Oophrectomy and hysterectomy

[kk1]

Those of you who are er/pr+ and had an oophrectomy did you also have a hysterectomy at the same time? I am also interested in peoples experience with zoldex is it working for you? Do you have occasional bleeding episodes but Estogen levels are still low?

I am on Zoladex and Aromasin but twice in the last year I have had light to moderate bleeding for a few days. I first thought that it was my menses and the Zoldadex was not working but blood work indicates low estradial <20 (eg. Menopause) but also low FSH (usually high if in menopause). I found this confusing but a little web searching suggests that FSH levels can fluctuate a lot during the 1st few years of menopause and are not a reliable indicators….wondering if that is also true when menopause is chemically induce?
This bleeding of course makes me worry that I have estrogen floating around in my body so I went to see a gyn/onc surgeon about getting any Oophectomy.

He said that the bleeding was probably not menses since my blood estrogen is low and that some people experience occasional bleeding due to thinning of the uterus during menopause. Okay that was comforting but then he suggested that I have not just an oophectomy but also a hysterectomy. He started to go on about tamoxifen and HRT therapy and increased risk of cervical cancer ect and that I might as well have the hysterectomy at the same time. I told him that I would never be on tamoxifen due to the her+ antagonism and also no HRT since my BC was er+/pr+. It was like he was not listening to any thing I said and his argument for a hysterectomy does not seem to make sense.

I am 47 yrs old and stage IV and feeling great!!! I will have been dancing with NED for a year at the end of next month. My life feels like it is almost completely back to normal. I hate the idea of having major surgery ----they said I would have to stay home 4-6weeks if I had the hysterectomy.


Any experiences you ladies can share would be much appreciated

Kk1

[*_Cynthia_*]

KK1,

I can relate. I was pre-menopausal when diagnosed 9/03 and thrown into menopause by chemo. I was er+/pr+ and put on Arimidex but then my periods came back. I received the Zoladex shots twice and hated getting them. I also worried that perhaps they weren't working. So I went to my gyno who, like yours, also suggested the full blown hysterectomy. Like you, I had no interest in undergoing major surgery after just recovering from my bi-lateral mastectomy, reconstruction, chemo and radiation. I have a three year old that I didn't want to hear I couldn't lift again. I explained all that to the gyno who, to his credit, said I made perfect sense and quickly switched to a discussion of removing only my ovaries and fallopian tubes laporscopically. I chose that route. Turns out I had a huge fibroid that I never knew was there so they ended up having to do a much larger cut to get it out (though they left in the uterus). In any event, I had absolutely no problem with any of it. My surgery was on a Wednesday and I was out to lunch with my family on Saturday. I took off work for a week but I really didn't have to. I am so glad I did the procedure. I love not getting the shots each month and knowing that I have done all I can to control estrogen. The doctor said I have about a 10% chance of having to have my uterus out someday because of fibroids, but I will take that chance. Also, I still need annual pap smears.

Please do what you think is right.

Best of luck.

Cynthia

[jojo]

Hi Kik,

In your post, you say that you are on Herceptin & Aromasin. I am on the same combo right now (as well as Zoladex). I was pre-menopausal at original diagnosis 2 years ago (age 35, now 37). When my period came back, I think, 2 months later after completing chemo, my onc then put me on Zoladex & Femara. I believe this is what we would consider "chemically-induced menopause." I haven't had any menses since then.

How strong was your ER & PR status? I'm 40% ER+ & 20% PR+. Also, is Aromasin your first hormonal blocker? Actually, Aromasin is my 3rd blocker; I recurred while on Femara & then Faslodex for 6 months. I've been on Aromasin for 8 months now.

Why are you stage 4? Was that your first diagnosis? I'm stage 4, due to a recurrence with a brain met(s) & cancerous supraclavicular nodes from last year. I'm currently at "stable" disease.

Kik, please let us posted on your decision & treatment. Good luck!

[Becky]

I was doing fine without menses (from Chemo) with high FSH and LH and was on Arimidex. Weirdly, on Sunday, I got my period (it was like a faucet for 2 days) but yesterday and today is is really slowed down and will probably be done tomorrow. Ironically, I am getting an oophorectomy on August 29 due to having 2 cysts that won't resolve (on my left ovary). Saw my gyno Monday for pre-surgery meeting and told him about my "period". He is calling it abnormal bleeding. (My onco made me stop the Arimidex until the day after the surgery saying that being off of it for about 3 weeks is no consequence in the scheme of things - I am on weekly Herceptin because of the trial). Naturally, it makes me nervous to be off Arimidex. My gyno says that younger women who are chemically (to include chemo) induced to menopause always produce something. Even natural menopause a little something is still produced.

I was 50% ER and 5% PR. I will be in menopause for sure at the end of the month.

Best wishes,

Becky

[*_cheryl_*]

2 years ago I was 40 and had only an oopherectomy. It was done laproscopically and so simple. Dr. ended up sending me home instead of hospital stay. I was up and wanted to be about the next day, but my husband made me rest. Able to do lite errands/stuff by 2nd day. Went on a girls weekend 1 week later! By the way, this is what the dr. said I could expect.

My onc. who is very conservative recommended full hysterectomy. My gyn (who is the one the hospital nurses use) said hysterectomy was not necessary unless I wanted it. He said because I wasn't on tamoxifen, BRCA 1&2 -, no family hx of female cancers that I was very low risk for uterine cancer. He said if I was the 3% that gets uterine cancer, is easy to cure with hysterectomy at that time. I do get pap smears every 6 mos. now.

good luck with decisions

Cheryl

[Becky]

Cheryl - when did you get the menopause symptoms? How bad were they and how long (weeks, months, years) did they last?

Just wondering since I get an oophorectomy soon.

Thank you in advance

Becky

[*_Cheryl_*]

Becky,

The symptoms came on right away. In general, I seem to run much warmer than before and still am learning to dress down. No more sweatshirts unless they zip and I've traded flannel nightgowns for t-shirt tank tops! I do get several hot flashes per day, less in cooler weather. Sometimes night sweats, but these seem to come and go. I find the less stress I have, less hot flashes and night sweats. You can take effexor for hot flashes if they are too bothersome. I have vaginal dryness that is only a problem during sex, but easily taken care of with over the counter non estrogen gels. Overall, my libido is very, very low, but I can become aroused, but I have to remind myself to "remember" to leave time for sex. That part is really weird. My symptoms have remained the same for the last 1 1/2 yrs, so I think they are here to stay. Compared to chemo, it's a breeze.

[susie]

I had an oophorectomy in February. I was 52 years old. In 1996 I underwent a "chemically induced" menopause from chemotherapy, but lo and behold, at age 52, my FSH and Luteinizing Hormone were in the pre-menopausal range! I hadn't had a period in almost 10 years. A nurse gave me the heads up that not having a period, even for years, does not automatically mean that you are menopausal. And I wasn't. I suspected the fluctuating hormones because 1) I felt the emotional ups and downs of cycling. That's all. I suspected it, because my mother had menopuse in her mid-50's and my grandmother had her last baby at age 47. My onc concurred that yes, I was not menopausal and that blood tests are far more definitive than whether or not we have a period.

[kk1]

Just to give an update. I have decided not to do anything. My blood work (low estodial, and low FSH) in relation to how Zoladex was easily explained by my oncologist friend. I post his comment below for other er/pr+ pre-menopausal women who might worrying if Zoladex is working.

He said:
"The artificial menopause induced by Zoladex is what's screwing up the FSH.
Zoladex works by down-regulating the pituitary gland in it's production of
FSH. (How this works exactly is a bit of a mystery to me. It is a
leutenizing releasing hormone analogue (LHRH), which is a hormone that
stimulates the pituitary to release FSH and LH. After a brief time,
apparently, the pituitary gland gets tired of this and just stops releasing
FSH and LH). In natural menopause, the ovaries quit making estrogen, so the
pituitary tries to flog them into making more by releasing more FSH to
stimulate follicles in the ovary. So FSH is high but estrogen remains
fairly low in menopause. But with Zoladex, FSH is driven down by the drug,
so the ovaries quit working because they're not being told to work by FSH.
Make sense? Bottom line: I would expect your FSH to be low if Zoladex is
doing what it's supposed to do.

The oophorectomy question sounds a little confused. Basically, you want to
shut down the ovaries, either by removing them or by taking Zoladex shots.
As long as your estradiol/estrogen level is low, the Zoladex is working, and
there probably isn't any advantage (in terms of effectiveness) to have an
oophorectomy. The obvious advantage, though, is that you wouldn't need to
take the Zoladex any more. Another advantage is that you decrease the risk
of ovarian cancer, which is probably only significant if you carry the BRCA
breast cancer gene (I don't remember if you've been tested or this has come
up - but that's another topic). Disadvantage is that you'd require a
surgery, and it would be permanent (which probably isn't a real
disadvantage, since you're not planning to have more kids). Many times it
comes down to this: Gyn surgeons want to do an oophorectomy, Medical
Oncologists want to give a drug to achieve the same effect.

I don't really know why the Gyn recommends a hysterectomy except that it's
convenient to do it at the same time, and if you have had abnormal PAP
smears or symptomatic fibroids, it will solve those problems once and for
all. But as far as Tamoxifen and uterine cancer, that's a non-issue.
You're not on Tamoxifen (which increases the risk of uterine, or
endometrial, cancer). Arimidex and the other aromatase inhibitors don't
stimulate the endometrium, and there's no evidence that they increase the
risk of uterine cancer. From what you've said, I would wonder whether your
Gyn understands what your Oncologist is doing with the aromatase inhibitors.
I'm not sure that the average Gyn is up-to-date on the use of anti-estrogens
in breast cancer."

So after also talking with my "official" Onc and my orginal breast surgeon, who both confirmed my friend's interpretation, I have decided to do nothing.

I had the BRCA testing over a year ago and it was negative, for me I would rather have a shot any day over surgery. Being stage IV and NED for almost a year, if it's not broken don't try and fix it ;).

have a nice weekend
kk1