Diag Aug 2010. Had Masc followed by Chemo and Rads and on Tamoxifen since March. Saw Onc 6 wks after rads ended (May) and again today and was told no need to be seen for another year by him. I will get Mammo next week then one every 2 years. I am in Scotland however surely we should be getting more checkups than this. Can anybody advise. I am worried sick as feel I have been left to get on with it myself.
Thanks in advance.
HI Haughtaj
Reading your post is like looking at myself in the mirror! I too had mx last August followed by chemo, rads and Tamoxifen since March! I’m also having a mammo next week!
Anyway, I saw the oncologist last Friday and was told to come back in 6 months, but to give them a call if I had any suspicious symptoms and they will see me before then.
I don’t know why I was told to come back in 6 months, maybe because I had heavy node involvment?
Deb
Hi no other checks in Brighton either just a yr mammo I’ve just been dx with lung mets which was picked up by my gp not onc he told me wasn’t concerned by my symptoms thank god my gp was if u any douts go make a fuss tc Laura
Hi haughtai, i’m only at the beginning of my treatment so don’t have any experience of this but i’m ‘bumping’ for u & hopefully someone will come along who can help x
Hi there, I’m in Scotland too and have my six month post surgery check in just over an hour! Top of my list of questions is exactly this - what follow-up as I’ve already been told three different things by three different people.
My six week post rad check was actually nine weeks and only then when I nagged for it! I have also been told 2 yearly mammograms (will check this today) whereas most English hosps seem to be annual. Scotland is different from England (I an English girl in Scotland) and it seems to me it’s probably all about how each trsut/board/nation chooses to spend its money.
Do you have open access to a BCN? I was told straight after my surgery by my consultant ‘if you’re worried phone us any time’ and I felt he meant it.
Will report back later when I’ve asked…
Good luck with ur checkup today Revcat x
Hi
After my 2 WLE last sept/Nov & rads in March this year I had a post rads check 4 weeks later (was told it would be between 4 & 6 weeks).
During this appt I was told 5 years of annual mammo’s (first being 12 months after diag - so will be early October). I will also have another appt with Onc in 4 months (actually this Friday) & then another 6 months later. In between I’d have my first mammo.
I’m in England; I don’t know if any NICE guidlines on this; I seemed to think they should follow you up in clinic for a year; but maybe this depends on what treatment you had. A colleague’s mum had a MX (her second) a few weeks before me at the same hospital & she was “discharged” from the clinic at her 4 month check so who knows what you should be getting.
I was surprised I actually saw my consultant Oncologist following my rads & not a registrar. I was diag with low/intermediate grade DCIS with no invasive attached needed surgery & rads only. Probably because I complained over delay between surgery & rads (4 months).
I’ll probably see a registrar on Friday; still as long as they can deal with the underarm swelling & irritation I get just before my “time of the month” I’ll be happy.
Take care
Lynne
Thanks hjv - all well (phew!) just a long wait as summer hols meant my wonderful BCN was covering at another hospital and had to drive over specially to see me and one other patient…
OK, the grand plan is…
6 monthly checkups for five years (alternating BCN and surgeon)
Mammograms on remaining side every two years
After five yeras goes down to annual checkups for another five years - so ten in total
Open access by phone to a BCN any time with urgent clinic appointments if appropriate.
I asked about oncology follow-up and she said that’s usually only people in clinical trials or research projects (we have a lot of those as it’s a specialist cnacer hos;pital that does our chemo/rads)
The logic is to get you clear of hospitals and on with life whilst giving you a safety net and reassurance.
I don’t know for sure about NICE but as far as I can tell it doesn’t apply in Scotland… there do seem to be differences in provision (in all areas of healthcare) each side of the border. it’s not about better/worse just dufferent (even if that’s no consolation if you find yourself on the ‘wrong’ side of the border for some treatments.
Hope that helps a little bit - the main message seems to be ‘if worried, shout’
I had a check up with the onc a few weeks after rads, then saw him again 4 months later. I will have a mammogram each year and see the consultant with the results of that, then in between appts with the consultant I will see the onc once a year, so I’ll be checked by one or the other of them every six months. That will carry on for 5 years and I feel comfortable with this level of check ups. I wouldn’t like to feel left on my own for 2 years at a time.
Every region does its own thing. I am treated in Leicester. I have mammos every 18 months - I think that goes on for six years and then I will be on the standard 3 year surveillance, and I am seen once a year by a consultant - breast surgeon one year and oncologist the next. Again I think that goes on for six years when all being well I will be discharged.
Thanks for all your replies. I can phone my BCN any time so thats fine however feel that a year is far too long between onc appts. Mammo next week however as original lump wasn’t picked up by first one I will still be worried even if told all clear. Really thought I would feel happier at this stage.
Thanks for the replies, I know i can see my BCN and get urgent appt if need be however it would be nice to be seen every 6 months instead of 1-2 yrs. As it is I have a mammo nxt week but as this didn’t pick up lump first time I don’t have much confidence in them and they won’t give ultrasound either.
Oops, thought my first post had went missing!!!
I’m in Bedfordshire.
I was DX on December 15th, WLE & ANC on 24/12/11, followed by chemo, rads & Tamoxifen.
I had a check up in July, four weeks after rads and had a good chat with my onc. I don’t know if it’s standard for our PCT (and it looks as though I’m getting checked more frequently than most of you) but the plan for me is:
Appt. with surgeon in November (already booked)
Appt. with onc. in March (already booked)
They’ll continue to alternate four months apart for two years, after which time I’ll still have regular checkups but they’ll be with the nurse instead unless there are any problems…
I’ll have mammograms annually for five years, byt which time I’ll be 50. I’ll then go to evey three years.
I’m having Tamoxifen for five years then they’ll check my bloods and will probably switch to an AI for another few years (I don’t mind that - I quite like the idea of extending the safety net!)
Jane xxx
I also found this odd, as there was no kind of ‘wrap up’ meeting. I had a clinic appointment about a week before the end of my rads (June), and asked what happened next. They just asked if I had an appointment with the surgical team for 6 months later. I have one on 4th November, which is a year post reconstruction. No-one has mentioned mammograms or anything. Leaves you feeling a bit abandoned, kind of ‘we’ve done everything we can now go away’.
I have been told that I can contact my BCN if there are any worries, but I wasn’t given any advice on what to look out for.
Jen
I know exactly how you feel. I feel like after all the treatment they can’t wait to be rid of you. And even when I questioned being seen so little I was told no need to see you anymore.Thought I would feel happier somehow.
Hi, i am also in Scotland. Was diagnosed July 2009, lumpectomy, chemo, radi and now on tamoxifen and zoladex. Since end of treatment i have had a check up every 6 months, and yearly mammograms. Had 1st check up and mammogram 6 months after radio, which was 1 year from diagnosis, and it has been every 6 months since then! Don’t know why they only giving you yearly check ups, and 2 year mammograms? Speak to your BCN and see if they can get it changed for you, it will put your mind at ease, i like the reassurance of being checked every 6 months!! 
x
Hi all
I’m also in Scotland, I was diagnosed in Nov 2009 and just had my 6 monthly check at the breast clinic. My last mamo was last summer so I was told I was all up to date. I expected annual mamo’s so I questioned this and was told that they do not like to over radiate us unless anything has changed. I think I’m reasonably happy with this as my first mamo did not pick up the cancer and I know I can get quick access to the team if I spot any changes.
Sarah
Hi All,
I live in Cornwall,was DX in 2007 Had Surgery/Chemo/Rads now on Hormone Therapy,since finishing main treatments my aftercare has been annual appointments with my oncologist and annual appointments with my Surgeon/Breast Clinic,so am seen by one or the other every 6 mths ,also have 2 yrly mammos for a total of 10 yrs (even though im now in the screening age) after 10 yrs will have 3yrly national mammo screening for “life” not ending at 70 which is currently the screening program, have also been told that even though i will (hopefully) be discharged after 5 yrs (2012) i will still remain a patient for life and can ring up if i have any new problems/symptoms and be seen quite quickly without haveing the need to go to my GP for a new referal.
All the hospitals seem to be very different and there just doesnt seem to be a “standard” aftercare program in the UK which doesnt seem right to me,so maybe its just a postcode lottery again.
I did though question why the no yearly mammos at first but was told the same as Arrangirl about not liking to over radiate , so it does seem all hospitals follow different guidelines and practices, but other than that im quite happy with my aftercare arrangements,though i do think all hospitals should follow a standard practice for everyone.
Linda x
Yes - there is no one standard; whether this is to save money or for whatever reason, it is somewhat disconcerting.
Like Roadrunner who posted earlier, I have been treated in Leicester where mammos are only every 18 months plus a yearly hospital visit for 5 years. This alternates between oncologist and surgeon. All a bit tokenistic in my view - if you are only seen so infrequently and just for a manual examination, why bother at all? Why not have yearly mammos and NO hospital apps- just an ‘open door ’ where we could self-refer either direct to a BC nurse or thro’ her to a doctor?