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.

Dear Kiwiwife, 

Thankyou for your reply, I found it most helpful and I’ve requested an appointment with my oncologist ASAP.

As you say , sometimes the flow of information is limited. My oncologist, for example, didn’t/ wouldn’t confirm my radiotherapy in case it was “too much for me to deal with” as I’d been very “brave” until after my sentinel node removal. To say that I felt I was being condescended to would be a little understatement and sure enough, when asked again, he confirmed my radiotherapy program and I felt I could prepare myself adequately. 

I read that the benefits for a few are quite negligible versus side effects so I will keep investigating and make an informed decision when I next see him, but it’s so good to know I’m not falling apart.

Thankyou for your advice.

kind regards

P.s. couldn’t agree more about giving up alcohol and exercise, not my natural lifestyle choice but it does really help .

Hi Flubs,

wishing you the best with your oncologist, I hope he/she is sympathetic and helpful. I am now 3 years down the line from my cancer diagnosis and am physically good apart from surgery related problems and bad menopausal symptoms which have been much alleviated by not taking the anastrozole. Exercise and good lifestyle definitely help, more support and being better informed would be really helpful but I guess the NHS is very stretched and though I find the system very lacking in this respect, from my experience, I cannot blame the staff as they have all been very kind and I think have done as best as they are able.

You are definitely not falling apart. Hope you have a good new year.

Best wishes 

Hi you said you are not taking the Anastrozole? When did you stop talking them and why?

 I have stopped after 6 months. I found that 

I had pain in my hips arm hand.Went to oncologist. They said to come off Anastrozole. The small difference they would make,against the side effects.

would appreciate any more people who have had the same problem, to answer this please. I feel like I am going mad

I have read your message,more than once.

 I just wanted to say thank you. I have come off Anastrozole after 6 months. I thought I was going mad with the hip pain. 
good luck with everything 

Hi 1956

Just wanted to let you know you’re not going mad!

I’ve been on Anastrozole for 3 months and the pain is off the scale!

I’ve gone from being a fit, active, energetic 52 year old who walked 3 miles every morning (and ran it once a week just to keep things moving) to being a physical wreck.

After being diagnosed with breast cancer I have had a lumpectomy followed by radiotherapy and feel like I have coped well with all of it until now! I have pain in my hips, knees,feet, hands and throbbing bones and have tried really hard to keep walking and stretching in the hope it will subside. All this and chucking down ibuprofen and paracetamol like it’s going out of fashion!

In desperation I have been to see the breast cancer nurses and they have told me to stop taking it for 4 weeks and monitor any changes. The difference already after only a week is massive. I managed 2 miles this morning! A few aches but nowhere near as bad!

Do whats best for you and go and see someone.It’s your body.

Take care.

Hi 1956, 

I just wanted to wish you luck - I would have responded sooner but I have been having extreme difficulty signing in! but finally got there. Stephi is right, you have to do what is best for you, but it’s important to be as well informed as you can be so you can weigh up your own risks to be prepared for them.

 I found the aches dispersed more quickly than the anxiety but both lessened recognisably within a week or so. It took more than a year for me to appreciate how much my mood had gradually improved though  - when they say that you have the benefits of the drug even after you have stopped taking it, I believe it, because it takes a while for the other side effects to wear off too - depending I suppose on how long you took it for in the first place. 

Best wishes to you and Stephi for continuing recovery 

Hi everyone I'm so glad I found this discussion. I had a lumpectomy followed by sentinel node biopsy and radiotherapy which finished at the end of November. Started taking Anastrazole early September. Had some side effects such as aches and pains and hot flushes which were not too bad to cope with really.

Recently went to get my latest prescription and it was a different brand of Anastrazole. Have had such severe pains and aches, especially in my legs. It's affecting my sleep at night as can't get comfortable. Spoke to nurse practitioner today to ask if it could be the different brand causing this and she wiil organise a new prescription for me to collect.

I asked if they had the results from my DEXA scan done in October and it sounds as though the results aren't very good. Have to go for urgent Vitamin D blood test tomorrow so further treatment can be decided on. I'm worried about bone problems especially now I have to take Anastrazole for 5 years.

Any advice would be gratefully received

Thanks from Mary xx

MaryT19

i had read last year that some ladies tried different brands of Anastrozole, some worked better than others, less pain.  Maybe your first RX was better for you.

i don't have an inquiring mind and was finishing a project in very hot weather (115-124).  I had bulging disks and some arthritis so was sleeping in a big comfy lounge chair.  After about 1 1/2 years, I found this site and realized Anastrozole was the pain.  I quit, went to my home in another state, my oncologist begged me to go back on, I did, took for 6 months, exhausted and in pain and in bed most of the time.  So I took Anastrozole a total of 2 years, had stage 2 in right breast, mastectomy, chemo.  Hit the five year mark a couple of months ago and am starting reconstruction.

quitting Anastrozole was a big decision for me, I did not tell my family or my doctor.  

Hi Penelope

I'm seeing the oncologist on Thursday so will see what he says. Am hoping if I go back to the original brand my symptoms will be more bearable again.

Sounds like you are doing well

Very best wishes

Mary

Thank you Mary.  Yes, I am doing well, cancer free.  I was never afraid (exhausted and only 91 white blood cells are one point with chemo and a virus).  Great care, I look at cancer the way I would heart disease or diabetes, it can be chronic, but so are a lot of diseases....

I'll be sending good thoughts your way!!!!

Thank you Mary.  Yes, I am doing well, cancer free.  I was never afraid (exhausted and only 91 white blood cells are one point with chemo and a virus).  Great care, I look at cancer the way I would heart disease or diabetes, it can be chronic, but so are a lot of diseases....

I'll be sending good thoughts your way!!!!

Hi Everyone

I think deciding to quit the Anastrozole is a brave decision and one which I fully applaud!

For myself I will definitely not be going back on it but am going to give one of the other drugs a try once my 4 week trial period is over. I will just see what the breast care team suggest and go with that.

I have however told my husband if none of the drugs are suitable I will not be taking any and he is fully supportive of my decision, probably because he can see the amount of pain I was in! I think you have to consider quality of life versus medical benefits.

Good luck to everyone in your continued recovery. Xx

Hi 

I have had cancer twice once at 29 and now at 57.

Didnt take tamoxifen at 29, due to side effects and don't regret that one bit.

Was told based on my current situation I had a 1% improvement using Anastrozole versus nothing.

So thought I'd try it, I am fit anyway go to the gym healthy etc, so took it for four months.

Although I didn't have anything like the horrendous reactions some of you have had,I had the odd pain in my hip, had a few very strange dizzy episodes and overall felt really down dare I say it a bit depressed which isn't like me at all.

I have stopped for the last few weeks and I feel better more positive and kinda back to normal.

On a down side I am awaiting my DNA results for the BRCA genes results were delayed as it wasn't conclusive either way so they've run it again fingers crossed .... 

Not sure what I will do in the future re these tablets.

Good Luck Girls 

x

Dear Pug07,

I have been so cavalier since my mastectomy in 2014, my oncologist here in Raleigh, NC actually got mad at me for being too happy, it was my last visit for 18 months as I am cancer free.  Due to family issues (a 95 year old healthy mother) and a property that needed attention, in five years I had an oncologist and chemo in Idaho, an oncologist in Palm Springs, CA and my main oncologist in Raleigh, NC.  Because I live in the moment, my sweet doctor fears I will crash if cancer comes back.  His parting words were if it did and was in my bones he could probably help me.  I'm about to begin reconstruction this month, I'll be 73 next month.  Redoing my breasts, had my right one removed, not my left, much more difficult to put back on than to take off, but I'm grateful and I heal well.  Will have skin from back, then expander, several visits.  Then left breast lifted and puffed up.  The doctor wanted to know why I waited the five years.  My response, "I'm dating", he doesn't mind, this is for me!!!!

Thinking of you my dear, we are all marching together!!!!

Hi Pug07

You sound like you have been through a bit of an ordeal.

I think keeping fit and healthy is a good idea. I know it helped me when I was newly diagnosed and felt my life spiralling out of control. 

I’ll keep my fingers crossed as well for good test results for you.

Try and stay positive and sending you hugs.x

Wow Penelope, 73 and a great attitude to life!

Good luck for your future surgery.

wishing you all the best from across the pond. X

Thank you Stephi and the same to you!!!!

Hope all goes well for you.

Life is for living there's no doubt about that.

You're brave having the reconstruction,  I had the mastectomy as I had the lumpectomy in 1991 and had it was the same breast so had to go.The thought of the reconstruction filled me with dread.

All went well with op but still I guess getting my head round having one boob 

x

Pug07

yes, it is brave to reconstruct, but practically free in America per a law.  I'm just in a very strong place and I have daughters.  They've seen me happy with one breast, they were both there for my mastectomy, now they'll get to see the repair process....

Oh it's free here on NHS,but I didn't fancy the skin removal and recovery, although I am slim and very fit so recovery would have been good.Maybe in the future I may change my mind...

I'm sure you will look great and have lots of fun x

Pug07

yes!  I've waited 5 years, no rush if ever!!!!