Yesterday Susan and I attended an ovarian cancer study day in London. Members from all the ovarian cancer charities were present and Annie gave an excellent talk about the patients experience. There were lectures from leading specialists in the field of ovarian cancer covering all aspects of the disease including screening, the issues of earlier diagnosis, follow up - Ca125 when and when it shouldn't be used in follow up, survivorship, surgery for early and late stage ovarian cancer, chemotherapy - including conventional and targeted agents in chemotherapy and improving the outcomes in ovarian cancer. As well as the lectures there were some lively informative debates which all added to the day being extremely useful and worthwhile.
Ruth
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RuthPOvacome
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Dear Paul, Ovarian Cancer Action are the secretariat for the Leah Lederman Lecture Day. I asked if I could put up a blog about it here but I'd have had to get the permission of the speakers. They said they would contact all the speakers to ask for their permission to use their materials and if given would put up the slides on their website. There were some very frank talks and discussions.
I loved it all and especially our old favourites such as Hani Gabra and Ian McLeish, but I absolutely adored the delightfully quirky and funny Professor Gordon Ruskin, of Mount Vernon. Does anyone have him as their consultant? He questioned whether a patient in remission needed 3 month check-ups and thought if we had better things to do then we shouldn't bother. He seems to like to start a 'challenging discussion'.
Another talk that gave me a huge feeling of relief was by Professor Usha Menon, by UCL. She explained how serrous tumours are thought to drop out of the fingers at end of end of the fallopian tubes (obviously not her words) and they scatter about the abdomen. She was working on a trial with the hypothesis that some ovarian cancers start at Grade III or IV. That would ease a lot of my doubt and guilt that I could have seen a doctor earlier had I been more vigilant and prevented my family from losing a mum/wife, etc.. Her findings come out in 2014.
My talk included the problem of inequalities of access across the UK and it was reassuring that the point was picked up by several of the speakers.
I hope Sandra is keeping better. I thought of you and her as one of the talks included some discussion about how quickly to offer chemotherapy and I know it's something that's always been a concern for you.
Just wanted to add our congratulations to you Annie - you are so brave to stand up and speak. And also a big thank you for trying to empower us - people like you are an inspiration.
Dear Ruth, it was an awesome day. I was really pleased to be able to tell so many people about the charity Ovacome and how this site is a lifeline to so many of us. Had `I more time, and the presence of mind, `I would most certainly have mentioned your nurse-led helpline which so many of us use and think is invaluable.
Sounds like a really interesting day, how can we find out about these events as I would have been interested in attending?
Do you know if there have been any developments regarding cancer survivors talking to medical students? I remember someone was going to the States to see how they introduce the topic to students
I went to Washington in July to be trained in how to deliver the project you describe, and to attend the annual conference of the Ovarian Cancer National Alliance. Since then I have been developing materials and working on how the US programme can be adapted for the UK. This process is almost complete and I will then be recruiting volunteer presenters to train and after that we will have a launch event.
This sounds like a brilliant project and aimed at the very people who can hopefully make a real difference in diagnosis, care and support of cancer patients. I would be interested in learning about what is involved in the training
The way to hear about events offered is to join the mailing lists of all the ovarian cancer groups/charities that you feel might have interesting and helpful stuff. Hopefully you're a member of Ovacome, which is different to membership of Ovacome HU, but you can also subscribe as a member of Target Ovarian Cancer, and Ovarian Cancer Action who were the charity that advertised this event in their monthly email newletter.
Ovacome has helped me so much over the past 5 years and would not be receiving Avastin without the help and support from yourselves. I would have loved to attend the meeting. Many thanks xxx
Excellent news, and I would have loved to have been there. We all would have truly benefitted by being present amongst eminent speakers.
If once you have gained permission, if we could have a newsletter or some other means of looking at the material at hand, it would be very much appreciated.
Thank you so much for all your energy and passion ladies, you are truly 'awesome' ladies!!!
I know it's not something I could do myself so I'm really grateful we have women like Annie and Ruth to 'speak' for us. I too would love to read more if you get permissions.
Many thanks to everyone who takes our 'voice' forward.
The only thing I would say about attending a conference for professionals at the leading edge of research is that you need a brutally strong constitution but if you can face the facts it's a fascinating insight into where they're at with ovarian cancer. Some of the scientific stuff went right over my head but a lot was surprisingly very easy to understand. I shan't post my paper up because it focussed for a large part on equality of access to healthcare and I think I've said enough on that here. xxx
Good on you.........i will be particularly interested in reading Prof Menons finding next year and in particular anything to do with Serous OC. That aside i hope you are doing ok. Take care, Laurence
Annie, Thank you for being so strong and able to attend the study days and them keeping us all aware and updated Kris xx
What a fantastic site this is. I feel so good after reading postings. Please all keep up the good work. Thank you so much for representing OC sufferers. Bless you, regards from Izzy xxxxx
Annie .. Because you're doing so much .. It's easy to forget that you are living with this too and so I'd just like to send you a special thank you from my heart .. Love Tina x x
It was an amazing day , but agree with Annie, feel maybe we could do with a debrief after all those brutal facts ! Nothing like facing the beast face on ..... Couldn't even face John Lewis after the meeting.!! Ill try to turn my scrappy notes into a summary with Annie's approval. Annie certainly made a big impact on everyone ! Well done Annie.!! Keep fighting everyone, was cheering to see how much all the experts cared.
I would like to add all my thoughts to those above ; the work that is being done by everyone , in terms of access,being prepared to share experiences , hopes and fears , all , that goes with this dreadful disease ...those that make it to meetings and any attempts to disseminate information to the rest of us , is extraordinary .
We not only need to fight for early diagnostic tests / treatment of the highest order for everyone , but for an NHS , that continues to give Oncologists/ Clinical Nurses the time and space to help us all .
In the two and a half years since I was diagnosed, I have had outstanding treatment ; but , I have also seen many , many changes ....stressed out staff and nurses doing their best ; cuts to nursing and , fewer consultants . departments almost running on empty , harassed phlebotomists etc etc . We all need to be very alert to what is happening , being constructive where ever possible . Constructive , positive , wonderful people on this site !! .
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