Did anyone else see the article in The Times on Saturday by Gail Rolfe ?
She was actually talking about the depression that hit her after all her active treatment for BC was finished but what really struck me was how different her follow-up appointment schedule was as a private patient, from my own- and I think, most people’s, in the NHS.
After her active treatment finished she was seen every three months for 3 years; now, 3 years after finishing chemotherapy, she is being seen 6-monthly. She also mentions blood tests, ultra sounds as well as mamomgrams - after her treatment finished. Her BC grade and stage & treatment sounded very similar to my own …but my follow up was very different.
From the last day of my rads. until my first follow-on appointment, was 8 months- and therafter I was just seen annually (either by the oncolgy team or the surgical) with mamos every 18 months.
I understood that such a timetable was complying with NICE guidelines- so why would a private patient be seen so much more frequently? I am surpised that the insurance companies would go along with this…? I’d be interested to hear what others think
Hi Topsymo,
I didn’t see the article you mentioned. I am an NHS patient in Glasgow and on a clinical trial but I don’t think that affects the number of hospital appointments I have. I was diagnosed in September, 2011 and mx in October and have seen BS every 6 months since and for 10 years I am told. I started chemo in November and initially had 3-weekly consultations with onc nurse until some weeks after chemo finished. I am still having Herceptin until December and have reviews with onc nurse every 3/4 months. Last one was August, next in December and I don’t know what happens next year.
I do know, from reading other women’s accounts on this site, that it does seem to be a postcode lottery as to how treatment goes.
Take care, Liz.
I saw the article as well, and thought exactly the same thing. I’ll be finishing treatment in two weeks’ time and I believe I will see my oncologist just once more after that. Then I’m seeing the BCN at various intervals over the next 18 months to check for lymphoedema - but that’s all. Apart from that there will be an annual mammogram for 10 years - I presume anniversaries will be from end of rads treatment, rather than from dx. I’m not on any other ongoing treatment though, as I’m triple negative.
I must say I was feeling uncharitable when I read the article - I was thinking that if she got depressed despite all that follow-up, then what will it be like on the NHS with nothing like that aftercare? I think it will feel like falling off a cliff once all the treatment stops and everyone thinks you should be ‘over it’ and back to normal fitness straight away.
Sara
Hi there - sorry to be cynical but maybe the reason she is getting all that follow up is cos the private providers are getting paid for it ! There are plusses and minuses to follow up too - if you are feeling good its a real downer to go for an appointment, and both my oncologist, surgeon and BCNs say it is very rare for anything to be found on follow up - normally women report a problem when the problem exists. So there are many different ways of looking at the whole follow up thing - what I do know for myself is that after treatment finished was very tough, but I paid for 3 sessions of counselling myself, happily I could afford it, would have had to have waited quite a while to see the counsellor at my GP surgery and didn’t feel I should take up that resource as I could pay. all the best
I will have follow ups on the NHS once a year with my onc and once a year with the surgical team with a yearly mammogram. I had my surgery privately but all other treatment on the NHS and did discuss with my BCN if it would be better to get my follow ups done privately, her opinion was that follow up appointments are so stressfull and cause so much anxiety to us patients and did I really want to feel like like 4 times a year as oppose to twice a year? She also said, as did Moorcow, that most problems are found by patients rather than mammogram.
Hello
I was diagnosed 9 years ago and use private medical insurance. I had primary breast cancer, 6/17 nodes affected, and ER status 6/8. I was 46 when diagnosed.
I cannot remember seeing my consultants every 3 months, I saw my Onc about a month after rads finished, then had a mammograme on the anniversary of diagnosis which has happened yearly seeing my surgeon at the same time and then seeing Onc 6 months later and thats how its been since then, I see someone every 6 months.
Now my surgeon “tried” to discharge me a couple of years ago but I said that I would like to see him yearly for a few more year but we have now agreed that the mamogramme I have next year will be my last with him and then I will just have my NHS one every 3 years.
With regards to my Onc, I had 5 years of Tamoxifen and now on year 4 of Letrozle and I still see him once a year. I have had 2 bone density scans but have had no other tests, bloods tests, just examination. I expect him to discharge me after I have finished Letrozole
I am with Bupa but did have a period with Aviva and they would only cover my treatment for 5 years but due to my employer I moved back to Bupa. I left my job 18 months ago and pay my own premiums and to get a reasonable prem that I can afford I do have a high excess.
I don’t know if locally I would still see someone on the NHS.
Hazel
Unfortunately the article is behind a paywall. However, it sounds as though she elected quite a bit in terms of her treatment and so it may well not be ‘standard’, even for private. Personally I wouldn’t want a check up every three months. Can’t wait for treatment to be over and get on with life again. Also, although I’ve had a couple of unpleasant experiences at my local hospital it is very well equipped. Not sure I would want to spend ages researching where to be treated and take responsibility for what treatment I had. I understand that some need to feel in control of their treatment but people train for years and years to treat cancer and a few days/weeks/months googling on the internet is never going to compete with that.
I’m with BUPA and finished active treatment 9 months ago and am seen every 6 months with no scans. I do know a couple of women who are seen 3-monthly with US and MRIs (although they have had quite a few problems, so that could be the reason) and quizzed my onc and surgeon on this but they said most hospitals only do follow up scans if you have symptoms. It does seem asthorough some hospitals milk the insurance companies (kind of wish mine were a tad more frivolous!). I had neoadjuvant chemo with no scans. One lady I met had an MRI after every chemo session!!! However, I know that I am lucky in that I could call up their PAs and get an appointment to see them within days if I had any worries or concerns.
Thanks for all your comments- which raise many points that I had thought about myself - as well as others.
I have my own views re follow- ups, hence my particular interest in the newspaper article. After the usual 9 months plus of continuous treatment I actually did feel as if I’d been cast adrift when I was told that my next appointment would not be for 8 months. At that stage I would really have welcomed seeing someone in 3 months time- and then after that I wouldn’t have been bothered how long it was before my next visit.
I agree strongly with what both moorcow and chascat mentioned: I know it is really rare for a recurrence/secondaries etc to be picked up at these yearly appointments. I would go further and say that i think the appointments are pretty pointless. We patients are the ones who will first spot any changes in our bodies and will be onto our BCN or GP pretty smartly if we are worried; we wouldn’t wait until our next hospital appointment was due, would we?
I have taken this up with my onc and he agrees with me- but that’s the system! I think his professional time and the money paid to the multitude of outpatient nursing staff, could be better employed elsewhere!
Sara, I did actually wonder if all those extra appointments were maybe a factor in c_ausing_ the depression- just too many anxiety-raising appointments!
Liz - I could quite see why you would be seen more frequently if you are on a trial (and Herceptin) but I agree with you that treatment patterns do seem to vary from region to region and hospital to hospital.
Morrcow- I felt pretty fed-up at the end of MY treatment and was lucky anough to get referred to a specialist nurse at the local hospice, as it was thought I was developing lympodoema. This turned out to be a false alarm but the nurse was absolutely wonderful; I saw her 3 or 4 times and she restored my faith in the nursing profession (I trained myself many years ago and was quite horrified by the attitude and lack of TLC in some of the nurses I had encountered…)
Hazelmary- I am interested in your response as it seems as if you have found your more frequent appointments a source of reassurance - and not stressful- as some people seem to. I have friends who have had private treatment and they have discharged themselves after 5 years as they just wanted to get free of all things BC - if they could!
Keyfeatures - I agree with you that I wanted to get on with my “proper” life asap- but I did feel the lack of consultant support in those first post- treatment months: this rather surprised me, as I had originally really hated the way that the hospital had taken over my life- I guess in the end I got a bit hospital- dependant!
Sandytoes- - my onc also told me that scans were only done post-treatment if people had specific symptoms- otherwise it was a waste of time. I wonder why this person in the article had them…and blood tests?
I do think the insurance companies are not innocent bystanders in all of this: someone is making money somewhere! I have had private treatment myself in the past thro BUPA (not for BC) and on one occasion when I was considering SELF-funding for a very minor op , the surgeon actually told me that the sum he had mentioned would be considerably less if I was NOT going through an insurance company!
Thanks again for all your comments- aren’t these forums interesting? (though they were even better before all the 'improvements"!)
A few years back after having a mamogramme I was sitting in the waiting area while the mamograme was being looked over to see if it had been done correctly when the nurse came out and said that she needed to do it again as it was not in the correct position. Back I went to the room and I managed to have a look at it and saw what looked like a mass in the other breast. I asked what it was and was told that was why it was being done again. I went back outside to wait, by this time a nervous wreck, shaking and near to tears, wondering how I would cope with more treatment, everything was going through my mind. The nurse came out again and said that this time it was okay and gave me a hug. I think that this is probably why I still want to see someone. I think that I am now at the point where I am willing to be discharged. I do have an excellent GP but I don’t always find he has all the answers to my questions especially as I am now on Letrozole after 5 years of Tamoxifen and having a few problems with it.