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Appointment next week

ComradeJ
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I never see anyone at my hospital.

So at this review, it could be anyone really.

But to get some useful answers going forward please give me some pointers going forward to get value out of it.

I know what they want out of it.

I told a nurse I'm not taking letrozole. 

Also stated that I do not want any leaflets (it says that on my file)

As they do that in order to say they have had a discussion with me about the topic in a follow letter to my GP.

It's a con, I will have a leaflet if the discussion takes place.

But not so they can take a box

I knew nothing about my surgery 

Not any aftercare so never again will I accept a leaflet as a discussion.

Nor does it illustrate "informed consent".

 So I want them to choose an AI based on me as a human being.

Have follow up, too 

The reason I couldn't stay with taking letrozole

Is I've been in constant pain since surgery. 

As it was coming up to a year now

So I paid to see the pain management I would of had to wait till May to see.

He confirmed it's nerve damage and I will go for nerve conduction tests

Also explained differing pain relief etc

So with that sorted.

I can go back to thinking about which AI would suit.

As my pain has been constant I lost the use of my right arm.

Couldn't be in pain with my legs I would be iMobile

I also became depressed not my personality 

So stopped it 

  • Hello Comrade J and thanks for your post,

    I am sorry to hear about the constant struggle that you are having with pain and I can only imagine how frustrating this must be for you. I do hope that once you have had the nerve conduction tests that you can find medication that can help relieve the pain that you are getting.

    I would firstly advise you to take someone with you to your appointment for support and another pair of ears listening to what the doctor has to say.

    I would try and have the questions answered that you feel have not been addressed for example the type of surgery that you have had.

    There are three types of aromatase inhibitors that all work in similar ways. Side effects vary from women to women and there is no way of saying whether you would react better to one or the other. Breast Cancer Now have some information on these types of drugs which you can see here

    Letrozole and Anastrozole are the most commonly used and you can read more about these here

    I can't say which AI the doctors will recommend after you have already taken letrozole but do ask about any potential side effects and how long they recommend that you take the drug for.

    You may find it helpful to ring and speak to Breast Cancer Now before your appointment. Their helpline is mostly manned by Breast Cancer Nurses. Their number is Freephone 0808 800 6000.

    I would ask at your appointment how you will be followed up post treatment. Some hospitals have an open follow up and other hospitals have a set time period when you will be seen.

    You can read more about this on our website here

    Breast Cancer Now also offer Moving Forward courses after breast cancer treatment and it can be incredibly supportive attending one of these. Have a look here

    It is hard getting back to your life having had treatment for cancer and it does take time. 

    Some patients find some counselling beneficial after treatment but it does not work for everyone. Macmillan offer a six week free course of counselling run by BUPA. Have a look at the details here

    If you live near a Maggie's Centre you may want to access some of the courses that they offer. You can see their details here

    I hope that some of these links will be helpful. If you feel that you want to make a complaint about the way that you have been treated then you could get in touch with PALS (Patient Advice and Liaison Service here

    Do also talk things through with your GP. They are there to help and advise you. 

    You are welcome to ring and chat any of this through with one of the helpline nurses.

    Our number is Freephone 0808 800 4040 and we are here Monday to Friday 9 am to 5 pm.

    All the best,

    Catherine

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