Taking Tamoxifen long term, between 5-10 years after breast cancer.
Hi. I'm coming up on my 5th year anniversary of being cancer free and taking Tamoxifen. I had invasive ductal carcinoma. Lumpectomy followed by radiation. I had two lymph nodes with isolated tumor cells but tested negative for cancer. I've had zero side affects from taking the medication. I've found a few studies that show there is a long term benefit past the 10 year mark for staying on tamoxifen. I'm interested if people are staying on tamoxifen past the 5 year mark.
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I was on tamoxifen for 5 but then on anastrazole for 10 after that. I didn’t have any extreme side effects. Just a lot of hot flashes, and then I would get really stiff and sore if I didn’t get up and get moving.
Has your doctor talked to you about continuing endocrine therapy?
I have been on anastrozole for 3 years. I have pain in my neck and arms. Exercise does help . My oncologist recently told me that he thinks continuing the drug for another 5 years after I complete the first 5 years would be good. I wasn’t thrilled with the idea thinking I was the only one to be told this. Thank you for sharing , you have eased my mind.
A friend’s sister got very bad leg cramping after 5 years tamoxifen that she can’t even function daily life anymore. So everyone’s reaction is different. Wish you the best!
I want to be prepared to have that discussion at my next appointment in September. Thanks for sharing.
I had O stage Hr2 estrogen positive Hr2 progesterone negative, negative lymph nodes.
I am in my 5th year of tamoxifen and my doctor said based on results of blood work for odds CA returning gave me an additional 20%. So he recommended I stay on it for another 5 years.
At each appointment my oncologist keeps hinting that I should take anastrozole for more than 5 years. He said he will do testing for chance of recurrence at my 5 year mark. I find that I need to keep moving every day to keep the joint pain and stiffness manageable. I just keep repeating encouraging scripture verses in my head and telling myself that there is a light at the end of the tunnel.
I do get relief from the pain when I exercise. I will be getting mammogram and mri to screen for any recurrence of cancer. I guess I will see if anastrozole is really working. Until then I will think of you as I exercise and try to remember some spiritual sayings
I had to decrease from 20mg to 10mg Tamoxifen. I have triple positive DCIS with microinvasion. I had a mastectomy no lymph node involvement. But the side effect for me have been dizziness, anxiety, brain fog, and heavy menstrual flow. I took myself off completely for 3 weeks and felt normal. Oncologist says I need to get back to the 20mg. I feel like this is not quality of life. I am having a tough time being on this medicine. It seems like everyone here tolerated it well.
I have been on Tamoxifen for almost 10 years now. Never had any side effects. Guess I am one of the lucky ones. Everyone reacts differently but I would probably say if you can tolerate it, take it ! Also my bone scan says I have no osteoporosis and I will be 72 this year. It was my understanding that the Tamoxifen helps bone density.
I had some side effects the first week so I switched to taking it before bed and I'm all good now! Been on it since October. I sleep well knowing I have something in my body fighting the return of cancer.