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Now that’s scary!!! Here I am bc 14 yrs ago annual check up’s since
2nd dx other side, 6 months after clear mammo ( last June) already in lymph nodes now having chemo…AGAIN… doesnt bear thinking about, I would on an annual basis go to your GP with some cock and bull story about pain etc and get checked anyway… J XX
I was going to say exactly the same. It seems we have to have “symptoms” to be properly checked out. Its the same story for ultrasounds for younger women, they are just doing mammogramms now in a lot of places. Ms molly, bet you are still in shock. But glad you’ve got to your 3 years though!
im presuming you will still get annual mammograms as you should have them for 5 years or longer is you are under 45 at diagnosis and obviously if you have any concerns you need to get back in touch with them but it is pretty poor when some places are continuing with clinical appointments for 5 years.
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Hi would be really worried about this, only just had 1st post dx mammo. AND at routine mammo when I was Dx no one( me, surgeon, Onc, radiologist) could feel the blinking big lump that the mammo showed.So feel rather lacking in confidence about my breast awareness J
Hi msmolly,
How awfull to be told that you have been discharged after only 3 yrs when we are all told at DX that we will have regular follow up appointments and mammos untill the 5 yr mark,i think this is disgracefull and think if it were me i would be raising this issue with the powers that be and also my MP,i suspect like you say that it may be more to do with a “Cost” cutting issue rather than a change of policy which is unacceptable.
Ive just recently had my 4yr follow up in March and have already been given my next appointment for March next yr which will take me up to the 5ys Discharge mark this appointment also includes a mammo, (though i only have mammos every 2yrs not annualy) i still also have yearly appointments with my onc so am seen every 6mths by one or the other,and was given a letter saying that although i will be discharged at the 5yr mark i will still have 2yearly mammos with the breast clinic for 10yrs even though ive just recently reached the screening age.
Im realy not surprised that you were shocked and feel angry about this i would be too, it realy isnt good enough and is extreamly worrying for all of us to know that some PCTs are now changeing policy and reducing our follow up care,like others here have said already i think personaly i would still be makeing sure that i got seen one way or another.
Its realy not good enough.
Linda
Hi Ms Molly have reflected some more on this and it does semm like this is a cost cutting measure rather than an evidence based one I have just checked the NICE guidelines ( for early and locally advanced BC)and these state that ‘you should be offered a mammogram every year until you reach the age when you will automatically be included into the NHS breast screeningProgramme. If you are already in one of these screening programmes when you finish treatment for early or locally advanced breast cancer you should be offered a mammogram every year for the first 5 years’ Note that in some areas the screening starting age is 47-48 years rather tahn 50yrs. Not sure how old you are but in any case this covers both those much younger than the screening starting age and those already at that age Hope this gives some info to challenge the discharge ‘policy’ with.And hopefully this will give some leverage for those who have had a MX tooJ xx
ms molly they have to give you annual mammograms of the unaffected breast for at least 5 years… that is the NICE guidelines (its 10 years at my local health board)… i think they are referring to your clinic appointments only and not radiological follow up… it is correct that the majority of recurrences or new cancers are picked up by the individual themselves and recurrence rates are very low following a mastectomy too… but you know your breasts better than a nurse… mine was missed twice by clinical exam in the space of 4 weeks by my nurse.
do speak to them again and get clarification and if they are saying no mammogram then you can tell them that nice says yes mammogram for 5 years minimum.
take care
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The way around this as i see it is if you are worried about anything pester the GP and immediate referral to the hospital. It will cost them far more than a 5 year follow up.
Also folks use your vote and use it wisely at the general and local elections.
Oh and as far as deals go i had a deal with the government many years ago that i would pay NI contributions and get a pension at 60 that has now been put off until im 66 as i fall in that mid 50s group so never ever trust politicians with anything ever ever, they are dirty lying cheats that cant do any other job and love screwing peoples lives up.
This is worrying for any primary BC ladies who expect/rely on the 5 years of followup mammos and consultant appointments. Just to add my bit, at my routine followup mammo 4 and a half years after my primary was treated, a recurrence was found that I had no idea was there. Definitely had not been detected by me despite my primary only being able to be felt by me and none of the medical staff. Unfortunately after further scans it was found that my BC had spread to my bones. If I’d not had that routine mammo as part of the followup procedure none of this would have been found as I had no symptoms of either the recurrence or the bone mets and I was 3 years under the age of mammo screening. I dread to think how much worse my mets would have been.
Nicky
Msmolly
I think it is awfull that your hospital has cut off ALL follow up care after only 3yrs , i think if i remember rightly like me you are still taking a AI? if so you are still recieving BC treatments perscribed by your oncologist so how can a PCT justify discharging people? i think its disgracefull, so where do you go if your having problems with the meds “the GP?” in my expierence GPs have little knowledge about any BC treatments and certainly dont have the right kind of expierence needed to advise you on these issues.
I read somewhere that an average GP practice sees 2 breast cancer patients a yr, if thats true i certainly wouldnt be feeling very confident about getting any advice about any problems i may have re treatments from them.
I would definately ring your hospital up and confirm again what youve been told and tell them your concerns about all of this because as you say even while most “lumps ect” are found by the patients themselves, after a BC DX it is very reassuring to know that someone medically qualified in breast cancer checks you out properly.
I asked once at my hospital what would happen after i was discharged at 5yrs and was told that although i would be discharged at 5 yrs i would always remain a patient of theirs and could ring up anytime and be see quite quickly if i had any concerns without the need to go through a future GP referal route,i realy think this should apply to all BC patients .
I hope this is not the start of further trivalising the seriousness of Breast Cancer and just throwing people back into the goldfish bowl to get on with it,god knows theres little support as it is after BC treatments have finished!!
x
There was talk not long ago about aftercare being done by GP’s rather than hospitals as it was deemed a better use of resources! As someone has already posted the flaw with this is that most GP’s have a limited knowledge of bc and certainly at the moment mine don’t want anything to do with it they just say talk to the hospital.
Mods have BCC a view on all of this? I would be interested to hear if there are any discussions going on with the government about follow up treatment.
Pam
Hi Pam
I have forwarded your query to the relevant team and will post their reply once I receive it
Best wishes
Lucy
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I was told at my last appointment in November (one year after diagnosis and subsequent bilat mastectomy) that I needed to have follow up appt in Nov 2011 and if everything was OK then I would be discharged after that - two years after diagnosis. I have been offered no other followup or scan (grade 2 IDC, no nodes) & told if any problems see GP. Obviously we’ll see if that happens but I was also under impression that I would get 5 year follow up even though mammograms are no longer appropriate.
Post code lottery again.
Cheers
maggy
I have just had my 4th annual check up with my oncologist and was given my appointment for next year which will be the last one. I asked about mammograms and was told that after next year they will be every 2 years (although I am in the age group for 3 yearly screening). I was also given the news that because my cancer was very aggressive, I will almost certainly have to stay on Aromasin for another 4 years (making 7 and half years on AIs in total).
So it doesn’t look like the cost cutting has struck this area - yet. But maybe it will before next year’s check up.
Anne
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