---Email address hasn\'t come up right... ---The email address that is at the end of my last post hasn\'t appeared correctly, after the
is the \'at\' symbol that\'s always in email addresses, followed by
Hope this makes sense?!
---DCIS study researcher --- Hi all,
My name is Fiona Kennedy and i am the lead researcher into the research mentioned here into Ductal Carcinoma in Situ. Since the post was added to this website i have spoken to some of you who would like to be involved, but i thought i would update the forum as to the plans of the research.
In brief the research is looking into the psychosocial and emotional impact of a DCIS diagnosis and the treatment. The research is taking place over the next two years and will consist of a series of studies involving women at different stages (i.e previously diagnosed/treated, and recently diagnosed/ undergoing treatment).
So far we have had a great response from women to the research and because we would like all the women who have expressed an interest to take part at some point we are currently rethinking the set-up of the research.
Initially the plan for the first study was to interview women previously diagnosed and treated for DCIS about their experiences, and although this will still happen we may have to interview some women later in the year (due to time constraints and the number of volunteers) or involve them in a questionnaire study (later this year) that will look further at some of the issues that came up in the interviews. I am currently putting together a list of interested women so i could add any interested volunteers to this and then i will contact you directly in the near future when the research plans are finalised.
I am very happy to answer any questions or queries about the research so please contact me if you have any, either through this forum or i can be contacted through the University of the West of England or Breast Cancer Campaign. My email address is (although i\'m not sure this will be posted on the forum?)Fiona2.Kennedy-at-uwe.ac.uk
More on screening Here\'s the link to Bristol Uni\'s website with the latest info:
Interesting point about warfare & technology. It\'s sobering to think that medical science has a lot to thank war for. As well as the example above, surgical techniques developed over the years as a result of experience gained in wars and/or terrorism. Plastic surgery advanced as a result of the terrible injuries caused by terrorist bombs in Northern Ireland in the 1970s and Chemotherapy originated in the First World War. Doctors noticed that soldiers exposed to mustard gas died because their bone marrow was destroyed and they investigated why. In the early 1940s nitrogen mustard was used in the US to treat patients with Lymphoma and this led to other drugs being developed to kill specific cancer cells.
On a cautionary note, I don\'t claim that the information I\'ve discovered about screening is a totally balanced view of good and bad points. It\'s just stuff I\'ve found meandering around the internet that looked interesting. It\'s good stuff to use as a basis for an open and honest discussion with doctors, but I don\'t advocate that anyone should make any personal decisions about screening based on this information on its own. I would always get advice from a doctor.
New screening technique ...thanks Daphne for all the breast screening info - really useful. Can I ask where you saw the report regarding new procedures.
Interesting that they are adapting a technology that was initially developed presumably under the heading warfare. How much nicer and a more healthy reflection of our society\'s priorities if something had been discovered through cancer screening that they were able to adapt for warfare.
Sorry it just enrages me that health and education are not higher priorities.
Screening Screening techniques will become more advanced - this morning I saw a report about a new breast screening procedure which has been developed by Bristol University. It uses a new type of radar system. It\'s been developed from techonology used in land mine detection. Because it doesn\'t require x-rays, it will mean women can be checked more frequently without the fear of over exposure to radiation. It\'s not been approved for use yet.
There was an announcement on the BCC website that says that breast screening is saving 1400 lives per year and reducing mastectomies through earlier detection, but it also says that some doctors are critical as some \"tumours\" are sometimes found to be benign and therefore many people are subjected to unnecessary worry and possibly surgery. What I\'d like to know is how many women have to go through false positives and unnecessary surgery and trauma for 1400 lives per year to be saved.
There\'s an argument that says if you go looking for something, you are quite likely to find it so then you have the dilemma about whether you should leave it alone or treat it.
I think research into more advanced screening techniques has to go hand in hand with research into much better prediction of which conditions can be safely left and which have to be treated otherwise the number of people undergoing unnecessary surgery is going to increase, simply because screening is more sophisticated, but diagnostic and prognostic processes lag behind.
On the whole, I\'m in favour of breast screening, but I think it\'s a good, necessary thing that there are some vociferous critics so we have a proper view of the advantages and disadvantages of screening and can make our own choices.
Daphne.... ......thanks I\'ve now read the article. Didn\'t realise there was so much controversy over screening.
I think I need time to reflect before I say much more.
--- ---I telephoned Fiona Kenendy and gave her my details. She says that the response has been much bigger than expected. She also said she did not know if they could include everyone who had been in contact and that they would do some face to face and some telephone inteviews. Said she would get back to me when she knew what was happening.
By coincidence I got a letter today calling me for what would normally be my first routine mammogram as I am 50 this year. Have yet to tell the screening clinic that I had one six months ago when my treatment finished and am booked in for another in July.
With the letter was a leaflet which did set out the pros & cons of screening and made it clear that while screening may pick up breast cancers at an earlier stage which may reduce the risk of dying from BC it may miss some cancers and that \"not all cancers that are found at screening can be cured\". The leaflet is clearly aimed at women who have had no previous experience of the screening process unlike most of us who post here. It is written in clear and simple language and makes it clear what to expect.
bizarre celebration...... .......Annie for your mastectomy celebration. Not entirely sure what it should consist of or even whether you should be happy - because they did find the cancer in time - or miserable because you lost your breast. On balance I think it should be a happy memorial which obviously should involve a meal out and a reasonable bottle of wine or two! Any excuse.
I\'ve heard back from Fiona too. I am actually visiting Bristol Cancer Help Centre in approx 2 weeks time - it may be an interesting experience - if only for the lunch.
I hope you are well Annie.
Thanks for the link Daphne I will read it when I am ready to accommodate a higher level of anxiety. Thanks anyway.
study oh I forgot to mention I too e-mailed about the study, and had a very nice e-mail back from Fiona Kennedy. She will add me to the list and contact me later in the year.
screening? I too haven\'t been given any information about future screening.
I had my last mammo on my left breast in July \'04.
I have my one year on follow up visit to clinic in 2 weeks, so will ask then.
Some people seem to have annual, but I definitely will not, possibly 2 yearly? I did ask when i was in my treatment, but never got a clear answer, some told me 1 year, some 2 years.
I just want to know the other side is still clear.
by the way, it\'s a year to the day since I had my mastectomy, not sure if I should make a thing out of it or not.
Have been spending the day remembering what I was doing this time last year.
Screening Info Celeste, you should have been given some information about screening either in a leaflet or verbally, or both, preferably, but whether it would go into the pros & cons of mammography that Mike Baum mentions (see link above) is unlikely.
I\'ve read nothing that deters me from having an annual mammogram. If there\'s anything suspicious on it, I would go through the options for further diagnosis and treatment with my surgeon, including possible consequences of doing nothing. Then I could make an informed decision.
information about screening? .....what information about screening. I havn\'t had any. As I was mammogrammed twice last year -once by mistake - this sounds like something I should know. Can anyone give me the info I clearly should have received. I have a funny feeling I may not like it.
--- I haven\'t had a mammogram since I found my lump in 2003 and I don\'t intend to have another one.
I would not have surgery now for low grade DCIS which is what I had so I don\'t want to find any more of it.
Email details Actually, the contact details don\'t seem very clear. The UWE website leads you to Breast Cancer Campaign, but then seems to fizzle out. I suggest phoning the lead researcher ( details on the UWE website) if in doubt.
Regarding whether or not there is a lot of unnecessary surgery for DCIS, Professor Mike Baum makes the case that there is:
The NHS has published a counter-view:
It may well be the case that most cases of DCIS, whether detected or undetected would never progress to an invasive cancer which killed someone. The problem is that until you can predict which cases could be safely left untreated, a doctor could never honestly say to a patient that their DCIS is unlikely to ever become life threatening because they might be one of the unlucky ones where it does.
Unless you can round up a significant number of people diagnosed with different types of DCIS who are willing to have no treatment and then monitor them to see what happens, I don\'t see that much will change in DCIS treatment.
I agree with Prof Baum that women should be given balanced information about screening (if they want it, some won\'t) and then they can weigh up the pros, cons and possible consequences themselves.
Ah you have appeared! ...well done for getting your photo sorted I have no idea how to do these things in the first place - bit of a luddite.
I couldn\'t find on the website where to email - so I went on to the UWE website and e mailed someone from there - hoping they would pass the message on. Was that your experience too or did I miss the obvious (again!)
Sorted New picture in place, taken at my daughter\'s wedding.
Wow! Hi Celeste - don\'t know what happened to my photo - it must have been taken on a dark night while I was in black. I don\'t know how I sort it.
study I\'ve sent an email as I would love to see more research into DCIS, not just the psychological effects but how to stop operating unnecessarily
Me too! ........although I am not sure of the value of a questionnaire over the phone. Interesting photo Anne are you the invisible woman!
Thanks Daphne I\'ve e-mailed them. I\'ll see what they want before finally agreeing.
DCIS Study Recruiting Now The University of the West of England is recruiting women for a study into the psychosocial affect of being diagnosed with pre-invasive breast cancer.
If you are interested in taking part, details can be found here:
DCIS Study Recruiting Now