Endocrine (hormone) therapy

Hormones are substances that occur naturally in the body and control the growth and activity of normal cells. The female hormones, oestrogen and progesterone, can also affect the growth of breast cancer cells that are determined to be hormone receptor-positive. Hormone therapy or endocrine therapy for breast cancer consists of treatments designed to prevent the action of female hormones on these breast cancer cells. These treatments include drugs in pill form as well as injections such as tamoxifen, aromatase inhibitors and goserilin (Zoladex). Tamoxifen is the one most commonly used. It works by preventing oestrogen from latching onto breast cancer cells and encouraging them to grow. Not all cases of breast cancer respond to hormone treatment so tests are carried out to decide whether it should be used or not. Tamoxifen is taken as a daily tablet and usually causes a few side-effects as described below.

The women we interviewed who were on hormone therapy had been advised that this would continue for at least 5, and possibly 10, years.  For some women this was no problem as they hardly experienced any side-effects. Aliza called it her ‘magic pill’ as she was grateful that this treatment was sufficient for her kind of cancer.

Endocrine (hormone) therapy

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Again very manageable, sort of like temperature changes, but very manageable. So I wouldn’t fear the tamoxifen, as drugs go, it’s a tried and true, it’s cheap and it seems to do the job. It is a drug that has definitively been shown to stop cancer occurrence and we don’t have very many of those on the market.  It’s a goody. You know, I’ve never taken a pill every day in my life so that kind of bugged me. I find that intrusive but I have to get off that.

Interviewer: For how long are you going to take the hormones?

The protocol now is 5 years but there’s been evidence that 10 years as well may be the way to go, so I think you start on the 5 and then you see how you’re doing. It is effective for sure for hormone sensitive tumours, so you do it, you do it for sure. And the side-effects for most people, I think, are quite, quite minimal and for me, really, they’re almost non-significant.

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Endocrine (hormone) therapy

I’m taking tamoxifen. Actually a lot of people stop taking tamoxifen because of the side-effects. And this, I don’t understand, because everyone’s perfectly happy to do chemo, like they’re told do chemo and they say, “Okay, I’ll do chemo,” and they’re sick like dogs for 6 months but they’ll do that but then people take tamoxifen, they get a few side-effects, and they stop taking it.

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When Margaret heard that more and more women were taking hormone therapy for 10 years instead of 5, she went back to her oncologist to request an additional 5 years of tamoxifen; the fact that he agreed has given her a positive and relieved feeling. She says that this experience has added a little more confidence in the system and in her own personal medical care.
 
Other women described experiencing one or more common side-effects including joint or other pain, fatigue, hot flashes, going into menopause, headaches, and other ageing-related problems, such as changes in skin features as an effect of the reduced hormone levels in the body. Other more rare side-effects were also mentioned including bruising, depression, anxiety, appetite changes, and dry eyes. Weight gain is a common side-effect as well and up to 20 pounds is normal.

Endocrine (hormone) therapy

I’m carrying a lot of extra weight and I was blaming that on the drugs. My doctor, who did my mastectomy, mentioned that I had gained so much weight that my port had moved so he had to make a second incision, and I said “Yeah, they said the tamoxifen puts some weight on you,” and he said, “Well Joanne, probably 10 to15 pounds but not this much and I said, “You know, you got to watch what you’re doing.” And he is really blunt and honest with me and I knew that. So I think I got in a place where I was blaming the drugs and the chemo and the treatment and comfort eating or changing my lifestyle because I didn’t care for a while, nobody really pointed that out. So it took a surgeon to really smack me in the face with it. So then I started getting in shape again. Trying to get in shape and eat healthier. You know, I read all the books that help to prevent cancer and just tried to go back to what I needed to do to get healthy. And then I realized that I had to change my lifestyle. Treatment is over, cancer is over and you can go back to work and act as if nothing ever happened.

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Endocrine (hormone) therapy

Five years of Letrozole, which is challenging. It’s giving me hot flashes and they say there’s joint and muscle pain as a possible side-effect but if I phone about it and say that I’m having joint and muscle pain, then they tell me I’ve probably got arthritis; possible osteoporosis and high cholesterol are all possible outcomes.

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Endocrine (hormone) therapy

You know, I’m not depressed. I don’t feel depressed but it’s interesting that when I first started feeling that there probably was something going wrong I’d be sitting and I’d all of a sudden just start to weep. Not just crying, but weeping and I thought this is just odd and feeling a bit, what you’d call, down.

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In rare cases, hormone therapy will do no harm, but may not be the best therapy. For one of our interviewees, her care team suspected that she became or was resistant to tamoxifen and that is why her cancer came back. You can read more about this in Recurrent and metastatic (advanced) breast cancer.
 
Despite the side-effects, most women wished to continue taking the medication to reduce their chance of recurrence. However some women suffered from the side-effects so much that they started looking for other options. Both Tina and Julia decided to stop taking the hormones because of the severity of the side-effects. Tina was feeling very unwell and Julia tried the therapy twice but experienced extreme fatigue and anxiety.

Endocrine (hormone) therapy

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So I felt so much better once I got off tamoxifen and I went through the summer and then I went back to see her.  At the beginning I was going every 4 months and then she said, “Okay, well now do you want to try it again?” And I said, “Well not really ” and she said, “Well that’s your choice, it’s your choice but if you don’t go back on it, I won’t be your doctor anymore.” So then I’m like, “Oh okay.” I was a little bit upset about that and then I went to speak to my naturopath and he said, “Well first of all, she’s not allowed to do that. That’s been tried in times past and apparently that’s been to the Supreme Court, and it’s illegal to fire a patient for making a choice that you offer them. I don’t know if this is true or not but this is what I was told. Anyway I was pretty comfortable with my decision and I was like, “Well I don’t really need her, she doesn’t do anything anyway and she said," If you ever have a problem I’ll see you right away. You have a family doctor, you have a surgeon, if you need me it’s not like I won’t help you but if you’re not going to comply,” she said, “I have liability insurance issues I can’t be your doctor.” So I said, “Okay that’s fine,” and then we agreed, I think, that I’d see her again and in the meantime I did some reading and then I thought, “Well you know what maybe I will try tamoxifen one more time.” So I tried it again and  I committed to myself that I would do it for 3 months and she was pretty happy that I would try that and then it went really badly again but it wasn’t fatigue so much as I got this terrible anxiety. Again, I had the other things like I lost my appetite and I lost weight and I had dry eyes  and a few other things I can’t even remember but I had this terrible anxiety and I just I didn’t want to live that way. And so I stopped after 3 months and immediately again I felt way better without it, so now that’s not something I will consider, but then she did offer to remove my ovaries for me so I could take something different.  I said,” Well I would consider that, but maybe we could try chemical suppression and try this new drug,  because if tamoxifen made me feel terrible, and I can’t live like that, if you take out my ovaries and it does the same thing there’s no way to fix it so I don’t really want you ripping out my ovaries.” So she again didn’t really like that and I think you can tell I’m not so keen on my oncologist.

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Endocrine (hormone) therapy

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So they decided they wouldn’t give it to me the second time so they put me on that Arimidex for 6 years and there’s no studies on that either. It’s usually  five, and I was on it for six and some doctor came down from (city in Alberta) at the Cancer Clinic and talked to me and he said, “ What treatment?” and he says, “No stop.” He says, “Stop, Yeah don’t take it anymore.” “So okay good for me,” I said because did have a lot of side-effects, you know, diarrhea isn’t pleasant and vomiting and the shakes and the headaches and all sorts of stuff.

Interviewer: How did you manage to continue if you had so many bad side-effects?

I’m very stubborn and you know I thought well, if this is going to stop the cancer from coming back I’ll go through it I just got on with it. It was mainly in the morning when I took it but I was in pain and distress for 6 years. It’s a way of life. You can get used to anything and maybe I was too dumb to go and say I can’t take this anymore but no I just put up with it.

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When Tina and Julia decided to stop, the oncologist told them that he/she was unable to continue with follow-up care as they were not adhering to the recommended treatment. Tina is now followed-up by her surgeon and Julia is now seeing a naturopath.
 
Christa stopped taking her tamoxifen after 2.5 years when she was hoping to get pregnant again and she had also been experiencing severe joint pain.
 
Several women described changing their hormone therapy in an attempt to reduce the side-effects.

Endocrine (hormone) therapy

I got joint pain from the drugs I am on. I am still on Aromasin, but I was on tamoxifen for the first couple of years and then something, my cancer is estrogen receptor positive so I am more receptive to all the female cancers of course. So something showed up on a pap smear, I don’t know a year out, a year and a half out, no I don’t know. Something showed up on a pap smear a while after treatment and they had to do an exploratory because there was something suspicious and so they explained to me at that time that, “Because your estrogen receptor positive, anytime something looks suspicious we probably have to do this exploratory surgery because you’re at a high risk for the other cancer,” and I was like, “Well why are we leaving it there? I am not going to use it again so let’s just take out everything that has anything to do with estrogens.” I had a full hysterectomy done which was another surgery and then they switched me to Aromasin so I am still on Aromasin and my body has been better on the Aromasin than it was on tamoxifen and they say you should stay on the treatment drugs for 3 to 5 years. January was four years since I have been on tamoxifen or Aromasin. So I said that is four years, this January, and I was going to go off, I was still blaming the fact that I was taking these drugs for all these body changes that were going on. I had my gynecologist tell me, “No Joanne some of these effects will still be there. It is not the Aromasin and not the tamoxifen.” So I really wanted to go off just to see. Anyway I had my friends telling me to stay on it for the fifth year because most research says 3 to 5 years don’t make much difference. It is three or five years for whatever reason so I stayed on it, because as they said, “What happens if your cancer comes back in two or three years? Would you be wondering if you stayed on the drug for one more year would it not have come back?” Then I talked to a woman who actually asked to go on it for an extra five years and she is a woman I respect a whole lot and I said, “Really you want to be on it another five years?” But she is having no effects and I’m still blaming the joint pain on the Aromasin. I mean I do get joint pain, a lot of joint pain. So I’m still on them and I am going to be on them for another year yet.

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May-Lie started having episodes of bleeding and when the cause could not be found, she requested a hysterectomy. Because of the hysterectomy, she could be treated with a different kind of hormone therapy. She is now experiencing a lot less bone pain and the bleeding has stopped. You can read more about this in the topic page surgery. Aliza changed her medication three times as she was experiencing bad headaches and is now doing well with a new medication.

Review date
2019-09

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