Hi there fellow teal sisters. I have an appointment to see my MP on Thursday to discuss the importance of raising the profile and funding of Ovarian cancer in the UK. Does anyone have any suggestions of things I shouldn't forget or issues that I should raise
5hink you very much in advance
I’d like to see early screening on women, by making it a regular occurrence similar to breast cancer and cervical cancer.
Thank you. I made this point to Alex yesterday. he was surprised by the lack of screening.
I’d like to see CA125 tests used more frequently in women at higher risk of ovarian c - it’s not perfect but would pick up rising numbers!
Yes definitely and we really need research in finding an alternative.
Great to see you so involved! Whilst I applaud suggested measures, from my own experience and that of others, the stumbling block is often the GP, and I'm not generalising here, because I know there are amazing gps out there, but there are also many who are dismissive and not thorough, in my case, it was IBS, stomach infection, etc etc and even the remedy fir severe exhaustion was antidepressants. My severe abdominal pain which was crippling, could be treated quite well with paracetamol!!
I believe many gps need to be educated in the symptoms of O C, and take a more thorough approach. After all money will be saved in an early scan and CA125 with diagnisus at early stages and lives saved!!
Jackie O xx
Thank you Jackie O. Yes we made this point loudly and clearly yesterday. T His is one of the areas where I really think resources need to be spent. Many lives would be saved in this way xx
Totally agree with Jackie O - I went to my doctor with crippling pelvic pain and was given antibiotics. I wasted a lot of weeks with the wrong diagnosis, eventually asking for a CT scan and CA125 test, ( I had googled my symptoms) reluctantly they agreed. Let's get the doctors better educated and less dismissive, I was told "every other woman comes in here with a cancer query". Lets get leaflets in the surgery explaining what the early symptoms are, and I think at least one doctor from every surgery should do an awareness course and keep up to date with treatment.
Definitely. I agree completely. On a personal note I was sent for toilet training after my colonoscopy showed no disease. I was taught how to poo more effectively by using a small stool (ha pun there) to raise my knees above my pelvis and how long to spend on the toilet. Eventually some 2 years later I was diagnosed with OC 3c. I could have been saved so much disease if it had been spotted sooner but I was made to feel like an idiot despite a degree, a career and having raised a family.
I agree with all of the above. We need mail outs to all women, pick an age group, but let’s say over 30, inviting them for a yearly CA-125 test and describing the simplest symptoms: the bloating, the digestive upsets, etc.
They need to go out yearly just like invitations for cervical smears and mammograms.
Women of Jewish ancestry should be given BRCA Mutation test. Because Jewish women often have Anglicised names, Jewish ancestry should be a tick box at everyone’s GP’s.
Thanks for doing this,
Best wishes,
Laura
Interesting that you mention Jewish ancestry - my friend’s dad left when she was tiny baby - eventually in her thirties she was diagnosed with triple neg bc and found a half brother who revealed their aunts had died of it and that they were of Ashkenazi descent - it’s certainly something that could easily be added to a database and might make a dr think about diagnosis
Definitely. I raised the idea of producing leaflets targeting women when they attend for cervical smears and mammograms. A really good point here about Jewish women too and one I hadn't really thought of before. Thank you
It won’t hurt to suggest that the availability of chemo drugs for recurrent ovarian cancer should be on a par with the drugs available in other European countries.
Yes thank you. The point was made and presented yesterday. DO you have any figures for this or could tell me where I can look for the data. I'm struggling to find up to date numbers and information and want to get back to Alex Chalk
I totally agree with what all the ladies above have said. So many of us were sent away from GP surgeries with prescriptions for laxatives and diagnosed in A&E much too late. Anyone with possible symptoms should be given a CA125 test at the very least. All women should be educated about the symptoms similar to checking for breast abnormalities.
Yes I agree completely.
I very much agree with comments about better GP awareness. It was the thing I came away with from watching the Commons debate last week. There was lots of talk about raising awareness of symptoms amongst the general population but that only helps if when you then present with the symptoms at your GP Surgery that you are taken seriously. I was one who had to wait for an emergency diagnosis at A&E after being dismissed by the three GPs I had seen previously. It happens far too often.
Juliax
This link might give you some additional information
targetovariancancer.org.uk/...
I am on a one woman mission to get Daytime TV to do a piece on OC I’m tweeting them daily with ‘OC Warning signs’ all of the shows have recently covered articles on Breast, Cervical, Testicular & Prostate cancer but nothing about Ovarian. It is really annoying especially as the ladies on Loose Women & Lorraine are exactly the right age when our female-bodies start to change with menopause & weight gain and symptoms can be overlooked. Slowly my Twitter followers are re-Tweeting so I hope eventually someone will think it’s worth covering on their show!
Lorraine did a feature on it a couple of years ago as one of our lovely ladies Gill Harler was one of her Women of the Year finalists, recognised for her work in raising awareness of OC. Hopefully they'd be happy to run with it again.
I think highlighting the lower survival rates in the UK is vital (a national shame). Good luck and thank you. Xx
Thank you for that.
That’s great news, early diagnosis and better awareness campaigns to catch symptoms early, it’s easy to blame diverse non specific symptoms on IBS, money also needs to be invested in research to find a much better bio marker than CA125, CA125 is a better test for post menapausal diagnoses but still only 70-80 % accuracy,
I spoke to my gynae oncologist and there still seems to be a skeptical approach regarding the benefits of screening sadly with the tools we currently have, this disease needs much more recognition and investment, early diagnosis would mean completely different outcomes for the lives of thousands of ladies and we have the worst outcome at all levels than France and Germany, even improving to equal outcomes of these countries would change lives
Thank you for all your efforts!!!
Thank you . Spot on. do you have any information on the survival rates in France and Germany?
All of the above. I went to my GPs surgery and saw several different doctors over the course of 20 months. I was repeatedly told it was my age (in my 50s). The week after I was diagnosed they put a poster up in the waiting room about the signs of OC1!
Also A&E need to be more aware. I was sent home from A&E in October 2017 with a note saying they were not sure what caused my pain. I went back in November where I was diagnosed with stage 4a. It was a doctor in our local walk-in centre who did a 'tap test and stethoscope' routine who picked it up. None of the other doctors did that.
So pleased you got there in the end. WE put this to Alex yesterday too. It is so important.
I'd like to see them looking at follow-up too. Too many people are abandoned with no scans and no bloods after treatment because the doctors think we'll go back if we have symptoms. Given that it's a disease with few symptoms to start with I really don't get this. Ok so maybe some patients find it stressful having to have follow up tests but we should be given a choice. The famous study they keep quoting that says early treatment doesn't help on recurrence also says patients should be offered the choice of having the ca125 measured or not.
Also genetic testing for all patients. I've been denied all of the above and I suspect that cost comes into it.
Lynn
x
Definitely. I agree completely and we put this forward yesterday.
Trying to help raise awareness
Cost of having BRCA test and PET scan done privately?
Succession Planning at the close of Ovarian Cancer Awareness Month
Thinking of you all. 
Possible treatment options
