Among the women we spoke to who could not take HRT for EM, a few were taking non-hormone based medications to try to reduce menopausal symptoms, others had tried these medications then stopped taking them, and a few had not tried them at all.
Non-hormone based pharmacological therapies: What women knew
Women who had experienced hormone sensitive cancer were aware that they could not take oestrogen-based forms of HRT. As Maree, who had experienced hormone sensitive breast cancer and carried the BRCA 1 gene mutation, explained: ‘I can’t take HRT or anything of that nature. I need to prohibit oestrogen production.’
Most women said their health practitioners (GPs, oncologists, surgeons, or endocrinologists at menopause clinics) had informed them about the need to avoid oestrogen and therefore HRT, and advised them about other medications they might try.
Kate described her experience at a menopause clinic where she was told about different ‘ideas’ about managing EM after cancer, including different medications.
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There is help out there and, once I did get to that menopause clinic, the specialist there was amazing and she cared and she tried everything that she could to try and help me. Unfortunately I think, because of my case of having cancer, it’s probably a little bit harder to find something that helps, and especially when it’s hormone positive, taking away all those hormone-based medications is a little more difficult. But I think there is a lot of help out there. You’ve just got to try and work out where – how to find it and get a specialist who cares about you and how you’re feeling and really asks those questions.
They know what they’re talking about and they have a lot of ideas that they can try and help you with. Types of medication and diet and exercise and what to wear. There is a lot more information out there and I guess I probably wasn’t even expecting it when I saw my oncologist and I asked about help with the menopause side of it. But it’s quite surprising obviously how specialist they are and how much they do know and the information that they can give you and you hear a lot of things that you probably hadn’t even thought about before and it all makes sense after that.
However, not all women received information about alternative medications for symptoms of medically-induced EM. Alex, who had experienced ovarian cancer, said: ‘I can’t take HRT, so after we sort of discussed that, they mainly just focused on what I can do, which is exercise.’
Eden, who was having hormone (adjuvant endocrine) therapy to reduce the risk of her hormone sensitive breast cancer recurring, did not remember receiving advice about other medications for alleviating menopausal symptoms.
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I go to my doctor every month to get the jabs, ZOLADEX [goserelin], just an injection and the prescriptions. And I mean a GP doesn’t – there’s nothing more he can do unless I ask for extra – I get concerned about something, but he’s fab.
So, you said that ZOLADEX [goserelin] gives you hot flushes. Was there any kind of discussion around what you could take to alleviate that at all or what you could do – with your health professional?
I don’t remember that. I think by the time I was taken off tamoxifen and put on it, I remember thinking, “I hate needles, this is going to be painful”, and they said, “This is going to like bring on menopause.” Unlike tamoxifen which is just going to sort of cap some bits and pieces, this is going to stop hormone release and all the rest. And I think I was so reticent about the whole thing that they spent their efforts saying, “This is important. This is about saving your life.”
Like, the endocrinologist said, “I will not be your endocrinologist doctor in this pool if you don’t go with my advice.” [laughing] I said, “Well I am going to.” So I did and that was it. But no, I don’t remember anyone suggesting anything but that. I think to some extent, that’s also the difference of like doctors and – what do you call it? Community practice nurses or other people. The things about lived experience, other things that you’re going to get from a smaller centre of maybe a GP, the endocrinologist writes you a prescription because you fit the profile and he or she, they know your need. And so, he did what he needed to do for me and I followed that through, but it doesn’t surprise me that he would not have thought to talk through how to manage the symptoms that it brings up. I think to some extent, I probably also thought it was a fait accompli because women who have this – who go through menopause biologically, they can take Hormone Replacement Therapy. If you’re trying to suppress your hormones, I don’t think that’s an option.
Taking non-hormone therapies for EM: Women’s experiences
The main non-hormone pharmacological therapies that women mentioned taking for menopausal symptoms included antidepressant medication and gabapentin. A couple of women mentioned taking medications that they could not recall the name of, and Jacqueline said she had taken sleeping pills ‘at one stage, just to try and get a decent night’s sleep every week or so’. Reasons for taking these medications included to help reduce hot flushes, nerve pain, joint aches, and low mood (see Experiences of symptoms of early menopause – Part 1 and Women’s experiences of symptoms of early menopause – Part 2).
Some women found non-hormone-based medications helpful for hot flushes.
Maree found gabapentin reduced her hot flushes, particularly at night.
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I was referred to the menopause clinic after I had my oophorectomy. My first appointment was recently actually and I think next month is my next appointment. And so during my first appointment, they took me through a lot of information. Pretty much everything from the symptoms you can experience and how you can alleviate some of the symptoms, medication. At the moment I’m also taking gabapentin, which is supposed to help with strong pain. I think it’s for nerve pain though.
I haven’t felt that it’s helped me in that sense because mine’s muscular [laughing]. But it also stops the hot flushes during the night. We’re kind of just trying to get the right combination of medication at the moment in that respect. Because there are other medications that can help to stop the hot flushes which means I can actually sleep through the night instead of getting woken up by these hot flushes regularly [laughing]. And the gabapentin has worked brilliantly for that. It has actually stopped the more serious ones so that helps you sleep the night through – and when you get enough sleep that helps everything else. [laughing]
Nancy found antidepressants helpful for hot flushes, and recounted her oncologist telling her they could also help with ‘depression’ following cancer.
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When I am eating [taking] the EFEXOR [venlafaxine], [my] hot flushes stop, I can sleep. Before I just can’t sleep at night, always wake up suddenly warm, suddenly cold, it’s very uncomfortable. Then oncologist tell me, “You should eat some medicine.” “Okay”, I say “Okay, I eat,” I already eat a lot of years, I think now . [laughing]
So that’s an anti-depressant – EFEXOR [venlafaxine] – is that right?
Yes.
So that was quite helpful for your hot flushes?
Yes and my GP also said, he gave me the advice, if I can keep eating it’s good for me because for the cancer person [patient] sometimes always feel depression. So he said, “Oh, you should eat. If I am you, I will eating, keep eating”.
Women who were taking antidepressants were doing so for different reasons. Some said they took them for physical symptoms of EM such as nerve pain, joint aches or hot flushes, while others took them for mood, particularly in relation to cancer. Yen-Yi had begun taking a SNRI antidepressant after ‘hitting rock bottom’ emotionally during hormone therapy for breast cancer (see Women’s experiences of symptoms of early menopause – Part 1, Women’s experiences of symptoms of early menopause – Part 2 and Psychological therapies for early menopause). When asked if she felt the medication had helped her hot flushes, she said: ‘I think for me it was just around my mood. I didn’t – to be honest I wonder what other menopausal symptoms could it help with.’
A few women noted antidepressants could have multiple benefits, for both physical symptoms of EM and mood.
Fiona described how her reasons for taking antidepressants changed over time.
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For me the menopausal symptoms aren’t that critical now, they’re just what I live with. And I look at the positive side, as in, “I woke up this morning”. But going through it at the time, emotionally it was hard as well, because don’t forget oestrogen also helps control your emotions. Now they’d put me on the maximum anti-depressants when I was diagnosed with the stage 3C and I did actually try going off them last year, but they found [laughing] it turns out that they’re actually really good for peripheral neuropathy, which is where my feet are burning and things like that. So I suspect that that’s actually helped me cope going through the early menopause.
For some women, non-hormone based medications for EM were not effective, caused side-effects, or interacted negatively with other medications, prompting them to stop taking them.
Sylvia, who was not able to take HRT following uterine cancer, described her experience taking an antidepressant medication for EM symptoms.
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So have you been told that you can’t have HRT?
They have said that it’s best that I don’t.
Yeah, so obviously that’s the main treatment for menopause… it’s very difficult because you can’t take…
Yeah. And I tried some, they gave me some medication just to see if that would help. It was more a mood sort of, and I’ve taken myself off it. I tried it for two years and… I’ve just taken myself off it.
At first it was great because I didn’t feel anything. [laughing] I just thought, “Hey, this is cool. There’s no emotions at all. This is great.” But I also have other medical issues and – a doctor prescribed me some different medication and when I was taking the medication for the menopause as well as the new medication for the other issues, the two of them together meant that I just stopped eating entirely.
So did that help with the hot flushes at all?
No, it just helped me not feel for a while.
Natalie, who experienced EM following a hysterectomy for endometriosis, could not tolerate HRT or non-hormonal medications for EM.
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I think the gynaecologist put me on the first lot of non-HRT tablets, but I said to him, “Do I need to keep coming back to you for prescriptions and things like that?” and he said, “No. Only if you feel the need or if you’ve got other complications coming up,” because of course, gynaecologists, being specialists, cost a bit. GPs are bulk billed [laughing].
So I just went back to my GP and we just tried different ones, and because he’d try me on one and it’d seem to work for a little while, and I don’t know if it was just a placebo effect and I was hoping it was, and then it seemed to be that all the hot flushes and everything were just coming back just as much as when I wasn’t on it. So then he’d try me on another one, and the last one he had me on was apparently the last one he said he could try. It was the last one that was recommended, so it didn’t seem to be doing anything anymore, so I stopped taking that one as well. The last one that I was on, because there was only the three, the last one I was on was gabapentin.
The doctor started me on two tablets a day for a while, for a few weeks, and then he said, then increase it to three tablets a day, but one of the problems – I went onto the three tablets a day, which seemed to help a little bit. But it brought on diarrhoea, and so I had to actually go back to only two tablets a day, which I don’t know if it was because of the fact that I was on the lower dosage, not as high a dosage as was recommended, or if it was just the fact that it stopped working for me. But it just didn’t seem to work as effectively. But I wasn’t ready to risk having diarrhoea every day [laughing] just to get rid of the hot flushes. I’ll put up with the hot flushes more than the other one, definitely.
However, some women described trying several different medications in the hope of finding one that would work for them.
Kate had mixed experiences with non-hormone based medications for EM, but her desire for a ‘normal life’ meant she was determined to keep looking for a medication that worked.
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I’m on ZOLADEX [goserelin], which is a monthly injection, which is like a pellet… it shuts down my ovaries so that they’re not working at all, so that’s one of the reasons why obviously you go into early menopause. So I’m on this plan, is five to ten years. I’m almost three years into that. And I’m on the aromatase inhibitor, which is exemestane, so I have a tablet every day which just helps shut that down as well, it’s one of the newer drugs. I think most people go on Tamoxifen but they’ve tried me on this exemestane coupled with the ZOLADEX [goserelin] has a better rate of non-occurrence for breast cancer. And, with that I try EFEXOR [venlafaxine], which is an antidepressant, which has definitely helped with my joint aches and they hoped that it would help with the hot flushes but that’s just one of those things it just hasn’t seemed to calm down at all.
So it’s really about addressing both cancer and early menopause at the same time with medication.
Yeah. Because there’s a lot of things that can affect how the other one works. Or, it won’t work as good or you can get a higher dose of something else in your system which sends you a little bit crazy, so it’s definitely about balancing that for sure.
How do you feel about that? It’s a lot of medication and a lot of different things?
It is a lot of medication. It’s a lot of juggling but I know that I need to have it. I know that it shows better outcomes. For someone so young when you have aggressive breast cancer and, I’m happy to try whatever I can, whether it worked for me or not, but like for here to try and help other people who might be going through it as well. I’ve tried gabapentin – which was prescribed to me through the menopause clinic – it’s had good results with the hot flushes as well but unfortunately it didn’t help for me. It’s a bit more of a natural dose as opposed to the EFEXOR [venlafaxine], and now I’m lowering my dose of EFEXOR [venlafaxine] to try this new medication as well, which is like an antidepressant but it’s a lower dose. It’s just shown great results with early menopause and also if you have breast cancer as well. So yeah, it is a lot but I just want to do what I can to try and get back to normal life and that’s something that I haven’t had for a long time now.
Further information:
Talking Points (Women)
Talking Points (Health Practitioners)
Other resources
