Referrals

[nikki9]

I am considering getting a second opinion , although I feel my oncologist is very good I would like a second opinion to see if there is anything else out there. Can anyone recommend an oncologist in london area Many thanks xxx

[wendydee]

Hi Nikki

I just noticed that you live near me. I'm the regional ovarian cancer co-ordinatior for Ovacome, and live in Hawkwell. I don't know about how to go about getting a second opinion but if you give Ruth, the nurse at Ovacome, a ring on 0845 371 0554, she has lots of info and advice. If you want to chat, send me a PM and I will give you my mobile number. Let me know if there is anything I can do

Love Wendy xx

[nikki9]

Thank you Wendy I did meet you at southend copes but haven't been for ages nikkixx

[wendydee in reply to nikki9]

Ah! I thought it might be you but wasn't sure. Good to make contact again. Do give Ruth a ring, she will advise you, I am sure. I don't think there is anywhere locally though, maybe London... not sure anout where. Good luck.

Love Wendy xx

[zuzana]

Hi nikki, i went to Royal Marsden for second opinion back in September, they told me exactly same what my oncologist but i feel i need to go somewhere else as well so asked to be referred to Harley street. just waiting for a date. i been told there is not enough second opinions....xxx

[Niobe in reply to zuzana]

I wonder, zuzana, are there NHS doctors at Harley street you are talking about? Somehow I have connected this street with private naturopaths.

I can see your point though, if I get it right, that NHS provides only orthodox medical solutions and it would have been a good thing if we had in England more of integrated medicine practised so that a patient is not left totally bewildered as to what direction to follow and which strategy to adopt in the fight against this difficult disease.

I would like to try Iscador injections f.e. which are widely used in Germany and the USA and I have to find a private doctor to prescribe them. Why? I wonder. They might give me some remission equal to the time that a chemo treatment might give me but with much less damage.

Any how, we have to navigate ourselves among contradictory opinions as wisely as we can to achieve the best we can and one way is to inform each other.

Thank you all for your openess

Big hugs and all good wishes

Niobe

[zuzana in reply to Niobe]

Niobe, harley street is private clinic and not sure if NHS doctors are there. im having all my tretments done private.

never heared of iscador injections, will do some research.

all the best x

[Heffmeister]

I saw professor Gore at the Royal Marden for a second opinion in 2010. He agreed with my local oncologist that a drugs trial was best. The trial did not work for me. I see you have disease on your liver, this was seen on my liver and spleen during a debulking in 2011 and I was told it was inoperable then but I had surgery with a specialist team in Basingstoke to remove it and the rest of my extensive 3c disease in July this year. Are you responding to chemo?

[zuzana in reply to Heffmeister]

i been told i cant have second op, tumor on the liver is too close to my diaphram but managed to cut some out and also i have lots of small tumors in abdoman wall and its too small to be removed...thats why i feel i need to speak somebody else about my options. im just 32 years old,have 6 years old boy and will do anything to live looooong life

im also stage 3c and hampshire clinic in basingstoke and see NHS oncologist

[Heffmeister]

Zuzana, did you say you have been seen in Hampshire?

I just turned 35 and have a 7 and 5 year old. Basingstoke stripped disease off my diaphragms, liver and pancreas. They stripped disease completely out of my abdominal wall (perionteum) too and removed several sections of the large bowel and my spleen and gallbladder. They are amazing there and I was in theatre for 17 hours for them to get it all out. They don't usually operate for ovarian cancer but I have mucinous disease that does not respond to chemotherapy. The operation is called the sugarbaker technique, after the surgery they circulate heated chemotherapy in your abdomen, it's usually done for PMP which I'm not sure if I have or not as there is some arguement that it can't start in the ovaries only the appendix.

[zuzana in reply to Heffmeister]

that is amazing they managed to get all out for you. that what i would like to have done. apparently i wouldn't benefit from op much and still wouldn't be able to get all out for me...that's what i been told at Basingstoke and also at royal marsden.

im 32 years old with 6 year old so we are very same age. how u doing now? do u have any treatment at the moment?

take care x zuzi x

[jennybutler]

I am not doing any chemo. as it only prolongs life not a cure I did have debulking and 6 carboplatin got 12 months remission so now doing Dr.Joanna Budwig diet flaxseed oil and cottage cheese (quark) as mine to has come back.Sandy told us about it do look it up, also eating complete frozen lemon every day. see lemons cure cancer, I know the tumers in my stomache HAVE shrunk because I can feel them. thats after doing diet for 6 weeks very strictly and lemons for 3 weeks. seeing my onc. in January to see what he says he had never heard of these things which I found astonishing. I know others will say do chemo. but I am doing whats right for me you can do chemo. and these things but dont give up . there is a solution to it out there I have done a lot of research on alternative treatments and know of three people cured with hemp oil see run for the cure by Rick Simpson on u tube trying to get as made from cannibus plant. difficult as illegal to grow so may have to go to Amsterdam where they make it legally for your own use. do hope you do what ever is right for you warm hugs Jenny xxx

[Whippit in reply to jennybutler]

Dear Jenny

I was good to read you're discovering about alternatives to chemotherapy. I started the Budwig Protocol about 4 weeks ago but haven't been doing it as strictly as you. It seems a generally healthy way of eating and added to that the science of combining flax-oil with proteins from cottage cheese or Quark seem reasonable enough.

I was surprised neither my oncologist or nurse had heard of the Budwig Protocol. How on earth can they treat people if they have such a blinkered approach to medicine! It doesn't surprise me, however, and it's sad this leaves us wandering around trying to make sense of all the different advice.

I wonder if you could explain how the frozen lemons work and how you prepare them to eat. I'd be happy to incorporate that into my 5 - well more like 15 a day fruit and veg.

Isn't it OK now to grow and use cannabis for your own use. I thought it was illegal to deal drugs. I've heard it's good for MS but hadn't heard about it in treatment for cancer - though I'd imagine it's good for the spirits so long as you don't inhale it.

I notice you live near Bristol. Have you tried the Penny Bron Centre? I did think about it and would go if I knew someone had been and found it helpful. It's not so far for me as I'm in Cardiff.

Would love to hear more. xxxx love Annie

[jennybutler in reply to Whippit]

If you look on line lemons cure cancer it will tell you, but I freeze them and have one a day from frozen grated with yogart ( I grate using my Kenwood adaptor for grating) Do read run from the cure on line by Rick Simpson re hemp oil i actually know a guy cured himself with it his Mum was frantic when he refused chemo. and made hemp oil himself he had it in his lymth nodes with in 3 months he was clear saw 3 oncs. who were bumb founded. They dont bother to touch anything untested and the phamiceuticals cant patent cannibus so no money in it for them.Unbelievable I go to Penny Bronn once a week for food guide and heeling did feel heat while having it suprised me as a bit of a sceptic, But just going back to Hemp Oil my brother in law also knows two mates who did it and cured themselves go to UTUBE to find out more. Best Wishes and love Jenny xxx

[Whippit in reply to jennybutler]

Dear Jenny

Thanks for all the advice. I'll have a look online. Grated frozen lemon sounds rather nice with yoghurt so I'd be happy to add that to my diet.

I'll pluck up the courage to contact the Penny Bron and visit the centre. The healing sounds interesting. I'll take another look at their website.

I'lll also look up the video on UTube. It is frustrating that the BMA do not acknowledge any complimentary therapies at all. Same as all other areas of medicine - and yet there are so many good therapies out there used in different parts of the world.

Perhaps I'll see you at the Penny Bron one day!

love Annie

[jennybutler in reply to Whippit]

thanks for your message would love to meet up at penny bron i go on a thursday around lunch timesee what we can arrange

[jennybutler in reply to Whippit]

High just to let you know I have got Hemp Oil started 2 days ago,Brian in Amsterdam sent to me took 10 days from order too delivery.So I was not scammed, said better to use without chemo. so IF yours comes back try it then I will send you the link if you require it best wishes Jenny xxx

[jennybutler]

see my reply to heffmeister futher down re alternative cures.

[Whippit]

Dear Nikki

There are some really interesting comments on this blog. I've found a website that lists oncologists who are also specialists in complimentary therapies. This might be helpful for you:

canceractive.com/cancer-act...

I would certainly seek a second opinion and I agree with Niobe that it's a shame more attention isn't given by our medical practitioners to diet and complimentary therapies. Unfortunately these are not covered in standard medical training and it seems to me the NHS practitioners have become drug barons.

It would be interesting to hear people's experiences of going down the alternative or complimentary therapy route. xxx Annie

[jennybutler]

Have just had appointment with homeopathic doctor who has prescribed misletoe(ISCADOR) it can extend cancer sufferers lives by 15 months on average, I told her I have been doing the Budwig Diet and frozen lemons plus visulisation My cancer had come back in my stomach 10 weeks A go I could feel the tumors and told her i now cant feel them at all, she asked to feel my tummy and agreed there was nothing there nor was there any fluid build up that you get with ov. I was very confident i had taken the right decision in not having chemo. again and thanks to researching I found alternatives inc. hemp oil i started taking 6 days ago. see rick simpson on utube run for the cure. amazing man.I know one guy cured of cancer doing hemp oil and my brother inlaw knows another two guys that cured themselves with it not hearsay actual people we know. We know no other than chemo. but theres a lot out there to find out about my amazement is the onc.s no nothing about alt. therapy only chemo. when I challenged him he said unless tested and approved wont accept it.But the drug companies wont test cannibus (hemp oil) or lemons because they cant patent them to make money chemo. is worth billions of pounds to them.the info. i got cost nothing so no one trying to make a fortune from it just passing on so people know. I also eat organic and take iodin magnesium and termeric every day from health food shop. Love to you all do what is right for you this was right for me Jenny xxx