Episode 38: Hormone Blocking Therapy – Balancing Quality of Life and Risk of Recurrence
We recommend that listeners exercise self-care when listening to this podcast, as some may find the content upsetting.
Let’s be upfront about the side effects of hormone-blocking therapies for the treatment of hormone receptor positive breast cancer.
About 70% of breast cancers are hormone receptor positive, meaning that the breast cancer cells use these hormones to grow.
Hormone-blocking therapy is usually prescribed as part of the treatment as works by lowering the amount of oestrogen in the body or blocking the oestrogen receptors on the cancer cells, depriving them of the hormones they need to grow, with the aim of reducing the risk of breast cancer coming back, or new breast cancer developing.
In this episode we’re joined by Debbie Packham who was diagnosed with early breast cancer in 2016 and 4 weeks later was diagnosed with oligometastatic breast cancer and has been on hormone-blocking therapy for 4 years, Ro Woods who was diagnosed with breast cancer in 2020 and has been on hormone-blocking therapy for 5 months and Lisa Sheeran who has worked with breast cancer patients for over 21 years and has been a breast care nurse for 9 years.
We’ll hear about the different types of hormone-blocking therapies, the common side effects and impacts on quality of life, the key benefits, effective strategies and the support available to help you manage your treatment.
This podcast was recorded in November 2021.
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Upfront About Breast Cancer is a production of Breast Cancer Network Australia. Our theme music is by the late Tara Simmons, and this episode is proudly brought to you by Dry July.
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Kellie Curtain [00:00:37] Let's be upfront about the side effects of hormone blocking therapies. About 70% of breast cancers are hormone receptor positive, which means that the breast cancer cells use these hormones to grow. Hormone blocking therapy is usually prescribed as part of treatment, with the aim of reducing the risk of the breast cancer coming back, a new breast cancer developing or effectively control disease in people affected by metastatic breast cancer. Joining us to discuss the many aspects of hormone blocking therapy is Debbie Packham, who has metastatic breast cancer and has been on hormone blocking medication for four years. Also with us is Ro Woods, who was diagnosed with early breast cancer in October 2020 and has been on hormone blocking therapy for five months. Also joining the conversation is breast cancer nurse Lisa Sheeran, who has worked with breast cancer patients for more than two decades. A reminder that this episode of Upfronts About Breast Cancer is unscripted. The topics discussed are not intended to replace medical advice, nor necessarily represent the full spectrum of experience or clinical option. So please exercise self-care when listening to this podcast, as the content may be triggering or upsetting for some. Welcome to you all! So, Lisa, maybe we could start with you. What is hormone blocking therapy?
Lisa Sheeran [00:02:05] So as you said in your introduction, Kelly, we know that over 70% of breast cancers grow with female hormones. We also know that breast cancer is more common in post-menopausal women, and a lot of people find that very strange because they’ve gone through menopause and they wonder how is a tumour growing because of oestrogen and progesterone? We know that our body fat stores oestrogen, so even though we go through menopause, we still have oestrogen in our body. So that enables when a cell mutates, that a cancer can grow. The best cancer treatment we know to try and prevent a recurrence of breast cancers is to actually give an anti hormone treatment. So we're trying to block any growth of further tumour cells. By this, the oestrogen that we store in our body or by oestrogen that's produced in our ovaries when we are premenopausal. So we have two sort of mainstays of anti hormone treatment. And the first was the gold standard treatment tamoxifen, which is what we prescribed to all women. And in more recent years, we've been using what we term as aromatase inhibitors. So letrozole and Arimidex are the more common types of aromatase inhibitors that are prescribed. And there's also been lots of research done in this setting and in particular some clinical trials, the SOFT and the TEXT studies that have been done that look at using these type of agents in both the premenopausal and postmenopausal setting. So it's important to know that these drugs, these aromatase inhibitors are used to treat all women with hormone receptor positive breast cancer.
Kellie Curtain [00:03:36] Okay. It's a big topic, isn't it?
Lisa Sheeran [00:03:38] It's rather huge, and I think sometimes we this can be a flippancy that, oh, you've got an early breast cancer that’s receptor positive, will take the tumour out, will give you a tablet and you'll be fine. And that's generally not the case
Kellie Curtain [00:03:51] because quite often we don't associate the old tablet with sometimes turning your world upside down, which for so many women, this therapy can really change life for them.
Lisa Sheeran [00:04:05] Yes, it certainly can. And every woman's experience is different.
Kellie Curtain [00:04:09] Ro, you were diagnosed with early breast cancer. Tell us your experience with hormone blocking therapy, given that it's only been a few months.
Ro Woods [00:04:19] My oncologist put me on letrozole, and I found treatment very difficult, so I thought hormone blockers would be fairly easy and straightforward. But letrozole wasn't for me. I was on it for about three and a half months. The first three weeks I thought, oh well, this seems to be okay. I'm not having any side effects. But after that period of time, I started to get bone and joint pain, fatigue, brain fog. That was in addition to the chemotherapy fog I had. The hot flushes were pretty severe and I would wake up three or four times each night. So it became quite debilitating for me, and I also suffered quite a bit of depression with it. So it wasn't easy. My oncologist gave me a break for a month because I spoke to him and the team and said, it's debilitating for me. I had arthritis, and the joint pain and bone pain, especially at night, was very difficult to deal with, even with painkillers. So, I had a month break and now I'm on exemestane.
Lisa Sheeran [00:05:47] Exemestane.
Ro Woods [00:05:49] Yes. And I've been on that since the 4th of November, about three and a half weeks, nearly a month. And it seems to be OK. It's better for me.
Kellie Curtain [00:06:00] Lisa, is that quite common?
Lisa Sheeran [00:06:02] It is very common. And the degrees of side effects that people experience can be varying. We know that some people can have very, very debilitating symptoms and some can have side effects that are manageable if we tweak things a little bit. And we commonly see, particularly with the aromatase inhibitors, and thank you for reminding me that exemestane is another one of those of the three main drugs in the same group of drugs. We would regularly do a drug holiday just to see if side effects improve significantly in that time frame. And then it might be rechallenging with the same tablet or it might be switching to another one, as was the case for Ro.
Kellie Curtain [00:06:44] You mentioned the word tweaking. It's very much an individual experience. And how much tweaking can you do?
Lisa Sheeran [00:06:50] Well, there is. So there's three different types of aromatase inhibitors and then there's tamoxifen. So sometimes it might be. Often we would only tweak between two of the aromatase inhibitors. And if symptoms and side effects were still quite debilitating, then we would think about tamoxifen. There's always that discussion about the risk of recurrence versus quality of life, and that's something that should definitely be a conversation that you're having with your oncologist on a regular basis if you are experiencing debilitating side effects.
Kellie Curtain [00:07:21] Debbie, tell us about your experience, post your diagnosis.
Debbie Packham [00:07:26] Well, so I was put on letrozole as well. And for me, obviously the side effects, whilst I do have many of those ones that Ro was talking about, obviously, and not enough for me to feel debilitated by them. So again, I get the odd hot, hot flush. But you know, I wake up, put my arms and legs out of the blankets, cool off, tuck myself in, go back to sleep. I find that if I'm sitting for a long time, I get up and I feel like I'm an 85 year old woman. But it takes me, you know, a few, 20 odd steps and I feel like I'm almost normal again. But so I do have those side effects. But obviously I was one of the lucky ones, and so letrozole has been working quite well for me.
Kellie Curtain [00:08:19] Have you been on letrozole throughout the last four years?
Debbie Packham [00:08:22] Yes, the whole time. Having said that, it was interesting. The last conversation I had with the oncologist and the breast care nurse said, Oh, you could take a holiday from it, you know, have a rest. And I said, Actually, I don't think I want to. I don't want to feel like my age when I know what I, you know, look, I feel like I'm a I've got the body of an 85, an 85 year old inside a 60 year old body, and I don't really want to go back to knowing how good I could feel when I'm used to feeling like this.
Kellie Curtain [00:08:59] That's an interesting take.
Debbie Packham [00:09:00] I'm probably not going to want to go back on it. So if it's the different, I mean, if there was a reason for it, then yes, I'd think about it, but I can cope with it at the moment. Though, I don't exercise as much as I should, and I don't do a lot of things like that that I should. And I think that that's partly due to fatigue again, was one of those ones that you mentioned. And I think that I get that as well. You know, I work four and a half days a week, and by the time I get to Saturday, I'm exhausted. So I spend Saturday really resting and you know, my body doesn't want to do anything and I go, OK, I don't have anything to do. I'm happy.
Kellie Curtain [00:09:45] So you've really learnt how to balance that and know what works and know what doesn't.
Debbie Packham [00:09:51] Yes, for me, that's how I deal with it. So yes, and that seems to work.
Ro Woods [00:09:56] Can I just say I think it's such an individual decision because I think a lot depends on your pre-existing health conditions. I have a pre-existing health condition, in addition to dealing with cancer treatment, and that has been a long term health condition and the arthritis, I think played a part in that as well with the letrozole because I had joint and bone pain anyway before I went on it.
Kellie Curtain [00:10:34] Lisa, Ro has spoken about some of the debilitating side effects that she experienced. What are some of the other common side effects that people experience on the various therapies?
Lisa Sheeran [00:10:46] So we certainly know as a general rule or giving hormone blocking agents we are going to generate menopausal symptoms. It's very rare for a woman not to experience some degree of menopausal symptoms. Again, it's an individual thing. Some people can cope. Sticking your feet outside of the bed when you get a hot flush at night time is and if that goes and works, that's great. For some women, it can be a whole lot worse. And we certainly in the era of more HRT being prescribed and then women getting breast cancer and having to come off the HRT, going onto hormone blocking agents their menopausal symptoms were very, very severe. So we, you know, it's a step by step strategy. It's about sort of coming up with, you know, just common ways of trying to reduce menopausal symptoms. So, you know, just layering your clothes, having plenty of water to drink, not drinking too much coffee, reducing the amount of alcohol or not taking any alcohol at all. And it's a lot of women will then try things like acupuncture or some natural remedies. But we're always asking, certainly in our institution, we ask for a list of what kind of natural therapies people would like to take because sometimes they can actually interact with the medications that they are on or they might have some soy products in them that we would advise against taking. So it's always good to discuss with your medical practitioner and your oncologist a bit about any natural therapies that you think you might like to try. Then there's a range of medications for menopausal symptoms. The most common one that's prescribed is venlafaxine, Effexor is the other name for that. It's one of the SSRI’s. Its an antidepressant, and sometimes that actually antidepressant element of the medication is a good thing in women that are experiencing debilitating symptoms, and that sort of results like in a good reduction of hot flushes for a lot of women. Not everybody. There's also a medication called gabapentin. And, you know, in instances where menopausal symptoms are so debilitating, if you're lucky to live in a metropolitan area and you can talk to your oncologist about getting a referral to a menopausal symptoms after cancer clinic, that is great. But I realise we are talking to Australia wide breast cancer population and women living in regional areas that might not have access to that. So talk to your breast care nurse. Everybody should have access to a breast care nurse, be that through their own organisation or through the McGrath Foundation, and because it's important that you actually have avenues to try and manage your side effects. Now, I've only spoken about menopausal symptoms, and I could talk forever. I don't know if you want me to address other side effects that people are experiencing.
Kellie Curtain [00:13:22] Well, have you had other side effects Ro since changing your medication?
Ro Woods [00:13:31] Well, I've had a bit of bone pain, and the fatigue is starting to kick in now. But it's not as bad as letrozole. I agree with Debbie. It makes you feel decrepit. It well, it did for me. I mean, I, you know, if people experience minor symptoms, it's fabulous. But I didn't.
Kellie Curtain [00:13:54] Or even just one symptom or one or two, it sounded like you got the full basket.
Ro Woods [00:13:57] Well, the fatigue is very difficult to deal with on a daily basis. And the problem is, if you go to sleep at night and you wake up and you still feel fatigued, it's very difficult to live a normal sort of life and do the things that you need to be doing. The brain fog with letrozole. As I say, I had chemotherapy at the end of last year and I found the brain fog difficult. So I don't know whether the letrozole added to that added to that brain problem, but I certainly don't have it as much now that I'm off it.
Kellie Curtain [00:14:43] Do you find, Lisa, that there's so much focus on active treatment that when it comes to the long term plan of hormone blockers, I think you touched on it before, there's not as much focus given to it, and it's almost like everyone else moves on. And sometimes, like you were saying, Ro the fatigue builds up and things aren’t great.
Ro Woods [00:15:08] and people expect you to be, you know, okay, because you've had the active treatment and oh, great, great you've achieved that, what you needed to do with that, you've had the chemo, the surgery, the radiation therapy, the big stuff, the big stuff. And off you go, there's your tablets and it, you know, I mean, it's very important to take them. It is really, really important to take something. But we need to be able to live our lives and take them for five to 10 years.
Kellie Curtain [00:15:43] And it is it's a long term plan. Did you try any natural or supplementary remedies to try and help you live the life you want to live?
Ro Woods [00:15:55] Well, I found a great oncology physio and I've had an oncology massage, but I'm a vegetarian. I actually gave up alcohol when I was diagnosed. I wasn't a very big drinker, but I feel a lot healthier for doing that. But I, you know, I have a diet that I that I have changed and I try and eat healthy food and get enough sleep and I exercise every day. So I think I'm trying to do as much as I possibly can.
Kellie Curtain [00:16:37] Hmm. Ro, you're a lot further into the process. How much longer will you need to be on the therapy?
Debbie Packham [00:16:46] Well, I had a conversation with the oncology people, the other a couple of weeks ago, and I asked exactly that question. And I said, well, you've got metastatic cancer. So I guess what, honey? You're on it forever. So, oh, but you can take a break if you want. So I guess I'm in it for the long haul, for however long it is, I'm coming up to, as he said for years. So and I've survived so far, so we'll just see, I guess, how it goes in the long term. And you know what you were saying before about how, you know, when I got diagnosed, I went, Oh, that's okay, I'll set aside 12 months of my life and I'll fix this in 12 months and then I'll have all the world will be back to normal. And I think when I said that to the oncology people, they just went. They nodded their head and perhaps even rolled their eyes, but they didn't actually say. Well, but it'll take longer than that. And so, you know, I guess you deal with those things as you get to them and I suppose going well, 12 months and I'll be OK. Was it a way for me to segment it and deal with it? But. Yeah. You know, I don't I'm not looking at it in for, you know, five or 10 years. I guess I'll be looking at it for as long as I'm around. And hopefully that's more than 10 years.
Kellie Curtain [00:18:13] Lisa, do you think the mental impact on mental health is big for someone taking hormone blocking therapy?
Lisa Sheeran [00:18:23] because of having lots of side effects or just the fact that they have to take medication?
Kellie Curtain [00:18:27] Well, obviously in Debbie's case, she has to get a head around the fact that she's going to be on it for life, for Ro, it really affected her, her quality of life, that juggle of when someone suggests a holiday. Debbie has said, Well, I'm not too bad, so I'm just going to stick with it. Whereas Ro, you couldn't really do anything. So you sometimes you do have to take a holiday, and quite often we hear that, it must play on your mind a little bit mentally about, am I giving the cancer the opportunity to come back?
Lisa Sheeran [00:19:03] And certainly, you know, as Ro alluded to, we know that the this the goal of care is to try to get endocrine therapy happening, hormone blocking therapy happening for five to 10 years, seven years, at least because we know that that's going to have the best impact in trying to prevent a cancer, an early breast cancer recurring. And it's very hard to weigh that up in your mind if you're experiencing bad side effects and having regular conversations is important with your oncologist and with your breast care nurse. And it's certainly within the public system when you have finished your active treatment, like your surgery and your chemotherapy and radiotherapy, you'll start your medication. You might have a three month review with your oncologist in the public system and then it's every 12 months, so you're kind of out there on your own. And it's important that you at least have somebody that you can touch base with if you are struggling. And that's why the breast care nurses come in. And GP's are also extremely good at managing a lot of these side effects that patients experience.
Kellie Curtain [00:20:02] And there's always the BCNA Help Line too.
Lisa Sheeran [00:20:06] Of course! And I think probably BCNA should be at the top of every person's list because it's a nationwide organisation, whereas breast care nurses are very good at knowing what's available within their own states or within their own cities, but BCNA is there for everybody. That's very important.
Kellie Curtain [00:20:57] Ro, how did you go when you had that break?
Ro Woods [00:21:02] Well, I was quite nervous about it. I think anybody would be. But I did feel better very quickly. I started to feel like myself again. I started to have energy and the bone pain the joint pain wasn't as bad. I was sleeping better and it just gave me because the treatment had been since last October, it gave me a chance to just take a breather.
Kellie Curtain [00:21:33] How long was the break for?
Ro Woods [00:21:34] It was for a month. Yeah, but the thing is, I reached out to everybody. I reached out to BCNA and I reached out to the McGrath Foundation. I've got a fantastic GP and I have a therapist that is helping me with the depression, who is fabulous. I've got the oncology physio. The Cancer Council have been great. Their support line's been great. BCNA has been wonderful. I love the podcast, the webcasts, the webinars. It's if you, it's the help is there. You've just got to know where it is and you've just got to, you've got to put your hand up and go for it, really.
Lisa Sheeran [00:22:20] And I just want to touch on what Ro was saying about the joint pain and stiffness, because that is a very, very common side effect for all women who are on aromatase inhibitors. And the degree of that obviously is different from person to person. And you definitely, like the fatigue, obviously on top of that joint pain and you talk about exercising every day. We would from the get-go prescribe exercise as a way of managing joint pain. And it sounds ridiculous, in particular for women who come in with a history of arthritis or really bad bony pain anyway. The evidence clearly tells us that that exercise will actually impact on your bony pain and your fatigue levels, but what kind of exercise you can do obviously, it varies from person to person. One good strategy that you can use is to get access to an exercise physiologist that knows about managing cancer symptoms and side effects. And through your GP, you can get a chronic disease health care management plan, and that will give you access to a Medicare funded, not fully funded, but Medicare funding just to meet with an exercise physiologist who can design an exercise programme for each individual person. And that might be for that woman who has very bad arthritis, some water aerobics or just exercises to do in water. So it's low based activity and less painful for, you know, a regime for it, for an individual person.
Kellie Curtain [00:23:46] That comes under the allied health.
Lisa Sheeran [00:23:48] It does.
Debbie Packham [00:23:49] Can I just had to that, perhaps that. In my head, I'd always been told how good exercise was. So when I finished my active treatment, I tried really hard to find some sort of exercise or some people that can help me with exercise. I've never been to a gym in my life because, you know, I was active. I didn't feel like I needed to. That took me, I reckon, 12 to 18 months to find some sort of exercise people that actually got where I was and what I was doing. And I hunted high and low through exercise physiologists, through the BCNA, and I through all sorts of different organisations to try and find it. And it was really, really difficult. I had to be really disciplined to to want to find it. And then I had sorted stuff out. I live in the country now as opposed to the city when all this was happening. So I'd also found myself an exercise physiologist in the country and was going along well. And then COVID rocked up and you couldn't do your group sessions anymore. And so really, for the last two years, I haven't done anything. So now I need to find it all over again. And it's a very, for me, it's been a terribly frustrating thing to do.
Kellie Curtain [00:25:16] I think COVID has done that a lot for, particularly people not in active treatment, trying to get that momentum back and the support. Where did you, you said you found it difficult finding that sort of support. What about emotional support? Where how have you, have you found kindred spirits in the metastatic group? People understand, do you think?
Debbie Packham [00:25:41] I haven't sought out much mental sort of support, I suppose. Maybe I'm just pigheaded and determined and just do what I want to do. At one stage, actually, I suggested to the public hospital that I was at that it would be really nice to have a group of people that I could talk to, and they turned around and said that I could organise it myself if that was really what I wanted to do, which had some positives, I suppose. But also, I didn't feel particularly helpful. And at that stage, I wasn't up for it either. So I tend mostly to stay away from, you know, cancer support groups and stuff like that and just find the support in my family and within myself and maybe a little bit with some work colleagues and friends.
Kellie Curtain [00:26:36] What about you, Ro? Have you with your severe side effects? Have you been able to find support advice or just someone who gets it in in support groups?
Ro Woods [00:26:49] Well, I'm very fortunate that I have a close friend who's been through breast cancer, and she's five years down the track now. But she put me on to BCNA and it's just, you know, it was just a coincidence that she's had it. She's been through it. So I was fortunate to have her. But you know, it's a balance between wanting to identify, wanting to get your life back and be who you are as a person and also get the support you need with your cancer journey. And you know, nobody really wants to be the person with the C on their forehead. But at the same time, I think it's an individual choice. But the support is there. The McGrath Foundation nurses have been fabulous. My oncology nurse where my oncologist is based is supportive. Cancer Council's been great. It's just a matter. I mean, there are support groups out there. It's just a matter of whether you feel the need to reach out or not.
Kellie Curtain [00:28:21] I think, like you've both pointed out, it's about knowing where to go. There's a lot out there in the space. There's always Dr Google, which is a bit of a rabbit hole. Lisa, do people struggle between knowing what's expected with hormone blocking therapy treatment and so what's normal, so to speak, or whether they're, it's in their head, because the depression issue sometimes might not be foreseen, like if you've got a sore arm, you've got the aches and pains, you can go ouch and try to pinpoint that or link it to a hormone therapy. When it comes to your mental health, sometimes you question whether this is just you, or like you said, Ro, is it the fog from chemo or is it the hormone blocking?
Lisa Sheeran [00:29:14] And look at, you know, every case is different, and individual, and, you know, I think a lot depends on how readily each woman is wanting to reach out and knowing who to reach out to. We, as certainly the medical oncology team, will provide information about the common side effects once you start on endocrine therapy or hormone blocking agents. And like everything like, I certainly I think for most people when they start medication, all that won't happen to me. That won't happen to me. I'll be fine, I'll be fine. And particularly if you've had surgery and radiotherapy and it's, you know, you've got an early breast cancer, treatment is easy. You will be fine and it can be a bit of a shock when you do experience some bad side effects. Knowing who to reach out to and who to talk to is really important. As I said, it's often that you don't have very regular catch ups with your medical oncologist, but you know the reaching out to BCNA, to cancer council, to your breast care nurse, they can link you in with the people that can support you. But all of the public hospitals should have access to psychology teams in particular for a lot of those mental health issues and in particular, that whole idea of if I stopped my medication for a long time, that fear of, for a break and fear recurrence, you know that's very well documented as being quite an issue for a lot of women. And. Some it is such a subjective thing, and people like to just cope and get on with things like themselves, by themselves, like Debbie's doing and and it's not always the case that you should talk to other people or this is the best way of doing it. There's only one way of doing it. And that's your own way. You know, there's no right and there's no wrong. And I think that that's something that I say to all of the patients that I see. You know, this is your cancer journey. And I don't particularly like the word cancer journey, but there's nothing better than that. What we've shown, too, is through survivorship clinics. That's where we can pick up a lot of the issues and the side effects that women are experiencing. We do a lot of referrals out of that because at that point in time, people are being their new normal. They're getting back into their normal, their normal lives or their new normal lives and struggling to do that. So being able to reach out and being confident to reach out and knowing who to speak to is just really important.
Kellie Curtain [00:31:28] How long do you leave it before reaching out? So how long do you suffer with some side effects before you think you should go and speak to someone about addressing it?
Lisa Sheeran [00:31:39] So it's again, it's such an individual thing. o the side effects that women experience are menopausal symptoms intensified, and so joint pain happens to all women going through menopause. So you get out of bed in the morning and you're stiff and sore and then you walk and you're fine. And you might have a slightly stronger version of that and you just get on with it. But if it’s a case that every single thing you do in your day is impacted by the medication that you're taking, if your life is if you're asking yourself every single day, this is really hard, I can't do this. I have to do this. I don't want my cancer to come back. I'm going to put up with this. And then you still asking yourself, How can I do this? You know? You know, that's the time to reach out. And you know, there's there are so many different ways of managing different side effects. And you know, we can even have a drug holiday, a break, just might be sufficient enough just to to revamp yourself, get some exercise happening and rechallenging with the same medication. People can be fine. You know, there’s lots of different ways to manage this, but we can't know if we don't know what we don't know unless you tell us we can't actually support and help.
Kellie Curtain [00:32:51] So Ro had a holiday issue like, how often can you have a holiday with hormone blocking therapy?
Lisa Sheeran [00:32:58] So there are some oncologists that sort of very few, but that when I think of it, like the oral contraceptive pill, and have a little bit of a break every year, it depends really on how people are managing and whether their side effects are, you know, OK, and that getting on with their lives because the benefit is being on that medication every day for five, we say five to 10 years. You know, we're getting emerging evidence now from the clinical trials that were done. This, you know, seven to 10 years is definitely that the gold standard. But everything is a discussion with your oncologist if there's a problem, or reaching out to your breast care nurse to the Breast Cancer Network helpline just to seek advice.
Ro Woods [00:33:40] So can I just say with changing from letrozole to another medication, I was a bit concerned because I thought, well, the oncologist actually thinks that letrozole is the best medication for me and changing that medication. Is this the second best medication for me?
Kellie Curtain [00:34:01] And a case of whether it's no pain, no gain? Should you suffer for the best medical outcome whilst really not being able to live the life that you want? Mm-Hmm. So what was the outcome? Did you ask him that?
Ro Woods [00:34:16] Well, the thing is, I was having such a hard time on it, I thought, you know, it's worth giving something else to go. And I didn't know whether I could go back on to letrozole and whether the side effects would be less. I wasn't quite sure about that. Maybe, Lisa, would, you know?
Lisa Sheeran [00:34:33] But again, it's very individual. We don't know. You know, it's and it's only if we try it. And you know, there's no evidence, really, that Arimidex is a more inferior to letrozole. It’s just more commonly letrozole that’s prescribed first. Just like that. But it's an, it's an oncologist preference, you know? So one oncologist will always prescribe Arimidex first. So, you know, I wouldn't worry too much about it. You're on the correct therapy and you're getting through and managing your side effects, and you just need to reach out if you need more assistance with that.
Kellie Curtain [00:35:03] How do you feel about facing hormone therapy for another seven years, Ro?
Ro Woods [00:35:08] Well, I think it's it's a choice that I've made. I mean, I understand some people choose not to carry on with it, but I just think, that my thinking is if I didn't have the medication and the cancer came back, how would I feel about that? And I would rather just continue on with the medication, deal with side effects and just try and get on with my life. And hopefully I'll get used to what side effects do come up and I'll take it a step at a time.
Kellie Curtain [00:35:50] What about you, Debbie? And you've mentioned not really wanting to upset the apple cart. So, if you've accepted some of the limitations that your hormone therapy places on you, you know that you're going to be on it forever. How do you deal with that?
Debbie Packham [00:36:07] Well, I still don't think I like the idea of being on it forever. And I will in the future some time have more discussions about it. I'm a bit of a scientific sort of person, so when I go to see somebody, I ask a lot of questions. And if I don't like the answers, I'll go away and I'll think about them and I'll ask the questions again in a different way. So that's my way of feeling like I'm in control of my cancer journey, trip, whatever. It's a horrible word. And so, yes, questions and questions and questions. And I will, I think at some stage, be asking questions about how beneficial is it? How much? What's the chances? What's the risks? What's the odds? What's the percentages? But I'm not quite there just yet.
Kellie Curtain [00:37:03] And we should mention that you actually have no evidence of disease at the moment.
Debbie Packham [00:37:08] That's exactly right. Yes.
Kellie Curtain [00:37:11] So something's working.
Debbie Packham [00:37:12] Yes, something is working. But you know, it's really interesting, isn't it? How do we know that it's the hormone therapy that's actually doing it? Or did they get rid of it all before and now It's not here anymore. Or, and they are all the questions that you ask all the time. And as Ro just said, if it did come back and I hadn't been taking it, then how would I feel? But if it does come back and I have been taking it well, then how will I feel about that as well? And there are always those questions that you keep asking yourself and trying to find the balance that works for each person. And that's what it is. It's what feels right for you at the time.
Kellie Curtain [00:38:00] I think you must get that a lot Lisa.
Lisa Sheeran [00:38:02] Absolutely. And that was very well put by Debbie. It really is. It's finding that fine balance, you know, between, you know, what are the risks and those side effects that I'm experiencing versus the benefit. We know from clinical trials that these medications do work. And in your case, Debbie, you know, you've had a really great resolution and that, you know, we certainly don't see that in all cases. And you know, we would be encouraging you to keep going with your medication as long as you can. But you know, maybe with that option of a month off therapy. Again, that's around how your psyche sees all of that because would a month off make you think, Oh, what if it comes back, you know, so we have to, it's an individual balance and it's talking with your health professionals to help you find that balance.
Debbie Packham [00:38:48] And that is another question that I'm going to be asking because I recently had a bone density scan to find that my bone density has gone down. So I was, you know, one of the questions that at the next appointment I have will be if I take a break, we like, give me more energy in order to start up an exercise programme and to get that sort of head start on that, I suppose, where it's not as hard. As difficult to do and as much stiffness as I have. Will that make a difference? So it's a question that I will ask and see what they say, what they say.
Ro Woods [00:39:30] I actually had a bone density test before I started medication, so I would have, be able to gauge, the change in my bones before and after. I, you know, I think that's a good idea if you can have it.
Lisa Sheeran [00:39:49] And that's a standard thing. Before starting any aromatase inhibitors, we would do bone density scans, particularly in the postmenopausal setting and not necessarily in premenopausal women. What we do know is the aromatase inhibitors do impact bone density, and a lot of women will get osteopenia and many will get osteonecrosis. I am sorry, osteoporosis gets the words right. And we will oh, we will monitor that and we can do bone density scans every 12 months to see how that's going. And in the situation of osteoporosis, we can talk about bone strengthening agents, which are very frequently prescribed in this setting. That's also really well managed by GP's because women in the community get osteoporosis as they age and GP's are very good at managing that.
Kellie Curtain [00:40:38] Lisa, you've spoken about the necessity to communicate with your team, GP or whoever the health professional is. Should you ever just stop taking it? Do you have an issue with people who just stop?
Lisa Sheeran [00:40:51] Look, it's preferable that you don't just stop, and we know that it can be a struggle for lots of women to stay on medication. If you're considering stopping, can you please get in touch with one of your health professionals? We can put you in for an appointment to see your oncologist, just at least to have the conversation about can we support you to stay on medication? Is there something that we could advise you to do? We will never force anybody to stay on medication if they don't wish to, but each woman needs to be aware of the potential risks if they don't take their medication.
Kellie Curtain [00:41:20] Thank you to all of you for sharing your skills and your experience today. A podcast on hormone blocking that was brought to you with thanks to Dry July. For more information, BCNA's My Journey has a range of resources on this topic. To sign up, visit myjourney.org.au and don't forget for peer to peer support, head to BCNA's Online Network. You can join via the BCNA website. For more podcasts you can subscribe to ensure you never miss an episode and leave a rating and review. And if you have a few minutes, fill out the survey that you will find in the show notes. This helps us to tailor and create content that's relevant to you. Thanks for joining us on Upfront. I'm Kellie Curtain. See you next time.