Changing to AI/OS from Tamoxifen after reviewing SOFT study?

I am 54, diagnosed at 52, and at that point definitely pre-menopausal. I think that this is a very personal decision. My oncologist came to me with SOFT results as well. I was on monthly Lupron (HATED the SE's - abdominal and legs swelling, intensified hot flashes, general malaise for days - some women have no SE?) and Tam (no SE - felt great). She said that an AI would prevent recurrence more effectively for my ILC. Offered oophorectomy as best option for ensuring menopause, but affirmed 5 years of monthly Lupron otherwise. She claimed that there would be no way to accurately test for stopping Lupron any earlier. I could tell that Lupron was hard on my body. And all the SE/risks of oophorectomy seemed to be driven by menopause, which was my ultimate goal... So, I chose to be finished with the monthly chemical injections - a happy choice for me!

The SE's of the AI's have been very difficult for me - lots of joint pain, back pain, headaches, insomnia... My left knee swells to the point where I can not stand or walk... So, I may be headed back to Tamoxifen? I really value quality of life and standing and walking without pain would make life much more livable. I wish that I definitively knew the cause of my discomfort. I still believe that the oophorectomy was a good choice for me, avoiding those chemicals... I am sensitive:)

Daisylover, are you saying that your SEs are less with the ooph than on the Lupron? I was thinking that menopause is menopause but if that's the case, sign me up for surgery.

Rozem, have they done any bloodwork on you to determine menopausal status or are they just relying on your lack of periods? My dilemma is I recurred on tamoxifen, so tamoxifen does not work for me, and yet its bad to be on the AI if you are not menopausal. My MO did some bloodwork at the end of the month last month and I see her in November, so I'll see if she has any news when I go next time.

twohobbies I went off 2 years ago and they tested me a few months after and i was in menopause. A few months after that my period came back. Unfortunately if you arent close to natural menopause you can "snap" out of menopause. Thats why I dont think there is a safe way if you are young to just stop lupron and see what happens if you are on an AI. Thats one of the reasons why I stayed on tam. I couldnt tolerate the AIs plus i want to be able to stop the shots without the worry of no hormone therapy. If you recurred on tam then yes an AI is your best defence. If u are closer to natural menopause ask tour doctor if its safe to go off?

I was 43 at DX, 44 at surgery time, and premenopausal. Next week I will be having a full hysterectomy due to ovarian cysts. I didn't have chemo, but have been on Tamoxifen since the end of RT in February. My MO plans on the continuation of Tamoxifen. I am getting nervous about the approaching surgery, but I am ready to be pain free

Be wary of those over the counter supplements. Most of them have herbs and plant based extracts which are estrogenic in nature, that is how they work. Many plants have estrogenic qualities.

Amstar 15~

AI's, like arimidex, only stop the estrogen from being made in the fat, muscle, and adrenal glands. On an AI, her ovaries could still produce estrogen, so she could have a period. Does that make sense? I am trying to find an easy way to explain it.

I will say that I am 33 now, and after 4 rounds of chemo the Gyn doc said my ovaries were toast.

Thanks Daisylover for the reply. Something to consider.

Amstar my doc measured my FSH levels and I showed no signs of menopause despite not having a period after chemo. I would see if that was measured. I don't know if it's good to be on an AI if you're not certain to be in menopause. At least that's what I have been told.

Does anyone know how Lupron and menopause were determined in the TEXT and SOFT studies. I would want to make sure my MO was following the same protocols.

Hello,

I do not post often, but felt the need to share my frustration with recommendations based on this study. I am post menopausal due to a hysterectomy when I was 39. I have been on tamoxifen for 4 years after local recurrence ( or new primary - dr. not sure because grade and er status different) 6.5 years after mastectomy for high grade dcis . I have been told for this entire time that I would not be put on AI because I am only weakly er+ (14%) and too young (47 now) and the risk would far outweigh the benefit for someone like me. Last November when I saw oncologist he did talk about remaining on tamoxifen for 10 years but again dismissed idea of AI, which I responded to by saying that was good because I had no intention of going on one because it appears I would have very little benefit and a whole lot of downside potential. Fast forward to annual checkup yesterday during which I saw new pa in practice and she said the plan is now to put me AI next year for 5 years. WTF?? All of a sudden the weighing of side effects to benefit no longer matters? From what I can tell, those in the study who gained the most were premenopausal women. There is really not much positive effect from those who are menopausal already and taking tamoxifen. My other gripe is how does it figure for someone who is so weakly positive. It has been explained to me that tamoxifen works no matter what % of positive but AI effectiveness is directly linked to that percentage. So basically, I would get very little benefit with the possibility of all side effects. When I asked pa about this she acknowledged it was true but went on with her spiel. I just wonder if individual stats even matter when a study like this comes around or do all docs just feel the need to get on band wagon so they won't be accused of under treating. Sorry for rant, but so frustrated.

Kadyann, I ditto, Ramols. I think some forget they are their for us and need to present all the options, benefits and cons. I fully understand they are the experts but please don't try to put me in a bucket without explaining why and the net effect on me! period! I had to tell this to my MO recently. Took her by surprise but she opened up after that.

Hi. I'm new to the forum. I was diagnosed with IDC stage 1, grade 1. I've had a double mastectomy and am now on Tamoxifen. My allred scores are 7 Estrogen, 6 Progesterone. I don't know my percentages. My Oncotype score was 16 or 17. My tumor was less .8 cm (tiny). My sentinel node was clear. My question is - Do I really need to take tamoxifen? It makes my ribs hurt and I'm very tired and depressed. Also, my upper back and neck are sore. I feel like I am cancer free, but the pain makes me nervous. What is the true (number) benefit of Tamoxifen with my stats. I know lots of people take it with no issue. I feel guilty if I don't. Anyone else go through this?

I'm feeling the same about Tamoxifen, started off great with no side effects but now my feet are killing me, I'm walking like a little old lady. I've thought briefly about stopping taking it but decided I couldn't live with myself if I had a recurrence and feel I have to do everything possible to avoid this. I failed taking Letrozole/femara because the side effects on that were even worse than tamoxifen

Cryan- I too have had some issues w/ Tamoxifen. There have been neck, headaches, and insomnia. I changed to the Teva generic brand a week and a half ago and no more symptoms. I am not sure if it was the change or if it is mind over matter.

123Justme-

Your link refers to POSTmenopausal women. The SOFT trial and other studies are PREmenopausal.

For premenopausal women, ovarian suppression and an AI were the most effective combination for preventing recurrence.

off to get oopherectomy no turning back now menapause here I come