Taking Tamoxifen long term, between 5-10 years after breast cancer.

Posted by veden66 @veden66, May 8, 2023

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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suedodier | @suedodier | Jan 27 3:45pm

In reply to @clo1977 "Hi, I didn’t tolerate Tamoxifen I started to get ovarian cysts on top of the fatigue..." + (show)

Thank you for responding. I hope you are feeling better on the 5 mg. 🙂

cfetoday | @cfetoday | Jan 28 8:43am

In reply to @suedodier "Hi, I am new to this page. I have been on 20 mg tamoxifen for 4..." + (show)

I had DCIS. I had to have 3 surgeries to get a clear margin. I also had radiation afterwards. I refused to take Tamoxifin or any of the other drugs. Too many debilitating side effects I've read about on this forum and from other people I've spoken with. My chances for recurrence of this cancer is very low. 3 percent. I just felt why would I want a terrible quality of life with a 3 percent risk. I do eat healthier. Broccoli and other cancer fighting foods. Everyone is different though. You have to do what is best for you. God bless

mariecarder | @mariecarder | Jan 28 9:43am

I have been on Tamoxifen for almost two years and also had thickening of the uterine lining. I had a hysterectomy. Unfortunately Tamoxifen only provides about a 50% protection from the cancer returning so it is a hard call if it is worth it if you have a lot of side effects. I don’t have many side effects that I am aware of. I had a stage 1 diagnosis with an oncotype score of 14.

bloncape | @bloncape | Jan 28 10:14am

In reply to @clo1977 "Hi, I didn’t tolerate Tamoxifen I started to get ovarian cysts on top of the fatigue..." + (show)

I have a friend, who was also on Tamoxifen for DCIS. Since she had many side effects from it, her oncologist continued to reduce her dose to 5mg. She also developed a thickening of her uterus. A biopsy indicated that it was negative for cancer. She then developed a cyst on her ovary which was thought to be benign. It was monitored by ultrasounds. She was told that most of these cysts go away on their own. The cyst continued to grow and began to cause pelvic pain. It is my understanding that biopsies are not done on ovarian cysts without being surgically removed. It seemed to take a while before the surgeon saw her reports. Once he did, he decided that her ovary should be removed ASAP. The ovarian cyst was tested during surgery and was found to be malignant with a rare form of cancer. She had a complete hysterectomy because of her cancerous ovary and the condition of her uterus.
I am not trying to frighten you. My goal is to encourage you to be vigilant and advocate for yourself. Getting a second opinion can be beneficial in helping to decide on a plan of action. Listen to your body. You know it best. No one is anxious to have unnecessary surgery. For months, my friend's doctors also felt that having a hysterectomy was too aggressive. She is recovering well from surgery and was told that her prognosis is good without taking any more Tamoxifen. BTW she is being treated at a renowned cancer center.
I wish you and everyone (including myself) who has breast cancer to be well and have a good quality of life.