Collecting our own research for ovarian cancer

Is there a site that collects symptoms, risk factors, treatments, age and stage, etc. What each persons does that they think is helping them not reoccur. Diet, exercise, continued treatment etc. I feel world wide we should collect this information, maybe we could connect some dots. I have 3C ovarian cancer and have never been asked any of these questions by a doctor or nurse. Went through chemo but never had any follow up ideas to stay healthy. I do get screening every three months. I research healthy eating myself to feel I am doing something other than just waiting for the cancer to return. What country has the best success with treatments? So many questions and would love to have one site to go to collect this information. Maybe it exists and I don't know about it? Would love to have a site to collect this info. I want to take control of my disease and make a difference for all women and to give us more hope.

13 Replies

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  • Would be great. Not aware of anything all in one place. I have been doing my own research. It is a shame that there seems to be little research into how foods, supplements can help to fight cancer, but the drugs companies can't patent natural remedies.

    The nhs info on diet isn't very good. I asked to speak to a nutritionist and was told they would only refer you if you had a problem. I am doing lots to try to help fight my cancer. I am only recently diagnosed with stage 3c ppc and although i had a good diet before i am now juicing daily, low gi, no processed foods, minimal meat and cheese (not quite managed to cut out completely), mainly organic, sprouting my own seeds to name a few things. Also looking at supplements and researching what is good and not good with the type of chemo i am on. I have had differing advice from the hospital and unless they can provide me with hard evidence to not take something then will look to introduce certaim supplements too. My consultant is not going to know whats hit him when i see him on friday with a huge list of questions. I will do everything i can to fight this cancer.

  • Hi, i don't know of any one place where information is gathered, but in regards to seeing a dietitian/ nurtritionist I believe under the cancer care pathway you are entitled to be seen if diagnosed with cancer.

  • Your comments could have been written by me. I asked chemo nurses about vitamins etc. but was told was there was nothing I could do to help myself. My oncologist seemed to poo poo my questions about vitamins and diet. I had to do my own research and am doing almost exactly what you are doing. I did find a two session talk about nutrition at "Maggies" which is based at The Churchill Hospital, very helpful. There are other Maggies around the country. Good luck to you.

  • I reiterate what the others have said...don't know of any research but if you are looking for information on looking after yourself after cancer I can't recommend the Penny Brohn centre enough. They have residential courses which are unbelievable.

  • Penny Brohn has the most amazing residential courses and will support you with healthy lifestyle changes

  • I think the three charities that support people affected by ovarian cancer have information on their websites, and then there's a Facebook Group Ovarian Cancer UK that you can join and start discussions on diet and exercise, etc. One could also start a new Facebook Group specifically to discuss these things and upload information.

    Pharmaceutical companies develop drugs and treatments for cancer from natural products. Taxol is derived from the bark of the Yew Tree but it's recreated synthetically in a lab to meet demand and keep costs down.

    The course I went on last week was a real eye-opener on why specific diets and supplements don't have any relevance to the process by which cells divide uncontrollably and become malignant. It was also an eye-opener into the mindset of people whose lives are devoted to research and one day to finding a cure for cancer. Their commitment and passion was just amazing and it blew away any seeds of doubt I might have had in the past about a conspiracy by the pharmaceuticals to only develop drugs that make them money.

    I think what is helpful is to feel we are doing the best we can to keep ourselves fit and healthy and that is no different to anyone else. If following a specific diet or taking a supplement makes us feel good then as long as it doesn't actually do any harm there's no reason not to try it although it could be an expensive route to take.

    In the early days following diagnosis I was confused by all the claims made in various newspapers, and indeed within this community, about diet and supplements so I booked an appointment with a homeopath who had trained as a doctor and specialised in oncology. She was very helpful and recommended a balanced diet, healthy lifestyle, and her own take on natural remedies which I tried for a while and which were available on prescription from the NHS.

    I had some advice on nutrition from my hospital but I found the best all-round advice, including a really helpful session on nutrition, was from Penny Brohn on their 2-day course which is free-of-charge. Penny Brohn have a Community on Health Unlocked which might be a useful place to have a discussion on lifestyle choices to maximise survival after a diagnosis of cancer. Target Ovarian Cancer have sponsored courses at Penny Brohn for some years now. It might be worth contacting them to find out whether there's another one in the pipeline.

    Hope this is helpful. xx Annie

  • Annie, you always talk such good sense! I am currently being bombarded with well meaning articles etc on nutritional supplements and diets from friends and family. I would be bankrupt if I tried them all! I would love to find a magic pill.

    We have to have faith in our Onc that they would love to cure more people for less money and would willingly use anything that was evidenced to work.

    Your post has helped me de-scramble my brain a bit ☺! I have almost been feeling guilty for not trying everything going in order to stay alive! I do however, believe in putting good quality nutrients, free from chemicals, into our body gives us a better foundation for optimum health.

    I also believe that reducing stress helps so thanks again for helping to de-scramble!

    Sandra xx

  • Hi Sandra,

    How I sympathise with you. Since my diagnosis nearly 5 years ago I've been bombarded with well-wishers telling me to eat strange foods. One lovely neighbour was insistent a diet of cottage cheese and flax would keep me alive. I've been offered supplements, and have been told about weird and wonderful therapies. I even got a huge bag of supplements from the widow of a friend with breast cancer who spent £80 per month or more on various products bought from the internet. I've put them in a cupboard as I feel guilty about throwing them away but with my sensible head on I would say they clearly didn't do the trick.

    I've been told by someone who has a water diviner friend that they gave him a drawing of my house. He looked at the drawing and without visiting or even meeting me sent a bag of supplements and told her the water lines under my house would cause disease such as cancer and lupus and that I should change the direction of my bed. I could have told him I often sleep diagonally in my bed so that might scupper the water theory.

    I'm not in the least critical of trying things so long as they're safe and do no harm. Each one to their own but I welcome some good sense and practical thoughts. I did try Iscador (derived from mistletoe growing on an apple tree) on the advice on the homeopath. It's a NICE approved drug and is available on the NHS so I assume it has some worthwhile properties. I still have some in my fridge and take a swig when I think of it which isn't very often. If people think something does them good then it often does.

    If a diet rich in good nutrients, free of chemicals, exercise, watching my weight, not smoking and moderate alcohol intake prevented cancer I wouldn't need to be on this site! For some of us it's just bad luck, and others have a genetic predisposition to developing cancer. I agree wholeheartedly with others who say little is being done in the UK to prevent cancer by raising awareness of lifestyle links to cancer and other diseases

    I'm glad you feel your head's unscrambled. Friendships on this community have kept me sane over the years and we've had many laughs and interesting conversations. Keep on with the good nutritious diet and the odd treat if you feel like it!

    Sending loads of love xx Annie

  • There was some research which Macmillan funded that showed physical activity helps with some cancers. They didn't include ovarian but did cover breast cancer which seems to be similar in some ways. It might be worth looking for that on their site. I was told to carry on eating as I usually did. I'm veggie and mostly eat healthily with a few less healthy treats (just ate 3 jammy dodgers). I like your idea of collecting information but to be effective as research it would have to include 1000s of women or preferable more. That would take a lot of analysis. It might be something that could be done at a European level. One of the things we would lose if we leave the EU (I'm not politicising as I'm a bit on the fence myself on that one) is that it's relatively straightforward now to develop protocols across the EU population , which is huge, and to include non-EU countries. I think it would need someone in a university to develop a proposal and then to look for funding for it, from the EU or other bodies, which could be charitable trusts or companies who support such initiatives.

  • Hi, very interested to read your post. I too have often thought that there should be a collation of information, to be made available for all.

    However, the reality is that there are vast differences globally with regards to the treatment of cancer, and to my knowledge hardly anything towards the prevention of the disease.

    I have been in the club for over 18 months now, and have received amazing treatment.

    However it must be noted that very little has changed in the U.K during the past 50-60 years in terms of treatment! With Three stages, surgery,chemo and radiotherapy.

    Unfortunately, there appears to be a great resistance within the medical profession, to considering alternatives,ie herbal ,dietary and life style changes, all of which I am convinced could help to cure the disease, possibly at the same time as the conventional treatments.

    I recall during my stay at Penny Brohn cancer centre, one of the nutritionalists said that stress plays a big contribution to the cause of cancer, so much so that when the body suffers stress, the immune system goes into shut down. That made a lot of sense to me, as for many years prior to diagnosis I suffered stress.Therefore whilst my tumours were growing and with no encouragement from my oncologist ,I decided to take control of my body, with a radical reform of my diet, much excercise, meditation

    And supplements to support my immune system. Results todate are good with a reduction in the tumours and an overall improvement in my health and well being.

    It is interesting to note that considerable funding is provided in other countries and especially the U.S ,towards alternatives, but here in the U.K they still remain dogged in their disinterest in alternatives.

    In life, we have choices to make, and I believe that looking after our bodies and our health is of paramount importance, so whatever we can do ourselves to support treatments in the cure of this vile disease, I say 'Go for it'

    Jackie O xx

  • Hi Bluehen

    It sounds like a very obvious and good idea and I am hoping that at least researchers are collecting the pieces of information that are relevant. When I started on this road over 4 years ago I was totally naive and perhaps had watched too many episodes of ER. I thought that they would be asking me all about my medical history and my diet etc. I even asked my GP to give me a copy of my medical history going back many years which I offered to my oncology nurse to give my oncologist. Even I could see from reading it the many times the GP I had then calling my condition IBS and even anxiety. She refused to pass it on saying the Oncologist would not be interested. I even thought he may be interested because my condition PPC was rare . Not a bit of it. Subject closed. No discussion.

    To come back to the idea of collecting all the data I am sure in this age of technology it is not impossible. The sad thing is for many women it is already too late . I will try to find out if anything like that is being done by researchers when I go to survivors conference in Dublin weekend after next. I have become so increasingly disappointed by the lack of information or answers over the past 4 years that I may even be afraid to put my hand up.

    XXX

  • Thank you all for your replies. Good advice from all. I am going to continue to look into this. I feel all oncologist should be collecting information and putting it into a world wide information bank which would not be difficult in this computer age. Not from just a select few but from every cancer patient. Then some dots could be connected. Plus after chemo, wouldn't it be nice if we were handed a paper giving us good advice on after care, nutrition and suppliments etc. I have a son that is a doctor and a son and nephew that are media specialists. Going to ask them lots of question regarding how we can do this ourselves to some degree if it isn't being done for us. Were there is a will there is a way.

  • I too feel that everyone should fill in a survey on lifestyle and nutrition at diagnosis and partway through their journey to highlight trends. Good luck with your own research. I'd be happy to participate.

    Sandra x

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