The pressure to take up screening appointments - so that anyone who looks at the facts and decides not to be screened is likley to be made to feel irresponsible.
The lack of statistical integrity that occurs when people who should know better compare 5 year survival rates pre screening programme with 5 year survival rates post screening programme. It’s not comparing apples with apples.
Obviously the survival rates post screening will improve because you are including a whole lot of women with early stage, screen detected cancers whose cancers might never have been detected without screening(or would have been detected symptomatically at a later stage), with women whose cancers were only detected by symptoms.
It would be staggering if most of the screen detected early stage cancer patients didn’t survive at least 5 years. (btw, DCIS is counted separately and not included in the 5 year stats)
This artifical skewing of survival statistics has a knock on effect on mortality stats, because it muddies the waters and makes it very difficult to unravel to what extent improved survival and reduced mortality are the result of screening and to what extent the result of improved disease management and treatment.
I think the best way to find that out is to only compare symptomatic patients now with symptomatic 20-30 years ago. But nobody seems to want to do that.
Sorry just to be clear - I didn’t have a mastectomy, I did have 2 wide local excissions and radiotherapy. The first Dr. I saw told me that if I had a mastectomy, that would be the end of the cancer, and it wouldn’t come back. Two other Dr’s told me it wasn’t necessary and statistically the chances of recurence was very small.
Knowing what I know now - well you can guess what I would do. Although my consultant insists this is a separate new event, so a mast would not have helped.
Of course we should be given all information, I cannot bear the ‘nanny knows best’ kind of medical attitude I’ve come across from medics & co., but how difficult it is to be honest, when relatively speaking we still know very little about this very complex disease.
Jane you may well be right about what I heard at bc conference, my memory is certainly nowhere near as good as it once was.
I went to the same conference and whilst I don’t remember them saying that follow up didn’t make any difference to mortality, i came to this conclusion so may have picked it up there.
I haven’t had any follow up - and I don’t intend to have any
Back to that conference…which incidentally was really good…could another done be due BCC? (There was a sub text going on about some women getting ‘upset’ by some of the presnetations, but I thought the conference was the most informative meeting I’ve been to on breast cancer…no pick fluff for once and the joy of being treated as an adult!)
I think Mole’s memory is correct and that one key message from the dicussion on follow up was that it makes no difference to mortality figures. Most women find their own recurrences or report symptoms between follow up appointments, and in any case delay in recognising secondary recurrence does not make any difference to life expectancy (I think this view has been challenged in relation to some cases of bone mets)
Clinicians and patiens have very different views of follow up. For clinicians it can seem the wrong use of resources, but patients find follow up appointments, though stressful, very reassuring. The question was raised about whether follow up should be specialist nurse led rather than clincian led. I think many wpmen at the Conference did not like this suggestion, but I can see it makes sense. Follow ups could be nurse led with referral to doctors only where a problem was identified. What women most want is reassurance and a longer talk with a nurse might provide that more effectively than a quick in and out with the consultant.
Another issue raised at the conference was the idea that follow up could be different for ‘high risk’ women.
I can quite understnad Mole why you have declined follow up. Personally I did find it gave me reassurance…albeit for a short time!
This is irrelevant I fear except as anecdote.I pay to have my followups privately because I welcome the opportunity to discuss any concerns with onc or surgeon and hopefully resolve them.eg in July I found a small lump in 'good’breast and was able to have ultrasound and fna which showed up a benign cyst,dx within the hour.Same with mammograms though I do worry about the yearly blasts of radioactivity.I feel women must be given all the information available and be allowed to make informed decisions without criticism.However many women welcome the professionals 'telling them what is best’I just wish that those of us who do want to know everything could be given facts freely as required.By the way I would never accept any sort of diagnostic scan as a 'routine’followup.No CTs,MRIs or bone scans unless symptoms demand them.Sorry to waffle.
Love Valxx
I think horace is talking about her experience as someone with primary bc. I felt pretty much as she does before my recurrence…I welcomed seeing consultant every three months for 2 years but for the chat, and clincial exam not for tests and scans.
I think with a secondary diagnosis it is different…because scans and tests monitorr how well cancer is responding to treatment and decisions can be made about switching treatment if necessary…so now yes I have scans.
Celeste…sorry if you think we have crossed wires somewhere. Not my intention.
Thanks, Jane - and Val! - I thought that was so, just wanted clarification… knowing something about both of your bc situations (very different from mine).
I read the BMJ article. The authors want the statistics on the value of breast screening given as baldly as stated by JaneRA in her comment on 20th Feb. They acknowledge that people are distressed by being recalled to check on a mammogram, but do not acknowledge the distress that could be caused by reading the figures without explanation of what they really mean. There are not often professionals with you when you read the leaflets.
It is distressing to be called back as I know as I was diagnosed with DCIS at my first mammogram when I was 50. But I am glad that I went through what was a very painful experience as I went on to develop breast cancer and have since had a recurrence. The authors of the article do not suggest that leaflets should give you contacts for counsellors which might be more useful.
The authors of the article talk about the problems from radiotherapy as not being raised in the NHS leaflet when it explains about radiation from the mammogram. I think it is misleading to want this included as not everyone has radiotherapy and my experience is that the oncologist explains the risks as it is one treatment option among several. Overall I think breast screening is beneficial as it raises awareness for many women. While it might not find every occurrence it does find many.
The article is in the public domain and can be read on the bmj web site. Comments can also be added there.