Should I take tamoxifen?

jasmine2717

I was diagnosed with early stage breast cancer and I had a 4mm tumor removed with a lumpectomy 6 weeks ago. Also there was no cancer in the lymph nodes that were removed. The next stage is a visit with my oncologist to discuss taking tamoxifen, and then 3 weeks of radiation beginning sometime next month. After reading about the side effects of tamoxifen I'm not convinced that it is going to be beneficial to me. I wanted to ask if anyone else has made that decision. I feel very conflicted. thanks.

Phoebesnow

Choosing

i chose not to.  I based this on already feeling poorly...  its been a year and. 1/2 and no sign or reoccurrenc.  I had a double mastectomy with instant reconstructio .  I am very pleased with the outcome so far.  Good luck!  

 

I did did a lot or research before making the choice.  I wouldn’t start them until after radiation.

Elaine_wi

I chose not to take it

I could not tolerate Tamoxifin, my emotions were crazy on it. A short time later I became post-menapausal so I tried Anastrozole, another aromatase inhibitor. It was better but I still didn't like how I felt. I have a low risk of reoccurrence (Oncotype scaore of 6) so I chose to stop that also. My oncologist respected my decision and did not try to talk me out of it. It is now four years later and I am still cancer free.

I had several tumors in numerous areas (DCIS, IDC, and Lobular) so I had a double mastectomy and radiation on the left side because one lymph node was involved.

You could try taking it for a while and see how it goes. It's your decision and you can stop anytime. Take it a day at a time and nurture yourself, you deserve it!

Phoebesnow

Elaine_wi said:

I chose not to take it

I could not tolerate Tamoxifin, my emotions were crazy on it. A short time later I became post-menapausal so I tried Anastrozole, another aromatase inhibitor. It was better but I still didn't like how I felt. I have a low risk of reoccurrence (Oncotype scaore of 6) so I chose to stop that also. My oncologist respected my decision and did not try to talk me out of it. It is now four years later and I am still cancer free.

I had several tumors in numerous areas (DCIS, IDC, and Lobular) so I had a double mastectomy and radiation on the left side because one lymph node was involved.

You could try taking it for a while and see how it goes. It's your decision and you can stop anytime. Take it a day at a time and nurture yourself, you deserve it!

Elaine

Thank you for your reply.  Our diagnosis is almost the same except I had no lobular.  It’s really good to hear of your success!

Double Whammy

Give it a Try!

It has been 11 years for me now.  My hair did not return after chemo.  I started off with an Armotase inhibitor but switched to Tamoxifen after ariound 3 years to see if my hair would come back. I wanted to quit entirely.  My hair  didn't come back..  But I did not want to take either, but I did.   My oncologist felt it was important.   I started at the bottle of Arimidex for a month before I took it.  I figured I could always stop it if I had SEs.  My oncologist really felt that the AIs and/or Tamoxifen were important.  I took them both (at different times) and took only for 6 years because I still did not want to have to take either.  But I did not want cancer, either.  All is still well with me.  I wonder if I had not taken either oftern, but all I know is it has been 11 years!!!  You can always quit.  I did after 6 years because when it was prescibed, it was prescribed for 5 and then the 10 year recommendation.  I did not quit without the ok of my oncologist, tho~  I figured it was best to be safe than sorry. . . .and my oncotype score was 31 even tho I had early stage, no node involvement breast cancer.

 

Suzanne

 

Judemo

Hi Jasmine!  Sorry to hear

Hi Jasmine!  Sorry to hear about what your going through.  I too was just diagnosed with early stage IDC and DCIS and had a double mastectomy last week.  I was told I needed to take Tamoxifen.  After spending a few days researching it, I decided NOT to take it due to many personal reasons.  But, I do realize everyone is different and reacts differently to different medications.  Are there other options for you to consider?  Godd luck to you!!

anniemshe

Tamoxifen

I was told it was important to take tamoxifen so I did for 5 year - the recommended duration at that time. After stopping for 2 years my oncologist informed me new studies indicate better to take it for 10. This was in my 7th year after cancer. I was in good health n felt I didn't want the medication. Just 8 months short of my 10th cancer free - i was diagnosed with metastatic breas cancer to the bones. Now I'm on medication for life! Each person is different. 
Yes sometimes I wonder if it would have been better if I had just continued w the tamoxifen cause now the medication I take have even more side effects and is MANY times more expensive then before. 

Judemo

Anniemshe, I am so sorry to

Anniemshe, I am so sorry to hear about your metastatic breast cancer.  I can't imagine what that must have been like to get that news.  You just never know about the "what ifs" but you did what you felt was right and it probably was the right thing to do at that time.  Cancer is just tricky and very unpredictable.  Did you have any symptoms around the time you were DXd with MBC to the bones?  I'm sending you a big hug and wondering how your feeling.

lauriesandiego

I had two types of cancer in my right breast. Microinvasion of DCIS And PLCIS. I had a lumpectomy with clear margins and radiation; that's it. Nine years later, no return of the breast cancer. However, I was just diagnosed with Uterine Serous cancer and the first question several of my doctors asked was if I took Tamoxofin. Evidently, there is an increased relative risk of developing uterine cancer for women taking Tamoxofin.

thora

https://csn.cancer.org/discussion/323814/should-i-take-tamoxifen

I, too feel conflicted about ET. I just had a 7mm IDC removed via lumpectomy and 0 lymph nodes involved. But ER and PR positive and HER2 negative. Surgeon handing me off to oncologist. I did not do radiation, as my tumor was Stage 1, and Grade 1. Based on these characteristics, I read that my chance of recurrence is 10%. Taking ET would reduce it by 50% to 5%. Is it worth it the way the anti hormone pills wreck your body? I am pretty fit 66 y/o.

lauriesandiego

https://csn.cancer.org/discussion/323814/should-i-take-tamoxifen

https://csn.cancer.org/discussion/comment/1693365#Comment_1693365

I chose not to take it nine years ago. I had a DCIS and PLCIS, a lumpectomy and radiation. And despite much pressure, I researched and chose against. No breast cancer recurrence and no reason to even look back at the breast cancer. Unfortunately, I have a new Uterine cancer which is unrelated to the breast cancer. Every doctor asked if I had taken tamoxifen because this cancer is MORE common in those who took it.

thora

https://csn.cancer.org/discussion/comment/1693373#Comment_1693373

Thanks for your response, Laurie. I would likely be prescribed aromatase inhibitors since I am post menopause. But the SE are just as bad. Sorry to hear about the uterine cancer. Hope all goes well for you.

jasmine2717

Hello everyone. After posing my question on here back in August 2021 I never revisited this forum or another cancer forum I had been reading until just now. I don't know about you all but I found the cancer diagnosis was taking over every aspect of my life and I just needed to stop going down the rabbit hole of searches on medications, radiation, reoccurrence etc. I was making myself crazy with worry and anxiety!

I ended up having 16 radiation treatments and then after that it was time to make the decision on medication. While I've been very fortunate having a wonderful surgery and radiation team, I'm not that impressed with the oncologist (small town, no choice). I voiced my concerns and the meds and did more research and it was actually my radiologist who convinced me to give it a go. Since I'm post menopausal (64) I am able to take Arimidex. I wasn't sure this was going to be an option because of results of a bone density scan, but in the end it was prescribed. Like Double Whammy mentioned I stared at that bottle for a few weeks before I started taking it, but in the end I relented and began.

It's been over 3 months now and I have had few side effects, which if I'm honest makes me wonder if its working since so many people have talked about the terrible joint pain, hot flashes, etc. I feel extremely fortunate that the only major symptom I have is fatigue and the occasional joint pain. I hope this continues to be the case but time will tell.

Take care everyone and thank you for all your responses. Let's hope 2022 is better!

jasmine2717

https://csn.cancer.org/discussion/comment/1689241#Comment_1689241

I'm so sorry to hear about your diagnosis and I can't imagine what that must have been like after so many years of being cancer free. Sending you hugs and Im sorry to hear the new meds have even more side effects.