Tamoxifen and menstruation
My apologies if this has been talked about before, but I have not been able to get the search function to work here for the past few hours.
I had an appointment today with an OB/GYN to discuss the results of an ultrasound I had done earlier this week to check up on a uterine fibroid which has been causing me some issues. I've never seen this OB/GYN before and when he discovered I've been on Tamoxifen for over five years and have had my period the entire time, he became very concerned. I have brought this up with my oncologist before and he said it wasn't concerning that I was still menstruating on tamoxifen. He said some women do and it is completely normal. Can anyone weigh in on this? I'm not sure who I should listen too.
My ultrasound also showed some thickening of the uterus (about double of normal) that the OB/GYN felt warranted a biopsy. He is also advocating that I have a full hysterectomy due to the fact I have a very large symptomatic fibroid and I'm done having kids. He seemed to think that with my history of breast cancer (and recurrence) my uterus and ovaries are just a ticking time bomb and if I don't already have cancer in there, there is just too much risk of developing ovarian or uterine cancer to keep those parts. I'm 39 years old and the idea of having a hysterectomy terrifies me. It has been a rough day processing this...
Would it be wise of me to consult my oncologist before I decide to go the hysterectomy route?
Thank you.
Comments
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Is it possible to get a second opinion from a gyn onc? I had irregular periods on T, but I think regular periods are fine because it allows the uterine lining to slough off. I did speak to a gyn onc and he said if the uterus is proven benign by a D&C there is no reason to remove it. After a year of TVU's biopsies and incredibly heavy periods I opted for a D&C with an ooph. Honestly uterine cancer is pretty rare and generally the treatment is a hyster. Ovarian cancer is a whole other issue. Have you tested negative for the BRCA genes? If so your risk for ovarian cancer is low as well. However your onc might suggest ovary removal or suppression if your BC is estrogen positive. I definitely would not rush into anything until you have discussed with your onc.
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Do ask your onc if you actually have any higher risk for uterine or ovarian cancer than the average woman your age. A full hysterectomy is not to be taken lightly. Did the gyn explain possible side effects and complications vs. benefits? If you are not comfortable, get more medical opinions.
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Yes, I was tested for the BRCA gene mutations and I do not have them. OB/GYN seems to think that because I developed breast cancer so young (33), I am at an increased risk of ovarian cancer. My breast cancer was estrogen positive. My ovaries have been nothing but issues the past year with painful ovarian cysts which get fairly large and have ruptured. My use of Tamoxifen has nearly doubled my risk of uterine cancer over the general population. I'm not sure if there are any GYN Onc in our area, but I am willing to travel to consult one. I may look into that.
I did ask the OB/GYN about side effects of hysterectomy, and he pretty much told me other than recovery from surgery there wouldn't be any side effects. He insists I should be in menopause already because I'm on tamoxifen. That's when I told him I've been menstruating regularly the entire time I've been on tamoxifen. He was shocked. The fact he told me there are no side effects concerns me, because how could you have major parts removed internally and not have side effects?
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From the American Congress of Ob-Gyns (ACOG):
Postmenopausal women taking tamoxifen should be closely monitored for symptoms of endometrial hyperplasia or cancer. Premenopausal women treated with tamoxifen have no known increased risk of uterine cancer and require no additional monitoring beyond routine gynecologic care. Unless the patient has been identified to be at high risk of endometrial cancer, routine endometrial surveillance has not proved to be effective in increasing the early detection of endometrial cancer in women using tamoxifen and is not recommended. If atypical endometrial hyperplasia develops, appropriate gynecologic management should be instituted, and the use of tamoxifen should be reassessed.
Full text is available here:
http://www.acog.org/Resources-And-Publications/Committee-Opinions/Committee-on-Gynecologic-Practice/Tamoxifen-and-Uterine-CancerAs I understand things, tamoxifen is not supposed to stop your periods. It is indicated for premenopausal women, which by definition means women who are still menstruating. I have been on tamoxifen for over three years and having fairly regular periods the whole time (I'm 44 years old). All of my medical providers consider this totally normal.
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Hi Faye -
I am 43 and have been on tamoxifen for 18 months - and had mostly regular periods that entire time. There have been a few stretches of two months without a period, but my OB/GYn and my oncologist both said that as long as I was menstruating somewhat regularly, there was no need for concern, but that tamoxifen can make periods irregular for some women, and stop it entirely in other women (mostly those close to natural menopause, is my understanding).
My Ob/Gyn, who is herself on tamoxifen after BC, said no additional cervical screening was necessary as long as I was having semi-normal periods (as the above post points out, she said that the monthly shedding of the endometrium is a good thing and protective against cancerous changes in the lining - which is why it's mostly postmenopausal women at higher risk for endometrial cancer, not premenopausal.
A hysterectomy does have significant side effects - especially if you're pre-menopausal and when accompanied by an oophorectomy, and I would be concerned about a doctor who said otherwise -- though your doc might very well be right about your early age of diagnosis suggesting high risk, but I would also look for a second opinion. Look for information on the SOFT trial - where ovarian suppression plus tamoxifen, or an AI or tamoxifen alone were compared for recurrence rates. http://www.nejm.org/doi/full/10.1056/NEJMoa1412379...
Did you have chemo initially? The study showed that women who needed chemo initially fared better with ovarian suppression + hormonal drugs than those who just received tamoxifen, but among women who didn't need chemo initially, there was no difference.
From the discussion "Patients who receive a diagnosis of hormone-receptor–positive breast cancer when they are younger than 35 years of age are a subgroup considered to be at higher risk for adverse outcomes than are older premenopausal women, on the basis of retrospective analyses of data from IBCSG and U.S. Intergroup trials.17,18 The results observed in this subgroup in SOFT add to the evidence that ovarian suppression plays an important role in younger premenopausal patients.13-15 Among the women younger than 35 years of age, breast cancer recurred within 5 years in approximately one third of the patients assigned to receive tamoxifen alone but in one sixth of those assigned to receive exemestane plus ovarian suppression.
Any benefit from ovarian suppression must be weighed against the adverse effects. Adding ovarian suppression to tamoxifen resulted in increased adverse events — most notably, menopausal symptoms, depression, and adverse events with possible long-term health implications such as hypertension, diabetes, and osteoporosis. When exemestane is combined with ovarian suppression, adverse sexual, musculoskeletal, and bone-density effects are more frequent than with tamoxifen plus ovarian suppression.10"
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Faye, it bothers me that your doctor insists tamoxifen should put you into menopause. It makes me wonder if he is competent, or at the very least whether there has been a serious miscommunication.
By the way, tamoxifen can cause ovarian cysts in premenopausal women because it stimulates the ovaries. And sometimes tamoxifen can stop a woman's periods, which looks like menopause, but testing her E2 and FSH levels (estradiol and follicle stimulating hormone) may show her to be premenopausal:
"Therefore, we would like to stress the fact that especially during tamoxifen, amenorrhea may falsely suggest ovarian failure, hiding the presence of hyperactive ovaries due to a positive feedback mechanism, which is the opposite from the ovarian failure caused by chemotherapeutic agents." http://jco.ascopubs.org/content/25/24/3787.1.full
A note about fibroids: I considered surgery for them and decided to wait. It seems that the high-dose vitamin D3 I was prescribed helped them shrink, as did permanent chemopause. Just my experience.
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Faye, I think you should find a new GYN, one who understands tamoxifen and cancer and works closely with your MO. Can you get a referral from your MO? Who does he/she recommend? Try to get a couple names and then pick the one you like best.
In my case, I started tamox @ 46 and had my periods for awhile and then they became irregular when I was around 48. My MO said that tamox does not cause you to stop having your periods and that my missed periods were due to my being in "peri-menopause." I took a break from tamox and my periods came back like clockwork for awhile and then stopped. When I asked my MO about that, she said that tamox won't stop you from ovulating but sometimes it interferes with the "signaling." (to tell your endometrial lining to slough off?) So an irregular experience but FYI.
I agree with others--the decision to have a a hysterectomy and remove your ovaries should not be taken lightly. I chose to remove one ovary in 2014 because I had a cyst that was "probably not cancer." (but didn't look like any of the 5-6 types of known benign cysts either) We did watchful waiting for 9 months and it didn't go away so we removed it (there were a couple weird things going on.) At that time, I considered removing both ovaries but did not want to go through the surgical menopause. Then my mom was Dx'd with ovarian cancer, so I wanted the other ovary out. I was on the shelf about removing my uterus as well and got many opinions. My MO thought the risk of endometrial cancer wasn't that high and that there is an increased risk for prolapse. My regular Gyno and an Gyno-Oncologist recommended removing the uterus, in part, because I'd already had one surgery in that area. (2 surgeries in the same area is better than 3). I chose to do the full hysterectomy, and it was the right decision for me, but you should think about the pros/cons before doing it.
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