Experiences of Clatterbridge cancer center, Wirral

[Donnie21]

Hi all,

Mum was diagnosed with stage 3c high grade serous ovarian cancer at the beginning of the year. She has responded well to first line treatment and surgery through the Marsden in Chelsea and is now on maintenance Niraparib.

We are now facing a house move up to the Northwest and are looking at transferring care most likely to Clatterbridge on the Wirral.

I am writing today to ask whether anyone has any experience of Clatterbridge? Having been fortunate to have had excellent care available to us locally through the Marsden it is daunting to be moving away from them. I am particularly interested in the facilities and concomitant support available at Clatterbridge from the perspective of whether they have an acute medical unit to help deal with any issues that come up, chemotherapy and how surgical referrals are dealt with.

We will be very local to Clatterbridge so from a convenience perspective it makes sense and Mums consultant seems to have confidence in them but Christie’s in Manchester may also be a viable option.

I have visited the Clatterbridge website and hope to go and visit shortly but would welcome anyones thoughts and experiences either publically or via PM.

with thanks and best wishes,

Donnie

[Janini]

Good Morning Donnie, I can understand your concerns, especially if you’re happy with your current team. I hope I can help you I’m with your information gathering.

I have been a patient of Clatterbridge Cancer Centre since 2016 when I was diagnosed with stage 3b HGS ovarian cancer. I have had many recurrences and have so far had 5 lines of chemo plus 2 and a half years of the maintenance drug Olaparib.

Everyday I feel lucky to have Clatterbridge as my local cancer centre.

My situation has been complicated in that last year I discovered I had a second primary cancer, Non Hodgkins Lymphoma (completely unrelated) . This was also treated at Clatterbridge by their haemo team (rCHOP chemo plus radiotherapy) who were superb and communicated with my gynae team throughout. I am now reviewed by them 6 monthly.

More recently I mentioned to my gynae onc that I’d felt a bit dizzy and had lost my balance a couple of times. She felt that despite it being rare for OC to spread to the brain I should have an MRI. It turned out that I had an OC lesion in my brain. I was very quickly referred to the Clatterbridge neuro team who arranged for me to have stereotactic radio surgery. It was less than 6 weeks from my mentioning my dizziness to treatment being completed.

Sorry, this is such a long message, but I’ve had a long and complicated but very positive relationship with Clatterbridge.

One last thing. The night after my stereotactic radiosurgery, I was struggling with extreme hip pain (non-cancer related) and constipation so was not absorbing the pain meds. I rang the Clatterbridge hotline for some advice they arranged for me to see the palliative team at Clatterbridge that morning. I was admitted to a ward despite my pain being non cancer related as they felt with my complicated history I would be better served there rather than at my local general hospital.

I’m now back home, pain under control and being looked after by the community district nurses and the community palliative team. But…… I also have direct lines to the teams at Clatterbridge with strict instructions to call if I have any worries at all.

Reading this back, I sound like a physical wreck. It couldn’t be further from the truth. Despite having had treatment on and off for 6 plus years, I am fit and able to do most of the things I could pre cancer. I put this down to having access to teams of people who not only know their stuff, but also share information and work closely together to find the right way forward for the individual patient.

I ❤️ Our amazing NHS!

Hope this helps. If I can help in any other way feel free to DM me.

Good luck to you and your mum.

Jan x

[Donnie21 in reply to Janini]

Hi Jan,

Thanks so much for your reply. I appreciate your willingness and taking the time to explain your situation and experiences with Clatterbridge. It sounds like you have been through a lot . Its great to hear that you have had such good support from the center and that despite everything you are fit and able to do most things.

From your experience it sounds like there is good joined up care at Clatterbridge and in the wider community which is reassuring and that they have good facilities. I’m pleased to hear they have a hotline to help triage problems as they come up. Do you know whether there is a day medical assessment unit at Clatterbridge or if issues arise are you directed to local a and e which I am assuming is Arrowe Park or the Countess?

Thanks for all your thoughts and with best wishes xx

[Janini in reply to Donnie21]

Hi Donnie, there’s Clinical Decisions Unit at Clatterbridge which is the equivalent of a day assessment unit. Referral is via the 24 hr hotline. It’s how I was admitted a few weeks ago.

Best wishes, Jan xx

[Donnie21 in reply to Janini]

thanks Jan, good to know 😀

[Katmal-UK]

Hi. Following my diagnosis/surgery back in 2007 for Stage 3b OC I was referred to Clatterbridge for chemotherapy. The staff are amazing. And I don’t just mean the Drs and nurses,. ALL the staff are so dedicated and caring. I have nothing but praise for Clatterbridge. I had standard chemo as well as trialling Avastin. I reoccurred after about 4.5 years then again had chemo although I did have a bad reaction (stage 3 anaphylactic shock) which was dealt with so well by the staff. I then trialled Cedranib . After about a year I had another recurrence.Again I went through chemo and was offered another trial but unfortunate the timing of me finishing chemo and the start of the new trial wasn’t right so my Consultant looked to the Christie’s for a trial and to date I am still there (8 years 10 months). I honestly don’t think I still be here (just going into my 16th year (9 years 2 month NED this time) if it weren’t for the care I’d received at Clatterbridge. I may now be at The Christie but still get the odd best wishes message from my Consultant at Clatterbridge. Feel free to message me if you have any questions. Kathy xx

[Donnie21 in reply to Katmal-UK]

Hi Kathy,

Thanks for your reply and thoughts contained therein. Great to hear that you have had a good experience at Clatterbridge and hold the staff in such high regard. It sounds like you got good treatment through them and then when your consultant became aware of other potentially more suitable options for you they weren’t afraid of referring you on which implies a good deal of joined up thinking and working. I’d be curious to know who you were under at Clatterbridge if you felt able to share understanding if you would rather not.

Very pleased to hear that you have had such a good result and wishing you all the best for the future xx