Decisions re: ovaries/estrogen

ChemicalWorld
ChemicalWorld Member Posts: 172
edited September 2014 in Stage II Breast Cancer

Hi to all, hoping to get some input from fellow Stage II, ER/PR+ ladies in this area.  I was pre-menopausal before I started chemo at the end of 2010, finished chemo in 2011, and never had a period again until 2013, and only one at that, plus one later that was med-induced.  Was followed by two seperate gynos in 12/13 due to changes in staffing, mostly referred due to a history of PCOS along with the BC history.  First gyno advises me to likely have a hysterectomy, due to the Tamoxifen/PCOS combo, but then when the ultrasound comes back and everything looks normal, it wasn't the same kind of recommendation, just to monitor.  New gyno in 2013, seen just after the spontaneous period, says the hyster recommendation was extreme, and that unless I had irregular bleeding etc, there was no need.  She did not do an ultrasound/pap last year.  Gave me provera to take in 6 months if I didn't have a period.  Was EXTREMELY uncomfortable with taking this, but did so once, and had a period. 

Fast forward to this year's round of doctor's appt's and testing.  I saw my radiation oncologist around February or so, and when the nurse took the info from me about the provera, she was concerned.  I then get referred to a new medical oncologist (mine moved practice in 2011, and I didn't have a new one), as well as referred to a gyno-oncologist to discuss the provera etc.  They said due to my age (I'm in me early 40's) that I should be monitored for this stuff.  No probs with the medical oncologist, just a touch base and review of recent tests, discussion about 5 vs 10 years of Tamoxifen, and what will happen if I go into menopause in the meantime, i.e. med changes.

Have now seen the gyno-oncologist twice.  First time was just discussion, then she wanted to do the blood test to see if I am in menopause.  Turns out, despite never having periods, I am not in menopause.  There is still a normal amount of estrogen in my body for my age, which obviously is not a great thing when you're ER+. Oh, and she says that when I had that spontaneous period last year, the gyno really should have done a biopsy (!!!!), but that realistically I would have kept bleeding.  Anyway, I now have to decide:

-take the provera again, giving me some protection from endometrial cancer

-get the Mirena IUD, same as above, both with no effect on the ovaries

-medically induced menopause, i.e. Lupron shots

-surgically induced menopause, either through laprascopic removal of ovaries, or a full hysterectomy through surgery ( I can not have the trans-vaginal or whatever its called as I've never had a baby)

I have not been tested for the BRCA gene, but she has mentioned a couple of times how removal of my ovaries would cut my breast cancer risk by 50%. 

I have no idea what I am doing and honestly terrified by the thought of another surgery and what they could find in there, along with the possibility of coping with full blown menopause without any benefit of hormone therapy.  My mother had a full hysterectomy around my age back at a time when they never gave hormone therapy, and I remember how it affected her. 

I'm not at a point where I'm still thinking about having kids, but I am single and I wonder about a lot of things. 

As for practicalities, I have little to no sick leave, having tapped out what I had and borrowed forward for my earlier time off work. 

I am no further ahead with this decision than I was two years ago when I saw the first gynecologist.  Help!

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Comments

  • jgbartlett
    jgbartlett Member Posts: 112
    edited May 2014

    Hi, 

    Sounds like a tough decision, particularly as you may want to have children. I'd suggest you do some research on the mirena before agreeing to that (there is a thread on here and some further info on the internet that suggests Mirena may be a cause of BC). I had one in when I was diagnosed - my onc never thought it a problem though.

    But for what it's worth, I'm 42 and had a laparoscopic oophorectomy last June, put me into menopause and I had hot flashes and mood swings for a while, but these have settled now. Definitely not as bad as I thought it would be.

    Sorry I can't help more, hoping more will respond soon.

    Julie

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  • coraleliz
    coraleliz Member Posts: 1,523
    edited May 2014

    The Mirena IUD was suggested to me. Although it secretes progesterone & I was PR+, the GYN I saw didn't think enough of it would be absorbed systemically to cause problems. I'm not yet menopausal at 55(diagnosed at 52). Like you, I've been treated for PCO in the past, found the treatment worse than the disease(?).

    Back to why the IUD was suggested to me. I still get occasional periods on Tamoxifen(every 10-11 months, but maybe that is changing). My lining is thicker than "normal". I have weird spotting(rather frequently). I've had biopsies and a D&C. Polyps removed. Ultrasounds to monitor cysts(all of which have resolved spontaneously). Sometimes wonder if I should get a hysterectomy. My original plan was to remain on Tamoxifen for 5years(have completed just over 2 1/2yrs). I think I can continue for another 2 1/2yrs. Just don't want a hysterectomy if I can get by with a couple of D&Cs.

    I declined the Mirena IUD even though it would keep my lining from getting too thick & stop the funky spotting.

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  • ChemicalWorld
    ChemicalWorld Member Posts: 172
    edited May 2014

    The decisions are made that much harder by getting a different opinion from every single doctor.  I too was told the same thing about the mirena and the provera for that matter, not enough of it going into my bloodstream to be concerned about, yet these recent doctors are really concerned about it.

    Having kids is not the issue, that ship has sailed as far as I'm concerned. I'm just really lately starting to get to the point where I am maybe thinking about dating again, getting back into things, then this.  I'm so angry that I am having to deal with all this crap.

    The last ultrasound I had was in 2012, and my lining was thin then.  My PCOS has never shown up with obvious cysts on the few u/s I've had. I have had no spotting since chemo, just the one normal period last February, and one induced last August by provera.  Nothing since.  The gyno's only explanation for this is that maybe chemo and all that set me back to where I was in my teenage years and 20's, when I would go months and months without ever having a period. 

    Part of me kind of had it in my head that without having any periods, that I was at least perimenopause and thinking to myself, hey, this doesn't feel so bad, I can work with this.  But maybe the reason I feel either bit good at all is because I still have lots of estrogen (which is good for feeling good, but terrifies me with the breast cancer).

    Julie, how was your recovery from the ooph?  Did you try lupron first? 

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  • jgbartlett
    jgbartlett Member Posts: 112
    edited May 2014

    No I wasn't offered Lupron.

    Recovery was good. Overnight in hospital & two weeks off work. No lifting for 6 weeks. Pretty sore for that first week. Within a few days I was getting multiple hot flashes each day, but that has settled down now and I'm only getting 3 or 4 each week. 

    Trying to get on with life, which is difficult with this big C cloud hanging over your head. Was 3 years since my diagnosis on Friday, so been struggling a bit mentally over the past weeks.

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  • Sinsin
    Sinsin Member Posts: 358
    edited July 2014

    Chemical, I am 34 and want to get my ovaries removed. I too am ER/PR+ and am currently in menopause from treatment. I had a chemical imbalance that started last year that was causing me severe mood swings and I would crash and burn during my period. I was seeing a psychiatrist and trying multiple drugs that weren't working well until chemo threw me into menopause. Now my drugs are able to work and the only real side effect I have (other than no periods) is the hot flashes. I find menopause agrees with me. Now as to my mother, she underwent menopause early and had a hysterectomy by the age of 42. She had severe mood swings, hot flashes, and severe bleeding/periods until the surgery. Usually if the mother goes into menopause early, the daughter may as well. However, our experiences with it are completely different as my mother had a hard time of it and I am not. So, just because you're mother had a rough experience doesn't necessarily guarantee that you will. Also, you may not be able to take hormones but if you do have issues with mood swings, you can take an antidepressant. Many people do. I do and am grateful for them. Our bodies are funny things sometimes and sometimes they need help staying balanced. As to the surgery, I would recommend having your ovaries removed as well as the fallopian tubes over having a hysterectomy. My OB/GYN states that current studies and lit show that ovary and tube removal combined greatly reduces your chance of ovarian cancer even more than just having the ovaries removed. This matters as we have a higher chance of having ovarian cancer since we have or had breast cancer. Also, it can be done laparscopically, which is minimally invasive and therefore a much easier recovery than a hysterectomy.

    Also, there are currently two studies being done on whether premenopausal or postmenopausal ladies taking Tamoxifen have the better advantage of not having a breast cancer recurrence. They are SOFT and TEXT and the results are due at the end of the year. SO, you may want to try the medically induced menopause and wait for the results of the trials before making a decision too.

    Whatever you decide, good luck!

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  • ChemicalWorld
    ChemicalWorld Member Posts: 172
    edited July 2014

    Thanks Sinsin, it really does help to hear other's experiences.  Have ditched two of the four options and had a very good conversation with my oncologist last week about the Lupron/Ooph options I leaned towards.  Have a prescription but have not yet taken it. 

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  • rgiuff
    rgiuff Member Posts: 1,094
    edited July 2014

    Chemical, if nothing bad is currently showing up on ovaries or uterine lining, I'm not understanding the need for any surgery. Sounds like chemo could have made you perimenopausal or tamoxifen is also known to interfere with periods.  if you are perimenopausal, then you will naturally go into menopause in a gradual way.  And without an aggressive cancer, is lupron even necessary? Tamoxifen is, after all, for premenopausal women, and on its own, should block estrogen from entering any leftover cancer cells.  I was perimenopausal when I started on tamoxifen, periods gradually got further and further apart. Oncologist never suggested lupron or any other interventions, just tamoxifen. I would have been very resistant if more aggressive treatments were pushed on me. 

     And Gyn just yearly monitored my uterine lining, which did thicken to 10mms at one point, but never biopsied it, said it's normal to have thickness with tamoxifen. Once I finished with menopause, the uterine lining thinned out on its own. 

    I'm currently done with medications, but do eat much healthier and have made regular exercise a part of my routine. I continue to concentrate on quality of life. I use a vaginal estrogen/testosterone product approved by my Gyn and Onc, which helps with dryness and sensation down below.

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  • ChemicalWorld
    ChemicalWorld Member Posts: 172
    edited July 2014

    Honestly my oncologist says she is at a bit of a loss to explain what is going on with me period wise.  I had hormone testing done a month or so ago and I am most definitely not in menopause, still making lots of estrogen.  But I am not having periods.  Her best explaination is that maybe the chemo and tamoxifen set me back to my teens and early 20's when I would not have periods for months and months at a time (I have PCOS). 

    She is also sort of operating under the assumption, or at least treating me as though I am BRCA positive.  I have not had the test and not sure I will (I don't quite meet the criteria and don't need any more insurance fallout), but she said due to my age at the time of diagnosis, it was possible.  And that the breast cancer increased my risk for ovarian cancer, with the tamoxifen and lack of periods increasing the risk of uterine cancer.  She said I could go every few months and have ultrasounds and the tumor marker test specific to ovarian cancer, but I am not certain that mentally I can handle that constant monitoring on top of what I already have, and I am tired of always feeling like a ticking time bomb. 

    I'm scared, and believe me, I do not want aggressive treatments either.  I would much prefer to have everyone leave me alone and just continue as is, but I feel I am taking risks that way.

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  • pzercher
    pzercher Member Posts: 51
    edited August 2014

    I also am trying to figure out what to do with the lady parts. I started Tamoxifen last December, and three months later had my yearly exam with my primary care doc. He said my uterus felt "asymmetric" and sent me for an ultrasound, which showed a "mass." A follow-up CT scan revealed cysts on both ovaries (around 2 cm) and a 6 cm fibroid that is protruding out. No procedures recommended, since at that time I was having no symptoms. Soon after that, however, I began having strong feelings of pelvic pressure and pain. At the same time I was preparing for reconstructive surgery (I had a unilateral mastectomy in Dec., and on July 21 had a DIEP flap reconstruction). I felt too overwhelmed to tackle the pelvic pain. MO denied that Tamoxifen might be causing growth of the fibroid and cysts. Second CT scan (ordered to check out my veins for my DIEP) revealed the fibroid had not grown further but the ovarian cysts had.  Stopped Tamoxifen for the surgery, but have been back on it now for two weeks.

    I am 49, so not far off from menopause (in my family women don't finish until mid 50s), and yet I am hesitant to do anything prematurely. I hate surgeries. My whole treatment process was very complicated with many different options available. I have mixed feelings about having done the reconstruction; the result has been ok but of course does not look or feel like a normal breast. So I don't want to rush into any permanent decision. I did notice the recent NCI report on better disease-free results for premenopausal women who have ovarian suppression and exemestane as opposed to tamoxifen.

    For women who underwent oophorectomy and/or hysterectomy, what  procedure did you opt for and how was the recover afterward? Side effects? My tumor was pretty strongly HR sensitive, so it makes some sense to consider in addition to taking care of the discomfort I am feeling.

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited August 2014

    pzercher - it is important to consider the negatives of surgery - the possibility of increased cholesterol, heart issues, bone loss, etc., as well as complications from the surgery, before making any decision.  Ovarian cysts and fibroids are very common - unless they are symptomatic they are pretty harmless.  You would still need to be on hormonal suppression drugs after having surgery, and if you are tolerating Tamoxifen well, you might continue on it after a hyst/ooph, or change to an AI drug.  I had a total abdominal hyst/ooph and nine years later was diagnosed with a strongly ER+ mass, so the surgery alone may decrease your risk, but it doesn't erase it. I had the hyst/ooph due to many fibroids that were symptomatic, they took my ovaries out because I was 45 and done with babies, and they found a 3cm pre-malignant ovarian mass that never showed up on any imaging.  I have issues with atrophy and dryness - can't even have a pap smear anymore, too likely to tear. My cholesterol went up to 260 with no diet changes or weight gain, so I did have to start a statin. I have had bone issues - was osteopenic after the hyst/ooph and chemo and AI drugs pushed me to osteoporosis.  I do not get a Prolia injection every six months and my bone density is quite improved now.

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  • pzercher
    pzercher Member Posts: 51
    edited August 2014

    SpecialK: Thanks for your response. So many people minimize the various surgeries, it is hard to know what it will be like for each individual. I think I will take a "watch and wait" approach.

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  • LW0919
    LW0919 Member Posts: 196
    edited August 2014

    Pzercher:  I had a full hysterectomy, oophyrectomy and tubes removed.  They took it all.  I had 7 submucosal fibroids that were causing extremely heavy bleeding and endometriosis.  I figured since I was ER/pr positive it was a win, win situation.  The recovery was a bit painful but not unbearable.  I was working 2 weeks later.  I read and negotiate contracts at my job, which made it easier to go back since I sit all day anyway.  So far no negatives to report.  I don't really feel any different than I did and so far no problems with dryness, atrophy or hot flashes.  It's been over 3 months, maybe it will change with time but so far, so good!

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  • noonrider
    noonrider Member Posts: 464
    edited September 2014

    I am trying to decide this as well. A bit of history:

    I had a partial hysterectomy (uterus and cervix) with cystocele and rectocele repair at age 29 for grade 4 prolapse. Ovaries were left intact. Gotta love having the benefit of PMS without a period. Loopy

    Fast forward to this past spring, age 46 when I was diagnosed with BC. I am ER/PR+ but cannot take tamoxifen or the other drugs because of an extremely high inherited stroke risk. (even my 18 year old daughter has had strokes as an infant/toddler) I just finished chemo and will be having BMX on Sept 12. It has been recommended since I can't take the hormone blockers that I have my ovaries removed. My husband is really worried that I will become pscyho bitch immediately after surgery. I've been horribly moody since my last round of chemo, I cannot imagine being crabbier than I am now!

    Plus, there are the other health implications, bone loss, etc. Does anyone have any thoughts?

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