Annual Follow-Up Checks
Annual Follow-Up Checks Hi,
having recently raised a query in the forum on Secondaries (worried about a cough), I’m interested to know what sort of follow-ups other people have been getting - both NHS & private - once they have reached 5 years cancer free as I’ve seen mention of various scans etc. that I’ve never had apart from a chest x-ray prior to mastectomy & a bone scan 1 year after diagnosis when I was worried about back-ache (all was OK).
I think I’ve been on annual checks plus mammogram & ultrasound (I have cysts on my good side) since 2 years after diagnosis & it’s now 8 years on. In our hospital we used to see a consultant at every annual check - alternate surgeon with oncologist. This Jan I was due to see a surgeon when we were advised that following the departure of the head of the breast unit (my original surgeon), the appointments were changing & anyone over 5 years from diagnosis would see the Specialist nurse instead. I had also been advised that once we reach 50 we are part of the annual mammogram list & only get to see a doctor if we have a problem & ask to see one.
I really felt unhappy about the change as I’m worried that I may not notice any reoccurrence or secondaries. I have had BUPA since the start but chose not to use it for my initial treatment - I don’t regret this at all - but since the change in procedure I’ve now chosen to see the surgeon, I had been scheduled to see, privately. Although I had mammograms (on both sides this time), ultrasound, aspiration of my cysts, I didn’t have any scans.
So I’m interested to know what sort of checks are other people at 5 years plus after diagnosis - NHS & private - & do you have any routine scans?
Thanks.
follow up I’ve recently attended a focus group on follow up. The evidence is that follow up has no effect on mortality so it’s done for other reasons. It seems the main reason is to reassure women. NICE guidance say it is to pick up any primary cancers that may occur or any recurrences in the breast which are not secondary breast cancer.
Secondary breast cancer is found when women have symptoms and by the time these occur, the cancer is not curable. Follow up every year isn’t likely to coincide with the development of symptoms and finding secondary breast cancer earlier when someone is symptom free does not affect the development of the illness.
therefore they are not going to test you unless you have symptoms
I haven’t bothered having follow up since I was diagnosed in Dec 2003 and I have to say I am pleased as the appointments are never on time in the NHS and if there’s no difference to my survival I’d rather go to work instead
Mole
Follow up I had BC for the first time 17 years ago. I have private insurance cover and had annual mammograms. Last October my surgeon decided to include an ultrasound as well as a mammogram in his annual check up procedure. My mammogram was negative but the ultrasound showed a small lump which was another primary in the same breast. I have now had it removed and am on Arimidex for 5 years. I am wholly in favour of annual follow up and had I not had the ultrasound it could have grown and spread.
Shared concerns Hi Zennor
I have raised similar worries in a post on the ‘after the treatment finishes forum’. I am suddenly panicking because I have been switched from annual mammograms to the NHS breast screening programme at 3 yearly intervals now I have reached 5 years post diagnosis. It has scared me too. I couldn’t feel my tumour until it was more than 3.5 cms, lobular cancers are particularly difficult to feel and have an increased risk of occurring in the other breast. Mammograms aren’t great at picking them up but better than nothing
After at long last having settled into being a little bit more relaxed about my cancer I am just panicking all over again. I have spoken to one of the BCC nurses who was really helpful.
Mole you have always been wonderfully objective and I wish I could share your very sensible approach.
CK xx
Follow ups Hi Zennor. Procedures at my local hospital are as outlined by mole. As I’ve had a recurrence I am now on 6 monthly check-ups and yearly mammos, but before that just saw breast surgeon annually and had annual mammo. I was just ‘signed’ off his list after 5 years when I found a lump on the same breast which turned out to be a recurrence.
Personally I much rather have frequent check-ups so that I know what’s going on. Yes, I agree with mole that the outcome with seeondaries is the same irrespective of check-ups periods, but a recurrence can easily be missed and I am therefore inclined to enourage women to ask for regular checks, even if it’s with their GP.
Birgit
Hi - anyone tell me when you get called for your first mammogram after diagnosis - is it 12 months from date of diagnosis, or from end of chemo and rads? I’m worrying cos I was dx in April 06 and haven’t been called for mammogram yet. Will ask when I go for next check up in July/Aug. Love and hugs, Jean xx
Jean
Yes, I was told it was time for a mammo once 12 months had elapsed from dx. I told them what to do with it though since neither tumour had shown up on the mammo at dx. I pushed for MRI scan and got it. Do the same, as only 80% of abnormalities shown up on mammos - they told me that when I was dx.
Thanks Dahlia for your reply. Will have to chase them up, because nothing has been mentioned about a mammo and I was 12 months since dx in April 07!! Thanks for the advice about MRI scan - think will do the same.
Love Jean xx
Where I’m being treated I’ve been told there will be no mammograms, scans, bloodtests etc for a year after treatment. All my onc said was that I should (hopefully) be at the safest in that year after as everything had been thrown at it and also the treatment could throw up wrong results which of course can be worrying. So perhaps it’s different according to your health authority. Wishing you well.
Shorty2