tamoxifen...risky?????

Ok lets say that the CYP2D6 profile did not come out favorable(that is you will not benefit as much for tamox ) does this rule out the AI's or Femara as well, or are they a different ballpark ?

Aylin

The AI's are a different ballpark, and your CYP2D6 results wouldn't be relevant to them.  It is possible to get the test even if you're pre-menopausal if your dr orders it.  Many women are having oophs and going on AI's, but there are risks of early menopause, of course, and there's no research yet that shows the effectiveness of surgical menopause with an AI vs natural menopause.  

I'm thinking of having an ooph, but staying on Tamoxifen because it would probably lower my recurrence risk more than Tamoxifen alone.  I'm still trying to figure out exactly how much benefit it would give me vs. the drawbacks of early menopause.

Cynthia

Hi Kimberly,

We have talked before.  I hope you are doing OK.  Here's my thoughts on the subject.  I did have 7 weeks of rads, with the last week being "super charged" and I did have the ooph.  I declined tamox and I declined the chemo.  If I had this to do all over again, I would only do the lumpectomy and thats it.  Then I would jump off this train and get on with my life.  I'm not suggesting that's what you do, but you asked for thoughts and that is what I think.  I have been out of rads for 2 years now and I still have plenty of SE's and also SE's from the ooph.   I have had so much testing and scans that I am sick of it.  And as of a few months ago, I have pulled myself off of the medical train.  My oncs. office has called a few times to see if I am ready to set up an appointment, I told them no, I will call them.  And I keep getting letters from the hospital to come in and do my mammos.  But I am tossing them for now.  I am not saying what I'm doing is right, but all of this has burnt me out so much, I have just had it.  I think if I would have stopped at the lumpectomy I would be back to "normal" right now and not hurting every morning because of my bones being stripped away from the ooph and the pain in my ribs from the rads (or so they think).  And just flat out tired all the time.  Not to mention now having to use a KY or something like that every time my husband and I have sex.  I have never used anything like that in my life!  Now I feel like an old lady.  OK..I have ranted enough.  But I guess you can tell how I feel about this whole thing.  I hope you make a choice that you feel good about.  I do wish you the best of luck and let me know how you are doing OK?

Your sis,

g

My wife made a similar choice "Little G" , but only after a lot of research. She chose lifestyle change, and it has been excellent in results. She has avoided both chemo and rad, and changing her lifestyle (and mine) extensively. Vegan, specific supplements, food avoidance, etc.... You can find her write up here:

www.unwraptheribbon.com

Where she does a pretty good job of describing how she got to where she is at. I hope the best for all, regardless of your choices!

Erick Carpenter

(Proud husband of a breast cancer survivor)

Kimberly,

I declined to have axillary node dissection and chose to get rads ( they were indecisive about my case you can see the dilemma I had if you query on my 'trigeek axillary node dissection radiation' ) I am getting full blown rads starting this Thursday. I think that rads will be like pouring bleach on any possible 'mold' area, just an insurance to seal the deal.

I am in the process in deciding about tamoxifen and will have a heated discussion with my oncologist this Thursday.. sigh.. I asked for the Cyp2 test. I was told that it was not offered in Orlando, but I should be able to get it done somewhere for sure. 

And sorry but there is no absolute, hard evidence showing the result

of any treatment for the c crap..

Whatever decision you make it will be the right one for you, gather the facts get several opinions reach your decision then move on and never look back.

Aylin  

G

 I did have the SNB and they actually removed 6 nodes during my mastectomy. 1 had 2 mm involvement, the other had less than 2 mm.

After chemo My oncologist and one other major center surgeon pushed for me to get total axillary node dissection to further remove all level 1&2 nodes. But after talking to about 10+ doctors did not see any point in going in and removing more since my radiation oncologist convinced me that I would benefit  from  radiation to the whole axilla anyways.

The radiation of course could cause lymphedema I was told, not by killing the lymph nodes but forming scar tissue around them.  Taking curcumin hoping that that would help.

Will take a step at a time, now have to find out whether I should be taking tamox or not.. should I be getting ooph or not.

Sorry to hear that you are having such a hard time with your lymph situation. My surgeon said that I should swim, the water acts as a compression sleeve at the same time helping drain the yucky stuff out of your arm/torso. Rebounding also seems to have some fans to help lymph drainage.

Lifting light weights is also promoted.

Good luck.

Aylin