Directions please...

[Coolroses]

Does anyone know where, on earth, they are leading the way in oc treatment? Even in the UK there must be more specialising hospitals/consultants than others. I hear of people going out of the UK to clinics elsewhere but why? What is happening elsewhere that could help me more than the same old options I’m being offered by my hospital? I want to know we’re do I need to go to get better?

[Katmal-UK]

Hi

Where have you tried? Have you asked for a second opinion? I am currently under the Christies in Manchester which is a centre of excellence , though previously I was under Clatterbridge and transferred to Christies take part in a trial . Might be worth you googling Cancer Centres? Good luck xx

[Coolroses in reply to Katmal-UK]

I am only now really questioning if I’m getting the best care where I am. Changes of consultants twice and issues with my care. I will google. Thank you and I hope you are getting on well x

[Cropcrop]

I was at the Christie for my treatment and still go for my regular check ups there, I can’t fault it in any way and have total faith in them. I have no experience of other specialist cancer centres but I hope you are able to find a centre for treatment that you have more confidence in, that’s a big part of the process in my opinion. You can ask for a second opinion if you feel unsure of your current treatment regimen. Good luck ❤️Xx Jane

[Lily-Anne]

The Royal Marsden, Chrisities and Addenbrookes are considered to lead the way with gynaecological cancers. These are all hospitals with research departments for trials and work closely with the drug companies. A teaching hospital has better finding than the other hospitals, and can apply for grants and special funding for individuals associated with or finishing a trial.

It's unfortunate that we are sometimes frustrated by our treatment, particularly if the care has been below standard. Unfortunately, from my experience and all the data I have read, particularly the most recent which looks at ten year survival rates instead of five. It's a difficult disease to control, some cell types are easier to manage than others, and it presents differently in everyone.

Cancer survival rates are better in the majority of other countries, as a whole, but ovarian cancer survival rates are not dissimilar to elsewhere, showing how much of a challenge the scientists have.

LA xx

[Coolroses in reply to Lily-Anne]

Thanks so much. I think I’ve been burying my head in the sand a bit. Believing all will be well if I just meditate hard enough lol. Apparently my body didn’t get that memo and is doing its own thing regardless. You are kind to respond - thank you 🙏

[Neona]

I travel to the UCLH Research Facility to take part in my clinical trial. The trial is also run at the Royal Marsden. I was referred to the Research Facility after paying for a consultation at the London Clinic.

[Coolroses in reply to Neona]

Neona, I wonder if you think it beneficial to have a consultation at the London clinic? Would you recommend? What is different about them as opposed to getting a direct referral to the Marsden for example? Sorry for the questions, just trying to work through it all. Thank you x

[Neona in reply to Coolroses]

I went to see a Dr who was recommended by a lady on the facebook group Ovarian Cancer UK. When I looked up this Dr I found that she had a private practice at the London Clinic. As my cancer had come back really quickly I was anxious to get a quick appointment. The advantage of a private consultation is that you get a full hour and all your questions answered. This Dr runs phase one trials and I was interested in this because you are guaranteed to get the new drug that is being tested. The same trials are likely to be offered at the major cancer centres like Christie's and the Royal Marsden. I live in Cornwall and there is no chance of getting a phase one trial here. It seems that few oncologists tell you about the many options that are out there and you have to research it yourself and take action. I looked up this Dr and asked my GP for a referral. I could have done this on the NHS but it would have been a long wait. The consultation cost £350.00 but was worth every penny.

[Coolroses in reply to Neona]

That makes perfect sense. Would you be happy to recommend her and name this Dr? It’s a minefield. I get annoyed at myself sometimes for being too amenable and not pushing myself enough. You’ve been really helpful - thanks again x

[Neona in reply to Coolroses]

Will send you a message as not allowed to name health professionals on here.

[thomas62 in reply to Neona]

Hi Neona,

Could you also private message me as well as Coolroses as I am interested in a private appointment with the London Clinic.

Thank you. Best wishes. xx

[AndreeP]

I am lucky to be with Princess Margaret in Toronto, Canada, they are listed in the top 5 cancer hospitals worldwide. I also know someone here who went to Alabama because it is top in her type of ovarian cancer - that was when I realized there were many types of OC! How naive I was!

[Coolroses in reply to AndreeP]

How naive we all are! I’m a counsellor not a medic so it’s all baffling to me. Scary and baffling. Thanks x