Hello everyone,
I am asking on behalf of so many of us, who are not quite sure our medical teams are offering us all the options that might be open to us.
In looking for a second opinion in London, we know about SB at the Royal Marsden and CF at Imperial,
But does anyone know anyone at Guys, for instance?
Or the UCL Cancer institute?
Or any other venerable Cancer Research centre?
Thanks in advance,
Laura
Hi Lindaura
I was given to understand (by Addenbrookes) that they, Marsden and the Christie are the ‘big three’ for OC. I certainly felt that Addenbrookes have a young and highly experienced research team if you are thinking of trials. Others will, I am sure, have other suggestions. People have specialisms don’t they... so CF is known for radical surgery but others might be expert in the use of parps or combined treatment? Good luck with your search xx
Hi Laura
I am at Guys under Dr Anna Montes, who heads up a large team, although they have cancer trials at Guys I think most of the patients needing access to treatment through OC trials are referred to SB at Royal Marsden, as was the case with my friend who I met at Guys when first diagnosed.
I had a second opinion from professor Gordon Jayson at the Christie in Manchester when I was unsure about stopping my maintenance Avastin, as I met him at an Ovacome members day and wouldn’t hesitate to seek his opinion again.
Best wishes Kim x
That’s really helpful.
I have a friend who really needs to seek a second opinion, so if this team is good for her, they can let her know if she should access a trial.
Thank you.
Hugs,
Laura
Hi Laura, I see professor Jason at the Christie hospital, he is such a kind man , very easy to talk to (not like some oncologists )
He is very positive. I feel that I am in the very best of hands .
Thanks, Sheila,
That’s very helpful.
Knowing a kind and thoughtful doctor is wonderful and passion information will help us all.
Hugs,
Laura
Couldn’t have put it better myself Sheila, the prof is a leader in his field and the Christie is a world renowned cancer hospital and research facility ❤️Xx Jane
Hi
I had a second opinion from Prof Jonathon Lederman at UCL.
He specialises in OC and his histopathologist Dr Aurora is also a Gynae specialist. She decided to run a few more tests on my slides and gave me specific answers to the question of origin of my mucinous ovarian cancer. He was very thorough, answered every single question in detail and plain English, was realistic and actually gave me a great sense of optimism.
A second opinion really helped me in my understanding. Nothing has changed in terms of treatment. But I feel a lot better psychologically having had it.
All the best
Fiona
Thank you so much.
Having realistic expectations can be helpful. And knowing that all options are being explored is reassuring.
Thanks for this,
Laura
I would also recommend Jonathan Lederman; I arranged to see him privately at the LOC (Leaders in Oncology Care) in Harley Street. He gave me options and hope.
That’s encouraging.
Thanks so much for the recommendation.
Hugs,
Laura
I saw Dr Rebecca K at the London Clinic - she is also available on the nhs but I paid to get a quick appointment. She was recommended by a lady on the Facebook group. It was a good decision and within in a week she sent me to the UCLH Clinical Research Facility where I have been on a trial for the last 22 months. This facility is excellent and is in Tottenham Court Road.
I'm under Prof Ledermann at UCLH and I can recommend him highly. He is a lead international researcher in ovarian cancer and has great communication skills, able to explain everything simply and clearly. I had a second opinion from him and then transferred to him. I trust his knowledge and experience. UCLH has led on a number of trials for ovarian cancer, including the one I'm about to start on, the PEACOCC trial.
Thanks so much, Grace,
This is adding up to a clear path for my friend,
Hugs,
Laura
P.S. Does sheet her GP to ask for the referral or should she get her Oncologist to do it? She is afraid of offending her...
I asked my GP for a referral and then emailed my oncologist and told him. However it is standard practice to get second opinions and oncologist shouldn’t be offended.
I asked my oncologist about the second opinion and they were more than happy to make the referral - they knew Prof Ledermann and his reputation. You can also go through your GP, but it will take longer, as all your scans, notes, test results, pathology, histology reports, etc, are held by your oncology department, and so they need to send them on to the second opinion person. As your friend's concerned about asking her oncologist she could have a chat about it with her CNS who could advocate on her behalf or advise on the best way to approach it. Wishing your friend all the best with this. And please remind her that everyone's entitled to a second opinion. All the best, Sundra
I am very interested in the peacocc trial- please let me know how it goes. However I don’t want to leave the trial that I am on but am keeping an eye on peacocc.
I went to see Rebecca Keisteleit at UCLH for a second opinion and she was brilliant. She did some genetic testing on me and answered a few questions my own Onc couldn’t as she has more experience of dealing with low grade. She also also said I may be eligible for trials there at uCLH in the future and said there are other treatments I can try in the future as well. I was given an open appointment to go back and see her again if I need to. I would highly recommend her, Kerry x
Thanks so much, Kerry.
We have had some excellent advice from this forum.
And you have added to it.
Hugs, Laura
Dear Lindaura,
The best thing to do in such frustrating situation is to take second and even third opinions.
you've got few recommendations and after private search by yourself, you will find
the experts you prefer.
one of the main important things to get, is someone that you trust and can lean safely on.
I wish you all the best.
Yudalef
What about north of the border, especially the highlands?? I feel very isolated and poorly served re trials and second opinions. I’ve been told since October 2018 that I’m terminal (6-9 months) with ir without treatment. Had just finished first line carboplatin 4 months b4 for stage 1 hgs Fallopian tube cancer, BRCA 1&2 neg. Full gynaecologist run surgery with excellent prospect of cure. Now on weekly pacletaxol and two weekly Avastin sin December 2018 so still here but every clinic I’m reminded its incurable and no trials available. Just had CT scan as ca125 on rise again (2 week wait for result after 4 week wait for urgent scan) Worried about result/recurrence/progression and future. Will it just be a shrug of shoulders and pathetic “sorry, it’s back, try calyx.” I’m trying not to go down rabbit hole of terror/despair but fear I’m just written off. Sorry for moan. Xx
Doodledays, my heart goes out to you. The inequality of access to trials etc is appalling for those living in Northern Ireland, Scotland and Wales. I'm very lucky to live fairly near the Christie but get quite angry when I hear of other folks experience. I do join in campaigns when I can but other pestering your MP and supporting the big OC charities to campaign on your behalf, I'm not sure how to break this anomaly.
I'm currently on a trial which is no longer working for me so I'm in the same position of coming to limits of what is in the tool box.
Big hugs. Xx
Even if you are told it’s incurable, it can be ‘manageable’, please don’t give up hope. You’ve got courage, I can tell. I have long trips to London from where I love, and it’s tough, but even on my bad days, I try to get there or my partner drives me. I think we have to make a choice how badly we want treatment and then be near that place or try and get there. I hope you find something closer to home and things get easier. Scotland is beautiful but please don’t feel isolated. We are all here for you xx
You have every right to moan, for I too have heard that Cancer care in Scotland leaves much to be desired.
But Carbo/Caelyx is the first choice for first recurrence.
So you are not far off the track.
After that, you might go into a long period of no disease.
And if you recur, well, you might think about relocating to be near a research hospital.
On the other hand, your present Oncologist does not seem to have a very good bedside manner.
Perhaps someone on here could suggest a better one.
Where exactly do you live in Scotland?
Best wishes,
Laura
Thank you for reply. I’m in Inverness and my Consultant is a nice man, I just feel a bit sorry for myself today. I feel written off but that’s maybe the reality, also it’s the hiatus between scan and result🥴. Due fir my weekly treatment this afternoon and I find it harder to drag myself there sometimes. Might feel differently in couple of weeks.🤞.
This cold weather, and I am sure it is colder in Inverness, makes it hard to leave the house.
When my journey started, they told me I was stage 4 and that I was pretty much doomed.
But then I was down graded to stage 3 and I felt more hopeful.
Nevertheless, BRCA1 positive and all, I am battling more than I planned.
There are still lots of tools in the drawer, so keep up the fight!
Meanwhile, I used to live in Fife, North Queensferry, across from Edinburgh.
At that time there was only one MRI machine in all of Scotland that we had to share it with Glasgow.
Anyway, I did love living there and dragged all my visiting relatives up to Inverness.
Fortunately, medically, I had been forced to move to Bath, as my care here has been excellent and we are just a 90 minute train ride from London.
So: Try to relax.
Most of us are in the same boat, either further along or just behind you.
It is so amazing to have this support site.
Which reminds me, the Ovacome support staff is excellent and really helpful for advice.
If you get down again, give them a call!
Hugs,
Laura
Thank you for time and reply. I was upgraded from stage 1 to stage 4 after first line chemo , which had been optional from oncologist whether I took it or not. I felt I couldn’t not take it but it was useless in the end and I wonder was it because it was only one agent, carboplatin that they used and not combo with pacletaxol . Anyway, I’ve had two years of chemo, this last year weekly with bio targeted drug too and with it exhaustion and side effects from top to tips if digits and everywhere in between but still here. Will be so down if CT scan poor but still two & half weeks to wait. So, until it’s out there I’m carrying as my body lets me and having great days where/when I can. I’m still Mum, Granny, Friend, Neighbour and ME. Love to all our Teal Friends. Xx
I would go with CF at Imperial every time. I don’t know the others, but Imperial is amazing. I would not be here if it wasn’t for them. They are just about to launch the episode of HOSPITAL that was out 2 years ago, on Britbox. I was in the episode and it highlights CF and her team at Imperial.
But there seem to be great recommendations above too x
Dear Nicky,
Thank you for that glowing recommendation. I had wanted to see CF, as I had read so many good things about her, but was talked out of it by my Onc.
At least I love my research nurses at the Royal Marsden and feel well looked after by them.
But CF remains an alternative for whatever my future holds.
Hugs,
Laura
NICE review olaparib and bevacizumab - your comments needed
World Ovarian Cancer Day: May 8th 2013
