Anyone regret not taking the AE's ?

I'm one of those 90% girls too but it's important to me to stay out of that 10% slot.  I've already had one pretty significant mets scare (in my eye!  Benign, thank God) which really pulls you up short and forces you to think about the possibility of mets too.

QOL is important but survival is more important.  I started out on Arimidex and was switched to Femara after I developed severe joint pain and things are much better----really have no SEs from it.  My point would be that if one affects you negatively there are always others to try. 

Janis has her twins---I have my beautiful little grandbabies---want to be around to spoil them rotten as long as humanly possible.  I'm 2.5 years out----the journey does get better and more tolerable.

Jeannie 

Hi Lionessdoe,

In answer to your question, I did not take AI or tamox. I was diagnosed in April 07 had lumpectomy and 21 rad tx 4 boost. My bc was stage 1, grade 1 tubular ductal, ER+, no lymps and clean margins.

My onc told me that my reoccurace would be 1% per year w/o meds. She told me tamox was not good for me because of the side effects and that I should wait until menopause to take AI which are  better according to her. Well, the side effects of these meds scare me and my QOL is more important for me.

I have been exercising very day since I was diagnosed, changed my eating habits and cut out red meats, dairy and all soy products. I take vitamins daily and I have never felt better. I have lost wt and totally toned up my body with exercising and I have minimal hot flashes now. Excising has decreased my estrogen level and body fat. This is my choice to do this.

I feel that I made the right choice for me.. and for now I will take one day at a time and enjoy my life to the fullest.

Good luck on your decision. Let me know how you are doing.

Take care,

Blackjack

When I had my very first mammogram at age 39 (to establish a baseline) I was diagnosed with DCIS.  For treatment, I had lumpectomy and mammosite radiation and started on Tamox.  After 3 - 4 months of tamox, I decided to stop taking it due to unbearable SE's.  The odds of recurrence seemed so low to me, that it wasn't even a difficult decision to make!

Then I had my first 6-month follow up mammogram, and they found a new tumor in a different part of the same breast.  I'll never forget the radiation oncologist saying that I fell into the "unlucky 3%" to have a new occurrence so soon.

After that, I was no longer comfortable with percentages.  After all, I had a 97% chance, according to the stats, of NOT having a new occurence.

The second tumor was invasive so I had to do chemo and external rads.  Since I knew tamoxifen did not agree with me, I decided to have a hysterectomy so I could try an AI.  I have been taking Arimidex for 2.5 years now with few SE's.  Yes, I feel "old" because of some joint pain, but it's tolerable.  Much more tolerable for me than Tamox was.

I don't have children, but I do love my life and want to be here as long as possible.   Like Janis said, there are no do-overs when it comes to fighting this disease.

I was diagnosed in March, 2007 with IDC,  that put me in the 16% stat about women being dx. Having a masectomy combined with chemo gave me a 60% survival rate. I had radiation and started with Arimidex after my last chemo in July, which gave me an 80% survival without reoccurance over a 20 year period. While that may look like pretty good odds, I still worry that I will again fall into that smaller percentage someday. remember in order to have QOL you need to be L. I've only been reading and posting on this forum for a short time, but in that shosrt time I have read success stories, but I've also read some postings that have broken my heart.

You are entitled to decide what you feel is right for you, but make sure you've done you homework and are completely comfortable with your decisions. Good luck and keep posting. 

I was dx with stage II IDC in 1998, no nodes positive, did 4 A/C, 4 Taxotere and 6 weeks of rads.  I had a low rate of recurrance.  Here I am in 2008 and have mets to the bone.  I will now deal with this disease until my death be it from cancer or some other cause.  I always said I would never do chemo again but now that my cancer is back I have reconsidered that.  I am only 45, my youngest is 13 and my husband passed away so I plan on being around a long time for my kids.

I was not able to take tamoxifen and AI were not available in 1998 so I really didn't have any options.  I wish I had some options because now I am limited.

I've been on Arimidex since December '06....in fact, I wanted to be on this drug so badly I had my ovaries removed so I could take it.  So far no major side effects, except it is difficult to lose weight.  I had a bone scan on Tuesday and my bones are good.  I'm hoping if there's no bone damage, they'll let me stay on it longer than 5 years.

Good luck to you!  

So far I have had no luck with the AI's. Horrible side effects from hyper-hyperactive to so much back pain I could not sleep at night. 

Next up is a tamoxifen metabolizing test and genetic testing for the BC gene.  Hopefully I will not have the gene and will try Tamox if I can metabolize it. 

I led a very healthy lifestyle before DX.  Not overweight.  Serious runner.  Ate a lot of organics as well as no red meat.  Took lots of vitamins, etc. 

I pumped it up a little to more organics, no tap water and more supplements, but not sure what else I can do on that front. 

If I have horrible SE's from tamox, I will probably discontinue. I am 56 and QOL is pretty important to me.  My rate of return without hormone pills is 13%.

I just want to gently disagree with Catherine's post about cornea/retina issues and tamoxifen. I had a detached retina when i was 29. Of course I had a long talk with my eye doc before going on tamox and she said it has absolutely no effect on getting another detached retina. There is a rare side effect of retina deposits, but that is so rare she's never actually seen it in her practice and it doesn't lead to detachment in any event. I've been on tamoxifen for close to 3 years and my retina is fine.



Tamoxifen has been linked in rare circumstances to cataracts. I had a cataract before bc treatment and it hasn't gotten much worse since I've been on tamoxifen. My feeling is that cataracts are so easily treated, and advanced bc not so much, that it seems well worth the risk.