What happens if I stop taking Tamoxifen?

12 answers | Last updated: Oct 19, 2016
Godsgirl asked...

I was diagnosed and treated for breast cancer 2 1/2 yrs ago. had mastectomy, chemo and then rx for Tamoxifen...I also had reconstruction on my breast. My two questions are, what happens if I stop taking Tamoxifen, and my left breast hurts and is lower than the other even after plastic surgeon tried to lift it. I'm lost.. help me.

Expert Answers

Linda Ackerman, R.N. has clinical experience in oncology, women's health, and medical nursing. She has been practicing for more than 20 years and is a licensed registered nurse in both Florida and Wisconsin. In addition, she serves as a board member of Breast Cancer Recovery and the Wisconsin Cancer Council.

You have submitted two excellent questions.

A. What happens if I stop taking Tamoxifen?

If you were to stop the medication, per the studies, you have a greater risk of reoccurrence. I would encourage you to speak with your oncologist or seek a second opinion before changing any of your medications.

Tamoxifen is a well studied drug that interferes with the activity of estrogen. This medication is given to women who are hormone-receptor-positive. The benefits have been firmly established to help decrease the risk of your breast cancer returning.

B. My left breast hurts and is lower than the other even after plastic surgeon tried to lift it.

I believe you indicated in your question that your plastic surgery was also two and a half years ago. This is a long time for you to continue to experience pain. Unfortunately, some of the literature does indicate that women can have unexplained pain post reconstruction,

I would recommend the following options:

"¢ Speak to your plastic surgeon again, first specific to the pain, request a complete exam, including looking for fluid or scar tissue development.

"¢ In addition, ask for any additional advice about the difference you have noted in your left and right breast.

"¢ Seek an opinion of a physical therapist or an occupational therapist that has experience with women who have undergone mastectomies and reconstruction.

"¢ Think about seeking a second opinion specific to another plastic surgeon.

"¢ An excellent resource in seeking additional information is located at the American Cancer Society website


I hope this additional information will be helpful for you in talking with your physicians.

Community Answers

Sheeba answered...

im new to this wonderful site and hence id only post my question here.

my father has breast cancer.was diagnosed 6 mnths ago and he has been on tamoxifen.hes 80 yrs old and its stage 3.its in the lungs and mets also seen in liver and femur. i want to know what happens if tamoxifen is slow in treating his cancer.we have been advised palliative care.i know chemo worsens as it kills healthy cells lng with the tumor cells. im lost please advise!!!

A fellow caregiver answered...

Tamoxifen is used to prevent breast cancer recurrence. Once you have had a recurrence I'm not so sure of its effectiveness. Most patients I know of with mets are on different drugs than Tamoxifen. I'd ask a doctor.

Suzanna answered...

I would like to say that if this note would have a twin it would be my exact writing. 2 and one half years on Timoxifen and reconstruction plus scar tissue after a mastectomy and bone scan plus ct. scan excellent reports yet I have a left reconstructed breast that is not the same size due to scar tissue and fluid retention. My arm on the left side is not swollen but my shoulder hurts and there is a rolling over directed towards my arm pit of the silicone implant which by the way the implants have been used to reconstruct for many years again, Yet my left side that I had the cancer is just swollen on the top of the implant and makes the breast look lop sided with pain under my arm and I can feel every inch of the implants and they often hurt my whole chest whether I PICK UP HEAVY THINGS or sleep and do very little. Timoxifen has its side effects whether they admit it or not! I have gained 50 pounds and I have never had a swollen stomach and swollen feet and hands until I started on this Timoxifen and I hurt in my bones and noe for one year I have numb fingers on both hands. I had a lot of sential nodes removed plus auxillary removed with no cancer in them and that was done with the double mastectomy with no problems. I am now going back to my reconstruction plastic surgeon to see if I can get help with my large pancake looking breast that DON't giggle anymore like my own previous breast and are hard as silicone not breast tissue, I have been told by all friends and x husband who left me because of possible financial loss and cancer. He said causes medical financial problems so he left our marriage during my diagnosis of breast cancer. and went to live with another woman and 2 years later says he made a mistake but can't make it any different now! Seems that most men do not want to deal with cancer and the expenses even during a good marriage of 14 years. So I can say dating is a useless event after you tell that you have had a mastectomy and are taking all your estrogen and any natural harmones out of our system with Timoxifen. You have hot sweats and just go through giant physical changes and don't be shocked iif your cancer doctors say its ok and gives you an anti depressent for hot sweats. Which by the way are horrible to get off of so you get stuck on them when you are not even depressed. Just have a fat body from Timoxifen. I would love to get off of the Timoxifen and Pristique and get rid of this pain the implants cause because there is no feeling like the feeling of a sticker bush digging into your arm pit There is no promise the Timoxifen will keep the cancer away or that the implants will quit hurting. Anyone care to comment about this? It seems me and my twin in the other comment could use some help because this is not in our imagination. just a gig part of our life now!!!.

Peanut123 answered...

Book "After the Cure" covers people "living" after breast cancer.

Ripley! answered...

I feel your pain. I was diagnosed in 2007. Went through chemo, double mastectomy, radiation and reconstruction. Have been on Tamoxifin for four years and have gained weight. Wake up with a headache every morning, hot flashes, fatigue, tingling in finger and pain/cramping in my legs/feet and on my left breast. I decided on jan. 1, 2012 to stop taking the Tamoxifin and have an appointment to see my oncologist 4-26-2012 to tell her my decision. Almost all my symptons have gone and I have lost a few lbs. I still get the pain/cramping in my chest but almost free of everything else. I know it is a big step but it is my decision and I will live with it.

Mamahutch answered...

I find it highly irresponsible that an R.N. on this site would say that stopping Tamoxifen increases your recurrence risk. That blanket statement is false. Because we now have very individualized treatment with breast cancer, a lot of factors must be considered indetermining how effective a treatment may or may not be for an individual. Some women have larger tumors than others. Some women may or may not hve had lymph nodes involved. some women may ro may not have her2neu+ overexpression. Some women may have or not have had radiation and some women have had mastectomies removing all breast tissue whereby breast cancer would come back to. So to say Tamoxifen is a woman's only drug to keep her cancer from returning is just not true.Once the 5 year data was released by Genentec on Herceptin's effectiveness in women who were treated with it for adjuvant therapy a couple of years ago, NEWadjuvant online ( an online prognosticator) became available to oncologists to assess a woman's true risk after treatment. As it turns out, women who are her2+ do not gain as much benefit from Tamoxifen but that benefit vaires based on grade of tumor, size, age, surgery type, nodes, etc. In my case it only gave me a 1% benefit so I decided to stop it because the side effects did not warrant that 1% for me. I could not live 5 years with the terrible foot cramping that it caused. You risk is greatly decreased if you no longer have breast tissue, for instance. Blanket statements made by health professionals who do not know the scientific data which is most current have no place on a health forum such as this. Breast cancer research and development is changing annually and women must stay informed about their own personal diagnosis and outcomes as they too are changing all the time. Patients can also call Y-me which is a nationwide hotline to help educate and inform patients with breast cancer questions and those seeking treatment options information & emotional support.

Milou answered...

Ripley - How are you doing now?

I have all those symptoms people are describing - joint pain, +weight gain, strange mood swings, generally down, yeast infections, and zero sex drive, feel like I'm 81, not 41.

I decided on my 41st birthday that I would stop Tamoxifen until I next see my oncologist and he convinces me otherwise. I hope I start to feel like myself again. I can't live like this anymore - I don't know which end is up anymore.

Milou answered...

...and the chest & back pain! When it first started (it's random in occurance and length, and intensity) I convinced myself my cancer had spread and I was done. Tests showed nothing and I had no explanation.

Now I get it!! It's the tamoxifen.

I was starting to think I was having heart problems too.

Thank you for sharing everyone. A little support & understanding goes a long way in not feeling so isolated.

Maryjaynekelly answered...


I just called my Oncologist to talk about my anxiety and my chest and back pain too! It is in my left breast and behind on my back in my rib cage. I has created major anxiety for me and we decided for me to come off the Tamoxifen today and see what happens. I too keep thinking that my breastcancer spread to my lung and I was having heart problems. It is so good to hear that someone felt the same way - thank you!!!!!!! I hope you feel better :)

Mickey steward answered...

I was prescribe Tamoxifen as chemoprevention after surgery for lobular carcinoma in situ and atypical ductal hyperplasia. Went off ERT therapy of course. Mega hot flash city constantly. Very bothersome foot pain, incredible edema in my lower legs (like giant elephant legs) and mid-section; thinning hair; just aging rapidly altogether. Was advised to discontinue Tamoxifen by health care provider due t leg swelling. So without even the TX for some hormone protection, my hot flashes of course did not diminish. I was worried constantly about increased susceptibility to dementia, bone loss, hair loss, and even dry skin.

So, I put myself back on ERT using a bio-identical cream and am trying to lower my weight to be sub-average weight, which is supposed to have a anti-cancer benefit. I guess when I am diagnosed with BC I will have no one to blame but myself but every day was a misery and looking forward to worse. I think I would rather have BC than Alzheimers or other dementia. However, I never have been a good decision maker. And I am not making any recommendations. I did think it was worthwhile to post my experience. I am 63.

Pattikate answered...

At 43 I was diagnosed with breast cancer (DCIS), stage 0. It was an aggressive type. So, after having a lumpectomy I also opted for the full round of radiation. I then began taking Tamoxifen. Four years later, I was found to have DCIS in the other breast following a surgery to remove a "benign" papiloma. It was no doubt already present when my first cancer was found. I went ahead with the lumpectomy, but did not opt for radiation because the cancer was microscopic level, and it was not an aggressive form. Because I opted not to have radiation, my oncologist has kept me on Tamoxifen an additional 5 years. October 2014 I had a benign golf-ball size Polyp removed from my uterus. This may or may not have been a size effect of Tamoxifen, but my doctor felt I was ready to discontinue the medication at that point, which I have. Anyway, the entire almost 10 years that I was on Tamoxifen, I was not aware of any side effects. Now studies are showing that 10 years of Tamoxifen are more effective than 5 years. I feel it was a win situation for me, and I was fortunate to be someone who did not experience side effects.