycle until they shut me down with the herceptin and chemo. I don't know what to think. But I sure enjoyed reading all this. Some good reading here. Very informative.

Chelee

[astrid]

Chelee, your estrogen levels can be checked and then you will be sure if you are pre menopausal or not. It is a blood test.

Estogen levels for Pre menopause is:

Follic phase (first days of an ovulatory cycle) - 27-161

Luteal Phase (last fourteen days of an ovulatory cycle, associated with progesterone production from the corpus luteum) is 33-201.

Post menopausal is 5-38



So if you are below 27 there is NO doubt you are post menopausal.

[Becky]

Chelee


How old are you? Were you menstrating regularly before chemo? I am asking because I was 45 when diagnosed and was still menstrating regularly. Chemo shut me down (I had 2 cycles then stopped). When it came time for a hormonal, my onc at the time wanted to put me on Tamoxifen which I did not want to take because I am only 50% ER but PR negative (and being Her2 positive, this was not a good combo for me - plus, the trial with Herceptin did not come out yet so...I did not have Herceptin yet and without it, Tamox was not a good choice as it might be right now.)

I got the bloodwork done too and it showed I was postmenopausal too. But that changed. I was on Arimidex not quite 2 months and I got my period back. This can happen and an aromatase inhibitor can help that happen if you are "on the edge". Femara has been used off label to assist with fertility treatments. So, make sure your estradiol levels are checked all the time because this situation can reverse itself and you can menstrate again (and will have no ER/PR protection). You might want to consider Tamoxifen while on Herceptin and start testing estradiol while you are nearing the end of Herceptin treatment and switch to an AI then (if you test right and still haven't gotten your period in the meantime).

I ended up getting my ovaries removed to use Arimidex. For me, it was the only sure way to become postmenopausal.

Hugs to you

Becky

[astrid]

I am now 48 was diagnosed at 47. I was menstruating off an on though chemo. My last menstrual cycle was in June. My estrogen levels show me in chemo pause. I am going to have them checked again in October. I want to enter a clinical trial to compare ovarian function suppression (by triptorelin, oophorectomy, or ovarian irradiation) in combination with tamoxifen vs ovarian function suppression in combination with exemestane vs tamoxifen alone in patients with endocrine-responsive breast cancer in treating Premenopausal Women with Hormone-Responsive Breast Cancer.



I have until November before I am no longer eligible as I will have been out of chemo too long. Currently I am taking Herceptin every three weeks and I am on Tamoxifen. If I do not join the trial I will stay on Tamoxifen while on Hercerptin and then I want to rethink my options and have my levels checked again. I do not want to have my ovaries removed as long as I am in chemo pause there is really no need and at 48 my levels will continue to drop. If I am still in chemo pause in October then I will most likely stay menopausal. I stopped Chemo in mid March and have not had a cycle for two months.

[mindersue]

I finally made my decision on which hormonal therapy to get. After much debating, researching, and info-gathering from this site (THANK YOU ALL!), I decided to get Lupron and Aromasin. Today I got my first shot of Lupron and I'm happy to say it didn't hurt at all!

My gut feeling all along was shut down the ovaries and take an A.I. I read some things where shutting down the ovaries is effective in itself, and in post-menopausal women, AIs are more effective than tamoxifen. My gynocologist ALMOST scared me into taking tamoxifen, stating that severe menopausal symptoms could wreck my quality of life. She called me back the next day after discussing it with 2 other gyns, and said that each had different opinions and that ultimately it was my choice. She agreed that since I was already having menopausal symptoms from chemo, shutting down my ovaries may not affect me as severly as she had thought.

I decided on the shot vs. removal only because it buys me some time to "test" menopause and Aromasin. If all goes well I will eventually get my ovaries removed.

Having said all of this, it still isn't proven that Lupron + AI is the best way to go. I could've been in a clinical study that would answer the question of which hormonal treatment is best for premenopausal women. I really would have loved to be a part of that. But my gut wouldn't let me be placed randomly into a treatment arm.
Thank you again to everyone who has participated in this discussion. It was a tough decision and this board helped me tremendously.

[Chelee]

Astrid, Thanks for the information on the blood tests to check the estrogen level. Does this still work if we were put into chemo pause and I am still taking herceptin?

I want to be prepared for my next appt with my oncologist as this is something we haven't really discussed yet. She just told me matter of factly I would be on femara. But after going up to the larger cancer center for the 2nd opinion and being told to do someting totally different...I really need all the information I can get on this so I can ask the right questions and do whats best for me.

You guys have been so much help. Thanks again Astrid! Its funny how my onc doc never tells me any of this stuff. Thank GOD for all of you.

Chelee

[Chelee]

Becky, I was 48 when this all started and yes I was still having my cycles. Now they were getting LIGHT, and I did notice I missed maybe two cycles that year. But I still had one about every 28 days. However I do feel I was getting close to menopause. But it did stop the minute they started me on chemo and herceptin. So I have to agree with that other cancer center I went too..it would seen I WAS perimenopausal.

I noticed you got your blood work done on this too. My onc doc never brings it up? She WILL now. lol I am going to be more then prepared. My onc is so dead set on femara? Yet the other place mentioned tamox and even Lupron shots if necessary.

Thanks for all the great information Becky...much appreciated. I had no idea just how much of this I did NOT know. You guys are way ahead of me. This is serious business so I want and need to be prepared. You guys have been a big help.

Chelee

[firstplace]

I was pre-menopausal and her2 amplified 8.6 + ER+HR,PR+ I originally was diagnosed with dcis negative for all the above. During my 2nd lumpectomy, they found invasive less than a centimeter that was in my tissue, and none of the lymphnodes. They found it by accident, but I know it was God's hand guiding my surgeon's knife to save my life. They didn't even know what they had gotten and they had clear borders. They recommended radiation, not knowing my FISH report(I know I got that wrong) was 8.6 amplified. This resulted in my tissue being sent for the oncotype DX which is fairly new. It showed I had 40% chance of recurrence with tamoxifen and radiation alone, and 27% with chemo and radiation. Only thing is they didn't specify what kind of chemo, how long, and I don't remember if herceptin was in play with those odds. Either way, I had to wait until January to start my chemo after being diagnosed with cancer on 9-22-05. I went into chemically induced menopause, although I spotted lightly in January for a day or 2, then nothing since. As with the rest of you, my doctor did not give me any options and I was under too much stress at the time to know that i had options. My surgeon told me to trust the oncologist! Well, I didn't get who he recommended because of availability but they were out of the same office and I was told she was a good doctor who i could trust. My mistake was not getting a second opinion. She put me on Adramiacin/Cytoxin for 4 rounds every 3 weeks. I noticed alot of people were getting taxol and all the research I found showed that if you got A/C you got Taxol after it for 12 weeks. She told me because my tumor size was so small I didn't need it. I went along with it and went for my radiation and started herceptin during the radiation. Herceptin with the Adriamycin drug is very dangerous when combined and may still hurt me. Well, my doctor never seemed to have time to answer any of my questions. I am anemic and was anemic since 2000 and nothing helped because if I took iron i was constipated. Most of you are experiencing loose stools, I am having constipation from the herceptin and Taxol, or just one, but which? The last time I saw my old oncologist, she told me to hurry up and get in my gown because she didn't have alot of time today. That was after waiting for 6 weeks to see her when she didn't have time the previous time either. I would say she spent around 15 minutes with me since i became her patient. I asked for a copy of my records at the front putting down my reason as possibly looking for another doctor. I had no idea how I was going to find someone I trusted not connected to the same office. I had a call from the hospital to confirm information about my medical records and ended up getting the name of a doctor who dealt with anemia issues. I didn't even know my onc. was a hemotologist! The doctor saw me right away, spend 1-1/2 hours with me and then as he was reviewing my records, he asked me if I really didn't get Taxol. I said no, was it too late? He said it is never too late. I think I may be the only one to start Taxol after being done with radiation and 3 months past chemo before starting again. My hair started growing back again, and I was told I would lose it again. He made me wait 2 weeks before I could give him my answer. It was absolutely yes. How could I face my kids if I had not done everything I could to prevent it when i had the chance if it comes back. Before herceptin, getting her2+ was considered a death sentence according to some of my other doctors. I don't think it is that bad, but it sure scared me enough. The tamoxifen can cause uterine cancer ovarian cancer. I don't remember the stats now, but Herceptin causes one and Tamoxifen causes another. If I get a hysterectomy after my chemo, my ovaries will be out and I can go on a safer drug than tamoxifen and the risks will be less. We need to pray for each other since the her2 can travel un-noticed. I feel we need to do all we can if we can. I know I don't need my ovaries or my vagina or uterus anymore, and I can do something about that. I am already having hot flashes and mood changes and vaginal dryness making sex not as enjoyable, so this is another road to travel. If anyone has any more information for me, please let me know. Also, I wasn't even given the option of a mastectomy probably because it didn't go to my lymphnodes and they think I am still young.(46 till October)but I would have liked to know my options. I have 9 and 12 year old boys at home who are very active. It hasn't been easy as I am sure it hasn't been on any of you.

There is a great book out there called "A Reason For Hope through your fight with cancer." I might have the title wrong, but it really helped me.

One thing I have learned is that fear comes from lack of knowledge. That is why this sight is so great. We are learning from each other.

One more thing, question for all of you. If your cancer returned in either form, dcis or invasive, would you have your breast removed, one or both, or neither? I have had 2 lumpectomies and 2 biopsies off my size AA breast.
I go for my followup mammogram as soon as I schedule it and I had calcifications they had me come in for a second view in June for, and now I am feeling pain. It probably is the non-invasive, but I am really tired of this.

Hoping for help,

Firstplace(Jesus is Firstplace, not me).

[firstplace]

I don't know if my message is out there or not. This is Firstplace, trying to send my reply

[astrid]

First place, I think it is good that you switched ONCs and that you are now taking Taxol. I participated in a clinic study. This study is only for lymph node negative patients. If I was node +, my chemo treatment would have been 4 rounds of doxorubicin (Adriamycin - A) with cyclophosphamide (Cytoxan - C), and 4 rounds of Paclitaxel (Taxol) T. So, this clinic study wants to see if node negative women like me who do not need aggressive chemo treatments will do better with A or T as dose dense standalone chemo treatments for 4 or 6 rounds. My randomization gave me 6 rounds (12 weeks) of Taxol (T). I was very happy with my randomization because A is very hard on you heart and is the chemo that really makes you nauseated. Taxol is hard on your fast growing cells like hair and nails but they grow back. Taxol is also used more commonly for advanced Cancers that have spread. I was scared to be on Adriamycin because I am now taking Herceptin for a year. I started Herceptin after my radiation. Herceptin is an antibody drug that can be hard on you heart but has no real side effects. Herceptin is a fairly new drug and the long term effects on your heart are not yet fully known. If Herceptin had been around 10 years ago when my sister died of Breast Cancer she may still be with us. My sister had a mastectomy. Having a mastectomy does not improve your survivability or improve your chances for a distant reoccurrence. If you have a primary reoccurrence in the same breast that was radiated a mastectomy is necessary as they can not radiate the skin twice.



Also when you are truly menopausal, you can switch to an aromatose inhibitor and off of the tamoxifen to avoid risk of uterine cancer. The use of tamoxifen, an anti-estrogen drug, is commonly used to prevent a cancer recurrence in women with ER+ breast cancer. In many clinical trials, tamoxifen has been shown to decrease the risk of a cancer recurrence and increase overall survival in women with breast cancer that grow in response to the female hormone estrogen. However, the long-term use of tamoxifen is also associated with an increased risk of developing uterine cancer. According to a recent study published in The Lancet, the benefits of a decreased risk of a recurrence of breast cancer, attributed to the use of tamoxifen outweigh the risk of developing uterine cancer. The newer AI drugs do not have the same risk. AIs can not be used on premenaposual women unless the ovaries are shut down. The reason AIs will not work for pre menopausal women is that the ovaries and the pituitary gland have feed back to each other so when an AI tries to shut the estrogen down the pituitary gland it says “Hey, I need more estrogen” and the ovaries respond and create more. This doesn’t happen when the ovaries are shut down either chemically or by menopause because there is no one home to answer the pituitary gland when it demands more so it basically shuts up. AIs are not strong enough to shut down all the estrogen that the ovaries produce. They work on the other systems that create estrogen such as your skin and adrenalglands.



You do not have to have your ovaries removed if you shut them down and if you are truly menopausal the ovaries will be shut down.



As far as needing your vagina, I am 48, on Tamoxifen and still in chemo induced menopausal and had GRAET sex last night. Sex is important for a healthy marriage and a healthy marriage will make you feel happy. Please do not give up on sex.

[kat in the delta]

I am POST- menapausal and am taking Tamoxifen after all chemos, rad. and 1 yr of herceptin -----because the aromatose inhibitors affect your bones more and I am borderline osteoporosis-- ---------------Kat in the delta

[firstplace]

Did you have a hysterectomy?

[kat in the delta]

Yes, but I still have my ovaries....My onc had me do a hormone test to see if I was POST menopausal & I was.

[Joy]

I am triple positive and after initial stage I dx I began tamoxifen as I was premenopausal. I did 2 years of tamox after A/C and rads (we did not know I was her2+++ at time-FiSH proved that upon re-dx). I quit tamoxifen at re-dx because obviously it did not prevent recurrence and it was VERY advanced (although I truly believe I was more advanced viscerally at initial dx and we didn't check). When I did AI's I did zolodex as I have ovaries of steel. Now I've been in chemopause for 2ish years again and who knows after all the chemo and several years older (I"m only 39 though-just sayin') if I will ever be pre-menopausal again or not.

I consulted with an OB/GYN about an ooph., but he wanted to yank everything out and I freaked and ran away. He did not know he was dealing with home birthin', childbirth educator, midwife asst, slighlty cranky-feminist gal.