To do or not to do...Tamoxifen

graceee32

Good morning - I am a new member to this family and website and looking for some sound advice.  I was diagnosed with breast cancer after having a breast reduction.  That surgery ultimately saved my life!  The surgeon clipped off 3 mm of an invasive tumor which I found out on 3/17/14.  The staged me at 1A, ER+, PR+, Her2 -.  However, the first oncologist said that my mammoprint (not sure what that is) came back high risk. 30% chance that it will come back.  If I take Tamoxifen for 10 years it will lower it about 15%.  I have smoked for over 20 years and have severe depression so I am not sure if all the risks are worth taking this?  I am 35 and very worried what this could do to me?  She wanted me to do chemo, ACT for six months to lower my chances another 5%.  Is it worth going thru the hell of chemo for only 5%?  Part of me wants to treat this holistically with exercise and diet.  I am a single mother of 2 and just moved back home to Fort Worth.  I still do not have a teaching contract and know that if I start chemo, I will probably not be hired?! There is a 70% chance that they got it all in the mastectomy.  I like to gamble, but not like this .  Appreciate any responses and sorry for rambling.

Sunshineinky

I was recently diagnosed as well.  My oncotype came back with a 8% chance but that was with the tamoxifen.  So far I've had minimal side effects.  My thoughts were I'd try it and if it didn't work I would do something else.  

Good luck to you in your decisions! My moms family is all from the Ft Worth/Belton area.  It's a great place!

Moderators

Hello graceee, and welcome to Breastcancer.org. As well as the support you've received from Sunshineinky. there are several active threads about tamoxifen and others' experiences with it here in the Hormonal Therapy forum. Take a look there to learn more, and also on the main Breastcancer.org site to research any new terms, tests and medicines you may encounter.

Best wishes, whatever you decide!

farmerlucy

Hi gracee32 - I, like you, found out about my cancer, after surgery but mine was 1.1cm. It is a real kick in the teeth. But at least they found it. (Part of me wished they didn't.) Perhaps you should get a second opinion (maybe Baylor?). Your age certainly comes into play. Also have they mentioned doing an oncotype test to back up the mammaprint test? I didn't want to take Tamoxifen either. In fact I didn't for a year. In the end it was important to me to do everything I could do to prevent recurrence. That is the best I can do. Now I can just sit back and live my life, and whatever happens happens. I'm glad you found us. Take care. 

Yself

In 2009, during my third year on tamoxifen, I was diagnosed with Age-related macular degeneration. I had cataract surgery on one eye during those years. Recently I was diagnosed with wet macular degeneration. Although the question, "Have you ever taken tamoxifen" was on the forms I filled out in the retinal specialist's office, I was told tamoxifen was NOT the cause of this. ? How do they know? While I was on Tamoxifen, I read only that it can cause changes in vision. Now it appears this can be serious. Age-related macular degeneration is not to be taken lightly. Eventually all central vision is lost, which I am losing now. I took Tamoxifen for five years minus 8 days when I discovered I had a blood clot. Had I known about this side effect, I might have shortened the number of years I took it. I am at high risk of having cancer again, so in spite of the aches and pains (I now use a cane and a rollator) to walk, I stayed on it. Not one of my doctors mentioned this side effect to me--that I could go partially blind. From what I am reading now, anyone on Tamoxifen should have a baseline eye exam within the first year of treatment including an examination of the macula and testing central and color vision... They should be followed every four to six months. Any sign of ocular conditions should prompt a discussion with the patient as well as the oncologist.  Was my oncologist ever advised about my "vision problems?" I certainly was not. I had no idea I was not seeing colors correctly until I mentioned the green walls in the doctors' office. My dau told me they were brown. Although I was telling my ophthalmologist my harp strings looked wavy, venetian blinds were making little "vs," it seemed no one was listening to me. It was only when a test in his office showed I had two cysts on the macula, were my symptoms taken seriously. I went next door to a retinal specialist who gave me a shot of Avastin in my eye. This will not restore the vision I have lost. It is supposed to keep it from getting worse.