Hello, I'm continuing to do more exhibit A patient work for the Eve Appeal. Thank you so much to everyone who volunteered to speak to Eve about their experiences. They were so grateful.
Now I am going to speak (very briefly) at the House of Commons launch of Ovarian Cancer Awareness week. I thought I'd consult you on your topline messages.
In view of Eve's agenda, I am proposing to talk a bit about how I believe we could do more with the cervical smear - ie using it as an opportunity to talk to women, see if they have any symptoms and raise awareness. I know there is a wider agenda about screening but the research on this will not go live until later in the year.
From a personal perspective, I also want to talk about how much Ovarian cancer is a journey in the mind as well as the body. I don't think people really understand this. And I also think many women feel very isolated and unable to discuss the emotional side. Forums like this are helpful but to be absolutely honest I also find this forum quite difficult. It is very hard to hear everyone's difficult experiences and still keep a positive outlook. What do others feel about how we can support each other but also feel able to move on in our lives and have days when we are really trying not to think about cancer? I do find getting this many messages from Health Unlocked means it is hard to escape.
So - open to your ideas. Though - reality check - I will only get a couple of minutes!
Very best wishes to all, Liz
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I was delighted to talk to the Eve Appeal about the cancer journey and particularly when they asked if there were things I would like to see done.
I told them that there's a problem in the Celtic nations because so many cancer charities are UK-wide and are based in London. This is a particular problem in Wales because the strategic group informing political decisions can only be made up of organisations that are based in Wales and we have no representation for gynae cancers. I hoped something like the Eve Appeal might group together a number of gynae charities and develop perhaps a shared role in the Celtic nations to ensure there are specialist cancer charities in Wales, Scotland and Northern Ireland. We miss out terribly in Wales because all Macmillan's political force is directed at Westminster and this has a knock-on effect where they have been active in lobbying for a National Cancer Drugs Fund for England but not for Wales, Scotland and Northern Ireland.
Your idea of using the Cervical Smear test more broadly is one I espouse. It seems crazy to concentrate of a cervical smear when it could so easily be a genera well woman consultation where other gynae cancers are discussed. At the very least the appointment letter would be an opportunity to state that the cervical smear detects cervical cancers and not other gynae cancers. It would just be one additional sentence in the letter.
I'm also with you on the cancer journey being a matter of mind just as much as body. The Penny Brohn courses focus a lot on mindfulness and meditation to compliment traditional cancer treatments.
Eve asked whether I felt there was a need for a new forum. I really felt there are almost too many, and they're all much the same. There's scope for developing a new forum that better meets the needs of a very diverse group of people and in particular for people who are dealing with a life-limiting condition. Some while ago a young friend suggested the forum should have themed 'rooms' where people can visit if they're looking for a particular topic. I think this is a great idea. You could then avoid posts or even members you find upsetting. There's certainly scope for this on this particular Health Unlocked forum to have a space where people can post announcements of deaths and at the other end of the scale a room where people can visit who just want a laugh and to use the forum to make friends and escape the diurnal worries of living with cancer.
Thanks for posting such an interesting and thought-provoking blog. It's likely to generate a lot more email messages in your inbox but hopefully ones you'll enjoy reading. xxx
xx Annie
To be honest Liz, I don't find this forum difficult. No matter what stage of the journey, I think it's good to have the companionship of those women who also have the disease.
I have had my own trials but I have been greatly reassured by the journeys of others, many of whom aren't here any longer. They have given me the courage to go on and face what it is many women in my position face.
And this forum has helped me to have space when I feel I can make it go away for a few hours.
I spoke myself at the APPG (as a Patient Advocate) and I was very disappointed that the National Clinical Director for Cancer for the NHS pulled the Be Clear on Ovarian campaign because he said the campaign targeted woman in their late forties. I did tell him that these were the very women who are the most likely to develop symptoms in the coming years. If the target audience wasn't reached, it was suggested that the campaign model was flawed.
In any event, the final collection of data had not been finalised so far as I know and neither did he show any data.
When I found I had this disease, I also found my local Authority had no data on Ovarian at all. The LA Strategy Group then commissioned a survey when I pointed this out, which showed the shocking life expectancy of women with Ovarian who present at Stages 3 and 4 in my area in particular and nationwide. Unless we make the CCGs responsible, I can't see how this is now going to change. I understand from a recent NHS Straregy document that early stage cancer rates are going to be monitored (per CCG), but Ovarian will not be separated from other gynae cancers. That's what I understand. So particular areas of weakness in the NHS are not going to show up.
Prior to the address by the Director, Cancer Research UK gave a low figure for cancer treatment which was, I think, £6000(ish) for a course. When, in reality, women with PPC and Ovarian generally have many lines of treatment. When it's argued that women need drugs, NICE use an age weighted figure to say they are too expensive. It just goes to show the agenda out there.
The idea was that warning women to be aware of symptoms would mean the disease would be found at an earlier stage when it is more treatable or even curable. How much better to do that than try to get the horse after it has bolted?
I'm told that there is a lot of pressure on GPs to keep costs down and this is one of the main reasons women are sent away when they present with symptoms. This situation is really quite scandalous.
I was aware at the meeting the Eve Appeal representative said that there were other ways of raising awareness. I presume that's what was meant and I was baffled at why this remark was made to an already stunned room and I also felt it was unsupportive of the work already done by the charities and the members of the APPG who seek to help the forgotten women like us.
The supposed loss with a lack of reasoning of the Be Clear Campaign was a major blow to women with Ovarian. For me, it was not just an awareness campaign, it was also saying that there was a focus on training doctors in spotting symptoms (and getting testing through) but also making sure the plight of Ovarian women was on the political agenda.
It's very hard to move on with our lives sometimes especially women who are living with the symptoms of Ovarian. I also know it's a life limiting disease. Talking about the disease can also be empowering. Being realistic about cancer doesn't have to be about jumping from a plane or sailing the world. What's positive for one person is not the same as another person's positivity.
As regards your suggestion about cervical screening, I think you're right. It might help if woman were given a leaflet saying that the cervical smear is not an Ovarian cancer smear with a note about the symptoms of Ovarian and what to do if they turn up, etc.
However, even though I feel a smear handout would raise awareness (which is a good thing), I don't think it would reach the main age group until the younger women filter through because older women don't tend to have cervical smears.
I was stunned again weeks after the APPG, when I saw the review process remove drug options from women with Ovarian. Coupled with the withdrawal of the Be Clear campaign, there has been a decisive move back in time bringing a double whammy. Most women in the here and now rely on standard treatment to get through this disease at present and to remove options when there are already so few is quite frankly heartrenderingly sad.
Lord Saatchi called standard treatment 'medievil' and I think it is a hard process but it's the only option at the moment for many of us. PARPs aren't even on the list yet for BRAC women and neither are MEKs mainstream.
I feel it's wrong to throw the baby out with the bath water. Women need all of the drugs in the armoury until newer, safer and more effective ways are mainstream.
I look in the papers and watch TV and see police on murder cases where they search high and low to catch the culprit. Life is that important. However, when women with Ovarian are not sent for tests due to costs and ignorance and then find that the drugs they need have been removed, they're told to seek ways of being positive instead. I know what you mean about women letting go of the illness, but, really, let's concentrate on the main issues of accountability. And also on practical ways of helping people with life limiting illnesses.
I know that cancer can be in our thinking as well as our physical body. However, knowing that things are being done for women who are unjustly treated, and now, even more so, is something which keeps some of us going. It's what helps me to say, 'Well, somebody cares out there.'
And, you know, as my oncologist says to me in her wisdom, 'Everyone's different. We're still learning,' but it would really be nice to say, 'Everyone's different. We're catching the disease much earlier now though and we have a range of drugs to help women to live with a body which feels normal.' Now that would be nice, wouldn't it? Maybe that would help us to forget cancer for a while.
I think you've put that brilliantly Tina, I am actually sitting here crying, your words are so heartfelt, I could feel what you were writing, all so real.
Survival rates are low because of late diagnosis due to several factors:
1. No national screening programme - aware of UKTOCCS trial
2. Lack of awareness amongst GP's and public - more comms needed.
3. NICE guidelines not followed by GP's/No accountability in primary care to follow NICE guidelines ie IBS symptoms CA125 for recent changes in bowel habits/ALL women over 50 regardless of recent bowel changes
4. Update comms to include bowel changes (BEAT campaign does not include bowel changes so I would have read this leaflet and put it back as no applicable to me, 5 GP visits, 3 within month of diagnosis after admittance in A&E with 'Gross Ascites' 9 month pregnant look, NO CA125 done by GP or abdo/pelvic exam at any visit.
Hi and thank you for this helpful reply. It's good to have specifics like this. Can you refer me to the specific NICE guideline that GPs are not following? And what do you think BEAT campaign should say about bowel changes?
And thanks so much for your reply too Tina. I just needed a bit of time to ponder everything you said and have been tied up today. But really appreciate all your thoughts and experience - and also Annie's too. Will reply properly asap.
read your post again and had a rethink as realise your agenda is more specific so here's what I think.
OC kills more women than CC and there is currently no national screening programme.
The smear test is a an opportune time to raise awareness of OC Symptoms and hand out literature including mentioning changes in bowel habit in over 50's (as bowel changes are unlikely to be IBS in this age group
I think there is also a link between CC and OC ie due to radiotherapy if so women who have had CC ie myself should be referred for closer monitoring -maybe not for raising with MP's but should be on Eve's agenda.
Nice issued guidance in April 11 indicating that women presenting with any symptoms of ovCa should have a CA125 test. Then referral for USS. My GP didn't do this when I presented in Feb 13, she did send me to the Ulster Hospital A&E that day. They didn't do it either. The first time it was done was in May 13 when I saw a consultant as private patient. I later learned that these guidelines were not disseminated to GPs in NI until Feb 14. I challenged the Health Minister in NI on this issue in March 14. He couldn't answer why it took so long. Still haven't had an answer to this! Ann
Hope you are feeling OK, can I ask if you had IBS type symptoms? According to Ovacome they are rare but I'm sure lots of us first had diarrhoea/bowel problems that were not linked to OC delaying our diagnosis and not ringing any alarm bells with us as the patient.
When I presented to GP in the Feb, i had low abdominal pain and bloating. I had no problems with bowels at that stage. When I went back a few weeks later, after hospital had said there was no gynae PPP problems, my bowels were mm along rumbling noises. She examined me eternally this time and said it must be IBS. I said the pain was still there and she decided to give me antibiotics I n case I had pelvic inflammatory disease! She also gave me lactuloise foir the IBS.
Hi Liz have you got an email address I can send the NICE guidelines and if you're not aware the Target Ovarian Pathway doc where the charity states there is a problem with mis-diagnosis by GP's and the fact that CA125's are not being done AND that too many of us are being diagnosed in A&E. NICE guidelines are not mandatory and there is no regulatory body to manage local health authorities to ensure they follow the NICE algorythyms specific problem being not doing CA125 test.
Sadly there is already a case study to use as a benchmark for parliament which is that of the late Una Crudden in Northern Ireland. She was featured on a recent TV programme and highlighted the CA125 test costs which from memory is £12 or £13. She highlighted this was a small price to pay to save a life and that this could be offset by the cost of treatment for the numbers of advanced stage treatment of what is the fourth of women in the UK.
Some GP's may argue the CA125b is not a definative test and the incidence of false positives and false negatives. Thats understood but many women at stage 3 have CA125 in the thousands so this would save lives. The UKTOCCS proff (cant recall his name off hand) said it was the CA125 over time so early stage disease could be identified to save even more lives. That said many GP's do not even do the CA125 even when presented with symptons and as per the NICE protocol for womaen over 50 with IBS type symptoms 'in the last 12 months'. Una Crudden herself was misdiagnosed as having IBS hence her campaign.
Re The BEAT comms, could change it to as follows:
B Is for Bloating of tummy
E is for Eating and feeling full earlier
A is for abdominal pain
T is for Talk to your doctor if you have any of the above symtons INCLUDING TOILET PROBLEMS IE NEEDING TO WEE MORE OFTEN OR A CHANGE IN BOWEL HABITS.
Sorry this is a bit rushed, happy to talk to you if you wish I'll email you my number to give more specifics.
The BEAT symptoms are research based and are as a result of the UK consensus statement. Whilst other symptoms may be indicative of OC, they are less likely to be so. Please see here for more details:
Thank you for responding. However I myself was not diagnosed in Primary Care as had IBS symptoms. Una Crudden who campaigned in NI also was misdiagnosed as IBS along with several other ladies on this site.
The thing for me is it might not be as common as the other BEAT symptoms but it is listed by Target Ovarian and on NHS choices in the key symptoms - It it not ommitted as if its so rare that its irrelevant.
Clearly earlier diagnosis is key and the inclusion of IBS type symptoms AND frequent Urination do not in my opinion dilute the message but COULD save lives ie that of Una Crudden and potentially myself and countless other women diagnosed at a very advanced stage.
NIce guidelines and Cancer research state women in their 50's are unlikely to present with IBS for the first time and if they do its unlikely to be IBS and a CA125/referral to secondary care is the protocol for GPs. There is therefore no need to research this the research has been done and I think its time to improve the comms because on the face of it, as the fourth biggest killer of UK women frankly (as Una Crudden) would agree, they are just not good enough.
I had bowel symptoms and was diagnosed at A & E too eventually when it was likely I wouldn't have survived. (And this is true of a lot of A & E diagnosed Ovarian/PPC patients.) I was that ill. I also had a very difficult run up to diagnosis when my whole life fell apart because nobody thought I was ill and I knew my life was in disarray. I thought I was losing my mind.
It seems to me that the T as in 'Tell your doctor' is a difficult one because we are all reliant on whether there is knowledge out there and/or finite resources. I'm not on a GP bashing mission because I really do value the help I have been given, but GPs are part of the system which constrains them and I know some GPs aren't happy with the situation either.
The other thing is that few people are going to reach BEAT unless they have an awareness of the symptoms in the first place. BEAT is a clarifier. We needed the Be Clear Campaign to inform and educate women (and doctors) and I also wonder if there has been an examination of the data and a public reasoning of why the campaign was pulled.
I monitored what was going on in my area during the Be Clear Ovarian campaign. What the campaign did was highlight systemic problems and it was obvious to me once I had been through the process, that one of the reasons so many women were being diagnosed at late stage disease, was because the system doesn't work.
Anyway, if anyone wants to speak to me about the details, feel free to message me.
Thanks Tina, I agree, I was diagnosed in A&E with Gross Ascites, 3 stone heavier with the fluid which reached my lungs which is why I am stage 4 as nowhere else for the fluid to go I was drowning in it.
The stats would count my diagnosis due to presenting with Ascites in A&E and would not take into account the numerous visits to my GP starting the year before. Re the BEAT leaflet I picked it up in my surgery read it and put it down as not applicable to me.
Thanks for the offer to get involved lets see how this goes - I am firstly going to write to cancer research to ask for more info about the stats how the stats are collated and the Diagnosis and treatment
Symptoms as they go by what they call the Positive Predictive Value of key symptoms are they are all 1% except the bloating which is 2. Ovacome have replied IBS was not regarded worth mentioning.
EXTRACT FROM CANCER RESEARCH DOC>
A recent consensus statement reported the following symptoms to be frequent in ovarian
cancer patients: persistent pelvic and abdominal pain; increased abdominal size/persistent
bloating; loss of appetite and feeling full quickly.
92
Other symptoms include urinary symptoms, change in bowel habits, extreme fatigue, back
pain, postmenopausal bleeding and rectal bleeding.
93
All these symptoms have positive predictive values (PPV) of less than 1% except for persistent abdominal distension which has the highest PPV of 2.5.
93
Symptoms that are frequent, persistent and severe may help to pinpoint women with ovarian cancer.
The CRUK consensus that you quote is the Ovacome convened consensus meeting, to which CRUK were invited and indeed adopted the document. This meeting was the foundation for the BEAT messaging. The other symptoms listed are important but are less reliable and it is feared can muddy the waters further making diagnosis more difficult. You will note that the BE Clear messaging only had one symptom - Bloating.
The consensus group considered that the principle symptoms are IBS like - Bloating, difficulty Eating, Abdominal pain. I'm not sure what other wording would resonate, but it is important that whilst we are all individuals with differing experiences, Ovacome has a duty to act according to the most robust and reliable data. This is what has been done with BEAT.
Target is a separate organisation and they of course act according to their wishes and priorities.
May I in one email thank everyone who has replied to my post. I am reading all the material and much appreciate the briefing. The consensus statement and information about NICE are both extremely helpful.
May I ask a question about using this site?
I increasingly find it upsetting to get so many email prompts every day from Health Unlocked.
It is really useful being on the site for this kind of consultation. But can I access the site when I want to without getting all the email prompts? If I unsubscribe, does that mean I cannot use the site at all?
I am really struggling to balance helping out in the cancer world with staying positive and sane in my own head. I just don't want to be bombarded with email prompts when I'm trying to have a day without engaging with cancer stuff.
I am sure I am not the only person who would like to do this.
Can you advise/help Ovacome team?
I will let people know how the House of Commons event goes.
Hi Liz, if you click on your name at the top of the page and then select settings you can adjust the range of posts / or stop the posts coming through to your emails!
Good luck with the event and yes, do understand the need to find balance! Best wishes, Sx
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