Normal?

[SurreySurvivor]

I had my first Oncology appointment since coming back to the UK. I'm post chemo/radiation/targeted therapy. I still have endocrine therapy for another 9 years. In the USA, I saw my Oncology team every 3 months and had regular scans. However, when speaking to the Oncology doctor here, I was told that they wouldn't be seeing me again and that my local GP will just fill my aromatase inhibitor script for the rest of the decade. Is this normal practice here?

[Lainey66]

The health system is totally different there. The NHS are basically 'broke' (financially in the mire). I am in Ireland and also see mine every three months. One of my dear friends was diagnosed a month after me. I was 4 months into treatment and had had my surgery before she had even got to see her consultant after her initial diagnosis and before her treatment started, once chemo ended she too was put onto yearly visits. have you considered going private? I am not sure how expensive that will be. Lainey xx

[SurreySurvivor in reply to Lainey66]

I will look into it. In the meantime, I guess I will travel up to the military base. It is 2.5 hrs each way. But if that is what I need to do, so be it. I'm in a phase 3 clinical trial that requires at the very least blood work and an ECHO every 3 months for another 6 years so that they can keep my data on record and help get the medication approved for others. So, I'd like to keep up with that.

[Lainey66 in reply to SurreySurvivor]

Is there a chance you could do it as an 'over nighter' and treat yourself to a nice meal and hotel break once every three months? Good luck with your recovery I wish you all the best 👍👍👍

[Jennymary]

I was last seen at oncology in March 2014, when I was told I'd be seen again in 2018 which will be 5 yrs after surgery and hormone tablets, I'm taking the attitude that if they wanted to see me earlier they would x

[SurreySurvivor in reply to Jennymary]

Wow! Yep. Very different here.

[Debster2016]

Hi there and welcome back.

I'm in my 3D month of tamoxifen after the whole package during which I asked many questions! One of which was how will we know of its come back and the answer was that it's up to me to be self aware - with self examination - and I'd have an annual mammogram for 5 years instead of the usual 1 but no scans, and to go to my gp if anything was out of the ordinary. To which I replied "So the NHS is reactive and it's up to me to be proactive" which is what it is.

I am not at all reassured by this as I'm scared "it" will pop up somewhere else and be missed without a scan but there is a lot of awareness these days that catching cancer early makes it easier to treat so I can only assume that anything picked up by an annual scan (mammogram) is considered early enough to detect and therefore treat anything. I also wish I got blood tested to assess my 'markers' but I'm not.

I don't know what would be different if I was in a clinical trial as you are, but it makes sense to receive more regular and frequent attention, but that may not be the case if you are taking part in a trial in a different country.

Sorry not to be able to help moreut thinking of you anyway and wishing you well xxx

[SurreySurvivor in reply to Debster2016]

Strangely, the trial (and my boobs) are in Italy. But, it was overseen by my Oncology Team in America. I guess I thought since the bulk was done overseas that it would be easy moving back to Europe (while the U.K. is still in Europe). Oh well, guess I was wrong. It does concern me about reoccurrence staging and longevity compared to other places which have a more oversight.

Thanks for sharing.

[Lorraineam]

I was told the first 2 scans would be 6 monthly then if they were still clear would drop down to annual scans

[SuePS1958]

Hi I am in the Midlands - nearly 4 years on. I was HER2 positive so no ongoing GP support re tablets. I have a mammogram once a year (for 5 years) and nhs appointments every 6 months - once a year with the oncologist and once a year with the breast surgeon. Research (Warwick Uni Mammo50) is ongoing looking at the benefit of ongoing mammograms vs the 'scanxiety' of scans. Recurrence data show that very little is identified via mammograms - the vast majority is found from symptoms identified by individuals knowing their bodies. My friends taking aromatase inhibitors all do it via their GPs.