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Breast cancer drug therapy questions

Fifibell
Posted by

Hello, I am asking a question on behalf of my mum who had breast cancer over 5 years ago and has been on Anstrazole ever since. (She is post menopausal).

She had a 6 week break on recommendation of her doctor as she has been getting joint pain. We are wondering if there are different brands of anstrazole which do not give joint pain? If so who do we ask for these? The doc said to go on tamoxifen, but mum has heart disease and history of blood clots and is very scared to go on this. 

We wanted to try Lestrozole but doc said no as she said they are the same family as astrozole. So we are wondering if there are other brands she can try?

Thanks in advance.

Carole F - Macmillan

Hello Fifibell

Thanks for getting in touch and welcome to our online community. It sounds like your mum is struggling with the side effects of anastrozole, although it’s good to hear that she has managed to take them for 5 years.

Although postmenopausal women should be offered treatment with an aromatase inhibitor for 5-10 years, doctors need to make sure that the benefits outweigh the risks or side effects.

All aromatase inhibitors tend to have similar side effects, but for some people the side effects can be less with a different one. Changing brands can help too, but sadly there’s no way of predicting whether this will make a difference. It’s difficult for us as nurses to say why the doctor has suggested tamoxifen rather than letrozole. Your mum’s specialist should be able to explain why they think this is for the best.

It might be worth having a look at the NICE guidelines on endocrine (hormone) therapy before having a chat with your mum’s specialist.

I hope this helps. If you’d like to talk things over with one of the nurses, please give us a call. Or it might be worth having a look at our online breast cancer group. This can be a good place to share experiences and ask questions to people who understand what you’re going through.

Best wishes

Carole (Macmillan Information Nurse Specialist)

Fifibell
Posted by

Hi Carole,

thanks so much for your reply.

The consultant that mum saw would not give her Letrozole when she asked to try that one as she said Letrozole was from the same family as antrozole and she would have the same side effects. So she told her to go away and read the booklet on tamoxifen and try that. When mum asked about it causing clots the consultant said it was very minimal. She would not be reasoned with. When mum spoke to the breast cancer nurse after her appointment with the consultant to tell her she did not want to go on tamoxifen, she could not be reasoned with.

 I even spoke to the Breast nurse on the phone about her concerns on tamoxifen and she would not change the drug either. She told me that she was the ‘professional’ and knew what’s best for mum. They told her to go to the gp if the tamoxifen doesn’t agree with her and ask the gp for the Letrozole. 

So mum has managed to call the hospital again and tell them she is not going to go on the tamoxifen and she would rather just stay on the antrozole. How does she go about getting it changed to the Letrozole? The hospital seem very unwilling to do this. Is mum able to get it from the gp or will they just say the same as the hospital?

so sorry to ramble on. But mum is so anxious and scared that they will take the drugs off her altogether now. She doesn’t know what to do. She would rather manage the pain and stay on the aromatase inhibitors, than take no drug at all and risk the dreaded cancer coming back. 

Mum is now 75 and we feel that now she has reached this age they do not want to help her anymore. She is so young and full of life she runs rings round me! We don’t know what to do as the hospital have now discharged her from their care.

worried daughter. 

Ellen M-Macmillan
Posted by

Hi Fifibell,

Thanks for getting back in touch with us and I’m glad that you found Carole’s previous answer helpful.

Don’t apologise as you feel that you’re rambling on. We don’t think that at all. Sometimes writing all your concerns down can be therapeutic.

It’s okay that your mum doesn’t want to take tamoxifen no-one can make her take anything that she doesn’t want to.

I’m unsure as to why the doctors looking after your mum are so reluctant to change her Aromatase Inhibitor. It’s common for doctors to suggest trying a different brand of the medicine in the first instance to see if this helps with the joint pain she has been having. If this doesn’t work, then doctors sometimes would suggest trying a different drug such a s Letrozole to see if the pain isn’t so bad. The doctors are right to say that they are from the same family of drugs and therefore the symptoms tend to much the same. However, trying a different drug works for some people.

The most important thing is that your mum has managed to have 5 years of treatment as some people can’t manage to tolerate the drugs for this length of time and they find they have to stop earlier.

Although the hospital has discharged your mum from their care, this doesn’t mean that she cannot be seen if she has any symptoms that she was worried about. If you think it would be helpful to do your mum could ask her GP if she can be referred to a different consultant for a second opinion.

Whether or not your mum’s GP would be wiling to change her medicine from Anastrozole to Letrozole is difficult for us to say. Some GP’s would be comfortable with this and others would prefer to be guided by the hospital doctors. It would be a good idea for your mum to make an appointment to see her GP to find out what they would be happy to do.

It’s great that your mum is still active and can run rings round you as studies have shown that exercise can help to strengthen the muscles, joints and bones. Our Information about the benefits of keeping active and where to get support can be helpful to look at.

I see Carole suggested that you can join our online breast cancer group. That can be helpful to do as there will be others who can share experiences with you and can be a great source of support to you both.

Best wishes and take care.

Ellen-Macmillan Online Digital Nurse Specialist.

 

Fifibell
Posted by

Thanks for your reply Ellen,

Mun received a copy of the letter that the consultant sent to her doctor today recommending that she either take tamoxifen or nothing, as she has already been on anastrazole for 6 years now. 

Mum is very upset as she doesn’t want to go on tamoxifen and doesn’t want to not take any drugs either. So we have managed to make a doctors appointment but it’s not till next week. 

Is there a way that mum could go private and pay for either anastrazole or Letrozole do you know?

many thanks again. 

Shieldscannylass
Posted by

Hello ladies, this thread caught my eye, hope its OK to invite myself in to add my pennyworth in a kindly meant way.  Have gone through similar during the past couple of months, but a different AI called Exemestane.  Am in the age 65+ Club as I like to think of it, and getting through the SE's on top off all the recent poop has been a challenge!  Must quickly say the surgical and radiotherapy staff were amazing.   I had to plead to come off Letrozole as s/e was horrendous, the BCN insisted I take an AI for 5 years so switched me to Exemestane as tamoxifen was risky as had had blood clot on the lung back in mists of time.   I found through trial and error that switching to the original makers brand, not generics, has helped a wee bit.  I had to fight for this though on cost grounds however battled on and got the Pfizer brand for same price as generic one made somewhere in the EU.   Fifibell, would this be suitable for your mum?   Good luck. Picking my words carefully, I'm also finding that when we ladies get over a certain age, well I feel am pushed to the back of the Q.  Still waiting a year for much needed counselling.   Having said that am truly grateful for the NHS skills and medical advances.  

Maria  xxx
Josie - Macmillan
Posted by

Hi Fifibell,

Thanks for getting in touch with us again. I can understand why your mum is upset. Sometimes they can feel that taking the tablets are a safety net.

It’s difficult for us to say whether another doctor from the private sector will prescribe anastrozole or letrozole when the consultant is reluctant to prescribe them. You could certainly get advice through asking for a second opinion. Your mum’s GP could refer her for a consultation.

I hope this is helpful.

Josie – Cancer Information Nurse Specialist.