Start Tamoxifen-April/May 2011

Pinkheart,

Besides blood clots why is Tamoxifen hard on the heart?  I guess I haven't read that and my cardiologist never mentioned it.  Hmmmm.

No I don't take anything for my joint pain.  I rarely take pain relievers.  I don't like drugs.  I think it is important to know where my body hurts and for how long.  I've had a killer headache for about a week while on my period....hormonal headaches, oh I remember you well. 

It bothers me that there is enough estrogen in my system to not only kick start my periods, but give me headaches as well....

I'm seriously considering an ooph.  I don't want to produce estrogen.  It's never been good to me.

Wish, I think we all have diff SE from Tamox, some are the same...I can tell you that except for joint pain, all my Tamox SE seem to have resolved by 9 months on it.

What are your SE from Armidex?

MissZ...I think it is "normal" because it is what all  my docs said usually happens....that Tamox will stop your periods.

Thanks Pink!  I will check out the link later today...I'm off to workout and get final Christmas shopping done!  (late late late!)

Hey TinaJ!!  Remember me from the Rads thread?

Glad to hear you're doing well

I agree.  Think lots of Tamox symptoms are actually menopause, or in my case, lingering damage from chemo/herceptin.

My hot flashes have completely stopped for the most part and my period is back!  UGH!

Gonna talk to Ob next week about Hysterectomy.  If I get to choose, I want to stay on Tamoxifen and not go to an AI.  I've researched this pretty steadily and AIs are newer and don't have as much long term data as Tamoxifen.  I like data.

however, I've read (and confirmed by Onc) Tamox is bad for your bones once you are in menopause....really good BEFORE, but really NOT GOOD after, so I was surprised to read that you were staying on it since osteopenia is a prob in your family. Did your Onc give you any study or research to back that up? If so, I'd love to read it..if you wouldn't mind sharing

So, welcome to the thread!

T

Shore,

I was over 95% estrogen positive.  With a hysterectomy, that would get rid of estrogen produced by the ovaries and uterus.  But estrogen is also manufactured (in small amounts) by the liver, breasts and adrenal glands.  

This means even with a hysterectomy the left over estrogen must be blocked from any potential cancer cells.

Right now, for women in menopause (natural, surgical, or chemical), most Oncs use an AI (Aromatase Inhibitor) to block that estrogen instead of Tamoxifen.

I would like to stay on Tamoxifen to deal with left over estrogen rather than go to an AI.  Tamoxifen has more long term studies, more data about efficacy over time.  AI's don't.  And more, I've read conflicting studies about them being "as effective" "more effective" and "less effective" than Tamoxifen.

I don't even know if my Onc would agree.  He typically puts women on AIs after menopause.  Though he admits he prefers Tamox for the same reasons (lots of data).

Does that make sense?

Pej, I am 43 ... 41 at diagnosis, but my cycles didn't start until my early 20's....and the women in my family usually don't stop having periods until 60!  So if I followed them, I'm looking at cutting it 15 years short.

I'm not sure what SE you fear from an Ooph that are life threatening....but I have women in my family with radical hysterectomies from their early 20's, now in their 70's that have strong bones, run, workout, etc and never took HRT.

I encourage you both to go to the site listed below and look at the survival rates of premeno women who have an ooph and tamox, vs just tamox....the graphs on page 3 are easy to read and eye opening.

http://jco.ascopubs.org/content/26/2/253.full.pdf

Now here is my thinking on MY decision for the whole ooph (I'm asking for a hysterectomy):

Why I should do it:

1.  My periods are back....Docs say 1/3 of women get them back on Tamox....that's fine I guess, except there is no test to determine if I am Tamoxifen resistant...so I don't know if it's working.  What I DO know is my estrogen is pumping again.  That is a fact.

2.  I've read a lot about Tamox and there is no way to "guarantee" my cancer cells will munch on it BEFORE my natural estrogen can get to them.  And since I'm having periods again, I know it is now a competition between the two.  That's a big risk imo.  It only takes a single cancer cell able to grow on it ....

3.  My estrogen has always been off the charts which makes me store more body fat, PMS issues, and a host of other problems (including BC!).  They're all back, in spades.  And I'm bleeding FOREVER.

4.  Studies show premeno women survive longer and have better recurrence rates with an ooph than those who don't.  This says to me that the majority of the "1/3 of women who get their periods back on Tamoxifen" are almost entirely from the premeno group.

That may seem obvious but I point it out because an ooph improves survival in premeno women.

Meaning women who still are producing estrogen.  I believe an ooph increases survival like the studies show because natural estrogen is removed from the equation.  So, premeno women who keep their ovaries and produce estrogen don't survive as long as premeno women who have them out.  That's what the studies show, and I believe it.

Why I should keep them:

1.  Sex drive, creativity, emotion, bones, metabolism.

All of which mean nothing if I am dead.  And all of which I know from the last year I can live with...

This is a personal decision for every woman.  This is my thinking process so far, and I'm sure I'll be collecting more info as I go along. 

In a nutshell it boils down to this.  I had a MX, took chemo, radiation, and eat Tamoxifen all to increase the % of survival....how can I then NOT take an ooph as well when it is proven to also increase my survival by a fairly significant amount?

The answer:  I can't. 

Thanks LouLou!

Ok an update....

Met with OB Onc today.  Laid out my concerns about the bleeding.  Also my concern that since my periods are back my estrogen is fighting Tamoxifen for left over cancer cells...and since there is no way to test Tamoxifen's efficacy (is it winning?) I thought an Ooph/hysterectomy is necessary.

Since I am bleeding AGAIN, I didn't think she'd do an exam.

Au contraire mon frere ... she not only gave me an exam, she dilated my cervix (which took about 20 minutes because it didn't want to cooperate...which I don't understand since I pass clots as big as....ok, gross but wt?)..and then biopsied my uterus.  She "hopes" she was able to get enough tissue (can't have surgery until we know if there is cancer) so we don't have to do it again.  It was hard because the tube they use to scrap the inside of the uterus kept filling with blood.

Can I just say...besides being incredibly bloody, messy, and gross...it freaking HURT!!  Holy cow!  Maybe if it was a simple in and out...no big deal...but she was in and out THREE TIMES, and kept cranking that speculum....I'm still sore!  Then at the end said she hoped it was enough tissue because my uterus was full of blood.

So now I have to wait until next week to find out if we get to do it all over again.

However, she agreed with me about the risk of starting my period again....she even talked about studies I've already read about how women who are premeno and have an ooph have better outcomes than women who don't. 

I was so relieved it wasn't a fight.  Sometimes it feels like I fight for what other women get as standard care...when she said, "You def. are a candidate for an ooph/hysterectomy."  I almost fell off my chair....hahaha.

The only potential problem is my heart.  They have to have a meeting and discuss it...but if I don't need another biopsy, and if the heart thing can be monitored during surgery, I have a penciled in date of Feb 10th for a lyproscopic Ooph/hysterectomy (but not with the robot). 

I have a bicornate uterus and had 2 c-setions...they were going to do it all vaginally but decided against it since they anticipate significant scar tissue from the c-sections.

So if all goes as planned, come the second week in Feb all my girly bits will be gone.

No exercise for 6 weeks!!  I asked her to have a nutritionist come see me in the hospital so we can discuss daily caloric intake with no exercise...I know I'll need more calories to mend, but HOW MANY?? 

Also, some of the worst things in my life happened in Feb.  In fact, the SECOND WEEK in Feb all my life...and worse ...events with the even numbered years....so, I'm a little leary that this "routine" procedure could become something final and horrible.

Oh well...I'll keep ya posted!