Is estrogen the only thing that warrants Tamoxifen ? ?

[mts]

Hello Ladies and Gents-

So, I am ER positve less than 20% and PR neg.
Last year the onc said it was OK for me to get off the tamoxifen (I hated the way it made me feel). I had also posted on this board about this issue and the responses went both ways. Last month the onc suggested I get back on the Tamoxifen because it "does provide a benefit"... like 3% !
So if you have any ER positivity you get tamoxifen.... is it that simple ?
When I got off the tamoxifen I was almost menopausal - Which with my low ER% was enough reason not to take tamoxifen. But now my periods are back (have been for about 6 months). I figure he wants me back on Tamoxifen to get me back into menopause...
I got my Px and just don't have the guts to take it. Here I am 3 1/2 yrs out from Stage I, I know that status can change overnight, but yet the added benefit is so darn minimal that I have a hard time validating taking it.

My question is: Is the ER percentage the only thing that warrants Tamoxifen or are there other biologic/metabolic factors that could be factored in ? I know this may sound whimpy when so many other women are taking heavy duty stuff, but I realy want quality of life and the tamoxifen did not give that to me. I have read over and over on this site about vaginal atrophy and dryness loss of libido...etc. I also took the effexor to counteract the tamoxifen... the effexor made me feel like I was wearing an iron helmet all the time, and constant motion sickness (sitting on a noodle at the beach makes me barf). I know no one can make my mind up but me, but I would really like to read any comments or advise...

Maria

[Becky]

Well another great benefit is that it prevents a new cancer from forming in either breast.

Evista (Ralioxifene) works the same way as Tamoxifen. Maybe you won't feel as bad on that and its better for the bones too. (Just thinking out loud)

[TSund]

Hi Maria,

Afraid I'm not much help, however I'm wondering what the side effects you experienced with tamoxifen.

I thought that the AI's contributed a lot more to the issues that you mentioned then tamoxifen; the vaginal atrophy, dryness, etc.

However, if you are taking the effexor I am guessing it is either depression or hot flashes? Ruth is experiencing some bad "needling" flashes the onc brought up neurontin (sp?) for this. She hasn't gotten the drug yet but may have to go that way.

My general dr with holistic leaning believes ER can be handled with progesterone, but I don't know the onc's stance on that. Might be worth a try, esp as you are PR-, there is debate on whether the effect of natural progesterone on PR+.

Anyhow, was wondering which side effects you were getting with the tamoxifen.

[Becky]

In general, Tamoxifen has more side effects than AIs and those side effects can be very serious. Whereas with AIs, bone loss can be dealt with with bone hardeners and exercise. The joint pain some get does get in the way of quality of life but is not life threatening.

Tamoxifen's side effects are similar to AIs with dryness and hot flashes but the uterine cancer, cataracts or blood clots are quite serious.

[dlaxague]

Hi Maria, you didn't get many responses so I'll add my two cents.

The benefit that Tamoxifen offers you depends upon your risk to begin with. It probably also depends (as you intuit) upon the degree of estrogen sensitivity of your cancer cells, although few studies have looked at this directly. I was encouraged (browbeaten?) to take Tamoxifen or an AI, with a 5%/0% report on ERPR. I was stage III, and my onc who usually did not push his opinions but only offered me the information and let me make my own decisions, said "you need all the edge you can get", and said that current standard was to treat any degree of hormone sensitivity (which was true). Jeeze, okay, after six months I gave in and took an AI for two years until I had my pathology re-done elsewhere and it came back totally zero.

I don't know where your pathology was done. If it was not at a comprehensive cancer center, I suggest sending your block to Baylor and re-testing, so that you're sure that you're basing your decision on accurate numbers. It's quite simple to do - you can go get your blocks if you don't already have them and send them yourself, or your onc or surgeon can arrange it for you. You could also get a second opinion on treatment recommendations, if you think that would help you decide. It's never a bad idea to get a second opinion.

I disagree with Becky that AI's have fewer side effects than Tamoxifen. It's true that there are rare life-threatening side effects with Tamoxifen but they are just that - really rare especially in people who have no uterus and/or no history of clotting issues. The reason that we know about those side effects is that we've watched Tamoxifen users for a very long time. We have not had that time (yet) to watch AI users and I worry in particular about possible cognitive effects from the complete estrogen deprivation of AI's. Other things like cataracts and retinal hemorrhages may also be an issue with AI's. But you'd have to suppress or remove your ovaries for an AI to be an option for you.

BTW, the vaginal dryness issue does not seem to be a problem with Tamoxifen like it is with AI's. Hot flashes are an issue with both. And Tamoxifen will not necessarily put you into menopause. Did you have chemo? That will cause menopause - either permanent or temporary.

So my two cents of input would be to advise you to consider re-doing pathology if it was done at a smallish facility, and then to consider the numbers and go with your gut or your heart or whatever that small voice is that knows what is right for YOU. You are the only person who can determine that, and I believe absolutely that whatever you decide will be the best decision for you.

Good luck, keep us posted as you decide.
Debbie Laxague

[mts]

Thank you all for your thoughtful responses... I did have my pathology checked twice- the second one at Baylor and the results came back at 15% ER positive whereas the first was 20% positive...
I did have DD AC+T+H and did go into chemopause...period came back a little and the Tamoxifen put me on the fast-track again to menopause. The tamoxifen made me feel like my head was in a vice- heavy/tight... if I moved my eyes without moving my head I felt like I would fall over. Like a continuous hangover without the cottonmouth ... also the joint aches and just overall lack of balance feeling. I also "felt" like I had cracked heels although they were perfectly normal... I suppose that is a needling feeling.
I took the Effexor for the hot flashes, it helped -but the foggy feeling of Effexor just made me more miserable. I am pretty tolerant of anything. Consider myself tough. Chemo was very tolerable- worked full time through it all.
Anyway, I will check with onc and see about alternative to Tamoxifen... The one thing for sure is that every little bit helps in preventing this nasty bug from coming back and I certainly do not want to play the "What if's" later on...
Thank you again for your kind responses.
Warmly --- Maria

[TSund]

According to our onc, the incidence of tamoxifen uterine problems etc. is much less in younger women (Ruth is 52), and much less if taken less than 5 years with a planned switch to an AI a couple years down the road after menopause is confirmed.

She thinks the verdict is not yet out on the long term side effects of the AI's because they are so new. (tho the reason she put Ruth on Tamoxifen is clear and simple because Ruth was not menopausal pre-bc dx).

Ruth has not had the headaches, etc, I'm sorry that you suffer those. I've seen many more on the AI's complain about joint pain, vaginal atrophy dryness, etc. than tamoxifen, but that might be anecdotal. I was concerned about the study that said the AI's were showing a less reoccurance rate, but that did not take the tamoxifen non-metabolizer percentage into account, and the percentage of non-metabolizers is greater than the percentage of benefit of the AI's. (lesson is, get the blood test!) I was VERY concerned about the studies pm tamoxifen not working on HER2+ Herceptin or even feeding the BC, but those studies were done without Herceptin, so not applicable according to our onc. (Our onc said all the original success studies of Herceptin were given with Tamoxifen in the ER+ cases and that they were synergistic together) I was concerned about continuing Tamoxifen after Ruth's year was up, and the onc said that the Herceptin continues it's work in the body and not to fret.

Sometimes it seems like we're damned if we do and damned if we don't...

[AlaskaAngel]

Hi,

My suspicion is that the reactions to these drugs vary by age (basically how menopausal one actually is), but certainly the reactions could vary due to other differences in our diagnosis or weight or you name it.

I have to disagree with DLaxague, in that after completing chemo my onc recommended tamoxifen. I asked him very specifically at that time whether it could cause drying and he laughed in my face and said no. Within 2 weeks of being on tamoxifen, vaginally I was dry. I discontinued it for a time in the hope that it would be reversible but it was not. I was 51 at the time and my guess is that likely for those who are younger (less menopausal), it usually tends to be reversible. Since there was no difference at all between getting back on it and staying off it, I got back on it and took it for 1 3/4 years total. I then discovered (entirely on my own, no thanks to my onc) that I was HER2+++ all along. I learned that for some HER2's it may be dangerous to take tamoxifen (google AIB1 and HER2). I brought that question to my PCP who raised it with my onc and they recommended I change to an AI since by that time I "probably" was menopausal. I stopped the tamoxifen and have not taken any AI. I'm NED.

If I can't believe what a highly reputable onc says about dryness resulting from a drug when specifically asked.....and worse, LAUGH in my face when I ask... If they fail 100% to be truthful in advance of treatment with any genuine discussion about these issues... and they still are not providing any information about the possible risks of tamoxifen to us for us to consider.... and if THEY don't personally suffer from these results... Then I'm much more likely to think they do not know what they are doing.

AlaskaAngel