Hi all,
I was wondering what follow up plan people had after they have finished their treatment for TNBC?
I have been told that I will have an appointment with the breast care team in a year and all being well I will be discharged, not yearly mammogram, no further CT scans, nothing.
Is this normal?
I feel like I’m being left to get on with it and it’s very scary.
Feedback on what others have been offered would be greatly appreciated.
Thanks x
Nikki, I was seen twice a year by my team after completing treatment for tnbc this only dropped to once a year after 3 years post treatment and had yearly mammograms, I only went onto mammogram every 18 months after 4 years clear but I paid to have a private mammo after a year, 18 months between mammograms was something I wasn’t comfortable with so did have one after a year and then the nhs one 6 months later too and I will pay private again if the nhs give me an 17 month lead time again. I was 45 at diagnosis so not sure if age is a factor in teams decisions. Hope this helps you and do go back to them and advise them your not comfortable with the long term plan. Luckily the trust I am under stress it into all that any concerns or anything ring them and they will get you in. Hopefully you get some more support from yours 
Shi xx
I’ve insisted on annual ultrasound as well as mammogram as my tumour didn’t show well even on 3D mammogram. But I think we get open access to the breast clinic. So if I feel freaked out I’ll be back !!!
Thank you both for your responses, I was doing really well until I was told that I would be discharged in the years time now I’m struggling to sleep it’s all I can think about now I feel I can go back to the hospital and ask for more. Thank you so much. x
Hi NikiR, I was diagnosed with TNBC just over 2 years ago. I had a review 3 weeks after a year of treatments and surgery ended. I had a further review a couple of weeks ago when I was told there would be no further reviews but to get in touch if I have concerns, a letter I then received said discharged. However I will be getting yearly mammograms for 5 years, my first one was last year. I have read that NICE do not think there is sufficient evidence that the yearly reviews pick up many issues and they suggest instead these should be patient led i.e. contact us if you have a problem. In my case I had a Wide Local Excision (lumpectomy) and my breast and armpit has lumps and bumps so I’m not confident I’ll spot something, therefore I may well end up contacting them more than necessary. Sadly I think it all comes down to cost but what about those occasions when things were picked up and wouldn’t have been otherwise. I’m afraid I have no confidence that decisions made by NICE and the NHS are always with the patient’s health in mind. Maybe that’s rather cynical of me but that is how I feel after my experience during the last 2 to 3 yrs. I am grateful to now be in recovery but I’m always on the alert. My Very Best wishes to you, my only advice is you may need to fight for what you need xx
Ps I think you should still have the yearly mammograms for 5 years xx
Hi NikiR
I had TNBC in 2020, after treatment I was seen once by my BCN and given a booklet on how to deal with everything. That was it although being the covid year it really was a solo journey so no further appointments just an annual mammogram.
It seems to be different for most people, no set routine across the board.
Best wishes.
Take care xx
I think your absolutely right about NICE, they consider the cost and capacity issues before they publish guidelines.
Like the interval between surgery and chemo was removed from the latest BC guide because Trusts just couldn’t meet it
Indeed you should.
Your GP can mark your notes to say that and if the hospital doesn’t organise them then the GP can request them xx
Thank you all so much, I will make sure I push for more.
Best wishes all xx