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  • GirlFriday
    GirlFriday Member Posts: 461
    edited January 2012

    Wow TonLee, your periods sound just like mine.  I'm scheduling an endometrial biopsy right after my next period...

    A page or two back I had something rambling about risks for ooph...I think I meant that there is a higher chance of issues with your heart if you have an ooph under 40...Of course now I can't find the article...but there is something out there!

    I hope you feel better soon...that was a horrendous procedure!

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  • TonLee
    TonLee Member Posts: 2,626
    edited January 2012

    GF,

    Ok, I do remember reading estrogen protects the heart....and when you hit menopause you lose that protection...

    The Ob said she wouldn't call what I'm having a "period" necessarily...she calls it "break through bleeding"...and break through bleeding is a sign the uterus lining is getting thick and that's not good.

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  • TonLee
    TonLee Member Posts: 2,626
    edited January 2012
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  • PinkHeart
    PinkHeart Member Posts: 1,193
    edited January 2012

    TonLee!

    Good wishes for a positive outcome from your girly surgery!  As a heart patient myself, I'm glad to hear that your docs are taking great care with your heart.

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  • TonLee
    TonLee Member Posts: 2,626
    edited January 2012

    Thanks Pink!

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  • Omaz
    Omaz Member Posts: 5,497
    edited January 2012

    TonLee - I am glad you didn't have to fight for the surgery! What a relief!

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  • TonLee
    TonLee Member Posts: 2,626
    edited January 2012

    Thanks Omaz....it is weird to actually NOT have to do that...lol.

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  • GirlFriday
    GirlFriday Member Posts: 461
    edited January 2012

    I scheduled my endometrial biopsy!  Jan 31!  I feel good about doing, but anxious too!

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  • TonLee
    TonLee Member Posts: 2,626
    edited January 2012

    Yeah GF!

    Let us know how it goes....I'm curious!

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  • TonLee
    TonLee Member Posts: 2,626
    edited January 2012

    I'm scheduled for an Ooph on Feb 10th.  Onc said he will leave me on Tamox for two months, and then switch me to an AI with calcium and D3 prescription grade.  Right now my bones are normal, so it is a precautionary measure.

    So by summer I should be off Tamox.

    I'm not very excited to be honest.  Better the devil you know....

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  • Omaz
    Omaz Member Posts: 5,497
    edited January 2012
    TonLee - Any surgery is nerve wracking and it's a tough decision.  I understand the 'better the devil' thing.  Most likely I'll be joining you with the switch to AI this spring.  I am a little older and my period has not come back.  My onc PA said that there is a 20% advantage for the AI over tam.  So the ooph will allow you to move to the AI and that's good I think and no more periods. 
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  • TonLee
    TonLee Member Posts: 2,626
    edited January 2012

    Omaz,

    Good point!  My Onc said there was only a 3% advantage over Tamox though....but either way I don't care...

    When we switch we can compare SEs!

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  • Omaz
    Omaz Member Posts: 5,497
    edited January 2012
    TonLee - He could be siting the absolute risk vs mine the relative risk that would make sense.  I think that would be about right - Hey, 3% is good !
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  • Omaz
    Omaz Member Posts: 5,497
    edited January 2012
    TonLee - I was trying to figure it out - if we have a 20% risk of recurrence and tam reduces it by 50% that leaves a 10% risk of recurrence.  If we have a 20% risk and AI reduces it by 70% that leaves a 6% risk of recurrence for a difference in risk of recurrence between the two treatments of 4%.  So that 4% would be the advantage of the AI over the tam.
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  • Omaz
    Omaz Member Posts: 5,497
    edited January 2012

    TonLee - Here is a link about it - I think the 3% is absolute risk.  I remember when I was first diagnosed it was such a challenge to understand the relative vs. the absolute risk.

    In a meta-analysis across agents, five years on an aromatase inhibitor reduced recurrence an absolute 2.9% with a nonsignificant 1.1% absolute reduction in breast cancer mortality compared with tamoxifen, James Ingle, M.D., of the Mayo Clinic in Rochester, Minn., and colleagues reported at the San Antonio Breast Cancer Symposium.

    Women who switched to an aromatase inhibitor after two or three years of tamoxifen had a 29% proportional reduction in recurrence and a significant 0.7% absolute reduction in breast cancer mortality three years later compared with women who stayed on tamoxifen.

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  • TonLee
    TonLee Member Posts: 2,626
    edited January 2012

    Thanks Omaz.

    I'm getting to the point now that once my ovaries are out, that's about all I can do for the ER/PR aspect of my cancer.  Well, that and taking an AI.  If it comes back and is ER+ then it is just meant to be.

    I wonder though about the PR....they NEVER MENTION the PR and I was over 95% + PR.  I know it is made in the ovaries, but no one has ever talked to me about what effect it has on BC.  And how not treating it affects things...so with my ovaries out, no major PR either.

    I'm ready for this part of the journey to be over.  Back to life please :)

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  • Omaz
    Omaz Member Posts: 5,497
    edited January 2012

    I know, they never say anything about the PR!

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  • PinkHeart
    PinkHeart Member Posts: 1,193
    edited January 2012

    Ditto to the lack of discussion about PR ...

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  • TonLee
    TonLee Member Posts: 2,626
    edited January 2012

    Think I'll bring up the PR aspect at my next appt with the Onc when he switches me to an AI....if I can remember!

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  • GirlFriday
    GirlFriday Member Posts: 461
    edited January 2012

    So I went in for my endo biop today, and they decided not to do it.  The reasoning is complex, but basically, my uterus is very enlarged, and I've been referred to a specialist gyn rather than the NP I was seeing.  I guess that one inch fibroid I have has grown significantly, so now I'm waiting for the US appointment.  So many of you seem so bold with your option to have surgery.  I'm chicken shit.  I don't want anything cut out that doesn't absolutely have to be.  I keep thinking maybe it will al just go away and fade, but it's not. It's just getting worse...and now I'm gun/scapel shy.  I seriously want to just run away.   

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  • TonLee
    TonLee Member Posts: 2,626
    edited January 2012

    GF,

    My uterus is acting up too.  But I am blaming it on Tamoxifen since I didn't have any issues during chemo when it was eating my estrogen.

    Tamoxifen is a weak estrogen and makes the uterus misbehave in some women.

    This is why I've decided to get an Ooph instead of a hysterectomy.  I'm assuming/hoping that once I am off Tamoxifen, ovaries are out, and on an AI, the uterus won't be an issue anymore. 

    There are tons of potential SEs with a full hysterectomy.  In my ignorance (before research) I was rather blasé' about "take it all!" 

    Now, uh, not so much.  Now I know for instance that the uterus is essential in keeping other internal organs in place.  The ligaments and surrounding support structure for the uterus also supports other organs against gravity.

    Once it is taken out, everything shifts down.  Minor problems such as inability to completely vacate the bowel all the way to more serious ones like bladder and bowl prolapse into the vagina, or just falling lower and having function affected.

    It's NOT a decision to make lightly.  It makes me ANGRY no one was going to tell me any of this...I had to find it on my own.  Not a peep from the medical staff.

    I've read long term studies of hysterectomies 10-, 20, 30 years out...and they aren't pretty...as much as 75% of women have complications long term (besides heart/bone issues which seem to be fairly well publicized.)

    Have you considered asking for an Ooph so you can get off Tamoxifen? 

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  • GirlFriday
    GirlFriday Member Posts: 461
    edited February 2012

    I haven't considered the Ooph.  I have an appointment with another doc March 6. 

    I'm so glad you posted about the long term issues of hysterectomy.  I worked with a woman when I was in my mid twenties who was dealing with a prolapsed vagina.  She was in constant pain.  I've mentioned this to several med professionals, and they all seem to say things like that's rare.  And it makes me want to scream. I have at least 30 years left to live (hopefully that's just an underestimate) and I'm going to cut vital parts out of my body?  How do they know what's rare and what's not?  I'm tired of the line"well medicine has progressed so far" blanket explanation for every concern/fear I express.  I'm considering going off Tam all together, whether I get an ooph or not.  If you look at my stats, I'm at low risk for recurrence, and sometimes I wonder if I'm not being overly cautious.  But then again, my type of cancer is usually dx'd in women over 60 and I'm 38...so how do they know if the cancer comes back especially if you're in your 70+ age group.  I'm feeling exhausted from the whole thing.  I've done my due diligence, and yet I still feel like I can't make any good informed decisions because it's such a crap shoot. 

    I've had a small fibroid for the last 5 years (15mm or something super small like that)...and now it's big enough that when my uterus is palpated the NP gets big eyes and says, "well that's large"...She told me that the blood loss I'm suffering during my period would be a level where she would encourage me to go to the ER and is concerned that I will end up anemic.  And my 4 motrin every 2-3 hours is eventually going to be very bad for my kidneys.  So I obviously have to something.  I know I'm not working out like I should be..I used to train for Tri Sprints, and now I'm doing nothing. I feel constantly rushed and like there's no time for anything.  I've gained about 10 lbs, thank you Tamoxifen...I'm constantly exhausted because I wake up 5+ times a night to go pee, which may well be related to my enlarged uterus, not just the Tamoxifen.  I know that exercise could help with my SE's, but I just haven't motivated enough to help myself.  There I said it! That's the bottom line...I feel like I have to do everything myself, because the docs don't really admit to the whole truth due to malpractice issues, and although we've come so "far"  we're still just shooting in the dark at a moving target.  My last and final gripe is that I can't even medicate with a martini...alcohol gives me hot flashes!  Roar!

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  • TonLee
    TonLee Member Posts: 2,626
    edited February 2012

    GF,

    I know it is so frustrating!

    My OB said that once we get rid of the ovaries and menstruation stops, all fibroid problems dissolve.    That the uterus is "orphaned" and that's that.  No more bleeding.

    I asked her why some Docs recommend a hysterectomy for fibroids...and she said she didn't know other than some women demand it (like I did at first in ignorance).  The research shows an Ooph and switching to an AI eliminates Tamoxifen exacerbated issues with the uterus.  She said the uterus shrinks down to smaller than a walnut.

    Some women ask for a DNC during their Ooph to just get rid of the lining all at once (because it doesn't build back up without estrogen and Tamox)... I don't want that.  So she said whatever lining is there, once the estrogen and Tamox is gone...will thin.  She also said with uterine cancer you bleed, so its "easy" to catch early.  Another reason to keep it.

    I thought she'd fight me on my decision to change to an Ooph, but she was relieved and agreed for me it was enough.

    So if I were you (and I know you didn't ask) ... I'd ask if my fibroids would dissipate after an Ooph.  If so.....you're golden :)

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  • Omaz
    Omaz Member Posts: 5,497
    edited February 2012
    TonLee - what's your surgery date?
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  • TonLee
    TonLee Member Posts: 2,626
    edited February 2012

    Omaz,

    Friday the 10th!

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  • GirlFriday
    GirlFriday Member Posts: 461
    edited February 2012

    That's awesome info TonLee!  I put you on my calendar for the 10th and will be sending you some good vibes!  Good Luck!

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  • TonLee
    TonLee Member Posts: 2,626
    edited February 2012

    Thanks GF!

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  • Omaz
    Omaz Member Posts: 5,497
    edited February 2012

    Me too!

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  • Kaara
    Kaara Member Posts: 3,647
    edited February 2012

    I'm post menopausal (had uterus and ovaries removed 20 years ago) but still starting on tamoxifen because I read a study on this site that said it was better to use tamox for a few years and then switch to aromasin for the remainder.  Since the SE's seem less for tamox, it sounded like a good plan to me.

     IMHO it's all a crap shoot!  I've been staring at the bottle for several days and haven't yet been able to bring myself to start, so I finally decided I would start with half a dose 10 mg and then if I don't have any SE's from that, I will increase the dose in a couple of weeks to the full dose.  It's just the way I take meds sometimes...less than what the doctors prescribe.  Why would a woman who weighs 120 pounds take the same dose as someone weighing 200 pounds?

    Best wishes everyone...sending hugs and positive energy! 

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  • TonLee
    TonLee Member Posts: 2,626
    edited February 2012

    Kaara,

    Treatment with an AI has a slightly better result for post-meno women..(meaning less recurrence)...

    http://www.nejm.org/doi/full/10.1056/NEJMoa052258

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