2 months past my "expiry date": i was diagnosed... - My Ovacome

My Ovacome

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2 months past my "expiry date"

gentle1 profile image
57 Replies

i was diagnosed in march with late stage ovarian cancer, i was given 6months........ reading your posts made me aware of the suffering for the patient and their family caused by conventional therapy, as a single parent with no family support, my wish was to have quality of life with my son for the time i had left, so i project managed my "inbalance",diet, herbs, tinctures, chi gong,meditation, refusing surgery, chemo and ct scans i have suffered very little, from a melon size 21cms to satsuma size in 8 months, consultant was gobsmacked!, and is presenting my case early next year, i have to say this approach is not for the faint hearted, the pressure to conform was unbearable at times, and no financial support from the nhs, however i was able to continue growing veg at the allotment which was a great pleasure, one that wouldnt of been possible with surgery and chemo, i feel very blessed and fortunate to have this life changing experience, i have no idea if the cancer will go...or return.... the destination is the same for us all, how we manage the journey is what counts. May i take your suffering and give you my happiness xxx

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kaz14 profile image
kaz14

Hi, I also have taken the conventional medical route which has served me well so far! However I am really pleased that the route you've taken has worked so well for you and hope it continues to do so. Good luck and all the best.

Love Kaz x x

Whippit profile image
Whippit

Dear Gentle

I'm really pleased your route has proved such a success and you remain so well. As you say not for the fainthearted. What's really positive is that your consultant is interested in your case. So often people who go down an alternative route are not supported by the NHS. Let's hope your therapy continues to work for many many years.

Love Annie x

in reply to Whippit

What consultant ?

Whippit profile image
Whippit in reply to

Gentle said, 'consultant was gobsmacked!, and is presenting my case early next year'. I thought it was interesting that the consultant had shown an interest in Gentle's regime. xxx

in reply to Whippit

But that is my point Annie, gentle didn't mention the NHS, but you did, so what consultant ?

Love x G x

Whippit profile image
Whippit in reply to

Ah yes, see what you mean. Perhaps the consultant is the person who suggested the regimen and not part of the NHS. Confusing. x

Whippit profile image
Whippit in reply to Whippit

Not that I would be daring enough to follow this example - but it's a matter of individual choice whether to accept treatment or not. xx

gentle1 profile image
gentle1 in reply to Whippit

Hi, yes i have had 2 ultra sound and a 3rd in January, there isnt much support the nhs can give, their hands are tied, i remember asking the consultant "what else is on offer" he just looked and said thats it, i told him my plan and he was interested, later on, i was "gobsmacked" when he said he would present my case, it would be wonderful if the best of both conventional and alternative treatments could merge, giving excellent support for all xxx

Whippit profile image
Whippit in reply to gentle1

Dear Gentle,

I thought that is how it must've happened and that you were talking about your NHS consultant as you mentioned the tumours shrinking so I'd assumed a scan had been involved.

There are many different ways of thinking about health across the world. I had a Chinese colleague whose father had cancer. He lives in China where the local medicine was totally different from what is available here and didn't include chemotherapy. The different approaches between East and West put the family under great pressure. Equally there's Ayurvedic medicine in the Asian cultures. Western doctors will tell you they don't fully understand cancer and if you look at stories of people such as Dr Servan-Schreiber, Dr Johanna Budwig and Lance Armstrong there do appear to be alternative ways of thinking in terms of diet and therapies but they are very much the exception rather than the rule and as I understand it they haven't been verified by science.

I was told about Iscador, which is available on the NHS. It's a herbal remedy that I was told could be taken alongside conventional chemotherapy and is accredited with slowing down the process of remission. My GP was open-minded about it though he said his training had given him no qualifications to recommend it. He prescribed it on the recommendation of a homeopath in London who specialises in the treatment of cancer. I've used it for about a year. As I say, there's no scientific way to assess its efficacy but, as my GP says, it hasn't done any harm, and who knows, it might have done some good. He did warn me not to place an unrealistic hope in alternative therapies.

This comment is not a recommendation to abandon conventional medicine for cancer. It's merely a reflection and an account of things that I've come across so far in my friendship circles and ideas that I've found interesting.

Whilst I wouldn't be brave enough to abandon conventional medicine in the UK I do see the argument for an integrated model of medicine which I've heard is the case for cancer in Germany where, to be fair, 5-year survival rates are good.

Just think. It's not so long ago we thought the world was flat!!!! xx

Love Annie

in reply to Whippit

I must come in here Annie to clarify a few things, gentle didn't say that she had a scan she said she had two ultrasounds ( a third one in January ) very different to a CT or MRI scan, don't you think that if the ultasound was as accurate they would use it in the NHS instead of a CT or MRI Scan ? (it is much cheaper). Gentle by her own admission in the past don't believe in CT or MRI scans.she also states she has been diagnosed at late stage (without having these scans) we all know an accurate diagnosis is dependant on a lot of things e.g. scans, operation, histology report etc. so how accurate the initial diagnosis is ( or the present one) leaves a lot to ponder on.

Having said this she has been awarded the DS 1500 and we all know the DWP don't award this for no reason.

which brings me to the point of her statement of having no financial help from the NHS this award from the DWP should ease her financial burdens ( the NHS already has a stretched budget) and it is her choice to go down the alternative route.

Another thing is while you are talking about complimentary medicine Gentle is not ...she is talking about Alternative medicine a very different scenario it bothers me that newbies might not see the difference.

Conventional treatment has been rigorously tested.

Alternative treatment has not. ( there are many claims out there that will be only too glad to play on the vulnerable at a price.

I wish Gentle well her life her choice.

Best wishes love x G x

gentle1 profile image
gentle1 in reply to

I will respond to your "understanding" of my situation, i was very ill when i was diagnosed, with accurate info i was able to determine what my body could withstand, bombarding it with radiation didnt seem like a good move? the scans are for the oncs benefit to assist with surgery..ultra sound showed everything they needed to see, as my body was not well enough to undergo surgery, i was buying time..maybe if the tumour hadnt shrank i would consider surgery at a later date, but at the beginning i needed something that would give my body a fighting chance...nurture not nuke!. as for your comments on " rigorous " testing..well...i think you need to investigate what "rigorous" testing involves, have you ever seen the burinski movie, this may give you an incite into big pharma,...last point,,,my finances have been eased with DS1500, however your treatment will have cost 50k min....my treatments 2k ... your treatments paid for by "us" my treatments by me...similar outcome??.alternative or complementary or conventional, choose which best fits your situation, comments born from ignorance and ego are not helpful to the newbies you seem so worried about!!

in reply to gentle1

Dear Gentle,

Thank you for you response, I am sorry that you have had such a hard time and wish you well in your chosen treatment.

I don't however share your view on conventional medicine or the testing and research that has gone into it... like I have already said ..your life.. your choice.. my life my choice... most of us are not in a good place when we are first diagnosed and we all want to give our own bodies a fighting chance for some of us this might be a scan for others like yourself might choose not to have a scan but this is offered to all and treatment too is available to you on the NHS you have simply refused this... again your choice.

Best wishes x G x

vipervictoria profile image
vipervictoria in reply to gentle1

I've seen the Burzinski movie, and I have also read the long arguments compiled both against and for his work. That Dr Burzinski still manages to practise is a miracle - he himself admits that his treatments are not fully tested and do not work on every one. His treatment programs can cost north of $100,000...

in reply to vipervictoria

Check out quackometer.net it often has some insightful articles and has covered Dr B often. Not to say its always right but it does make one think about all the things which are sold on hope more than science. Everyone has choices, true, but they need to be ones that are not only informed by a bit of research, but by real, in depth background checks. In my personal view.

Love

Sue xxx

in reply to Whippit

Hi Annie,

I just want to point out that Servan-Schrieber's work on the 'terraine' of the body/mind and the use of it as defence against cancers and recurrence is based on sound science as you will discover if you read him. Likewise Johanna Budwig, who was a 7 time nobel nominee. Like you, she would not knuckle under to accepted ways of doing things, and therefore was denied the kudos that should have gone to her for the amazing work she did with advanced cancers and degenerative disease. Those of us who kick against the norm are usually greeted as a bloody nuisance rather than a good thing by the powers that be, especially those with a financial interest. We challenge and thereby change, and I therefore welcome anyone who is prepared to share with us other ways to health than those we already know about. For the same reasons, I applaud your efforts to publicise your journey from Wales.

Best wishes,

Isadora.

Whippit profile image
Whippit in reply to

Dear Isadora

I'm so glad you pointed this out. I'm aware that Dr Servan-Schrieber's work was based on a considerable amount of empirical research and Dr Budwig was considered the greatest expert on oils and as you say won several nominations for the nobel prize. In haste to put across a point I was probably a bit too generalistic in saying they're not based on medical science. I should probably have said they're not based on 'received' medical science. Standard medical training in the UK doesn't include homeopathy or other treatments although it is an option for study in an intercalated year and these remedies are available through the NHS in some centres.

I agree with your point about the financial interest in developing treatments. It's quite an issue for me in that large drug companies fund themselves by discovering new synthetically produced treatments. Research into complimentary or other therapies isn't so well funded and doesn't receive international attention.

I was heartened to read about the volte farce of the Health Minister to Lord Saatchi's Bill. It takes a long time to challenge established ways of thinking.

If anyone is interested in looking up supplements and therapies my homeopath recommended a site that records information about treatments from a scientific point of view. Info can be found here.

mskcc.org/cancer-care/integ...

Look up products by alphabetical order, or type a name into the search box. At the end of each entry you will find a list of relevant scientific papers.

xxxx love Annie

gentle1 profile image
gentle1 in reply to Whippit

What a kind gift, thank you x

in reply to Whippit

Excellent, thanks Annie.

I xx

Dear Gentle,

I actually think that this post is not helpful to people that are on treatment (it is almost like saying do nothing and you will get better) now I can better that because I was given six months to live two years ago... having had conventional treatment I am still here.

I am however very pleased you are doing well... but it wasn't long ago that you posted a link to say that scans kill people...we know there is an element of risk involved but I have had many scans and over five years with a progressive disease is quite impressive.

I am very grateful to my oncology team and for the treatment I have had.

Best wishes love x G x

gentle1 profile image
gentle1 in reply to

i did what i had to do to get here!..as you have also done, i DID NOT say do nothing...far from it..that would be silly! equally silly to to embark on any treatment without full facts, which your onc wont know...hes not trained as a researcher...he has limited options to offer you...im looking outside the box to boost my chances....you do as pleases you but please dont jump down my throat and change my words to suit your ego! i am also grateful to my oncology team...i am equally grateful to my bin man, both doing the job they are paid for!!!

in reply to gentle1

Dear "GENTLE"

Thank you for your kind response.

Yes my oncologist is a trained researcher, and involved in many trials worldwide, sorry to disappoint but he does know what he is doing.

I could argue that my informed choice is more informed than yours. but what is the point ?

suzannehadenough profile image
suzannehadenough in reply to gentle1

I really DO NOt like the way you are speaking to Gwyn!! A long standing member of this group.. Please mind your manners!!

Congratulations!

It is wonderful to read of your success - thank you for telling us about it.

Although I share your dislike of the havoc caused by conventional treatments for cancer, and feel that it is a very blunt instrument, I succumbed to the pressure to have the least chemo I could negotiate with my oncologist, but tried to mitigate the damage, and enhance the positives with a personal regime of lifestyle and dietary changes. So far (nearly 5 years on); successfully.

I have no doubt at all that if these things were better understood and the drug companies less powerful, the human race would be much more healthy and suffer from fewer diseases like cancers, diabetes and heart disease; but the picture (incorporating both physical and mental health) is a complex one, and humans tend to reduce complexity to stupidity!

Long may your success continue.

Isadora.

gentle1 profile image
gentle1 in reply to

Congrats to you too!!, i love the way you "negotiated"...and congrats for transforming adverse conditions with wisdom, lifestyle and dietary changes are a must, thats what caused the inbalance in the first place...cancer certainly gave me a wake up call...rather loud..(.hehe) kind regards to you Isadora x

Hello .. I was given several months to two years and I know for certain that I wouldn't be here without conventional treatment. The drug that is my hope is just out of Phase II. I'm awaiting the opening of Phase III which though I know is randomised against carboplatin or combination therapy ... still gives me and other people hope. I know for certain that I couldn't have rejected the best advice. I'm glad for you though. Love Tina x x

gentle1 profile image
gentle1 in reply to

Hi Tina, yes we are all different, i know for certain i wouldnt be here if i went the conventional way...were both right in what we did...whatever we have faith in will work G1 x

vipervictoria profile image
vipervictoria

I'm afraid, Gentle, that I do not agree with you at all. As most oncologists will tell you, cancer can suddenly regress, fail to progress as predicted, etc., in the same way that it can suddenly appear from nowhere and take over your life.

Complementary therapies are only that - no competent therapist would ever advise a client to abandon conventional medical treatment. It is well established that some therapies are helpful to patients during and after treatment.

Please remember that there are some very ill women here, and be a little more cautious in making the suggestion that what you say has happened to you will happen to anyone else who uses the techniques you advocate so freely. VV

gentle1 profile image
gentle1 in reply to vipervictoria

no one advised me, i made an informed choice, i gave a rough outline of some treatments i used, (after research) i also researched conventional treatments, then i made an informed choice for my body, i am supporting my body to find balance on many levels, i know there are some very ill women on here, i am not suggesting anyone should do as i did, i was just sharing my experience, maybe just maybe one person will read my post with an open mind and benefit from my experince, that was my wish, to uplift not conflict G1

Lily-Anne profile image
Lily-Anne

What an amazing, inspirational post Gentle, to take the diagnosis you have received and reacted with positive steps to try and make a difference. I am a reluctant conformist and would be unwilling to have chemo should my results be less than favourable. I think it's very brave to stand up and do something different. May your journey be everything you wish.

I am studying for my psychology degree at the moment and we have looked at how stress can cause cancers. The power of the mind is incredible, the research is just amazing.

LA

vipervictoria profile image
vipervictoria in reply to Lily-Anne

OK, LA, I get the message. We are diametrical opposites. I hope your insights help you with OC, and result in a lengthy remission, forever. VV

in reply to Lily-Anne

Brave or foolish?

I note L.A. that you refused chemo too... but this hasn't took away your worry and if anything has added to it...of course this is your prerogative we all have to choose what we think is best for ourselves.

There are many brave and well informed people on this site.

Best wishes x G x

gentle1 profile image
gentle1 in reply to

I am neither brave or foolish, i made logical informed choices about my treatment of this cancer, i do not "worry" and never have done, to what point Gwyn? i may get the all clear and get knocked over by a bus!!! kind regards G1

in reply to gentle1

I couldn't agree more.

Best wishes love x G x

gentle1 profile image
gentle1 in reply to Lily-Anne

Aww thank you, most people seem to be upset with the post, my wish was to inspire, uplift, not conflict,

Lily-Anne profile image
Lily-Anne

We all make choices in life, I worry just as I am sure all of those who chose not to take the chemo route do, and those who do take the chemo route do. I am also just as entitled to voice my thoughts which are not intended as a slight towards anyone.

LA

in reply to Lily-Anne

I agree LA .....we are all free to make our own choices... but I wondered if you had gone ahead with chemo whether it would have helped you to worry less, but maybe not, because like you say people worry whether they have treatment or not, you are right it is just an individuals make up.

Of course you are entitled to your own thoughts and voice as we all are and I didn't think for one moment that you were slighting anyone.

it is just that I neither think it is brave or foolish to either take or refuse chemo as it a personal choice we all have to make for ourselves it wouldn't do for us all to be the same.

Best wishes love x G x

Cancer treatment is a huge industry in the modern world, and because of the strength of the drug companies and the huge amounts of money involved, an area that has evolved to be predominantely medical and surgical. The medical world is not (except in small pockets) well trained in the fields of diet, food production and looking at the whole person, including the massively influential area of mental health. As a therapist, I have worked with clients who have radically improved and cured conditions said to be intractible and chronic, and one whose cancer (terminal brain) disappeared. I make no claims except that it is common knowledge that we humans express our feelings and conflicts in physical symptoms, and often these improve or go when we concentrate on improving our whole health.

This is not to say that everyone who is ill can change that, or that the individual has caused their own illness, just that it is an area worth consideration, and one in which some of us can make a positive change.

It takes a strength of will and conviction to assess and decide to go against mainstream advice, not least of all because the pressure of the 'authoritarian norm' (our health system) is one we cannot often resist. The same applies to those who accept mainstream treatments against their own assessment. The other heroes are those who try all the treatments available in the hope that they will key into the disease somewhere and dispell it. Each to his/her own - but it is invaluable for all of us to recognise that there are other ways, because conventional health treatment does not take into account the reasons for, and the background to the hundreds of cancers that it treats in the same one-size-fits-all approach.

It really is about finding what fits you, even if that is not what the NHS prescribes.

Isadora.

vipervictoria profile image
vipervictoria in reply to

That's true. Western medicine as a whole is an enormous industry. So is alternative/complementary treatments, both in terms of supplements and practitioners. Western medicine is used throughout the world - Al Jazeera has a show about health care in Africa & Asia. Ayuvedra, Tibetan medicine, Chinese herbal medicine and acupuncture, etc., are developing internationally too. I went to a course on Tibetan medicine, which was fascinating - but the Tibetan doctor running the course said that, in his experience, western medicine was considerably better than any other medicine when used to treat acute illnesses, whereas medicine developed in other cultures was more about maintaining health.

That's why I chose western medicine to treat my cancer. There may well be different ways, but like others, I didn't want to take the risk. Although now I have acupuncture regularly, and various other complementary treatments. Vicky x

maz65 profile image
maz65

What drama on this issue. Each one has valid points. Its down to each individual what choices they make and when. There is no right or wrong way, just your way. Were all facing the same issue .

vipervictoria profile image
vipervictoria

Very true.

gentle1 profile image
gentle1

make an informed choice...thats all im saying, if you buy a tv youl compare products and buy the one that most suits your needs...thats all iv done...i do hope people research their needs, take responsibility for their health...find support and ease their journey through knowledge...knowledge dispels fear! empower yourselves, ..please!

INTERESTING DEBATE. Whilst there are for and against treatments, I think we all agree that having OC is not one of the easier cancers to have, there seems to be no miracles,for some of us. I think that when some of us had reached later stages we dont have time to look at alternatives. I for one was just grateful that I was being offered Chemo. I must admit I didnt think about alternatives, I just wanted to extend my life. I am still here but it doesnt stop me reading and looking at all kinds of treatments

As we have all agreed over time we are all individuals, and it seems that there are some many pathways that we all seem to tread

Take care everyone,

Regards Barbara.XXX.

All I will say on the matter is that a friend of a friend of ours at age 22 with cancer chose not to have chemo. She was dead within 6 months. I dont know if she attempted alternative therapies. Cancer is like a game of poker but i will put my money on chemo and any other proven therapies such as hormone, targeted. I also have great belief in the future of immunisation. Which reminds me i,ve got duck for dinner. Xx

gentle1 profile image
gentle1 in reply to

Im so sorry to hear that, so young, xx

Whippit profile image
Whippit in reply to

Bon appetit Paul and Sandra! xxx It's always good to balance the serious debates with a bit of fun. xxx love Annie

Thank you Millie,

Best wishes love x G x

Just thought I'd post this cancer research link about Burzynski.

cancerresearchuk.org/cancer...

scienceblog.cancerresearchu...

gentle1 profile image
gentle1 in reply to

may i suggest you watch the film..do your research..then comment, your missing the point here, your up against a multi billion dollar industry..it was his struggle and the lengths the FDA will go to to make money, and crush anyone that comes in their path, that was my point..

gentle1 profile image
gentle1 in reply to

Just thought i would post this cancer research link, about cancer research, enjoy x

SA100 profile image
SA100

Dear Gentle

All I want to say (without getting dragged into any debate) is that I am glad that you are still with us and that you took responsibility for your disease and faced it head on with the methods you believed would work best for you. In your first post you say that you addressed the "imbalance". You certainly seem to have done that!

All the best

SA100

gentle1 profile image
gentle1

Well, thats all it is rely, an imbalance, as with all physical manifestation of dis-ease, find the balance and your body will do whats its programed to do...heal itself....to find homeostasis, meo·sta·sis

noun \ˌhō-mē-ō-ˈstā-səs\

Definition of HOMEOSTASIS

: a relatively stable state of equilibrium or a tendency toward such a state between the different but interdependent elements or groups of elements of an organism, population, or group

— simple rely! x

vipervictoria profile image
vipervictoria in reply to gentle1

Some of us here know what homeostasis is. There's quite a few senior clinicians on this site, and others with degrees & higher degrees in science & the biological/medical sciences. It's a well known fact that 40% or so of primary diagnoses are wrong. As far as I can gather, beyond a few ultrasounds, you have been through no diagnostic processes, although there must have been a biopsy to make sure that whatever it was that was seen on U/S was actually cancer.

I remember reading a book called The Journey a few years ago, after I found out I had cancer. The writer implied she had conquered her own tumour by following a programme that sounds very similar to yours. But she admitted that her own tumour could have been e.g. a fibroid, or other benign mass. There are many parallels between what she said and what you are saying.

But there is also the fact that spontaneous remission can and does very rarely occur in people who have incurable cancer.

And there is growing awareness amongst clinicians who treat cancer that a patient's attitude can be a very significant factor in determining the outcome of treatment.

What disturbs me is that you will not accept other opinions - you simply come back with something that supports your case.

I hope you remain well. But, like Gwyn and several others, I challenge your conclusions. VV

I agree with your post Millie

Regards Barbara

Orsolini profile image
Orsolini

Hi Gentle - I loved reading your post. What a brave decision. I have just had a 2nd round of treatment but also looked 'outside the box' and thanks to advice in this forum changed my diet completely and take supplements, juicing etc and I've never felt better. I'd love to hear more about your herbs etc. But this post seems to have got 'difficult' so do send a personal message if not appropriate to write more here. I agree that it is down to each individual to make the decisions to suit them. Bravo to you, hope you remain in good health - Nicola

Absolutely agree

Gina555 profile image
Gina555

Hi Gentle,

I chose the conventional route because, as far as I knew/know, the greatest chance of a cure is complete removal of all visible tumours during surgery. Personally, I couldn’t wait to have the tumours removed before they had a chance to spread any further. Had I known of an alternative treatment, with a proven ability to shrink the tumours away without the need for surgery or toxic drugs, of course I would have gone for that. I believe that a healthy diet, lifestyle and mental attitude are absolutely vital in maintaining physical health but I already had a healthy lifestyle before I got OC, and tweaking that didn’t seem like enough once the OC had taken hold. In fact, they told me I would probably be dead within a year without conventional treatment.

I’m very curious about your experience, as I would love to believe that it is possible to cure OC with alternative therapies. My main question is, how do you know you really had OC and not something else? Could you elaborate on how your diagnosis was made? Did you have a biopsy? Did your Consultant tell you the stage/grade? Did the ultrasounds reveal any spread of the OC or was it just one large tumour?

leolady profile image
leolady

Hi Gentle.

You have been fortunate with the reduction of your disease and long may it continue. By the same token I know of 'troopers' on this sight who were given the same prognosis/or worse as yourself in 2007/8 and are still enjoying a quality of life and still going through the gamut of conventional therapies and Trials, myself being one of them. However, this will still be an option for you if needed.

Reading the above replies - maybe the common denominator of Ova Ca is 'intellect' perhaps the cure is to participate in less educative interests, not be opinionated, watch all the soaps and eat plenty of chips and chocolate. and Enjoy!

x Jen

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