Hello siuin,

I'm sorry to hear about your situation.

I can appreciate why you are worried about the effects Anastrozole might have on your bones but before stopping any prescribed medication perhaps it is a good idea to speak with your medical team, as they would be able to help make a more informed decision. So if you don't have an appointment with them already I think it's a good idea to book one in order to discuss your concerns. 

Also, if you feel like speaking to someone else medically trained might help, feel free to give our cancer nurses a call on this number 0808 800 4040, Monday - Friday, between 9 a.m - 5 p.m.

Best wishes,

Renata, Cancer Chat Moderator

Thank you for your reply.

I really don't feel that my Oncologist takes osteoporosis seriously.

I got his assistant who is also a doctor. She told me that they brought me in early, but not over anything too important, just that the results of my Dexa scan had shown that my bones had worsened and they were just going to give me an injection of Prolia every six months. But because I was expecting this I had my questions read.
1. What are the side effects of Prolia.? People tolerate it quite well.
2. What was my T score in Feb 2017 ?-1.8
3. What was my T Score in Feb 2018? -2.6
4. Will the Prolia improve my score? No just stabilise it.
5. If I stops taking Arimidex will the Prolia improve my score? It might.
6. If I stop taking Arimidex what is the likelihood my cancer will return? It is hard to be accurate but probably 7to 10% chance of recurrence.
7. If I keep taking Arimidex, what is the likelihood of recurrence? About 5-7%
I think I want to come off Arimidex. But you will increase your risk.
But it has given me osteoporosis. Also it is ruining my teeth.

She fetches the head Oncologist.
I tell him that in the last year I have lost the first tooth ever in my adult life, I have to get a root canal redone and the dentist has told me that I will need a bone implant to save another tooth. I tell him that while I have done everything by the book and even tried a drug trial, I have a horror of getting osteoporosis and that at the rate I'm losing bone density, be the end of this course I will be damaged beyond repair.
She suggests Tamoxifen. He says it will drive my fibroid mad, it was huge. I say. take it out, its smaller now.
The new plan.
immediate visit to a gynecologist with a view to having another operation, this time to remove the fibroid. Get the teeth done. Stay on the Arimidex until June and keep taking the calcium. Then in june, switch to Tamoxifen and while it does damage the bones, it is not as hard on them.

I go home and think about it. My plan. NEVER EVER take Amridex again. Fix my teeth, get the fibroid out. Maybe give Tamoxifen a go. Get a dexa scan every 3 months. If I lose bone density, give up Tamoxifen too and take my chances. The 2/3 % risk differential is not worth the osteoporosis. I have been on Arimidex for 14 months, I took 5 rounds of Palbocciclib and I had complete pathological response after just 3 of my 5 rounds of chemo. That must make my chances of recurrence even lower.

I can only work with the information that I have been given. If there is another angle that would help me make the right decision I will gladly listen, I'm so worried about this it keps me up at nights.

Tamoxifen works differently to Anastrozole, it doesn’t affect bone density. I’m on it for that reason, still get the sweats etc but so far have ben tolerable. 

Hi Siuin, 

I know this is some time since you posted - I only read it yesterday. It is very much how I felt after I was diagnosed and treated for stage 2 lobal breast cancer in June 2016. I opted for a mastectomy and was fortunate not to require further treatment, however for reasons I am not sure why was put on anastrazole for 10 years. 

I found the side effects awful - the anxiety, continuous flushes and sweats, sore bones etc. Having existing bone problems in my neck and lower back didn’t help and the anxiety made the problems much worse especially as I was told that I didn’t need a dexa scan despite being told that I would be given one before I had started the medication. 

I believe I am older than you are - being post menopausal - not sure if that’s relevant to you - but I like you did a lot of research into anastrazole, the benefits versus the side effects which are indeed not good and very quantifiable. It does however seem to be the most effective medication to prevent recurrence of cancer. 

There is an interesting study done by the Australian NHS which took two groups of women - Not age specific - taking anastrazole for periods of 5 and 10 years. It studied both groups for 10 years. The women who took the drug for 5 years had a higher incidence of death from cancer during this time. However, the women taking the drug for 10 years had a similar rate of death due to osteoporosis and cholesterol related diseases - side effects of the anastrazole - rather than cancer. 

This study somewhat confirmed my feelings of coming off the drug. I needed to ask my surgeon about the percentage of recurrence of my cancer in order to make up my mind. He told me that perhaps 2/3 in 20 would go on to have Cancer recurrence without taking the preventive drugs. 

I cannot advise you one way or another - I am generally a better safe than sorry person but I found the odds for me balanced against how badly I felt and the definite side effects plus how “well” I would be monitored and I stopped taking anastrazole in May 2017. I am well aware that I may go on to develop cancer again and will take my chances on that. We all die sometime and I would prefer to enjoy living.

 I feel well and the side effects regarding the very bad anxiety, sore bones though not unfortunately the bad flushes gradually subsided. I’ve also given up alcohol, caffeine, eat healthily and exercise a lot and am taking a teaspoon of turmeric daily - my way of negating cancer risk perhaps. I am still not sleeping particularly well but significantly better than I was when I was on the anastrazole. 

I suppose it is a question of balancing out what is going to work best for you after you have gathered as much information as you can. My GP was also very helpful and offered support whatever my decision was. 

You have probably made your decision by now, I wish you well and hope you are having positive outcomes.

I am 72, had right breast removed December 14, 2014; 4 months of “red death chemo” in 2015, took Anastrozole for two years, did not bother to read side affects.  Have had basic arthritis for years and at the end of two years on Anastrozole could barely walk.  When I read on chat rooms, that joint and bone pain was part of it, I quit taking Anastrozole completely and opted for quality of life, did that for a year.  Ended up back in original state of surgery with original oncologist .  He and my daughter pleaded with me to take Anastrozole, I did, horrid.  Read that excercise and diet helped, sent to a company with very good powder for shakes, they sent also a capsule for joint pain.  I am fatigued and know it is from pill, I just make to do list and rest when needed, guilt free. Any kind of “sweats” don’t hurt, so I ignore.  ALWAYS hungry, know it is the pill, so I chart calories for the day.  My bone density is really, really good and was amazing to an oncologist even after chemo.

Without the nutritional capsules for joint pain, I would be in bed.  I must maintain with daily capsules, but I have no joint or muscle pain.

Tried tamoxifen twice, felt like I was having a stroke.  Will continue to take Anastrozole for two more years and would go longer is oncologist requested.

Just picked up this thread, I will be on anastrozole soon and the side effects scare me to death! I suppose we are all different and we will all react in different ways, if you have any tips please share them....I am only too willing to listen xx

Can I ask what are the nutritional capsules for joint pain and where do you get them?

i already had problems with muscle and joint pain from other illnesses and am finding the effects of anastrozole very very had to bear

Hi KiwiWife

I too had a grade 2 lobular cancer and I have been on Arimidex coming up to 10 years now (I'm 55) but I have been really lucky and have had no problems with it at all and my DEXA scans have all been fine too. 

I looked into turmeric years ago but read that it's an oestrogenic as a supplement and should therefore be avoided if you've had an oestrogen positive cancer, however, apparently it's ok to use in normal cooking. 

Exercise and weight control is definitely the way to go!

I have just started taking Anastrozole in the last two weeks so I shall be watching very closely for the side effects. Its frightening when you read about them!!

Iv now finished chemotherapy and rads and so will be starting these wee things next week.....it will be good to compare notes.....x