for young PRE-menopausal women: Tamox or OS + AI?

elise24601

My oncologist has given me a choice and told me they are equally effective for my particular cancer. I am 31.

I want to choose the option that is LEAST likely to cause the following:

weight gain, visual/ocular (eye) problems, acne, hair loss.

I know that women experience these symptoms on both regimens, but wanted to see what was more typical. Especially interested in hearing from women close to my age and women who have tried both options to compare SEs.

ErenTo

Hi elise, SOFT trial showed that OS+AI is a better option for two subsets: 1) women under 35 2) women with high enough risk to warrant chemotherapy. So you do fall in the subgroup that could benefit from OS+AI. Did you have lymph node involvement?

Here is the link to SOFT trial in case you haven't seen it: http://www.nejm.org/doi/full/10.1056/NEJMoa1412379...

I'm older than you (39 at diagnosis), but was pretty much pre-menopausal. Weight gain is not a guarantee on any of these regimens, in fact I managed to lose the chemo weight on tamoxifen. I was on Tam for 10 months until came out of chemo-pause and being in the high risk group, I thought I should give OS+AI a try. I have to say Tam was easier, I've been on Exemestane + Zoladex since April and my main side effects are fatigue and hot flash. I haven't experienced the dreaded joint pain yet, only have stiff fingers and toes. I'm going to give it a few more months and see if my body gets used to the low estrogen. Exemestane is the AI that is known to cause hair loss and acne, but my hair is still growing in pretty strong and haven't experienced a breakout yet. I think eye issues are more common with Tam (probably rare),

A 3rd option would be OS + tamoxifen, which has better survivor stat that tamoxifen alone and slightly worse that OS + AI. To be honest, I think most of my side effects are from the AI. It's a very powerful drug, so ovarian suppression may not be too bad.

elise24601

Thanks so much for your input! I am willing to accept a slightly elevated recurrence risk if quality of life would be significantly better, but if the side effects are fairly similar in both cases then of course I would do the one that helps the most according to the study. I guess I won't know until I try?

My mother did both with zero problems but she was 51 and almost at natural menopause when she started so I don't know if it makes sense to compare her experience.

I'm in chemopause now and have no hot flashes but do have fatigue and stiffness, although they are tolerable, I am still able to be active.

Also worried about the sexual side effects but as I am single, that concern is secondary to the others listed above.

ShetlandPony

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First, Eren's comments about the SOFT trial and a third option are right on. I have used both tamoxifen premenopausal and the aromatase inhibitor letrozole postmenopausal (permanent chemopause). I feel that the tamoxifen side effects were easier, but not so much that it is worth sacrificing effectiveness. Tamoxifen is anti-estrogen in some places (breast) and estrogenic in other places. So it doesn't cause such complete estrogen deficiency as the aromatase inhibitor does. I did develop a spare tire on tamoxifen, but did not gain weight; I weigh a few more pounds on letrozole. Just one size up in jeans. Maybe a little hair thinning on tamoxifen, a bit more on letrozole. No acne on either. No particular vision problems on either. Hot flashes: more throughout the day on tamoxifen, fewer but more intense on letrozole. Slight hand stiffness on tamoxifen, more plus general body stiffness/achiness on letrozole, but it improves with moving. Some vaginal dryness on tamoxifen, more on letrozole. To sum up, I don't think the differences are extreme, so I would go with the OS + aromatase inhibitor or at least the OS + tamoxifen if you are in a high risk group. You might ask your onc if your PR- and grade 3 mean the cancer was luminal B, and whether the aromatase inhibitor is a better choice for luminal B. Fortunately you can try a particular therapy and switch if needed. This is a hard thing to contemplate, and not fair. Still, we do what we must and keep living our lives!

KathyL624

For now I am doing ovarian suppression plus tamoxifen. I am working out anxiety issues and trying to find meds that work for that which may require me to switch to an A.I. But for now my doc wants me to stay on tamoxifen for a little while longer

LM070917

Hey, I've been on Arimidex (AL) and zoladex (sup) for nearly 7 months now and in the beginning I had hot flushes, muscle aches, some insomnia and vaginal dryness, but pretty much all side effects have calmed down immensely. I think it just takes a while. I'm not in misery and it's definitely worthwhile. I also take Zometa to prevent bone loss. The stats are better than tam particularly for young women and there is no association with secondary cancers such as uterus like there is with tamoxifen.

rozem

I have done all three - tam alone, tam+OS and OS + AI

Tam alone for me was by far the easiest - probably because it allowed me to stay in a pre-menopausal state. Estrogen is the fountain of youth hate to say it but its true - never felt better than when I got my P -

unfortunately because I did get my P back about a year after chemo my MO wanted to shut me down - was on Lupron for close to 3 years. My symptoms were worse than just on tam - increased hot flashes/vaginal dryness/joint pain/hair thinning. Towards the end of those 3 years I tried 2 AI's and couldn't tolerate either - vertigo and extreme joint pain - back to tam

At 3 years I decided to stop the shots to see if I was at natural menopause since I'm now 47 (diagnosed at 42) - 2 years later (on tam) my period came back ??? wth is all I gotta say!

so I'm back on the shots - having been off them for almost 2 years I do feel the difference - achy/headaches/flashes are all back but I'm hoping things will settle down in a few months. I will attempt an AI again because I have almost completed 5 full years on tamoxifen

The problem for me is that the SOFT and TEXT looked at women right after completing treatment - I'm 5 years out so I am not sure how to apply those statistical differences to my particular case

back to the original question - tam I felt the best, tam +OS not so bad and AI + OS the worst - but this is my experience and hopefully wont be yours - lots of premenopausal women do just fine with the AI +OS and I know that it gives the biggest survival advantage

MirandaPriestly

I'm 31 and have been on Tam for almost a month. I was given all 3 options (Tam for 10 yrs, Tam + Lipton for 5 yrs, AI + Lupron for 5 yrs). My husband is a physician and read the studies and felt that Tam was best proven for my small subset (diagnosed < 40 but didn't need chemo, so also fairly low risk comparatively). I've been dealing with bad cystic acne since starting Tam, but cystic acne has been an issue for me for severally years on and off...actually I finally thought I was done with it until BC struck 😑. So, it sounds like that could just be my body's response. Otherwise the side effects haven't been terrible, just night sweats and maybe some mood swings but it's hard for me to tell because my mood hasn't been that great since Being diagnosed with with breast cancer...