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JodieAnne's avatar
JodieAnne
Member
8 years ago

Anastrozole

hi,
live been on Anastrozole since May 2017.  I had hormone receptive BC, chemo, double mastectomy and oopherectomy (also BRACA2 ). I've been having a lot of side effects which I put down to Anastrozole: confusion, weight gain, lethargy, fractured ankle,joint pain and stiffness, as well as bouts of depression. I'm considering speaking to my oncologist about changing to Tamoxifen. I'm just wondering if anyone has had similar issues on Anastrozole and if you changed to Tamoxifen? Any advice would be appreciated. 

72 Replies

  • Hullo JodieAnne and Joannie,  I am currently having radiotherapy and am supposed to start on an Aromatase Inhibitor (AI) when I finish. I have been doing a lot of research on hormonal therapy including Tamoxifen and the Aromatase Inhibitors (AIs).  Tamoxifen is used for pre-menopausal women. AIs are used for post-menopausal women, there are two main types, you can easily find out lots of information on them online. It does seem some post-menopausal women who can't bear the AIs do get changed to Tamoxifen. Both have serious side effects, Tamoxifen is more dangerous in some ways and AIs have been show to be more effective. However I am responding here to your comment about ageing 20 years in 3.5 months. Yes you can, this is exactly what these drugs do.They block off your body's access to oestrogen, the female hormone which makes a woman youthful. Unfortunately it also feeds breast cancer. So the theory is, stop the oestrogen and this will prevent secondaries or recurrences. I found it hard to believe that long postmenopausal women who  have had hysterectomy/oophorectomy years before are still feeding their breast cancers with plenty of oestrogen, but seems it is true. When someone comments that a particular woman seems young for her age, they are noting the effects of circulating oestrogen (and other hormones) which remain higher in some women than in others.This is also why HRT was so popular for a while, until they realised that it was leading to higher rates of breast cancer. Many gynaecologists still prescribe oestrogen creams for vaginal atrophy and repeat bladder infections resulting from weakness in the pelvic organs which also results from loss of natural oestrogen. My uro-gyno tried to put me on a well-known brand of vaginal pessary containing HRT. I didn't take it, just as well because the oestrogen-receptive BC I was developing at the time would probably have gone even crazier. As it was it turned into two linked networked tumours 8 cm in size in no time flat.

    AI drugs take only 2-4 days to reach a strength where they are blocking most of your remaining oestrogen. Then you are exactly like an 80 year old woman. Aches and pains in joints, bone loss (osteoporosis), lethargy, confusion etc result. The oncologists don't explain it in this way because many women would not want to take these drugs if they realised it was a recipe for accelerated old age.  These are not "treatments" in the sense that they lead to a cure. They just stave off the continued growth of tumours, at the cost of turning you into an old crone. It is now being recommended that women take AIs for 10 years. As these are comparatively new drugs there are few proper studies of their long-term consequences. It is likely to be different for women who start them at different ages, for instance. Many older women already have bone loss (the end stage of which is osteoporosis) and these drugs make that worse. The oncologists then tell you to take other drugs to counteract the bone loss, but these can be intensely painful. One side effect is necrosis of the jaw if you have dental work - the bone in your jaw dies.

    Some women apparently can take AIs with much less ill effect than others but I haven't found any studies to say who falls into which group. Some on this network seem to be fine. It may be that some have much higher pain threshholds than others. There is some indication that high levels of Vitamin D and calcium together with weight-bearing exercise really help. Some studies have found acupuncture good for the joint pain. It's good luck for those who can take them, that's for sure.

    But it seems to me that women have the right to know what these drugs can and can't do for them. There is no doubt at all that statistically they make a big difference in the rate of recurrence and offer a very significant advantage in terms of longevity. To put it simply, if you take them you are likely to live longer, or at least less likely to die from breast cancer while you are taking them.  But this is frequently at the cost of losing youthfulness and physical mobility.  If sheer physical survival is your Number One concern, then you have to put up with the side effects. Oncologists seem to think this is totally reasonable. However the rate at which women abandon these treatments is very high, even though they know it is more likely that their condition will worsen and they may end up with Stage 4 (metastatic) cancer. It is another of those super-painful decisions which people are asked to make when they really don't have all the relevant facts available. And in some cases, those facts are simply not known. I interrogated my oncologist about why AIs cause such exruciating joint pain. It is not arthritis because the bone is not degraded but the pain levels are similar. He had to admit that they have no idea! From their point of view, the important thing is saving lives. From a patient's point of view, the quality of life is their main concern. It's a horrible dilemma. Ask your oncologists what your options are. But sadly, there just don't see to be many if you have oestrogen positive BC.

    Good luck and best wishes to you both, and to all others struggling with these nightmarish decisions.
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