follow up care

Hi all,

I finished chemo in late February having been treated in the UK and was told only follow up would be appoint each year with onc and a yearly mammogram. I moved to Dubai in April and made contact with an oncologist here (he his German), within one week of seeing him I had a bone scan and CT scan and full blood work up.(which were all clear thankfully) I will see him every 3 months for next two years with bone scan and CT scan repeated every 6months for at least 2 years. I am so surprised at the completely different attitude to follow up care - it is nothing to do with money as my husband is in UAE army so am being treated at a military hospital. Wonder why the complete disparity infollow up

Hi arlene
We were in Dubai this year for a holiday (actually the week after I was diagnosed with breast cancer). We only had to take a look around to see the difference in the standard of living out there compared to the UK and it was fairly evident in this country we are the poor relations!! It was our understanding that the health care system in the UAE is far superior to ours and yes you are right it is not about money - everyone receives the same high standards of care yet pay no income tax or social security contributions (lots of oil)!!

Yesterday I had my first follow up appt after radiotherapy treatment had finished and thought I would see my oncologist - not so. I have to wait until January 2008!! Basically we have decided to pay privately which means at least we get an earlier appointment…

I wish you well


Having regular follow ups has not been found to make any difference to mortality so once I realised this (from reading the NICE guidelines published in 2002) I discharged myself immediately after I had finished radiotherapy and only go back if I find any symptoms. I prefer this as I work full time and found appointments were never on time while I was going through treatment. Also I gather follow up is extremely rapid and usually carried out by different people each time. They must know in Dubai it is a waste of time but probably do it to reassure women and to get more money.

If you don’t bother with follow up you can put cancer behind you and it will save the NHS the cost of an unnecessary appointment. I’d rather resources were targeted where they really matter, and early diagnosis does make a difference to mortality. At the moment a lot of people don’t get seen within 2 weeks and diagnosed quickly, so I’d rather see the resouces go there.


Lorraine - I did see an Oncologist after I finished chemo and rads, but he then discharged me!! I was flabbergasted. Have seen him once since, for a private HER2 test, as this was not done in 2003 at my hospital. Thankfully I was negative, but worth the £120 it cost, just for peace of mind. He also told me in no uncertain terms, that if I was HER2+, he would not prescribe Herceptin, as it was too long since I had chemo.

I now see my bc surgeon (always him) annually, but he will only do bi-annual mammos, as his opinion is that radiation can cause breast cancer. Don’t get that one - why do we have rads if by doing so, it can cause the very disease we are trying to treat? My husband thinks if is a question of financial resources. As my 2 cm tumour, and DCIS, was not palpable I had no idea anything was wrong. It was seen on he normal 3 yrly mammo we get after 50 yrs. I believe that if I had had annual mammos, my tumour would not have been so big, nor had spread to my lymph nodes.

After speaking to a couple of younger friends (in their early 50’s) who pay £85 for mammos in the years they don’t get the freebie, and none having had cancer, but close friends who did, I am going to arrange a private mammo with the Nuffield. I am concerned that if I get a recurrence (non palpable), I won’t be able to feel it, and ask for help on the NHS. As my friend said: “you pay for an annual service on your car, so why not your body?”. That kind of hit home with me.

I have recently learned that a friend who had a mastectomy 12 yrs ago for bc (leaking of her nipple, tumour behind the nipple) that she now has a similar recurrence in her other breast and is to have another mastectomy. My hairdresser, who had invasive bc 5 yrs ago, was dx 2 weeks ago with another tumour in the same breast, at her 5 yrly mammo. These two recent instances of recurrence have made me more determined to ensure I get an annual mammo, even if I have to pay for it. Oh, that we could have such wonderful treatment as in UAE.

Perhaps in Mole’s case, she had a palpable tumour, and if she has a recurrence, will be able to feel it and go back to her surgeon. When the tumour is non-palpable, I don’t know how I would know if I had a recurrence, without having the security of annual mammos. I would be interested to learn of any other women who had non-palpable tumours, and went on to get a similar recurrence. Two years is a long time I feel, for a tumour to be growing. My tumour was found at my 3rd, 3 yrly mammo when I was 58 yrs. In the USA, my friends have annual mammos from age 40, as a condition of their medical insurance, and perhaps that is why their survival stats are so much better than ours.

I did however, get a CT scan of my liver, bone scan and chest x-ray, just after I started chemo, and thankfully, all was well. I think this was normal protocol where there was spread to the lymph nodes.


Although I dread my annual mammogram in case something is found, I would much rather have this backup in case of recurrence instead of taking pot luck. We all know the earlier a cancer is found the better chance of full recovery and the only way things in the medical profession are going to get better is if statistics prove without any doubt that followup appointments actually work in finding things early. At the end of the day it is down to personal choice but I for one am pleased that I receive regular checkups even though I am 3 years down the line.


I am due to go for my first mammogram post finishing all my treatment. Date for mammogram is Sept. Suppose I am worried about it but keep trying to stay postive as all other results post chemo, surgery and radiotherapy have been good. Feel miserable at times though and still have very little feeling/sensation under my arm which does get me down at times. I am finding it hard to move from illness mode to well mode as everyone tells me how well I look and I know this is good but some of the time I don’t feel that well - so tired etc.
Sorry just felt like a moan today with people who really understand
Suzie B

I first had BC in 1990 - found the lump myself. Annual check ups for 17 years clear but in April this year my surgeon started doing an ultrasound as well as a mammogram. My mammogram was OK but a recurrence of BC showed up on the scan and I have now had more surgery and am on Arimidex for 5 years. I think this illustrates very clearly that check ups are essential and very interesting that the lump only showed up on the scan. I could not feel it myself.

I think its important to be aware of the difference between getting a new primary or a local recurrence and recurrence of breast cancer elsewhere in the body (secondary or metastatic breast cancer.)

There does seem to be a difference in practice between different Health Authorities regarding follow up mammograms. Anyone who has had breast cancer in one breast has a slightly greater chance of also getting it in the other breast…particularly in the case of lobular cancer. However, mammograms are not particularly good at detecting cancer in dense breast tissue (common in younger women though at 58 I also have dense breast tissue.) and ultrasounds or even MRI scans are more accurate. Many lumps don’t show on mammograms. Problem with MRI though is that there can be more false alarm false positives.

When it comes to scanning and blood tests to detect secondary spread I think the approach in the UK is broadly right. Blood tests are not particularly accurate in many people for assessing tumour markers and CT scans only detect tumours 1 cm or bigger. In general there is no benefit in finding secondary spread ‘early’…it makes no difference to long term survival…but scanning is stressful and expensive. (there is some thinking that early detection of bone mets can mean earlier treatment with bone strengthening biophosphanates which could be an argument for more regular scanning). Most people who get mets have symptoms between check ups. Routine scans without symptoms or other evidence may seem reassuring but they are just a snapshot at on moment in time…and the snapshot could change very quickly.

I ‘found’ my own regional recurrence between routine 6 months appointments. 5 months earlier I’d had an ultrasound of my clavicle and chest wall area which showed no evidence of cancer but that didn’t stop lumps appearing…they had probably been there for about 3 months by the time i found them. I am having more chemo to try to shrink them…but know that if they had been found a couple of months earlier it wouldn’t make any difference to treatment…or to my survival. I’m rather glad I had those extra months of thinking I was disease free…I am averagely vigilant and know what signs to look for of recurrence, but I also know that vigilance won’t save my life. Contrary to what we like to think ‘early’ detection doesn’t necessarily mean a better outcome and not in the case of stage 4 disease.

Would that scanning and tests were a miracle cure but they are not.


Thank you Jane I had been wondering if I should ask for scans 1 year post dx but I was scared of the stress of waiting.if you are right and early dx of mets does not improve chances of longer survival then I will leave it to fate.Because I am triple neg my onc wants 3monthly appts for 2years then 6monthly for 3years then[!!]annually forever.I’ll stick with that unless I have symptoms.Good luck everyone. Valx

Hi Horace

Yes I had 3 monthly check ups for 2 years and then moved to 6 month ones (and it was during the gap of the first of those that I got my recurrence…I had an extra check up when my lymphodema worsened but that detected nothing…though actually the lymphoedema worsening was for me a sign that tumours were on the move in my chest wall.)


I had my last chemo nearly a year ago and have just had the last of 17 herceptins. I have seen an onc every 3 months and had a heart scan and bloods done. Going agin in a few weeks but after that not to sure, I will be seeing my surgeon about reconstruction soon aswell. The disparities may be something to do with type of bc and also your local health trust policy. I live in Edinburgh and we get very well taken care of as far as I am concerned.

Like Olivia07 i had breast cancer in 1990 lumpectomy chemo and rads. I was seen by 2 hospitals-lump removed at one treatment at another. I was seen every 3 months by both hospitals then 6 mths then yearly. So in truth i was being seen every 6 months. My Doctor at the hospital i had my treatment then started a clinic at 1 st hospital (is this making sense) so i only started going once a year for 16 years. They gave me a choice to continuing going of being discharged last year. I said discharge after 16 years give the appointment to someone else. July this year was my 3 year mammogram. Guess what. BC s back. Now i have to have a mastectomy and recon straight away. Again caught really early 9mm. Thing is i still cannot feel any lump!!! All i can say is i hope my follow up treatment is asgood as it was in the past. Definatly worth going for-if only for piece of mind. I am in Essex we have a fantastic cancer Care programme in 2 local hospitals so am lucky but think if i dont get it i will pay private for yearly mammograms in future. Vivian

Dear Vivian

I too live in Essex, Romford, and I have had very good treatment. I am appalled at some of the posts that I have read. I will continue to have yearly mammograms for 5 years after dx (I was diagnosed 3 years ago) and I see the surgeon and oncologist every 6 months. Will continue to do all that I can to prevent it coming back but I suppose at the end of the day what will be will be.

Love Jan

I live in France and they have about the same number of women getting BC every year as the UK. My onc told me that the survival rates were far better in France than the UK - which i think most people are aware of anyway. So why is this? it has to be either
diagnosing quicker? there are no waiting lists here or
different treatment? they use the same drugs but maybe in a different combination or some other way or
better surgeons? or
better follow up treatment
I suppose its the six million dollar question but would love to know the answer.
I am 2 years DX, and for another year i have 3 monthly check ups which i have a CA 15.3 blood test before my appointment with the onc. Once a year i see my surgeon and before i go to see him i have a mamo and a echo scan on breasts and lymph glands and blood test.
I do get really worked up before each visit, but its such a huge relief when i walk out of there!
shirl X