Tamoxifen anxiety
 

Hi, I am supposed to start chemotherapy *tomorrow* and, in my ceaseless quest to find something else to worry about, I have started worrying about Tamoxifen, which my onc wants to start me on after chemo (probably April-ish) since I am (just barely) premenopausal. I've read some horrible things about Tamoxifen side-effects, yet I notice a lot of people in this group are taking it. Any thoughts? Has anyone had a prophylactic hysterectomy instead of or in addition to taking Tamoxifen?

Thanks,
Jane

Re: Tamoxifen anxiety
 

I have been on Tamoxifen since Aug have not had any troubles with it, my hot flashes have even decreased. It's one of the things you need to try to see how you handle it before you go into more drastic measures.

Re: Tamoxifen anxiety
 

Thanks for the replies, and glad it seems to be working for both of you. But what about increased risk of endometrial and uterine cancer (and by a few accounts, even liver cancer or other liver disease)? Has anyone tried Raloxifene instead, or just a hysterectomy instead?

Thanks!
Jane

Re: Tamoxifen anxiety
 

Hi Jane -

I did opt to have the total hysterectomy. I was 40. I was then able to go on an AI which I was told, at the time, that was more affective for HER2. I am six yrs out now. No problems. Just went off my AI.

Re: Tamoxifen anxiety
 

One more thing Jane -

I was on Tamoxifen prior to hysterectomy and I felt it was quite tolerable but remember we are all different!

Re: Tamoxifen anxiety
 

Jane, cannot address your question but just had to laugh at your "ceaseless quest to find something else to worry about." I so related to that! Angst is my middle name sometimes! Good that you have a sense of humor about it. That will serve you well on this journey. And we will answer concerns along the way.
You might want to edit your signature so we can know more details about you, if you want.
Keep the faith.

Re: Tamoxifen anxiety
 

Everyone reacts differently to these drugs. i was on tamoxifen for 4 years with absolutely no side effects at all. Whatever route you choose, I hope it will be easy on you, with minimal side effects or down time!

Re: Tamoxifen anxiety
 

Debra,

Can I ask how your hysterectomy went? Did you start having menopausal symptoms immediately, and if so, how bad were they, and how long did they last? How long after chemo did you have the surgery? Thanks a lot; sorry if I seem to be prying. Feel free to send me a private message if that would be more comfortable.

Cheers,
Jane

Re: Tamoxifen anxiety
 

Hi Jane!

I think tamoxifen is different for everyone. I know woman who have zero side effects and some that have all of the side effects. I have the hot flashes and muscle/joint pain. My oncologist recently took me off of it for 2 weeks to see if the pain improved, it did not, so I am going to start physical therapy to try and get my muscles working. I was actually very anxious being off of it for the 2 weeks so I think feeling that extra cush of protection is worth all of the side effects.

I did ask for a prophylactic hysterectomy and because I am BRCA -, my oncologist would not approve it.

Re: Tamoxifen anxiety
 

Has anyone found that prophylactic hysterectomy/oophorectomy was worth the side effects?

Thanks,
Jane

Re: Tamoxifen anxiety
 

Jane,

I would assume that with an oophorectomy you would then be an on AI for a period of five years or so. AIs can have their own side effects so I encourage you to look at all aspects-Tamoxifen or ooph with AI-and what the benefits and side effects might be for each.

I was premeno at dx, chemically induced meno with Lupron for four years, then had an ooph. Was on Arimidex for 6 years and just recently changed to exemestane to see if side effects might be improved. Initially had severe problems with hips on exemestane, but this has begun to resolve.

Best of luck in your research!

Re: Tamoxifen anxiety
 

After having prophylactic hysterectomy/oophorectomy in January 2010 (due to new cancer incident in the family in addition to BRCA result), I thought I'd be done with Tamoxifen as I'd taken it for a total of 5 years. But my oncologist put me back on it after I saw him less than 6 months later. He sent me a note in the mail: "Just wanted to be sure you are still on Tamoxifen."

I did some digging and found articles about how Tamoxifen has been proven to be beneficial to those who have finished the standard 5 years. So far I don't seem to have any side effect. I've not had a period since late 2003.

Re: Tamoxifen anxiety
 

Nobody can predict which side effects will show up for you. So I guess I'd just try it if I were you. Then, if you do have problems, you could opt for Zoladex or Lupron shots to shut your ovaries down and try an AI. See if that works for you. Then you can decide whether you want to stay on the shots or have an oophorectomy. And you can try out each of the three AI's to see which one suits you best.

This way you can check the different options without doing something irreversible.

I had very few side effects from Zoladex + Arimidex, so I stuck with that for 5 years. Next month I will be 8 years out from diagnosis.

Jacqueline

Re: Tamoxifen anxiety
 

Thanks for all the replies, ladies! All this information is really useful. Jacqueline, you don't seem to have taken Tamoxifen at all, despite being premenopausal at dx. What led you to go straight to Lupron/AI?

Thanks,
Jane

Re: Tamoxifen anxiety
 

My onc said there was some evidence that AI's were better for Her2+ disease. Don't know if that panned out. AI's were quite new at the time and they were supposed to have fewer side effects. I didn't read much about joint pain at the time, so went with his suggestion. My onc thought that suppressing all hormone production might also be better than just doing Tamoxifen. We discussed pro's and cons for all options and decided on this combo. I also have severe food and environmental allergies/intolerance, and this seemed the safest bet for me.

Jacqueline

Re: Tamoxifen anxiety
 

Any issues with osteoporosis while on AIs?

Thank you!

Jane

Re: Tamoxifen anxiety
 

Yep, a little, but being tall & slim, as well as allergic to dairy, that was a risk for me before I started. I was very diligent about Dexa scans and taking Vit D & Calcium. The boneloss stabilized after two years and never got any worse than mild osteopenia. I once fell on my hip (the worst part for osteopenia) when I slipped on a wet bathroom floor. Didn't fracture anything. Phew!

Jacqueline

Re: Tamoxifen anxiety
 

Any problems with back pain? Your situation sounds a lot like mine, though I am older than you were (49) at time of diagnosis.

Thanks again; this is really helpful,
Jane

P.S.: This is going to sound like a dumb question, but how do you do a signature on these posts?

Re: Tamoxifen anxiety
 

I used to have a lot of backpain. Good PT and also PMA coaching, a technique I work with that eliminates stress, have helped.

Jacqueline

Re: Tamoxifen anxiety
 

I also am supposed to start taking tamoxifen or possibly lupron shots and an
Ai inhibitor. My question is which has less side effects? Can you take just tamoxifen and have the same results as doing the shots to shut down the ovaries? I'm only 36 and not looking forward to all the side effects of menopause!

Re: Tamoxifen anxiety
 

Hi Raquel,

Both tx will have the menopausal effects. Side effects vary with different people and there's no way of predicting how it will be for you. I did the shots & Arimidex and was mostly fine. I was 44 at diagnosis, and premenopausal. It was doable for me. After 5 years on ovarian suppressor my periods came back at age 50. By that time I thought the advantages of doing ovarian suppression outweighed the hassle of once again having periods.

Jacqueline

Re: Tamoxifen anxiety
 

Dear Jacqueline,

Do you attribute the back pain to the AI? Is it better now you've stopped? What is PMA - pilates?

Thanks a lot!
Jane

Re: Tamoxifen anxiety
 

Hi Jane,

No, the back pain is something that I had on and off most of my adult life. It got worse after rads, because I had to lie still in a very uncomfortable position. I did get some stiffness with the AI, but that subsided gradually.

PMA is a coaching technique. For more info: http://general.pmainstitute.com/pages/what-is-pma.php

I understand why you would want to know as much as possible about the side effects of these meds. Unfortunately, experience has taught me that there is no way of predicting whether you will or will not have these side effects. It is mostly a matter of trial and error. I hope you are as lucky as I was and will have very few side effects.

Love

Jacqueline

Re: Tamoxifen anxiety
 

Hi everyone -- im very confused about the tamoxifen vs ooph issue. I had bmx, 4 AC, and am on 8 of 12 taxol. Onc recommends tamox. Im 41. But I have been reading so many posts the last few days of women my age who get an ooph and then go on an AI. My onc also didnt say anything about tamox being less effective on her2+ patients, which I have also seen mentioned on boards. Does it vary from doctor to doctor, or is there a general standard for er+pr+her2+? Is there really proof that tamox will not work well if you are her2+? Thanks.

Re: Tamoxifen anxiety
 

Forgot to say, im also getting herceptin with taxol & will continue herceptin for a year.

Re: Tamoxifen anxiety
 

Hi Alli,

My impression is that her2+ is more likely to be resistant to Tamox than her2-. I've also seen the opinion that inducing menopause yields better outcomes. However, AIs have not been approved for premenopausal women in the U.S. I guess this means that if you want an alternative to Tamox, you either have an oophorectomy straight out, which seems pretty brutal, or use an LHRH agonist, then have an oophorectomy, then go to an AI. I think an LHRH agonist can also be combined with Tamox. I'm still grilling my onc about all this.

Cheers,
Jane

Re: Tamoxifen anxiety
 

Hi Jane - I too will be asking many more questions of my onc on this topic when I see her again in a few weeks. I'm getting closer to finishing taxol/herceptin and really need to feel comfortable with the next steps, other than the continuance of herceptin every 3 weeks. I will post any additional info I get, and would love to hear what your onc says to you about the HER2+/tamoxifen issue. Seems some HER2+ pre-men women do just tamox, without the ooph or suppression shots (side effects of Lupron & Zoladex sound awful). Wish there was a clear answer as to what is best for avoiding recurrence, which is what we all want. Thanks, Alli

Re: Tamoxifen anxiety
 

I had heard that if you do an ooph, you will still have some of the side effects of tamoxifen, only this time they are permanent. At least, with tamox, you can stop.

Not that I recommend it. I took tamoxifen and had every side effect you all are afraid of. I ended up on oxycontin for the joint pain. But, if it had worked I'd have gladly taken it for the five years. Only a few months after I ended up with mets.

I'd rather have the SEs than mets, that's for sure! :)