Gransnet forums



(13 Posts)
Jane43 Sat 07-Nov-20 09:58:36

I would really appreciate input from anybody who is taking or has taken Anastrozole. I had a lumpectomy in December 2018, the tumour was very small - only 4mm and Grade 1 so I was very fortunate. I had radiotherapy without any adverse effects and was put on Anastrozole for five years. I have had two mammograms since the procedure and everything is fine, I will have three more.

The Anastrozole is making life very uncomfortable for me in that I have bad hot flushes, sometimes on and off all day. I also feel very fatigued and my nails are flaking and breaking. Fortunately my sleep hasn’t been too badly affected. The first Dexa scan I had showed I am in the pre osteoporosis stage and I was prescribed Alendronic Acid medicationo but after researching it I didn’t take it but take calcium supplements. The oncologist and my GP are aware of this and we agreed to see what the next Dexa scan says.

I have looked at the implications of stopping the Anastrozole. Apparently on the medication the chances of Breast cancer recurrence are 5-10 percent and off it they are 7-10 percent so my thoughts are that I would have a better quality of life if I came off the Anastrozole. I am 77 and will be having mammograms until I am 80 so I really can’t see the benefit of taking Anastrozole in my situation. DH says he will support me in whatever I decide.

I would really welcome any input that might give me information I haven’t considered.

Sparklefizz Sat 07-Nov-20 10:32:50

Hi Jane43, I had a terrible time with side effects on breast cancer drugs, and was changed onto a different one several times when it all became too much. I felt I had to continue one way or another because it was the second time I had had breast cancer in the same breast, having had a lumpectomy and radiotherapy the first time, and then a full mastectomy and drugs the 2nd time.

I was supposed to stay on the drugs for 5 years but in the end I was allowed to stop them at 4.5 years. They triggered the menopause. One was a daily chemo drug in tablet form and I suffered 24 hour nausea every day for 6 months until I just couldn't stand it any more.

I would speak to your consultant to see if they can put you on something different that you might tolerate better.

Meanwhile I have been clear of cancer since 1998 so I'm very grateful and can look back and realise that it was worth it.

Regarding being osteopenic (pre-osteoporosis), I was in the same situation and didn't want to take the drugs, but calcium alone is not enough - you need magnesium, Vit D3, Boron, Zinc and Omega 3, some of which help with absorption of the calcium.

You are welcome to send me a pm.

dragonfly46 Sat 07-Nov-20 10:38:26

I have taken Anastrozole and found the side effects lessened. I am now taking Exemestane and feel a little achey at times but nothing I cannot handle.
I am not sure why you are not taking the bone strengthener. You say you have researched it? I take biophosphonates every day along with high strength calcium and vitamin D so the effect on my bones is minimal.
I am of the mind that anything which will allow me to live longer is worth persevering with.

Jane43 Sat 07-Nov-20 11:43:34

Thank you Sparklefizz, very informative. The calcium supplement I have does contain Vit D3, Magnesium and Zinc but I will order Boron and Omega 3. I did some research which said that Vit K2 helps with the calcium absorption so I take that as well.

It’s good that you have remained cancer free since 1998, you were obviously a lot younger than me when you had breast cancer so I can see why you persevered with the treatment. I will speak to my Oncologist but I feel that I should wait until the strain in the NHS has eased.

Sparklefizz Sat 07-Nov-20 11:54:05

Jane43 Sorry, I forgot to mention Vit K2. Thanks for reminding me.

The "strain in the NHS" is unlikely to ease for some time as there will be a backlog even when the overwhelm due to Covid has passed, so I would speak to your Oncologist sooner rather than later.

Well done for the progress you have made so far. Great news. flowers Long may it continue.

moggie57 Sat 07-Nov-20 11:55:58

if you feel ill ,get the doctor to change the tablets .

Lazyriver Sat 07-Nov-20 12:35:53

I took anastrozole after my BC. Was prescribed it because I was post menopausal. Tamoxifen was given to younger women.
I had terrible joint problems as a side effect, with feet ankles so bad that walking was almost impossible.
I asked to be moved to tamoxifen and was told by the consultant that there was no proof that this was less effective in post menopausal women than anastrozole.
Remained on tamoxifen for 5 years without too much bother. Hot flushes are inevitable but a sign that your oestrogen is low, so good news if your BC is caused by oestrogen.
I would talk it over with your consultant and see what they recommend. My BC was 10 years ago so maybe different drugs available now.
Hope this helps

Jane43 Sat 07-Nov-20 12:50:07

Moggie57 the oncologist told me that the alternative drug was Tamoxifen but it was associated with cancer of the uterus so he only usually recommends it for patients who’ve had a hysterectomy. I would rather just stop taking the Anastrozole and accept an increased risk of breast cancer recurrence of 2 percent. I believe that there are other brands of oestrogen blockers but I believe the side effects I am experiencing are down to the lack of oestrogen rather than the particular brand of drug. I will look into it though.

Dragonfly46 in my case the side effects of the Anastrozole have steadily worsened over the two years I have been taking it. Regarding the Alendronic Acid there are numerous reports of severe side effects including digestive problems such as acid reflux and constipation, ulceration and cancer of the oesophagus, damage to the jaw and teeth including osteonecrosis of the jaw, Atrial Fibrillation, dizziness, severe aches in the bones and fractures due to brittle bones. There is a class action in Canada of over 1200 people against the manufacturer of the drug. I realise this is anecdotal evidence and many people experience no problems at all but it is enough to make me cautious for the time being. If the next Dexa scan shows I have osteoporosis I will have to reconsider my decision not to take the AA. Of course like you I want to live as long as possible but quality of life is important as well. I’m glad you are doing well.

Auntieflo Sat 07-Nov-20 13:35:25

Jane43. I had breast cancer in 2018. I was 76 at the time.
After a lumpectomy and radiotherapy, I was offered Anastrazole. I didn't like the idea of taking a chemotherapy drug, and after speaking to the surgeon, and asking him the pros and cons, he told me the odds, and I asked whether he would take it. He said no.
The outcome was that the risks of it coming back were negligible, so I have never taken it.

This is not to say that this course of action would be right for anyone else, as I am just saying what I did.

Best of luck, and good health.

Jane43 Sat 07-Nov-20 18:14:20

Thanks for your input Auntieflo. I am leaning towards your view.

InnocentBystander Sun 08-Nov-20 12:06:19

My son is a consultant orthopaedic surgeon and he advised my Good Lady to stop alendronic acid after a certain number of years (sorry, can't recall how many) because there were cases of atypical femur fractures in longer term users. She's now on denosumab injections twice a year. That also has its side effects but it is a judgement call as to which is worst condition. Letrozole, anastrozole, and others differ slightly - she's had them all since 1997 and is now on Herceptin/Pertuzumab/Fulvestrant. Apparently still in remission and tolerating the deep menopause symptoms.

Jane43 Sun 08-Nov-20 12:44:41

Thank you for the information InnocentBystander. I’m glad to hear your other half is in remission and doing well.

Jane43 Sun 08-Nov-20 12:51:26

Thank you Lazyriver, I have noticed problems of weakness and pain in my feet and ankles resulting in two nasty falls when out walking but hadn’t considered a connection with Anastrozole, I just put it down to ageing or arthritis.