Tamoxifen: Yes or No?

[cafe1084]

I have 3 weeks before I finish taxol and see the doc again. Still trying to decide about taking tamoxifen. Researching and reading Becky's posts regarding it, I m leaning toward NO, but would like to know from those of you taking it, how you are doing with it and from those of you not taking it, did you decide not to and why? I truly respect the knowledge and opinions of the women here and just need information. I have to make a decision and it has to be one I can comfortably live with- the doc has presented no further options to me and I want to know my options and I want to present an educated argument in case he doesn't want to listen.

Thanks in advance!
Steph C

[Andi]

I would recommend you follow Becky's advice and try to go the AI route if possible. I had just stopped my periods about a month before my diagnosis, so figured I would be menopausal before too long and would make the switch. I took tamoxifen for 1 year and finally tested so that I could change to Femara, but then had my recurrence. I will never know whether or not it would have made a difference for me if I would have gone the other route with things. I normally like to go the direction that if something happens, I won't have to second guess my decisions, kind of the "rather be safe than sorry" approach. As far as how I tolerated the tamoxifen, I really didn't have any problems with it while I was taking it. Best of luck to you in making your decision.

[Stephanie B.]

The only problem I had while on Tamoxifen was weight gain and occasional hot flashes but after being on for 7 months my doctor took me off because I had a recurrance so it obviously wasn't working for me.

Stephanie

[Becky]

Dear Steph C

I looked at your profile so I could give additional advice but it does not list how ER or PR positive you are (for example, I am 50%ER but PR neg). Are you strongly ER+ and PR+ (I am considered moderately ER+). Anyway, it makes a difference (somewhat). Also, how long will you be on Herceptin therapy (when does it end for you). This way, I can tell you about some studies etc that can help you with questions for your oncologist.

Have a great day

[cafe1084]

Becky,

I am ER<10% and PR-. This is why I am having such a difficult time deciding my course of action. If I were mod to high er/pr+, it may make it easier for me to decide....who knows?! Ill be on herceptin til next April.

[panicked911]

Hi:
My oncologist at a major Ny medical cancer center said no way to tamoxifen during the first 5 years or new studies are doen that revela something radically different. i am highly er nd pr positive as well as her2 positive. At age 43 - I was close enough to menapaus to be thrusted into it with lupron so i could take the AI's.
All three oncs I saw said the same thing - cuting edge reaesrch shows AI's more effective for triple positives than tamoxifen alone. The only factor that would alter this way of thiking is age. If you are in your mid 30's or younger - the docs are extremely reluctant to put you into menapaus because of unrelated issues. For her2 cancers the greatest chnace of a relapse is within the first two years, followed by 5 years. It can come back at any time but these two bench marks seem to be the biggies -

hope this helps

Susanne

[Bev]

Steph C. I'm not the greatest scientific source. As a triple positive, I feel that tamox can work for a year or two while you wait and see if you're post menopausal. I've looked at studies and I just don't see a big difference for triple positive in the first couple of years for AI v Tamox.

If you don't want to do either AI or Tamox, well I hope you tested under 5% positive. If not you have to do one or the other. Try the search tool in the purple bar above to learn more about previous AI/Tamox discussions.

Actually doing Tamox for over a year, resulted in only hot flashes.

I will be switching to an AI shortly. I am worried about the bone loss though. Have seen what it can do once you get older.

Keep on researching your options. Good Luck. BB

[dlaxague]

Hi Steph,

I don't know where you have your treatment, but have you thought about sending your slides and blocks for a second opinion pathology on the ERPR? I sent mine to Baylor, and wished I'd done it sooner. The first report was ER 5% and PR 0%, so I allowed my onc to browbeat me into taking Arimidex for two years. Then that onc left and the new one said no Arimidex. I was in a quandary and that's when I decided to re-do the pathology. When I did the second opinion at Baylor, it came back completely negative for both. Allred at Baylor has some studies to show that it's usually the other way around - when done at an expert lab, there's more positivity, not less. But regardless, this is an important decision and you want to base it on accurate information.

Another piece of information to add to the mix is that it appears that Elizabeth Edwards' primary cancer had a very low level of ER positivity and she did not do hormonal therapy. Many oncs recommend hormonal therapy for anything more than 1% positive, and you have to wonder if it would have made a difference for Elizabeth Edwards, now having a more ER+ recurrence.

It's easy to send your slides, whether you do it yourself or have the local pathology dept. do it for you. I sent my own - let me know if you need details.

Debbie Laxague

[Rupali]

Hi all,
I have been also really confused about ths topic. I was 10% ER+ and 10% PR+. I am finishing 2 years of Tamoxifen and almost a year of Zoladex. I have been always debating that when I am just 10% ER and PR positive then do I need these extra drugs and is shutting down the ovaries the best thing to do as I think it is no letting the body come back to its natural self.
My doctor is a leader in hormonal treatments and is leading lot of researchs at harvard. He said the best combination in my case would be to stay on Tamoxifen for 2 years and then move to AI for at least 3 more years together with zoladex.
I am 31 years old and dont know if my age has anything to do with this protocol.
Please comment.
Regards,
Rupali

[Becky]

Dear Steph


It is such a hard call as less than 10% (in many references) is called negative. Perhaps you should have your slides read elsewhere. For example, less than 10% could be the lowest reading on that criteria at the lab it was done.

For example, 9 is less than 10 and 1 or 0 is also less than 10 but if less than 10 - is it 0 in your case?

In almost ALL cases less than 5% is negative (which is the reading for my PR and my onc considers this negative because it is the lowest reading at the pathology lab where my slides were first sent to). I sent them to Sloane Kettering for a re-read and got PR negative status of less than 1% (since I suppose that is their lowest reading)

Tamoxifen tends to not work well if you are Her2+ in general and works even less so if you are not highly ER and PR positive.

[Rupali]

One thing which was very funny in my case was that when they did needle biopsy and came back with path report then they said I was 80% ER+ and PR + and this was done at a local hospital.

But the result of matectomy path report said 10% ER+ PR+ and strobgly Her2+++. So I guess just to play a safe game they put me on Tamoxifen and zoladex for 2 years and then to move onto AI and zoladex.

Dont know if this was the best approach or not. I now feel that it might be a good idea to send my slides to SLoan and get a 2nd opinion. What do u think.

[Becky]

My first pathology was done at a community hospital so I didn't feel comfortable without a big cancer center's assessment since they do tens of thousands of these every year. In many cases, (like grade of cancer), the tests are subjective and done by a human being's opinion. Therefore, you want someone who's seen thousands of slides because then that person's opinion is not subjective anymore but becomes more objective. My cancer was downgraded to Grade 2 (and reconfirmed by Johns Hopkins) and I feel very comfortable with this versus the community hospital.


If yours was done at a big cancer center, you should feel comfortable BUT - you did get 2 very conflicting reports. Which one is right? What if you couldn't tolerate antihormonals? With the 10% ER and PR - it wouldn't be so dangerous to not take something but at 80% - you better try to tolerate any and all side effects (I think you get what I mean). So - maybe a tie breaking opinion is what you need.

I hope this helps.