Finding out about medically-induced early menopause

And I left the hospital and about a week later I got a phone call and that's when they explained to me, "Actually you have an advanced growth in your uterus. It’s cancerous and if it's not removed quickly - you will die." So I was advised at that stage that the best course of action would be to remove my uterus.

I was 37, I hadn't had children. I hadn't really kind of thought about kids too much because I always thought I'd have the opportunity to have children. And I kind of just figured that, I had to rest of my life to work all that stuff out – “That'll all work out later”. And over a period of sort of three months I had to make the decision to, pretty much have my uterus removed, have my ovaries removed, and just get on with life. And - that's how the menopause story started for me.

Once my ovaries were removed and the uterus was removed I was told I would experience - I potentially could experience menopause symptoms. But it would be, “At worst it might last maybe six to 12 months, at best you might not feel anything at all.” And I was told that I'd have lots of consults and lots of information and have lots of medical sort of treatment that would help the symptoms and that I'd be really well supported.

So I was pretty confident. I wasn't too stressed. I had a lot going on work-wise and a lot of pressure, but I wasn't too stressed. I kind of was comfortable with the idea that I'd be entering into menopause. And I'd kind of reconciled that I wasn't going to have children and - that my best options were to just have the growth removed because it was so aggressive. Yeah, and that's the story of how I got the menopause.

I like my specialist, my specialist [has] been really good but there was not a lot of information. He was quite open about the fact that, when menopause was going to happen, he told me and then, you know, obviously, I knew what that would involve. At the very first diagnosis back in 2005, it wasn't really an issue and they were very focussed on preserving my fertility, which was what I wanted.

But then when it came back in 2011 and 2013, it was made clear that what was going to happen. And the doctor was open about, like, if I had any questions or anything, but there wasn't really any sort of standard information that they gave or any sort of – yeah. It was just, “This is what's going to happen and [laughing] if you need anything let us know.”

Could you talk a little bit about what you were told about early menopause, right from the start of when you first were diagnosed with breast cancer?

They did say that the things I was experiencing are quite common for people doing chemo treatment. So the changes in temperature, mostly the hot flushes. Although during chemo I did get sort of up down, up down with my temperatures. The muscle aches and pains. The fact that my periods had stopped altogether and that was quite early on during chemo treatment, they assured me that that happens to a lot of people and it doesn't necessarily mean that you're in early menopause yet.

For a lot of people after they finish chemo after a period of time they start again. That didn't happen for me. They never came back, which I see as a positive personally [laughing]. I'd already had my children and I wasn't planning on having any more. So that was a positive thing. [laughing]

I had the transplant in November 2011, followed by radiation treatment after that and in the ensuing months it was pretty obvious that menopause had started, the symptoms had arrived.

I felt those symptoms for quite a few months and was told that it's possible that you can have a spontaneous start of ovary or, you know, ovarian resurrection hormone function. That to wait a little bit longer, before I had some sort of testing to confirm that. At the time, I'd already been... I went back to the fertility specialist in [city name], that I had seen for the IVF process and for the ovarian tissue preservation. My haematologist suggested that I see her again. It was pretty clear that it wasn't his area and he didn't really know where to send me exactly or what to do.

And seeing her, it wasn't really her specialty area either. She said, "Maybe we can get you some patches," or something along those sort of lines but it was a fertility specialist that gave me a referral to their menopause clinic.

At the time you're thinking, “Maybe it's just post-treatment, sort of things.” They say chemo makes you very dry in the face and the body, wait and see, that sort of thing. “Maybe it'll go away.” I think you're just so overwhelmed by it all, you can't separate one thing from another.

And, so I guess... Nobody had said to you, "You'll go into menopause"?

That's the really interesting thing, I think, is that I thought about fertility, and I thought about my ovaries stopping working, which meant no periods, which meant inability to have children. But, in terms of the link between ovarian function and not having hormones, and that means menopause, and what symptoms that all means, I hadn't given that any thought at all. It sounds a bit farcical to think that you wouldn't connect those things, but your brain isn't functioning normally when your body isn't functioning normally. You've got so much going on, you're not thinking straight about those things, but the word menopause was never mentioned.

[You said] the fertility preservation specialist, they didn’t really talk about it either because their focus was more on whether or not you wanted to have IVF?

Yeah, but she did I think a little, maybe a year after my having chemotherapy …. So I’m guessing probably it might have even been November 2014 when she then did a blood test for me to measure, I think something about follicle and so some other hormones apparently that they can test in my blood levels. So we did a blood test and then when I showed my oncologist and then she said yes, to a certain extent, sometimes that could be because of the chemo, but also she said, “You’re on tamoxifen, sometimes tamoxifen does also lower that set of hormones.” So she says it’s a little bit of both and no-one had a clear indication, what long-term changes or what happens if I came off tamoxifen. And then once when I started on the ovarian suppression and the exemestane, we knew that the periods won’t come back for a while because that was why they wanted to put on the ovarian suppression.

Has anyone spoken to you about the likelihood of whether or not your menstrual cycle will return?

I think – I haven’t really put it on top of my agenda to discuss it, but from discussions with the fertility specialist whom I still see once a year and the oncologist, I think it’s still an unknown … If I have this treatment for five years, so 10 years and at the five year mark, yeah, will I be closer to the natural menopausal age or not? We don’t know.

It seems that from what you’ve said that your health professionals have been relatively clear with you that this is more ovarian suppression rather than early menopause.

Yeah, I think everyone is thinking that that’s what it is, but I guess from what I can sense and feel it’s almost still a grey area in terms of no-one quite knows how my body is going to take to all this. But I guess, if everything aligns up to what they assume it to be, then this is a temporary situation.

I guess at the start, when you’ve been given this news, you kind of do whatever they tell you to do because you just want to live. You just hear ‘cancer’ and you just think, ‘I’m going to die.’ They did describe my treatment as the hamburger with the lot and I will always remember that but that was kind of how severe it was going to be. It was extremely intense and I guess, when I was told that, you would have surgery. I had to go through the first stages of IVF because I didn’t have kids and the cancer - having chemo probably gave me no - zero to no chances of being able to have kids naturally, so I’ve got embryos. And then I had to go through chemo, radiation and more surgery if I wanted to sort of look a little bit more normal.

So, in the first few stages, you were told all this information and you just take it in and go, ‘Yes, of course I’m going to do all of that,’ but then slowly you start realising how intense the treatment is and you start looking at other avenues, sort of natural ways of getting through it. And maybe I don’t need to have chemo because I just can’t do this anymore, and my oncologists at the start were amazing. I would see them every two weeks just to talk to them about treatment and how I was going and sometimes it would be weekly because I suppose they understood how intense this was going to be and, as soon as you go away from having a meeting, you have all these questions, so I found that they were - you know. My oncologists at the start were really amazing with trying to give me the best information and answering any of my questions and I felt like we were sort of in it together. I suppose now, thinking about what I’ve come out with the early menopause and, even my severe osteoporosis, I realise that, at the time, they were probably just telling me what they wanted me to know so that I would get through chemo and radiation. Maybe if I had have known that early menopause was going to be so hard and the osteoporosis was going to be so bad, that maybe I would have spoken to other specialists to try and help me with that path as well, to maybe lessen the severity of what I’m going through now.

So do you feel like these things were not part of the discussion at the start?

No, not those things. I honestly believe that oncologists just really need you to get through the treatment and out the other side first. They need you to complete all courses of chemo, the weeks and weeks of radiation and then we’ll deal with the problems afterwards.

Our family does carry the BRCA 1 gene mutation, and based on that information, the other three girls in the family all were tested for the genetic mutation as well. And I was the other one that did in fact have the mutation. So based on advice from the doctors at the Familial Cancer Centre I did decide to go ahead as a matter of priority and have the prophylactic oophorectomy, quite shortly after learning about the mutation.

So that was about five years ago, and the surgery itself was pretty straightforward and easy and easy to recover from, but it was the actual instant surgical menopause that was the challenging aspect of that, which I probably underestimated the impact that would have.

But I pretty immediately knew that I would do the oophorectomy if that was the case, again, solely for the decrease in the cancer risk and particularly because it’s so difficult to detect, where with the breasts I wasn’t as motivated, because I felt there was more you could do to decrease the risk. And if you did have it, you could detect it earlier and much better health outcomes and treatment outcomes. So I wasn’t nearly as convinced about doing much besides surveillance with that, but with the ovaries, I was focused on the cancer risk and decrease that, assuming, every woman goes through menopause and every woman gets through it. It might not be fun.

There might be, you know, the more intense quicker symptoms, because it is an instant menopause rather than, going through it for years and having those things accumulate over time, and then I knew that was going to be a different experience and I perhaps even thought that would make it almost easier, because it was quicker and then you’re through it. So again, I did focus on the cancer risk alone. That was the motivating factor and just assumed I’d just get through the menopause part without too much thought.

I was experiencing these menopausal symptoms with periods all over the place and hot flushes and that kind of stuff. Again I had another laparoscopy because I had a lot of pain on the left side again. I went to a gynaecologist. He was - when I said to him, "I think I'm going through menopause, early menopause," he was just very dismissive and said, "You're too young to be going through that."

I said, "Yeah, but I was 25 when I got breast cancer so this whole too young to get these kind of things it doesn't wash with me because anything can happen really. And why wouldn't it be? I've only got one ovary." So, at this point I'm Googling stuff of course. And people say “Don't do that,” but when you don't get answers and the doctors are dismissive of course you do. And I'd read somewhere that if you'd only ever had one ovary it does the job of two, of course - and from the age of 14 I'd only ever had one ovary and it did the job of two ovaries - until I was 37.

And so it seemed to me that - that ovary had just completely conked out, or the surgery I'd had in February 2008 had caused some damage to the ovary and had cut off the blood supply or whatever. And that's what prompted it - prompted the early menopause. So this gynaecologist was very dismissive and said, "Oh, you're not going through menopause. No, I've just operated and I'd seen you had just ovulated, you know, a few weeks before anyway," because he'd looked at the ovary and you can tell. But, like, I was still getting periods but it was just very on off, on off, all the time.

They wouldn't come for months or they'd not show up at all for months, or then I'd get them and it was really heavy, then I'd get another one a week later. It was just completely all over the place. But when he was saying that it wasn't menopause I just got more and more angry and frustrated. So he finally said, "Oh, I'll do a blood test," and he did a blood test just to shut me up basically. "All right, I'll do a blood test," he said rolling his eyes. And the blood test came back and I rang the office to get the results and I spoke to the receptionist and she said, "Oh, yes, you're postmenopausal."

My husband and I, we were trying to fall pregnant and didn’t realise that I was, at that time, going through perimenopause, which caused a few hassles, because of course, every time I didn’t get my period when I expected it, I was all excited thinking I might be pregnant, which didn’t happen. And so, we were having a lot of difficulty obviously trying to get pregnant, and when we went to the doctor, he did a laparoscopy.

I had a fibroid removed probably two years before and at that time he said - I had a lot of endometriosis. So when we went back to get me all checked out for the fact that we weren’t getting pregnant, he said, “No, you’ve really got quite a damaged uterus. You’ll need to have a full hysterectomy.” He did leave the ovaries in, hoping that I wouldn’t hit menopause. And that’s how he explained it, but it was fairly obvious within a few months after the hysterectomy that I was going through menopause. So, looking back on hindsight it’s obvious that I was already in perimenopause prior to having the hysterectomy anyway and it just kind of pushed everything forward and brought on the menopause.