Do you want to help with this research?

Hi forum members

We have been asked to contact you about this project. Can you please contact Suman (contact details below) if you are interested in finding out more.

Best wishes

Ann

Were you over 50 and diagnosed with DCIS after going for a routine 3-yearly mammogram? Would you be willing to share your experiences and take part in research aimed at helping other women, their families, doctors and nurses? To find out more, please contact:
Suman Prinjha
Phone: 0208 863 2599 / 07751 582420
Email: <script type=“text/javascript”>eval(unescape(‘%64%6f%63%75%6d%65%6e%74%2e%77%72%69%74%65%28%27%3c%61%20%68%72%65%66%3d%22%6d%61%69%6c%74%6f%3a%73%75%6d%61%6e%2e%70%72%69%6e%6a%68%61%40%64%70%68%70%63%2e%6f%78%2e%61%63%2e%75%6b%22%3e%73%75%6d%61%6e%2e%70%72%69%6e%6a%68%61%40%64%70%68%70%63%2e%6f%78%2e%61%63%2e%75%6b%3c%2f%61%3e%27%29%3b’))</script>

With warm wishes,

Suman Prinjha PhD
Senior Researcher
DIPEx Research Group
Department of Primary Health Care
University of Oxford

Hi All

Suman came to visit me about three weeks ago to conduct an interview in my own home about DCIS. Suman is lovely, she makes you feel totally relaxed and
talks to you about your diagnosis, feelings etc. I would recommend anyone who has the time to be interviewed by Suman to contact her. The results are being used by medical proffesionals, nurses etc. to give them in depth knowledge of patients actual experiences, as well as the interviews being put onto the website for anyone newly diagnosed with DCIS to read. A lot of people are frightened to even go and have a mammogram, only six out of ten people actually even turn up for their routine mamogram at 50. My consultant told me at the time that I was very lucky to have had my mammogram at 49 and a half and not 52 and a half as the results could have been very different. At the time I didn’t feel lucky as the diagnosis was either a WLE or mastectomy, but now after a WLE, a scar that has virtually disappeared and no follow up treatment I do feel very lucky and willingly tell al my friends who are the same age as me about my experience to try to encourage all of them to go for their mammograms.

Soozi

Hi - after seeing Ann’s letter on the 1st April, asking if anyone would be interested in the project that Suman is doing, I contacted Suman immediately. Suman is coming to interview me on the 28th of this month. I have spoken to her, after contacting her via her E-mail. She sounds a lovely lady, and very reassuring.

As I was 67 when I was diagnosed with DCIS, and although I was given such a lot of reasurrance from every one. I needed to speak to someone of my age, and who had had to deal with a masectomy and reconstruction, as this was my first operation ever, and my age as well, I was quite anxious.

I was introduced to a lady of 57 though a friend of a friend who had been to the same hospital, and was told what a good hospital it was. And it was, I am so grateful to everyone,

The outcome of my operation was to be told that everything was clear, and that I didn’t have to have chemo or rad, not even tablets. So if by having this interview I can reasure anyone it will be a small thank you to everyone.

Hilary

Hi

I also contacted Suman when I saw the email and she is interviewing me on Thursday this week. I feel it is one way that I can give something back for all that has helped me to date. I am below the required age 50 and had felt something different, not a lump just a firmer area and saw my gp, 2 weeks later I had mammogram and 2 weeks after that was dx with DCIS I had mastectomy and recon less than 6 weeks after dx day. I hope that the findings from the research will help those unfortunate enough to follow our path.

Carole x

Hi

I had my interview this morning with Suman, she was lovely and very understanding and and I found it easy to talk to her. I feel that I have done something good today and I felt that the information that I gave her was useful and felt valued. I hope this research does some good and am sure that it will.

Carolex

Hi All,

I had my interview today with Suman, lovely lady. This was the first time I had told ‘my story’ from start to finish and I feel like it was a completion of my journey, and feel it actually helped to get it all out of my system. As I regard myself as being very lucky and a success story, I hope when worried people read it on the website it will help to reassure them that following a diagnosis of DCIS there can be a good outcome.

Carol x

Hi all

Suman came to my home a few weeks before my surgery, she is lovely, and a very compassionate person who makes you feel totally at ease with a very calm and gentle nature.

It was a really good way of expressing how i actually felt about the diagnosis and the forthcoming surgery and believe that it is a way to unlock those fears within you and in the process help others.

Thankyou again Suman and good luck with all your research

warmest wishes

Liz x

THANK YOU SO MUCH to all the women who have taken part in the interviews, shared their experiences so openly and honestly, and made this work possible. I have now finished interviewing and am checking the interview transcripts. We plan to have the whole site on women’s experiences of DCIS available on the DIPEx website for women, their families and health professionals to use in January 2009. This site will build on our earlier work on women’s experiences of invasive breast cancer (www.dipex.org/breastcancer) and breast screening (www.dipex.org/breastscreening).

Thanks, too, to all the women who volunteered to take part in the interviews after we’d finished interviewing and gave me permission to hold onto their details so that I can contact them later if we conduct more interviews in the future. And thanks to Tara and from Breast Cancer Care for their help, support and enthusiasm for this work.

Of course I will be be in touch personally to let Breast Cancer Care and the women who took part in the project know exactly when the site will be going live.

Warm wishes and all the very best,
Suman x

Suman Prinjha
DIPEx Researcher (www.dipex.org)

Actually just phoned Suman - having emailed her a while back - really pleasant chat but coming to an end of this stage in her research - hopes to get more funding to continue next year and will keep all contacts on file to pehaps contact in the furure - should the funding miraculously appear - love to all xx