Ending Tamoxifen after 5 years!

Posted by sparklegram @sparklegram, Jan 29, 2023

Joyfully, today is my last day on AI's after 5 years. Has anyone had negative reactions after stopping Tamoxifen?

Interested in more discussions like this? Go to the Breast Cancer Support Group.

I just want to pop in here and say that many of us do not have horrible side effects from aromatase inhibitors.

As for natural aromatase inhibitors, if they are effective, I assume they would have the same side effects, since estrogen deprivation is the cause of any side effects.

I also had osteoporosis. I am 8 years out from diagnosis and credit letrozole for making it this far. If I have a recurrence, I will figure that the meds at least delayed it. Risk goes up each year for hormonal cancers. It's just an unfortunate fact.

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I was on arimidex, then Tamoxifen for 10 years after surgery, chemo and radiation with very few side effects. Six months after stopping Tamoxifen I had a sore hip which turned out to be metastases from my original cancer. I also have tumors in my liver. I believe my recurrence would have happened sooner without the tamoxifen.

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@auntieoakley

Dairy is a big one, they feed antibiotics and hormones to the cows. There has been a trend in recent years to provide hormone and antibiotic free dairy.
If you look online you can find out about your brand. I eat fage brand and I also know stoneyfield brand is non hormone and non antibiotic.
This practice is still very common in all types of commercial animal barns, chickens, pigs, cows etc., but there is headway into understanding how bad this is for humans.
Phytoestrogens in some plant based foods like soy are still being researched. I think the jury is still out in my mind. I say this because one study will say yep it’s bad for breast cancer patients, the next study will say it is not. I find most of these studies are funded or ran by someone having an interest in the outcome. I do take in a little soy but I don’t drink soy milk or eat tofu or eat a lot of processed foods.
After I have rambled on 😂 now I should ask, what brand of Greek yogurt you love?

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Yes, I have been interested in this because I am a milk addict and have always been. However, when I was diagnosed I went organic for everything (including milk). Drinking this amount of milk has served me well: Vit. D, Calcium -- neither of these dipped during treatment or after. I have good bone strength. I am just always sure that the brands I am using have no added hormones or antibiotics. We (in this country) also have to watch where our soy comes from.

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@jbp

I was on arimidex, then Tamoxifen for 10 years after surgery, chemo and radiation with very few side effects. Six months after stopping Tamoxifen I had a sore hip which turned out to be metastases from my original cancer. I also have tumors in my liver. I believe my recurrence would have happened sooner without the tamoxifen.

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@jbp I have had a sore hip for three months. I got an x-ray that showed "mild degenerative changes" which do not explain the pain, and the pain is not in a joint. I mainly suffer pain lying down on that side and it wakes me up.

I have done PT for two months with no effect whatsoever. Not exercises, mainly massage and heat.

How did your mets to hip get diagnosed? My cancer doctor just keeps referring me to PCP.

I am seeing my orthopedist and wonder what kind of imagine to request. And whether I need contrast or not (kidneys not great).

So sorry you are dealing with this.

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@laf70

Hi.. did you just have a lumpectomy or mastectomy.
I will be getting my biopsy report by Wednesday. I am 72 and I don't want to spend the rest of my life miserable.
My inclination is to have a double mastectomy.
I am just devastated by this. I feel fine and have no family history of breast cancer.
Thanks for listening...

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Keep an open mind to the treatment options available to you. I found that for me my best weapon I had against cancer was to trust my doctor’s advice and listening to their expertise. If a treatment plan wasn’t comfortable for me, my doctor truly listened and changed to another plan. We no longer have a ‘one treatment plan only’ for breast cancer offered to us. There are options available. It won’t cause any harm to having an open mind and listening. At 72 you likely have a good many years still available to enjoy loved ones. Much love to you! And Good Luck!

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@lisman1408

Keep an open mind to the treatment options available to you. I found that for me my best weapon I had against cancer was to trust my doctor’s advice and listening to their expertise. If a treatment plan wasn’t comfortable for me, my doctor truly listened and changed to another plan. We no longer have a ‘one treatment plan only’ for breast cancer offered to us. There are options available. It won’t cause any harm to having an open mind and listening. At 72 you likely have a good many years still available to enjoy loved ones. Much love to you! And Good Luck!

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Thank you. My appt with the surgeon is tomorrow morning.
This totally uncharted territory..I am so nervous...

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@laf70

Thank you. My appt with the surgeon is tomorrow morning.
This totally uncharted territory..I am so nervous...

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Dear @lisman1408, thinking of you and wishing you a n easy and gentle path to recovery.

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@jbp

I was on arimidex, then Tamoxifen for 10 years after surgery, chemo and radiation with very few side effects. Six months after stopping Tamoxifen I had a sore hip which turned out to be metastases from my original cancer. I also have tumors in my liver. I believe my recurrence would have happened sooner without the tamoxifen.

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How are you feeling?

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@laf70

Thank you. My appt with the surgeon is tomorrow morning.
This totally uncharted territory..I am so nervous...

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@laf70, how did the appointment with the surgeon go? How are you doing?

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@resort

I just had surgery and will start treatment soon. I’m also thinking the same thing - not to take hormonal medicine which only delays the recurrence not to kill the cancer cells. I’m already osteoporosis. Really worried about the side effects.

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I had a lumpectomy 6 months ago then one week only of radiation (new protocol, 3000 Gy in 5 sessions). I am on 20 mg of tamoxifen, not AI, because I have osteoporosis. My hips are at -2.9 already. Tamoxifen is supposed to have an overall preserving effect on bone (may be small loss at first, but stabilizes after that). At my upcoming appointment I am going to ask about the possibility of dropping down to 10 mg or 5 mg of tamoxifen. Latest research is showing it has good results with the lower dose. My side effects so far are: warm flashes first 2 weeks only, brittle finger, toenails and hair (maybe stress related, though). My memory has gotten worse. Questionable eye issue, increase in clear floater or cataract in one eye, am seeing ophthalmologist this week. I’m 68, had ER and PgR positive DCIS, no nodes, HER2 unknown.

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