Hello Red59

I'm so sorry to read about the struggles that you've been dealing with since starting anastrozole. I know that there will be other members here on the forum who understand the side effects that you've been living with and just how much they can impact your quality of life. Hopefully, some of them will post to share their experiences with you. 

It's good to know that you have an appointment arranged with your Oncologist to discuss your concerns. I wanted to suggest that ahead of that appointment you may want to give our team of nurses a call. I'm sure that they will be happy to chat things through with you and suggest any questions or points that you may want to raise with the Oncologist. If you'd like to speak with them they're available Monday to Friday 9 am to 5 pm on 0808 800 4040. 

Do keep in touch Red59 and let us know how you get on. 

Best wishes, 
Jenn
Cancer Chat moderator 

Hello Red59,

my goodness you have been through the wringer haven't you. As you say a cancer diagnosis is bad enough without the addition of bone pain and a reduction in your quality of life. 
 

I was diagnosed with breast cancer in October 2019. I had a  breast reduction to remove the tumour and 15 sessions of radiotherapy which was completed in February 2020. Fortunately just before the first lock down. I was then prescribed Anastrozole for 5 years. I took it every other day initially. I had heard about the very bad side affects and really didn't want to suffer any of it. Anyway I had a dexa scan to check my bone density and it was discovered I had osteoporosis. I then stopped the anastrozole. I felt it was just not worth the risk of making my bones even thinner than they are already. The cancer risk is upped a little by this but (in my case) only by about 2%. I felt able to go with that. 
 

I walk about 4 miles every day. Swim most days and generally have a very good life without joint pain/excessive tiredness or low mood. etc. I am happy with my decision, however it's NOT something everyone ought to do, and I am most certainly NOT advocating you, or anyone else, take a similar path. It fits me fine. It may not fit everyone. 
 

I am truly amazed however that these medicines are still the only ones available. They very often DO interfere with patients quality of life and reduce their bone density badly. I have read on this site how some people aren't affected but I feel they are the exceptions rather than the rule. 
 

I wish you luck on this toughest of journeys. Cancer is one big battle. The hormonal medication is sadly another one. 
 

I wish you well. 
Kebbs  
 

Hi Kebbs

Many thanks for your reply to my post you are brave you sound well & happy and that's what it's about quality of life you seem to have made the right choices for you.

I had that telephone appointment with the oncologist today it was a disaster for a start a language barrier couldn't understand all he said I felt like just another number on his list just reeled off the drugs to swop me to and said he will give me a six week drug holiday.He was not interested in me one little bit there are millions of us all struggling no doubt he's heard it all before but it's so easy to say try this drug and that they don't have to suffer the side effects.

The drug Exsstane has the same side effects but could suit me better yes true but I don't want to take medication anymore.He's not listening.

He couldn't even tell me what my risk would be if I came off the drug.

Oh well next stop GP 

best wishes

Red x 

Thanks for that I will pick myself up off the floor and see if I can speak with a breast nurse tomorrow

Thats what I need information as much as I can get not being able to talk face to face is not the same.

Both my sister's oncologist and my friends are wonderfully supportive like yours.

I just feel so stuck

thanks so much for your advice 

Red x

Hi Kebbs

just an update to let you know I spoke with breast nurse today and she was very kind and helpful would you believe it that it was not an oncologist I spoke with yesterday she said it could have been a surgeon I did complain and said it made me feel just like  another number on his list he was not listening or supportive and left me feeling miserable and intimidated.I hope she will report this.

Nurse said I was due in the clinic yesterday but I told her the appointment had been changed to a telephone appointment and that I did not know who this man was as his english was not good.

It is quite unnerving to think no one knew about this person making phone calls.

She checked out my notes and booked me in to see my oncologist who saw me at the beginning of this journey and did my lumpectomy my appointment is for the 25 and my husband can sit in too for support.

She is a lovely lady and will hear me out and we can discuss what's best for me plus my risk factor.

I can't tell you how relieved I feel now and want to thank you for your help

You take care all the best

Red xx

Red that's fabulous news!! So delighted you have got things sorted out!! There's nothing worse than that feeling of being a mere ''number' in any situation, let alone  when you have a serious condition!! 
 

Yes the BC nurses are always SO supportive and knowledgable. Really pleased for you!!! 
 

I have pressed the 'follow this discussion' button so I will always see your comments. Well under this heading if Anastrozole anyway! Hope that's ok. 
 

Go well! 
Kebbs x 

Hi Kebbs

Id really like to keep in touch too and know how your doing this site is so good for that.

I saw my GP today and she was very supportive about me giving up the medication.

Having to have another mri as the pain in my shoulder neck  head & arms is becoming  worst probably have cervical stenosis to add to list but once results are through I'm being referred to a spinal consultant and hopefully I will get the help I need to manage my condition.

At least I'm feeling more positive and if I regain my energy by dropping the meds well I can then concentrate on making my body stronger & managing my pain.

so I finally feel I'm moving forward step by step.

take care thanks again

Red xx

Hi Red, 
I have sent you a friend request. That will mean we can message without it being public. Possibly easier at times. I will leave the request with you then!! 
 

SO glad you are feeling more confident and making progress. Good luck with the spinal consultant too. 
 

Kebbs x x 

Hello,

I just wanted to message and say that I've been feeling similar to what you mentioned. Sorry to hear about the MRI results for your back. 

I hope you were able to get some good advice from your oncology appointment.

I had  breast cancer treatment for invasive lobular oestrogen positive, back in 2019. I had op and radiotherapy and was then put on Anastrazole. I had very similar side effects to yours. I haven't gone down the route as yet of checking about osteoarthritis. I feel like my body from head to toe is never going to be the same. I do feel like I sound like a hypochondriac when I say that. And I am extremely grateful that they were able to treat the cancer. I know I'm lucky.

I get particular pain in neck, shoulders and back and pins and needles in hands and feet and numbness. Also in legs. Fatigue is still there too.

I was advised that I could try coming off Anastrazole for 6 weeks to see if the side effects subsided. 20 weeks later and they hadn't subsided so I've begrudgingly started taking it again in the past few days. 

Seems like there's very little info on this out there. 

I think I just want to know if there's anything I can take that will help my body as the oestrogen would have. And also if the Anastrazole is doing more harm than good.

I hope your recent appointment was positive.

Hello again,

Just noticed that you have finally managed to see someone at the hospital who is more helpful. Couldn't see that part of the link when I first messaged :)

Best of luck moving forward :)