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CHECK UPS AFTER TREATMENT FINISHES
Mon, 15/08/2011 - 21:51
#1
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.
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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?
Hi
Sorry to resurrect an old topic but I am wondering if anyone else has been left with no check ups at all? I finished treatment a year ago (chemo, mastectomy x2, radio) with ongoing recon. I had appointments booked for the next 3 years for check ups but was told they have all been cancelled. I am to see my GP if I have any concerns. I asked when I could stop taking Tamoxifen and was told that when I think I have gone through menopause to ask my GP for a blood test, and if I have, then I can stop.
I have had a few scares recently and have sought advice from my GP who has been as helpful as they can, but I am not confident in their level of expertise. I am just waiting for a bone scan after consulting my GP due to back and hip pain.
I was never told what symptoms to look out for and find it really embarrassing to keep going to my doc with symptoms which turn out to be nothing (thankfully).
I know I am being paranoid, but it is easy to become over cautious when I am reliant on myself for recognising symptoms.
I live in the Bristol area and wondered if anyone else was in this position?
Hi Pippadidoodah
That sounds awful - no check ups at all? I'd kick up a fuss about that and try insisting that you get check-ups. It seems to vary around the country, some it's annual checks, I'm lucky and get check-up every 6 months alternating between the oncologist and the breast surgeon. I get a mammogram just before I see the breast surgeon each year for 5 years.
I too am on Tamoxifen until I'm post-menopausal but I've been told that I will have to have 2 or 3 blood tests that all show I'm definitely post-meno before I'm switched to aromatase inhibitors. It seems that you're suffering from a lack of info.
Have you got a BCN who you can see with any worries or when you need more information?
Hi CheshireCheese
Thank you for your kind words. I do have a BCN but she is ridiculously busy and somewhat inaccessible because of this.
Having read that most people have at least some check ups, I am going to ask again and if I still get nowhere, I think I shall take it further.
Thank you for the motivation!
Pippadidoodah
Checkup must continue until and unless your all problem will be solved. This will help you more.
I went to see my Onc today and was told that they are discharging me! I am 2 years Post Diagnosis and had Chemo, Mastectomy and Rads. I have had appointments 6 months apart with the Breast Surgeon and Onc alternating. I've been on Tamoxifen for 2 years and now they are changing me to the Aromatose Inhibitors. I'll still see the Breast team but it's a scary feeling even though I'm meant to be pleased! I was really emotional about it all.They said to speak to my GP if I'm worried but he was a fat lot of use telling me that the initial pain under my arm was "just a nerve" and my Lump was "Normal Lumpy tissue!"
Doesn't fill you with confidence!
Good luck to everyone xx
This does seem unusual Lynberi; what do you mean when you speak of the "Breast team"
Is is possible that they are introducing some new system in your health authority do you think?
Do you know of other people who have been discharged as you have been- so soon after active treatment?
When I went for my last 'surgical' check (3 years post surgery) I was seen by Nurse Practitioner- I think this is increasingly common- and as all that is done at these check-ups is a manual examination, I think the nurses may be more thorough - and more sensitive - than some of the surgeons.
I next see my oncologist (or not) this August- when it will be 2 years since I last saw him.
Pippa.di.doo.dah. Hi, I'm in your patch and yes it does seem to be a bit hit and miss
especially agree the BCNs are kind but utterly impossible to access. I had been on annual outpatient follow-up like Cheshire-cheese's so far but currently have an out of synch problem I am trying to resolve. I totally didn't see the point going to see a consultant (or more likely some junior underling) with a 46 week old mammogram, and they won't re-image me before 52 weeks... is it really up to the patient to try and arrange her own mammograms??Spoke to a manager type person the other day who agrees it's not ideal, they are looking into a new way to schedule these things, but surely it can't be that difficult?! I had a good old rant! They are also considering introducing various trials of alternative treatment/followup pathways eg seeing the specialist nurse in a Group of patients (uh, no THANK-YOU) but she also said it's mostly patients themselves who discover new/recurrent symptoms so what they need is more actual imaging and better quick-access routes back into the active system, which it sounds like isn't working for you. And good info about what exactly we should be looking out for. They are aware of how some gatekeeper GP can make access difficult, one of this lady's roles is to establish common standards and treatment protocols wherever you live in the region, be it from Taunton/Exeter up to Gloucester and whether you live near a city or out in the sticks. The GP should not be doing delaying tactics they should be passing you straight on to the experts. But being seen routinely by the consultants in the absence of either new symptoms or new diagnostics (mammograms, scans, blood tests etc) is of little value for detecting reccurrences and is little more than a "didn't we do well" club, you would do better to go off for a round of golf with them, and if there is a new problem you should not be waiting till the next existing appointment. Especially if you haven't got one, I really can't understand why that would be. Best of luck.
Hymil- very interested in what you write about new ways of scheduling follow-on checks.
You will see from my previous posts I think the present system is a real waste of valuable specialist time - never mind that of the long-suffering patients waiting in huge 'annual' clinics for hours.
In my own case I would dearly like to have been seen more frequently straight after my active treatment finished (instead of having to wait 9 months) - rather than the current one -size fits all in this area with no co-ordination between mammos and hospital visits and the routine follow-ups seem like box ticking exercises
I have raised this with my onc. in Leicester and he said it was indeed rare for recurrences or secondaries to be detected at these clinic visits- patients find the signs and symptoms themselves or thro' routine mammos. He as good as said that he agreed with my views re the routine clinics!
At the risk of being boring can could I repeat my previous suggestion that patients should have yearly mammos & then NO routine appointments after the first year- just an assurance that they could self-refer to the hospital if they had concerns? I would prefer the BCNs NOT to be the 'gate-keepers as they always seem so busy and inaccessible- but if the doctors and their 'attendant' nurses in the OP clinics were freed up - maybe there'd be monies to be re-allocated for this kind of service- it's not revolutionary is it?
Hi Ladies,
This is something thats been on my mind for a while now, I finished rads on the 25th of Jan had an appt. with onc soon after he was happy with how the mx/rad site looked and I forgot to ask him when my next CT scan would be (foggy memory due to chemo) they told me because I have secondaries I would intially have a ct scan every 3 months and then gradually if everything is ok move it onto every 6 months, well its been 5 months since the last ct scan and I really want to know whats going on with the secondaries on my lungs, so went to GP (no point in seeing BCN told me she was only there to deal with the surgery side of things her job is over now!) and he is now writing to my onc. asking for a ct scan, I really hope I don't have to keep on going like this forever its gonna do my head in! I still get herceptin administered at home and take tamoxifen daily, the last scans showed the mets were tiny and now stable or unchanged, I still need to know whats going on with my lungs, every cough or breathlessness sends me on a worry bender.
Very interesting article comparing differing models of follow up care. I am now discharged from follow up 2 years post dx.
http://www.healthpsychologyconsultancy.co.uk/documents/Davies_and_Batehup_2011_FollowUp.pdf
Very interesting article on follow up schedules and cancer survivorship based on recent comparison of different models. I am now discharged 2 years post dx.
http://www.healthpsychologyconsultancy.co.uk/documents/Davies_and_Batehup_2011_FollowUp.pdf