Trying to move on

Hi

Hope someone out there could help me please.

Had breast cancer in 2012, it was hormone receptive, on Tamoxifem for 5 years, very very lucky no nodes involved .

2020 came back again same breast, on Anastrozole for 5 years, just discharged from care at the hospital over the phone, asked if I could carry on taking it further just a blunt no!!

Went to pick my normal prescription from the Chemist in the Nov last year when it should have stopped, but the Annastrozole was in the bag so I took it, and have been to this day as my gp keeps prescribing to me, I’m so scared to stop incase it comes back again in my other breast, but I hate taking it.

Any help I would be really grateful for, I hope you can understand what I’m trying to say, and sorry for the long post.

Thank You

  • Hi Stretton,

    I am replying to you, as I know that the nurses are not here over the weekend. However I must state that I am not a nurse, just someone else who has had a couple of bouts of breast cancer. 

    I am sorry to hear that you have had 2 bouts of breast cancer and understand why you want to continue taking Anastrozole. I looked into extending the time that I took Letrozole for, when I finished taking it after 6½ years. I discovered that there was about a 4% chance of preventing reoccurrence, but that it didn't translate into living longer. Consultants do sometimes prescribe taking the tablets for 10  years, but this is usually only with high risk node-negative patients, or people with lymph node involvement at initial diagnosis. It is not recommended for low-risk node-negative  patients, as there is little benefit and extended therapy may not justify ongoing toxicity.

    Extended use of Letrozole significantly increases bone related effects, fractures, new-onset Osteoporosis, cardiovascular events and can worsen quality of life by reducing mobility. Guidelines advise never to extend the use of this therapy for more than 10 years, as toxicity accumulates and there is no evidence to support benefit beyond this duration.

    If you do decide to continue taking Anastrozole, you should do this in consultation with your care team, as you will need regular bone health monitoring in the form of bone density scans and/or the consideration of taking Biphosphonates.

    I see that you have had no lymph node involvement and am shocked that you were dismissed over the phone without any discussion about the benefits and side-effects of continuing this therapy. It is clear that guidelines for extending this therapy include carefully accessing the occurrence risk, using lymph node status, tumour grade and age. I don't know what type of breast cancer you had, but the fact that your lymph nodes were clear and that you have already had 10 years of endocrine therapy, suggests that this may be why you received such a definite NO!

    I hope that this gives you some explanation as to why you may have been refused, but don't hesitate to speak to your breast care nurse, as she will be better able to explain it all to you than I am.

    Please let us know what you decide. We are always here for you.

    Kind regards,

    Jolamine xx

  • Hi 

    Thank you so much for replying, I will try and get some clarification  this week. Will let you know how I get on. Thank you again   

  • Hi Stretton, and thank you for getting in touch,

    I’m really sorry to hear that you’ve been through breast cancer twice. Given everything you’ve experienced, it’s completely understandable that the thought of stopping treatment feels worrying, and that you’ve wanted to do everything you can to protect yourself.

    Many people in your situation describe similar anxieties, especially when a treatment has come to feel like a form of reassurance as well as medication.

    There are some situations where treatment may be continued for longer, but this is assessed on an individual basis and depends on several factors, such as the type of breast cancer, whether it has spread, and a person’s general health. Doctors will always carefully balance any potential benefit with possible long‑term side effects, including effects on bone health.

    Because everyone’s circumstances are different, the best person to discuss this with would be your breast specialist, if that’s possible. If not, your GP may also be able to talk this through with you, taking your full medical history into account. It can be helpful to share how anxious stopping the medication feels, as they may be able to offer reassurance or explain the reasoning behind their advice in more detail.

    You’re very welcome to get back in touch with us if you have further questions, or if you’d prefer to talk things through, you can speak with one of our nurses on the helpline. We’re here Monday to Friday, 9am–5pm, freephone 0808 800 4040.

    Kind regards,

    Jemma