Coming off the meds early

Hi Milinda and welcome to the site no one wants to qualify for.

I came off tamox after 2 years and Aromasin the following 6 mos.  I was 59 at dx, so we are pretty different.  I chose mast.. over chemo and rads. 

My onc is  a very forward thinking one and participates in international studies and such.  We agree that most bc recurrances were found in the first 2 years or so after diagnosis.  I was having such side effects that my quality of life was affected and we agreed I could stop it.

You have done most all I would have suggested and have a powerful argument to take a med. holiday.  I say best two out of three: get that third opinon to help you decide.

I don't see where you live, but consider an out of town consult.  Standards of medical care are known to different areas or cities, so to provide a completely different approach could be helpful.  Maybe a breast or university center would be good and oncs not stuck in the rut of doing what they always do--no dis to your onc, but habits are hard to break and some oncs read more and attend more meetings with newer info.

Good luck and I hope you safely get your holiday and are successful in getting preggers!

I would like to add that the choice is yours alone.  My family completely understood why I was choosing to discontinue the meds, even if I could have maybe extended my life---and we're very close, my kids and I.

I guess the disappointing your family comment caught my eye and wanted to reinforce that this time: it really is all about YOU.  Your decision,  and your life.

It's the case of not looking back and questioning yourself that you have to have a handle on, IMO>

I am also considering coming off Tamoxifen. I am on a holiday with consent of my oncologist for two weeks, but I'd like to come off completely. I've been on Tamoxifen for four years and now have every side effect listed. My bones hurt. My joints hurt. My hands hurt 24/7. I'm afraid of losing the use of my hands. I'm fatigued, short of breath. You name it, I have it. I had the nuclear stress test on my heart and recently one on my bones. They turned out OK, thankfully. I am afraid my oncologist will not continue to see me if I insist, though. If my cancer returns, I'd hate to have him refuse to treat me. I was on Aromasin for a few months and switched to Tamoxifen because of pain.:((

Beautifully said, Anne,

Milinda-

I read this post a couple weeks ago and have thought of it often and so I came back to respond.  I just came off of Tamoxifen in May in order to prepare to get pregnant.  I was diagnosed in June of 2008 after I had my first baby.  I had a very hard time with Tamoxifen the first time around and had to take a break before going back on it so I was not on it the whole two years and still plan to go back on it to finish the five years.

My doctors were supportive from the beginning when I told them we still hoped to have another child.  Two years were what I was told from the start.  I have also had MANY in my life who have felt it necessary to express to me that they think I am being foolish.  I should be happy to have my one (amazing) child and not put myself at risk by having another.  I have tried to believe with my mind and my heart that I do not need another child.  I have imagined it and tried to live it.  The fact is that nothing in my life has ever brought me as much joy as raising my son side by side each day with my husband.  No matter how hard I try, I keep returning to the same thought that I really want to have a second child.  

I finally made peace with the decision to have another child if God and my 40 year old body will allow it to happen.  First of all, as my oncologist reminds me every time it comes up, babies do not cause cancer.  I finally had the realization, if it is coming back, it will be coming back with or without this baby.  If I sacrifice this dream because I am afraid and then f***ing cancer comes back, I will be a bitter woman.  Not having a baby does not mean I am not going to go through breast cancer again.

What it will do is make the cancer that might already be in me grow faster and yes that does scare me.

I spent the radiation portion of my treatment sitting across the waiting room from a woman who battled her second round of cancer after having her second child.  I think about this all the time as well and that scares me too.  She is doing great now by the way. 

I don't know you and of course you need to make the decision that is right for you.  I just know that so many told me not to do it and it made me so sad.  I thought it might make you feel better to hear from one who is doing it.  I might be here one more week or one more year or maybe even 50 years.  The gift breast cancer gave me is that I am going to really live my life, soak every precious moment that I can and not let cancer make me live in fear.