Fighting for Fair Treatment for Ovarian Cancer

Fighting for Fair Treatment for Ovarian Cancer

Dear All

I've just discovered that it's impossible for an author to delete a blog so I've edited this one and deleted it that way.

I had absolutely no intention to upset anyone. The blog represented my personal experience and the subject of Equality of Access to Treatment and Research Trials was a theme of a presentation I gave today at the Leah Lederman Lecture today at The Royal Society of Medicine.

I understand one of the improvements Health Unlocked are making to the site are categories for blogs and this would seem to be a good idea so users can choose the category of information they wish to read.

with best wishes to you all. Annie

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50 Replies

  • Hi Annie, I don't know what is happening to my iPad it seems to have a mind of its own,

    This is a very interesting post and should be available at point of diagnosis.

    Most of us don't start looking into the bigger picture until we have started treatment. Or in some cases finished 1st line treatment We assume our local cancer centre is doing what's best for us and don't even think of funding the shock of diagnosis is overwhelming.

    I think some of us may find it very depressing to realise that our best hope for a long survival means that we have to relocate, an option that isn't practical for most.

    Challenging medics can be quite daunting too as our culture is to trust the Health care professionals who look after us.

    Some of us my not feel articulate or confident enough to take this on when we are not at our best .

    I wasn't given a choice of treatment, I was told what would happen as I'm sure happened in most cases.

    The only way forward for the rest of the UK is for lots of noise to be made so that we can all get a fair crack of the whip.

  • I totally agree with your point Chris. All those who are interested in the lobby should join forces to help those who are less confident at taking on the authorities. If there is enough of a wave there will be improvements for all. You're quite right about relocating though as you know I have a virtual existence anyway so relocation doesn't actually mean getting in Pickfords or anything as radical as that.

    Hopefully more ladies will join the lobby. Any takers out there? Send me a PM.

    love to you all. xxxx Annie

  • Hi Annie .. I was shocked by some on the things you have said .. I often read your campaigning Notes from the Welsh and now London. I wonder, given what you know, if you could see the following scenario happening. A patient is told by an oncologist that they are setting up a trial in their own hospital and this may be an avenue that patient could take. It's subsequently found that because the disease can't be monitored by CT because of microscopic disease and there is no CA125 elevation to go on despite widespread disease throughout the abdomen. So carboplatin is an option and the trial is out. Then the wind of change says IV platinum drugs are out of fashion because of recent emotional media outbursts and a natural move towards hormones and biologics and because of recent breakthroughs in knowledge. The patient is eligible for another trial in another Health Authority but the team don't refer her or tell the patient about it because this trial has not been set up in their own centre. Tamoxifen is suggested without any other discussion or disclosure to the patient. The patient finds out about a trial and then understands that the only way to get on another hospital's trial is to find out about it herself. Annie, could this happen and is this in-house only standard process and par for the course ? X x

  • Dear Tina

    I've joined the SE London Cancer Research Network and sit on their committee. Yes your scenario is absolutely correct re referrals to cancer drugs trials. The referring NHS has to pick up any care costs that are not covered by the application for funding for the clinical trial. This may be a barrier to referring patients if the local oncologist knows their NHS would not agree to support referrals to other clinical trials. I for one would lobby for a central fund to facilitate referrals between NHS areas so that no patient is prevented from entering a trial they are suited to. It would ensure trials recruit the best and most suitable patients, it would give the local NHS oncologist first-hand experience of a trial they are not running in their hospital, and it's another hope for the patient who may well profit from their engagement in the trial.

    In London it is said by the SE London Cancer Network that there is competition between the high-achieving clinicians working in hospitals and it was suggested at the last meeting that it might dent their pride to have to refer a patient to receive more experimental treatment in another hospital. To be fair this is being tackled in London by the Cancer Research Network and the Pan London NHS Group which I sit on and hospitals are already working more co-operatively. If it's happening in London I daresay the situation is much the same elsewhere. It's an extreme case in the devolved administrations. I daresay had I had a cancer that the Welsh NHS could not treat at all I would have been referred to England but as there is treatment in Wales for ovarian cancer - albeit 'standard' treatment in my NHS - then they were not prepared to refer me.

    I never did get to the bottom of the argument Cardiff and the Vale had for not referring me as requested to be assessed for a clinical trial in Bristol or the RM. The secretary at the RM was forthcoming and said it was a funding issue with my local NHS board and that's what finally made me find a new primary address. My oncologist said it was because the trials would be coming to the Velindre .... eventually. My response to her was 'that's not going to help me. If I can't access the trial from here I'll move to where I can access it'.

    My experience is that patients have to find out for themselves about clinical trials and I have had a lot of advice from Target on this as they have a member of staff who is a scientist working on clinical trials and is their Head of Research so he's very well informed on clinical trials throughout the UK. There is also a lot of knowledge to be mined at Ovacome and Ovarian Cancer Action.

    I was a bit taken aback to be told at the RM that I would not be eligible for many clinical trials unless I had received Taxol as part of the treatment. This is their reason for prescribing Taxol this time rather than Caelyx which Cardiff had suggested. I did check up the cost of Caelyx and it was cheaper than other options. Take a look at the article at which might explain the current popularity of Caelyx.

    We don't have to be rude. If we're offered Caelyx we could casually ask if that's a cheaper option for the NHS Trust than Taxol.

    At the end of the day these wonderful oncologists train for half their lives and continue to train, take exams and study. They want the best for their patients. You'd be doing them a service by asking them some gentle probing supportive questions and sending the odd patient letter or comment back to the hospital management boards who are the ones pulling the strings.

    xxx Annie

  • Thanks Annie .. You set the position out straight .. And I really appreciate your resolve, wider political motives and your spirit . I'll post later. X x

  • Hi Annie,

    fascinating stuff and all very unnerving. I've not worked out the role of HIPEC in peritoneal cancer yet- it's standard treatment in USA for grade 3 b downwards, but not really offered in the uk . I know the jury's out on hipec , maybe it's not the best option, but odd that 2 countries have 2 different guidelines for the same condition. I did ask for myself as actually new my ppc was of recent onset and although extensive seedlings, all were tiny and disease overall very low volume. Still wonder now , but hopefully dose dense chemo just as good,....

    Biggest problem I feel is that you don't know if you would be offered different and superior treatment at another hospital unless you actually go along the second opinion route, which you can only really do once. Many of us live close to a big teaching cancer centre , but have other even bigger cancer centres within a 1-2hr radius- would they be better, how do you know before you start treatment ?

    Have you had any problems with a dual/ virtual address? Seems in other areas this is getting more vigorously checked out and it's now routine for GP s now to demand utility bills in your name etc as firm proof of actual address. Hospitals are also getting very vigorous with this

    Keep up the fight Annie!

    Best wishes

    Hilary xx

  • Dear Hilary

    You've made important comments. As for HIPEC my friend had that in Basingstoke for treatment for Pseudomyxoma peritonei and I asked my surgeon if it were offered in Cardiff and the Vale but they said no. It is available at The Christie - see - so it might be worth asking for a referral there to discuss this with them or just paying privately for a consultation if you want to shop around more than one second opinion. It seems to me to make sense whilst they have your guts out to give the abdominal wall a wash and I asked as I have a similar presentation of tumours to you.

    Where I'd start to find out about different centres is here on Health Unlocked. I'd put up a blog asking for recommendations for the sort of treatment you want - or recommendations for treatment for your particular cancer. You can then follow up the leads that strike you as important and/or convenient.

    With regard to ones primary address in the UK we are a democracy and you can chose to live where you please. We have a boat in Plymouth and I did consider registering that as my primary address as the Derriford have an excellent research team. I know this from chatting with a member on this site and then looking up the hospital and its research interests.

    I do have a tenancy agreement but the GP practice didn't ask to see it as they were happy I had an NHS number and a referral letter from my former GP in Wales. I've chosen to relocate my primary address but I don't intend to do this in a cloak and dagger sort of way because I want to talk about it and the TV programme next month will do a little piece on my move to London to get better treatment. My bank and some other statements are sent to my primary address in London, and I have changed my address on my driving licence. It would be unreasonable for GP practices to ask for a utility bill as people who rent sometimes pay the cost of utilities as part of their rental agreement. Both my former and current GP are aware of the situation as are the hospital staff and nobody seems concerned. I was told at the hospital that a number of patients have two or more addresses. We can therefore choose which one is our primary address.

    It was quite an extreme thing to do but then I lived in Wales. I believe if you live in England you have a choice as to where you access your specialist treatment - though I'll try to check that out and will report back below.

    Hope this is helpful. Perhaps we should link up and do some research on that HIPEC for women with our presentation of tumours?

    Sending loads of love xxx Annie

  • Hi Annie .. I don't think it's extreme on your part.. Its logical. The sad thing is, many people can't afford to get a second address. It's strange what checks are being done to curb internal medical tourism, but when someone from abroad (not Wales!) turns up in England for treatment, doctors are reluctant to check because they don't want to police the system. I wonder why that is. I've found that a person needs sharp elbows and a voice to stand a chance of a trial which fits snugly and even then we have to negotiate the pride and competitive emotions of some doctors and second guess why certain decisions are made on our behalf by our doctors. And then we may find that certain nodules for example weren't removed because only so much theatre time was allocated or intensive care beds aren't available. Then there is no openness about this and the patient can assume they still have visible disease because surgery wasn't possible but it was in reality that Betty's knee op overran and less time was available than intended because the surgeon has 2 more ops to do that morning and 3 patients need canulas. Besides, theres only 1 intensive care bed and this may be needed for Flo on Ward 7b later. The hospital management don't say there's a theatre spare in the local private hospital. If you have the op there on Tuesday, you'll get the same surgeon, but for £15000 say, your surgeon may remove all visible disease and your subsequent chemo may be more successful and you may live longer or your life may be saved. I wonder why the hospital management don't say that? It would certainly expose treatment decisions even if patients can't pay. I had no real understanding about these constraints. I think the lack of transparency is quite frankly immoral in the extreme. That's what I find extreme Annie. I might have blips in my understanding in this post so apologies if there are. There was a book out once called 'How to stop your doctors from killing you! whose title amused me at the time. I can see some of the constraints on hospital managers and the moral difficulties they have, but for me, the lack of openness is shocking. I'm glad we've got you and people like you to see the wood through the trees. Love Tina x x

  • Hi again Annie .. I'd posted in the night but have just woke up in more ways than one. I'll be writing to my MP today explaining the situation and asking for an interview and for questions to be asked in Parliament. X x.

  • What I would say Tina is that the NHS in England is extremely transparent compared to Wales. I've checked on the NHS Choices website about patient choice. As cancer patients in England you do have a choice as to which hospital you attend but less so than for other conditions. You also have the opportunity as a patient representative to be part of the commissioning and management decisions in your local NHS Trust. If you feel you have received substandard treatment you can ask about being referred to another.

    You can check out Patient Choice in England at

    There is also a review of the NHS in England which aims to improve the poorer performing hospitals. Every hospital is reviewed and the reports are available on the Care Quality Commission website:

    The scenario you describe governing the management of the NHS services is correct. It's a balancing act but it's also sometimes dependent upon individual members of staff influencing the hospital board to support excellence in their area of clinical care and their interest in clinical trials.

    A good recommendation for your MP would be to join the APPG on ovarian cancer. The next meeting in Westminster is on 30 October and will discuss the Be Clear on Cancer Campaign, the future of the Cancer Drugs Fund and the impact on specialist commissioning and whether it will improve outcomes for ovarian cancer. I had a meeting with an AM and she wrote to the Minister for Health but I'm not so sure that route was fruitful. I collated some data from my ovarian cancer support group and then wrote to the CEOs of two Health Boards in Wales.

    If women are concerned they have their backs against the wall - and this might be more the case for those living in the devolved administrations - relocating doesn't have to be hugely expensive. You'd just need someone you trust with an address where you want to be and someone who will forward your post. The real cost is travel and if necessary the odd night in a hotel if you haven't got somewhere you can stay overnight.

    Hope you get the response you want from your letters. I'd love to know how you get on. Of course you can never undo things that were done wrong but all we can do is ask for improvements for those who follow in our footsteps. xx

    Love Annie

  • I'm from the U.S. where we do not yet have "socialized" medicine. The situation you describe sounds nonetheless all too similar. My daughter was fortunate to live within 2-1/2 hours of one of the major cancer centers in America. Although her ovarian cancer had advanced to Stage IIIc, her expert oncologists surgically removed all evidence of disease. With chemo, she enjoyed a 21-month cancer-free interim before her second recurrence. Once again she was NED following surgery and enjoyed almost 3 years before her next recurrence. She is currently fighting for compassionate use of a trial drug from a pharmaceutical company that will not give it to her, despite requests from her doctor and preapproval by our FDA. Ovarian cancer awareness and advances in treatment are desperately needed worldwide.

  • We heard the story of Andrea Sloane on this site and some of us signed the e-petition to support her case.

    So often we are critical of ourselves in the UK. We do have an amazing health service but it's strapped for cash so I rather think we should be looking at other models to give patients the sort of experience which has helped your daughter so much. The patient treatment pathway is to consider surgery after diagnosis and at first relapse but I don't think many patients are aware of that. My local services in Wales don't offer it at all and I'm not at all sure that complies with the agreed procedure.

    I'd be interested to hear how much the patient voice counts in the US. In England the health service are inviting patients on to commissioning boards to take part in management decision and to be lay assessors of clinical trials. Someone from the Netherlands told me this is something very special about our service here in the UK. Next week I'm addressing a room of GPs and oncologists at the Leah Lederman Lecture in London. Is there such strong patient involvement with you?

    I've only ever been to the US once and spent the week in the ICU of Knoxville Hospital. I should have asked more questions when I was over there! xxx

    I do hope your daughter achieves her wish. Please let us know how you get on.

    best wishes.

    Annie x

  • Very interesting to hear all this, Annie. Perturbing re the very high variation in different centres of NED after surgery. I myself am fortunate to live half a mile away from the Beatson Cancer Centre in Glasgow, which certainly made me NED after surgery - the surgery was done by a surgeon who had just become consultant having trained in gyn oncology surgery in England, in Tees-side, I think. She did very well. I haven't seen or looked for any figures in Scotland, but suspect the Beatson is the best we have.

    That is marvellous all the work you are doing. Thanks very much.

    All best wishes.

    Eileen xx

  • Thanks so much Eileen. I do need to double check on all the facts I'm sharing with you. On Wednesday I've been invited to open the Leah Lederman Lecture at the Royal Society of Medicine with a 25 minute address on my experience. The list of speakers for the day is overawing to start with let alone the audience. I guess some will be from Wales. What on earth will they think?! However I'm committed to this cause and as I have a wonderful opportunity to speak to the most eminent medics in the UK I might as well live by my principles and 'say it as it is'. That's the title of the talk they've asked me to do. xxx love Annie

  • Good luck. Am sure you will do well.


    Eileen xxx

  • Annie , as usual your knowledge astounds me! Please do a blog on the lecture ,as I and others I'm sure ,will be really interested. The whole situation about differing treatments and outcomes makes me so angry and also quite frightened for the future. Keep up the fight.... Dy xxx

  • Dear Dy, I've been thinking about being a patient and what this means because this is one of the themes I'm going to address. When we started on this journey most of us were Naive Patients. We could not judge and we accepted what we were told. I could list a dozen things I asked when I was given the wrong reply. It is a particular weakness with ovarian cancer because that first surgical procedure, to remove all visible evidence of disease, is crucial. We don't have time to become Discerning Patients in the whirlwind of early diagnosis and we go into hospital assuming we're getting equal treatment.

    A lady in my support group had surgery in 2012. She asked a senior consultant at Cardiff and the Vale how long the surgery would take. The answer, '35 minutes or 2 and a half hours'. I didn't ask the question myself but I believe this account because I too had 2 1/2 hours' surgery and at the time I thought I was lucky. I didn't realise patients in the adjacent health authority could have surgery for 5 or 6 hours if necessary. This must be addressed. Every hospital has staff who are competent to carry out surgery and who could render 75% of their patients to a state of having no visible evidence of disease. If every woman going into surgery asks that question no hospital management would get away with offering sub-optimal surgery.

    I just hope and pray I am seeing the picture as it is because if I am not I'm going to make a huge fool of myself.

    Love Annie xxxx

  • Annie , I'm positive you are right on all counts. I too ,took everything at face value and have been really lucky in that the surgery removed all and the first line chemo was successful. Its now that I understand so much more and want to make changes in the future for me and others. Its such a complex disease and although I don't want to be a tricky patient I do want to help myself and be involved in all decisions and feel strongly that its my right to do so as its my life . I have a bit of a health background work wise and hope that helps me understand and gives me more confidence in asking questions. I'm still recovering I think ,from the trauma of it and am looking now at how to get a bit more involved . I'm coming to the APPG in London and am interested to find out more about how all these issues can be addressed. Best wishes , dy x

  • Hi Dy, let's meet up as I should be going to the APPG too. xx

  • I am getting a bit bored with this too. Vicky

  • Oh dear Vicky, what is boring you? Is it me?

  • I am sorry, but I agree with you. Let's just part as friends.

  • The easy answer is, if it bores you don't read it. There a plenty of us who find it VERY interesting

  • Wow, but its such an information rich post -- have to disagree!

  • Vicky, I, for one, am glad that Annie keeps on with her information and interest in fact-finding. I wish I had her energy. Boring? Ummmmmm, no!

  • Annie it defiantly is not you. I think you are a very interesting lady with a lot of guts. You are really pushing for the ministers to sit up and do something about OC. I just wish I could be like you and really make a difference. Annie we salute YOU . Love Babs x x

  • Thanks Ladies. Feedback is always good and I'm happy for you all to point out ways we can improve. I'd hate to upset anyone. xxx

  • Dear Annie , I fail to see how on earth you can be boring or upsetting anyone here with the most valuable and informative information that you are so thoughtful as to take the time and trouble to share with us . I know that there is a lot of women on Ovacome that are so very grateful for all that you are doing in pushing the various parties to sit up and listen and to get things changed for everyone .

    Love Jan xxx

  • Ladies,

    Whilst we are keen to provide this facility for open discussion and debate, and keep a very light touch with regard to moderating the site, there are occasions where we feel it necessary to comment ourselves. This is one such occasion.

    May I remind you of the post (which is pinned) regarding providing advice here:

    This thread discusses clinical matters which are factually incorrect (For example the issue of 'radical' surgery, and the impression that clinicians in some way withhold the best care). In our experience (which includes medically qualified staff talking to thousands of women each year) these assertions are not generally a true reflection of the vast majority of women's experiences.

    The matter of surgery for example is not at all clear, and Ovacome has been working with the BGCS to establish what the true beliefs and barriers to 'radical' surgery are. We have surveyed over 80 Specialist Gynae Oncologists and only 40% believe that based on the currently available clinical evidence, radical surgery confers a survival advantage. The full survey is being written up for publication and the initial results have been fed to a NICE inquiry of the matter which is due to report shortly and will be publicised here and in the newsletter as soon as it becomes open to the public.

    Ovacome also work on identifying and challenging variations at a network level by producing an annual report called the quality profile available on our website here: .

    We will be doing so again next spring, and again will be inviting members to come to London to lobby their MPs over issues based on the most robust NCIN data. We will also be holding a lobbying training day in November, and will post details as soon as the final agenda / speaker list is available.

    Lets just be clear - UK survival is not the best in Europe, nor is it the worst - Its about 1/2 way down the list, and in fact that list includes data from countries who don't even collect the data (So you could question the veracity of the list in the first place) There are international benchmarking studies which are looking at the different approaches/outcomes and we report and act on them accordingly. More generally in the UK we do have pretty robust systems in place. If there were treatments that had crossed the threshold of proof (Phase 3 clinical trial) and showed a clear survival benefit then several things would happen - Clinicians would demand it, Ovacome would campaign for it, NICE would review it and issue guidance on it. The fact that those things haven't happened for certain treatments demonstrates clearly that there is not sufficient evidence for it to be part of general care (For example HIPEC)

    The point is this - A newly diagnosed woman reading this thread might incorrectly assume that her planned care was in some way sub-standard, and that is most likely untrue. Please could I ask you all to consider the impact of your postings before hitting the submit button. For many women the relationship and trust that they have in their clinical team is well placed, highly valued and of great importance to them and their families. Lets not undermine that please. This platform is for providing support and sharing, not for personal agendas.

    Thank you.


  • Thank you Louise. I shall take your comment to the surgeon who provided such flawed information and I shall ask them to justify where they obtained their statistics. It is disgraceful to think they have made such wide-sweeping and inaccurate statements. I was going to do this anyway as I'm giving an address at the Leah Lederman Lecture at the Royal Society of Medicine on Wednesday.

    I have to say I have no personal agenda on this matter as I have relocated to London and have resolved the dilemmas some of us are facing in Wales and the doubt many women have across the UK as to what is being offered in each NHS authority.

  • Thanks Annie, It is a very divisive issue, perhaps the greatest in OC at present. Some passionately believe in one side of the debate, others the other. There has been, and continues to be significant discussion on how to resolve the question, and we are working with some of the top researchers/surgeons to identify a satisfactory trial design which would answer the question once and for all.

    Good luck with the Leah Ledermann lecture. Sadly I am elsewhere, but some of the Ovacome team will be there.



  • Thanks Louise. I for one didn't refer to radical surgery as I'm aware that the DESKTOP trial is still ongoing and I obviously don't have an opinion on whether it is advantageous or disadvantageous to long-term survival or quality of life and will leave that to the experts.

    What I'm critically aware of from personal experience and from the testimony of women in my support group that the 'standard' treatment listed in the practitioners' flowchart isn't standard at all. Hospitals that aren't even running the DESKTOP trial are telling patients they will give them as many surgical hours as they need to get them as near as they can to being optimally debulked. Personal testimony here on this site from a number of patients states that this can be 6 or 7 hours and using two or more surgeons if the hospital is aiming for an optimal debulking. Patients who are told they will have surgery of either 35 minutes or 2 1/2 hours - and that is the length of surgery I received, are clearly not getting the same 'standard' treatment outside trials. It is this I'm querying and something that will be aired and debated with patients on BBC Wales The Wales Report at the end of October.

    I should add though, that whilst I was told by my clinician that not all resectable tumours were removed in my case I subsequently had chemotherapy and have been nearly 2 years without needing further cytoxic treatment. Extensive surgery would not do me any good because my tumours are in separate places and are small and widespread. Putting together the information I've read and what I've recently been told by Mr Barton at the Royal Marsden I assume I am one of the 25% for whom extensive surgery is not helpful. It hasn't seemed to have affected my subsequent survival so far as chemo therapy finished off the job the surgeon started.

    I continue to ask questions because I believe patients should be treated fairly and this doesn't seem to be the case but I'd be more than delighted to be told my understanding is flawed and that in fact all patients are accessing the same 'standard' treatment outside clinical trials.

    I'm sorry to be missing you at the LL lecture. It is a stunning agenda of professional speakers. I'm still a bit bemused why people who are listening to patients all day want to hear what I have to say but will do my best to give a presentation that meets the approval of Ovarian Action who invited me to do the talk, and is of some value to the audience.

    Best wishes.

  • N.B.

    I'm keen to clarify a point raised by Louise. I am in no way discussing radical surgery or the trial called DESKTOP that has currently rolled out across the UK to compare radical surgical techniques alongside chemotherapy with chemotherapy and standard surgical techniques.

    My blog is not factually incorrect. My own observations are from patient experience apart from the quote from a surgeon. I'll try to find out where that surgeon obtained the statistics because if they are inaccurate it is very worrying and inflammatory and of particular concern given the source of this information. If I find out there is no substantial evidence to that claim I shall remove the blog but I might put up another as it raises other rather worrying ethical questions.

    I just want to clarify the point. I am not comparing 'DESKTOP' surgery with standard surgery. I am comparing 'standard' surgical treatments offered to women outside any clinical trial. I am merely saying it is not 'standard' if all women at a particular hospital are told they will receive up to 2 1/2 hrs surgery and at the same time women at another hospital are told they can receive surgery taking double or treble that time. To me it that just doesn't stack up.

    I hope I've clarified any misunderstandings.

    best wishes and love xxx Annie

  • Hi Annie .. It's an Important debate and I'm glad Louise interjected. It's a debate worth having if improvements are to be made in the care of all if us and for that I thank you .. Love Tina x x

  • HI Annie,

    You have raised some important points. However just to be clear there is a difference between optimal, complete and radical debulking, also the DESKTOP series of studies are looking at surgery in various clinical scenarios. Desktop 3 which is currently open is looking at surgery for relapse (not the current standard of care). The extent of the surgery is a different matter. More information can be found here

    On a wider issue of patients being told how long their surgery is going to be - Usually the surgical plan is determined following CT/Radiological assessment and discussion with the MDT. I would be surprised therefor if there was a unit standard as everyone's case has to be discussed in the MDT and individualized plans debated etc.

    With regard to individual surgeons perspectives - As I have said, there is widely varying opinions on the data available. Obviously the surgeon you are speaking of (and I think I know who that is, and I have the greatest of respect for them) has one belief, but until beliefs are turned into NHS guidance, one cannot say that one doctor is right or wrong and every other doctor should do X

    I look forward to hearing back once you have discussed it with them.


  • Just wanted to chip in late on this one. The one thing that is not in dispute is the fact that we as patients, doctors and all health professionals at the first line of healthcare, and policymakers need to be more and better informed. This IS complex and it will be inevitable that in sorting the wood from the trees in a discussion like this that there will be odd points of disagreement. It simply serves to highlight, to me, the vital importance of posts and discussions like this. The value of a personal perspective is undeniable - and because it is, by definition, subjective : thus, the more it can be rooted in a researched and informed position, the better. I doubt many patients could do that as well as Annie has here. I actually love that Ovacome has engaged in this. Even the points of debate and difference arising are important as they carry messages in their own right about things that need to be clarified, information that needs to be richer or better available, so that ultimately we ALL know and can communicate the breadth of the problem that we have with healthcare, cancer care, and OC care, in this group of countries - and so that patients can engage more in their treatment, feel more empowered and better able to face this tough battle.

    Just sayin'. ;-)


    Sue xxx

  • Thanks Sue. I think one of the opening sentences in my presentation on Wednesday might be, 'For too long too many patients have taken too little interest in the management of the health care services'.

    Recently I've been invited to join the NHS-led Pan-London Cancer User Partnership Group. Its purpose is to share the 130 (ish?) points to improve patient experience across all London Boroughs. Senior NHS staff have been absolutely honest and have said that cancer services are getting more and more expensive and the NHS needs to consider ways of improving the patient experience whilst providing an economically viable service. They are consulting patients directly to understand which changes should take precedence and what will make the most difference to the quality of our experience, In that forum topics are aired in a balanced and open manner. It seems to me to be an excellent model and I'd love to know if similar groups are meeting in other parts of the country.

    xx love Annie

  • Can I just make one final point? This presentation you are giving is because of a death in the family in one of my oncologist's colleagues. It is therefor a situation that involves dramatic situations, etc etc etc. Please be careful with your wording, it would be very kind of you to mention your respect for the lady concerned and her family's generosity to the cancer community both in the UK and worldwide. Vicky

  • Dear Vicky

    I'd pondered over your post for ages as wasn't quite sure what you meant so I didn't respond. In re-reading it this morning I realise you're perhaps referring to an oncologist in my area who has suffered a family bereavement? My presentation on inequality of access was a general commentary and I said that all staff I have met in the last 2 1/2 years have been fantastic. This lady was referred to in the presentation as 'my wonderful oncologist'. My views on inequality of service are not to do with health professionals but are more to do with hospital management and politics and I promise you that theme was repeated throughout the day by other speakers from the professions.

    I did word my presentation very thoughtfully and it was well-received. Before I drafted it I had a long conversation with the chair of the meeting to ensure it was fit for purpose and balanced and the feedback I got was that it hit the right spot.

    I've taken on board other comments on this thread. It's a difficult balancing act. Some people are interested and motivated by the debate and others are not and find it disrespectful. It was never intended to be so.

    I hope this helps to clear up any misunderstanding.

    Love Annie

  • I rarely post but I am a bit unnerved by this thread not having checked into ovacome for a while, it seems that this forum may be going the way of Macmillan where personal issues are argued out in public view and lots of people get upset.

    Some of this thread is speculation as every case treated is on an individual basis and some operations and treatments vary because of differing clinical reasons. Some newbies might be very unnerved and upset to think their operations or treatments were sub standard if they didn't reach a certain time limit, as has been inferred.

    I think this thread is very confused and would have been better as a private discussion. As an ex health professional, am disappointed that ovacome has let it carry on and am much less inclined to visit the site for support in future now. I wish everyone well as I'm sure no one has meant to mislead but this thred should be removed.


  • Dear Polly,

    I agree and I am sorry. You are right it has gone on for too long. I had hoped that my messages above would have been noted and seemingly that has not been the case. We have received phone calls and PM's in a similar spirit to your post (which I am grateful that you have had the courage to put up). It seems that we need to take more affirmative action to stop people using this place for personal agendas, and we will be reviewing the terms and conditions appropriately. This is a place for sharing experiences and providing support. I hope you will bear with us, and visit again.


  • I absolutely agree with your comments. I don't know what has

    happened to this site recently.

    I thought it was to help each other through difficult times

    or worries ahead of us, and give advice to newcomers

    who are obviously very frightened at the prospect

    of being newly diagnosed and surgery to follow.

    I would also like to add I cannot fault anything with the NHS

    from visiting my GP through to surgery 8wks later followed by

    chemo etc....

    This is just my opinion and I don't wish to upset anyone by it

    Having recently lost so many lovely ladies on the site please

    can we not complain so much about NHS treatment. As said

    above that is surely for a private discussion.

  • I agree, I have avoided getting involved in this silly thread about the NHS and surgery times which I find unbelievable. We can all pick faults but that is the nature of life, humans make errors of judgement everywhere not just the NHS. Xx

  • Thank you both.

    There are many prevention and treatment possibilities that sit tantalizingly close to fruition, and its as frustrating for everyone involved. We are working furiously in the background to 'oil the wheels' so to speak and to encourage research/consensus/adoption etc. Its why we have a policy of only 'promoting' treatments which are validated and available, so as not to cause upset, anxiety and disharmony to the many who for geography more than any other reason have differing opportunities.

    Sharing personal experience is a really valuable way of sharing intelligence. We just ask everyone to be mindful of others feelings and to stick to the rules.

    L x

  • Louise, two months ago, I decided not to post anymore because of blogs like this. I very rarely read the blogs now but was told about this one by a dear friend. As I previously said, to me Ovacome has always been about compassion, respect and not feeling alone whilst travelling along this journey, whether you are the patient or a loved one. We are all entitled to our opinions and to act on them if we feel this is necessary BUT we need to be considerate to others and their feelings and keep certain issues private. Some of what has been written is scary stuff and I don't need that right now. We are all individual and no one treatment fits all unfortunately, but that is the way it is.

    I hope this site gets back to how it was three years ago, there are many strong women putting up a good fight and a good bunch of posting carers. I can but hope, Gill xx

  • A big thank you for every thing you are doing. Love Btte xx

  • I wonder if it's a good idea to post up my presentation at the Royal Society of Medicine yesterday so everyone can see it was a balanced viewpoint but one that insisted that access to healthcare is currently inequitable. Chris's post this morning breaks my heart.

    Ovacome got the biggest accolade of all. I told them this site was a lifeline to women with cancer and how it had helped so many women adjust to the idea of having ovarian cancer. It is isn't it. xxx Thanks Btte.

  • This is a fantastic arena, and its good to see you can learn, commiserate, laugh cry , etc. etc. You only need to read and answer what you choose. You keep posting Annie and I will keep reading. Love Btte xx

  • We're all different aren't we. I like to know how I may help this cause which is my reason for being and it's one of the things which is helping me. Every little step may lead to strides in the minds of medical health professionals and in the minds of the general public. I wouldn't really understand the debates from research alone without listening to the experiences of all sorts of people. The fact is that political decisions affect patients in a very personal way. If these debates took place in a private setting, then I wouldn't be part of them I'm sure. On the next agenda we might find that involving the patient in their own treatment decisions is key but its hard to take everything in when told and expected to take part on the hop. Reflection is a good thing sometimes. Love to all. Tina x x

  • Hi everyone ,I live in Australia and this site was recommended to me . One of the first ladies who really seemed to listen and was just wonderful and just gave unconditional caring Fernanda . She saved my life or at least made living through this bearable . Also sometimes this site was informative , sometimes fun , sometimes political . All of this is great . If someone gets upset ,let's just remember we are all under incredible stress at diff times ,diff reasons , whether it be support pain confusion or just being alone . You are all great ! I know Australia is a long way away and other people might be in Brazil but heh we all have a common issue . I know i need support and info as I don't have family support at all really and because "no chemo " I seem to fall through every crack there is .

    I do think we should try and keep a bit of an eye out for each other wherever we live . eg I can't find Fernanda so don't know if I can do for her what she did for me . Thanks heaps from this Kangaroo or Possum 56 xx

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