Just seeking experience of others for reassurance. I’m 5 years post diagnosis (triple positive) and all good so far. Have had a few scares finding lumps that needed checking but otherwise fine. However, I am on 10 years of anastrozole yet I’ve just had my 5 year discharge phone call from the breast care navigator (as it’s called in my area). I have always valued knowing I can call them with concerns and be seen quickly if needed. Now I feel a bit cut adrift. She did say still to call and they’d do what they could. What had been other people’s experience- and any advice, please?
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Hi @JeanAnn. It’s completely normal to feel this way after so long. I would really recommend reaching out to our nurses, sometimes it can just be helpful to talk things through. You can reach them on our free helpline 0808 800 6000, and you can call them as many times as you want or need.
Thinking of you,
Chloe
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Great news! My breast cancer was triple positive as well and will be on letrozole for another 4 years after being on it for 6. I hope you’re doing fine! 
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I think they are starting to realise now that extending the treatment to 10 years might mean there’s still a need for support . I had a similar experience with Ophthalmology as retinal vein occlusions in 2018 I was last seen at the Eye clinic a year ago because I suddenly developed a crop of floaters to both eyes. At this point I was told that there wasn’t anything further they could do and that he was discharging me - but he also said that if I were to have a problem I could ring the appointment number and explain that I had been a patient previously and they would see me. It has made me feel insecure .
In my area we have a breast cancer support group that meets 4 times a year and is organised by the BCN service , as far as I know some of the people who attend have technically been discharged but anyone there can speak to a BCN one to one . Is there something like this in your area ? Alternatively are there any peer support groups in your area or a Maggie’s centre xx
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Thanks for your reply. There isn’t a Maggie’s centre near me. They have said I can call if I have worries and they’ll ’see what they can do’. I just felt reassured by being able to see someone and get checked if I found anything (previously I have found 2 new lumps, both post- surgical changes, fortunately). I’ve just hit 70 too so standard 3 yearly mammograms stop- I can continue with them but have to contact them and request them myself. And I have my last Zometa infusion this week and feel, who’s going to check my bone health? Just everything being withdrawn. I am capable of being my own advocate but valued the backup of being able to call the BCNs.
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I’m surprised that you’ve been discharged before you’ve had the last Zometa rather than after strictly speaking I don’t think they should have done that . I do think if you contact them about a lump or something they will still try to get you checked out.
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Glad you have made the 5 year milestone
If you have any concerns, not just breast and under arm lymph nodes then yes use Breast Cancer Now nurses and GP.
Not wanting to scare monger but awareness and action are key.
I waited to long after my 5 year ‘sign-off’ and secondary / metastatic disease had set in before I went to my GP and got a re-referral…..
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