Changes and improvements observed over time in the care of women diagnosed with early menopause

It’s changed from being doctor driven; you will do this, this is your problem, to a collaboration. Discuss the symptoms, let the patients own them, and then we find there’s far better – if the patient’s in control of the decisions and the results. So if we even bring up the topic of premature menopause, I’ll often use a questionnaire for a start, go through the symptoms and say, “Well, could it be menopause, could it be anxiety, could it be something else?” And then work through it and then possibly offer a blood test and take it from there.

There’s lots of issues that come and go. So we take the middle path and say, “Look, have you got symptoms? Can you cope with them? Is it going to affect your life in the long run? What could potentially happen if you do or don’t get treated, and how can we make your life better?”

And use those approaches. And so we’ve probably got more tools at our disposal and a lot more education to make people more comfortable. And if people are quite fearful, for example, if someone presented with, a presentation of premature menopause with an osteoporotic fracture. They’re going to need a lot of support through a lot of areas of their life to work on it.

The digital age has been phenomenal, and to just be able to click on something, and to have them as my favourites. So in a consult, I can just click, print, and I know what’s on it, that’s been amazing. And, a very useful tool. So I think the whole – I mean everything has become electronic in those 16 years. We used to have paper diaries of appointments and whatever, and paper files, and now it’s all going the other way. So when it works it can be very useful.

Good quality information, and being able to find it has been – because you used to sort of shuffle through journals and stuff like that, and to have reputable sources makes a big difference. The Mayo Clinic in the US for example, and our health organisations here, and International Menopause Society, to have those big names and know that if there’s something I don’t know, I can look up.

And even PubMed to know that I can look up the latest review article in hormone therapy, or menopause or premature ovarian insufficiency, or fragile X, to find out – it’ll be within my grasp. That before took a lot of time, and the fact that you don’t have to do it with a patient. You can do it later, at home, search it in your own time, and spend more time, and do it properly.

I’ve been doing this since 1996 – and I think, in the last 21 years, an enormous amount has changed. The attitude of fertility preservation becoming an important part of acute discussion has just been completely transformed. When I started, it was patient’s relatives ringing us. So, you have to remember, [interviewer name], the way this all started – it was driven by patients, not by doctors. So, what happened was, we’d have patients’ relatives ringing going, “Oh, my daughter’s about to do this, what can you do?” We’d go, “Okay, we’ll have a think about that.”

Then, it started – we’d get referrals from nurses. Then, finally, we got referrals from doctors. The last bastion I think was, in the paediatric sphere, and then that has really moved on. Everyone realises it’s doable to have a conversation. You may not be able to do anything for a patient, but you can have a conversation with them and make some plans for the short, medium and long term. The most important thing that I want you to put in is that the patients appreciate this, because to them, it gives them confidence – it means to them that their specialist has confidence in their future.

And, I think that’s a really, really important part of it. So, what’s happened is, we have early and prompt referral, we have helpful haematologists and oncologists. Everyone understands now that it’s negligent to not even have the discussion. It doesn’t matter if the patient gets referred to us or not, but that you have the discussion. My colleague, [clinician name], has created a national database – actually, it’s an international database – so we can start getting more data on the whole concept of the need for fertility preservation discussion for patients at risk.

I think for the non-cancer patients, what’s changed is that patients are now referred early. I think there’s greater knowledge in the primary care setting. It used to be someone – the doctor would say, “Oh, you just go on the pill and don’t worry about it,” whereas now, in that – I think there’s absolute greater awareness by GPs, of investigating symptoms of early ovarian insufficiency.

I think we’ve got much more awareness, much more proactive approach. I think what’s lacking is our science; we don’t know, still, what causes so much of this. Therefore, we don’t have – I’m sure that in five to ten years, we’ll have new strategies for reawakening ovarian activity in these women.

I’m not talking about 50-year-old women, but I’m talking about young ones. So, what we need is more research and more clinically applicable research to try and regenerate activity. That’s what was really lacking.

In the management of POI, I think the important things have been the diagnostic process and the understanding that there are a number of issues that have caused POI which we didn’t previously understand. A greater understanding on the part of people in other medical specialties that the treatments that they use to save lives from the threat of cancer can be harmful to the ovary and an acknowledgement that they need to collaborate with those of us who have an interest in that area.

Lastly, I think a better understanding of HRT. When we talk about the Women’s Health Initiative, it sounds as though we were always right, and they were always wrong. Probably we were giving too many hormones to too many people, and a reflection on what’s happened in the last decade or so has taught us that the dose of hormone that you give each woman is different and the duration for which you continue that therapy is different as well, and the way you might deliver it is different.

The way you should make those decisions in consultation with her. You do not say “Here, take this.” You say, “I think this would be a good idea, what do you think about that? Are you worried about any of this, would you rather have it as a patch or as a cream or as a tablet, do you want to take it so you have periods or not” – all those things, involve the young woman in the consultation.

So it’s really about a shared decision-making process?

Absolutely it’s 100 per cent shared decision-making process. It should be and often is shared by a number of different health professionals. But it has to be shared by the woman herself. And I think, if she’s involved, then her long-term health will benefit from that too.

There’s some excellent treatments now that we didn’t use to have. But before, there was a big women’s health study called the WHI in the US, and that was reported in 2002, and the whole area of hormone therapy for women around menopause, sort of turned it around totally. It said, there were risks associated with hormone therapy. It made us really think from then till now what’s hormone therapy about, why are the reasons we give it, how long do we give it, and who do we give it to. So it was sort of a good thing in terms of pushing us in the right direction.

So there were some really good treatments available too around that time and before that time which were deleted or removed, because I think companies were worried about the risks of hormone therapy and breast cancer, and a number of treatments were available on the PBS, so they’d be cheaper for women, and they were removed from the PBS. So in a way it would be nice to have the old treatments we had, to have them on the PBS, and the new treatments that we do have now.

Because now we have some body-identical hormone therapy which we didn’t have before, which is exactly identical to the body’s oestrogen and identical to the body’s progesterone, and there’s some evidence to suggest that might be better for the body or safer. We didn’t have that before, so that’s been, in Australia at least in the last couple of years we’ve had that.

How does that work? Like how do they make it?

It’s synthesised, but it’s identical to the body’s progesterone, and the oestrogen, which is in a large number of products – there’s a patch, there’s a gel, there’s a cream – that is also identical to the body’s oestrogen. But not all hormone therapy products have these in it, and even though the oestrogen can be got on the PBS fairly cheaply, that body-identical progesterone is not. Therefore you have to have two products which already makes it more complicated, and it makes them more pricey. So it’s very difficult, and especially when the products aren’t available. [Laughs]

I think that probably the thing that’s improved the most is the idea of screening and treating early the long term side effects, bone health. Most oncologists now are bone doctors as well as medical oncologists [smiles] because we cause so much bone loss in people that have cancer. Similarly with cardiovascular disease we increase those risks. 20 years ago, wasn’t really done that much, there may not have been a lot of modifying drugs that can modify osteoporosis for example, as there are now. So I think the longer term problems, we’ve improved significantly.

The short term issues still remain a significant problem and like I say there’s no magic thing you can give them that improves it. It’s a lot of work and looking at different areas to try to minimise their discomfort.

The things that have changed is that it seems there are more women, younger women with breast cancer. But I don’t know if that’s a fact or I’m just seeing them more. They’re being picked up early enough to be treated well and they’re surviving a longer time. I think that’s probably what’s happened. In fact, breast cancer treatment has got a lot better. So, we’ve got a lot of survivors, long term who have got ongoing issues. I think that’s probably the biggest change.

And I think the other thing is that some of the other conditions that people have used to only ever be managed in a very large tertiary unit and that’s been decentralised a bit which I think is a good thing. It’s good to have central tertiary places for the initial diagnosis and the sharing information about a particularly interestingly tricky condition. But then, particularly for rural women, they don’t want to go up to [city name] for every visit just to be said hello to and, “Have you had your eye check, yes or no? Good.” Oh that was six hours’ worth of travelling.

I have a few people who say, “I’m not going back to the clinic because if I turn up, it’s a different person every time. I don’t really want to have to bother.” Telemedicine is another thing that’s happened, I suppose. Those people can sometimes have telemedicine. But usually all it needs is an email or a phone call really for most of it.

I think the thing is and it will come pretty soon, I hope, is new SERMs so that selective oestrogen receptor modulators, that’s tamoxifen family. There are some new ones that we haven’t got in Australia yet, that may be good for the vaginal oestrogen symptoms that won’t promote breast cancer. So it’s just clever people in labs working away doing the thing that they do, hopefully, will come up with the better SERM. The trouble is SERMs also have risks of things like clots and stuff. They’ve got to work on the one that doesn’t cause the clotting, does cause the good effects of cutting down the hot flashes and the vaginal symptoms and treats your breast cancer all at the same time. So that’s the perfect package. I don’t think we’re that far away from it to be honest, so that will be just marvellous, wonderful, solve all of our problems at once. [laughing]

Keywords: medically-induced early menopause, cancer treatment, organisation of care, selective oestrogen receptor modulators