Referral from Wales to England - any experience?

[Jpembs]

Hi. I'm HGSOC stage IVb diagnosed in Feb. Just had CT scan following 3rd cycle of carboplatin/paclitaxol and 2nd of Avastin. CA125 has reduced from 374 pre-chemo to 26 post 2nd cycle which I'm hoping is a positive sign! I have spread to my liver and spleen and have been told surgery will only be an option if it the liver completely clears with chemo. If not at this scan I have 3 further cycles to try with a further scan at the end.

Probably jumping the gun but I wondered if there were any Welsh residents who had managed to get a referral for a 2nd opinion to an English hospital. Just wanted to get prepared in case I feel this becomes necessary as there are limited options in Wales.

Also, anyone able to give feedback on surgery at Swansea?

TIA

Julie

[Caleda4]

Hi, I used to live in West Wales, & for chemo went to Glangwili hospital Carmarthen. When I was first diagnosed nearly nine years ago, I was offered surgery there, but They could not do the op. by keyhole. However the gynaecologist said she knew a man who could at Cardiff University hospital. I have HGSO cancer to. Following the op a few weeks later I was sent to Velindre Cancer hospital, Cardiff, for brachytherapy. I wonder if you could see someone there. You could always ask your Oncologist if you could seek a second opinion at the Royal Marsden in London. Worth a try if you don't mind the travelling. I now live near Worcester.

I hope this helps. Good luck.

[Jpembs in reply to Caleda4]

Thanks Caleda4. Also in West Wales and chemo is at Haverfordwest. Velindre is an option but I'm thinking if I need a surgeon prepared to be more radical I'm not sure if there's anyone in Wales but I understand it's not straightforward to cross the border.

[Caleda4 in reply to Jpembs]

Prof. Fotopoulo at Royal Marsden, who I was thinking of.I realise they do have different ways of dealing with things in Wales,although I will say my treatment was excellent. Although I had some chemo at Glangwili, I was under Dr. Banner at Singleton,Swansea. I wish you luck.x

[Caleda4]

I forgot to add that Robert Howell,did my op. in Cardiff, brilliant surgeon.x

[COHEN123]

Hi J,

I am also Stage 4b , live in Hendy near Swansea. I was diagnosed in Feb 2022. I had chemo first at Singleton with Dr Rachel Jones who I ahve found to be brilliant. She worked in Velindre and told me that the specialists across Wales have a monthly meeting to share issues etc so they all communicate and share with each other. . Folloing chemo I had surgery and Professor Kerryn Lutchman Singh in Morriston was the surgeon . He and his team did a great job I think and I had a good experience for major debulking surgery.

I haven't needed to go for a second opinion so far. I have had a recurrence and am on second round of chemo at the moment ( 2 more to go).

Hope that is of help. Get in touch any time .

Sue

[Jpembs in reply to COHEN123]

Hi Sue

Thanks for your message. I too am with Dr Jones and if surgery goes ahead it would be Prof Lutchman Singh so good to hear you had a good experience with both. As I said I'm probably jumping the gun but because I have mets to the liver I've been told surgery will not happen unless it's cleared completely by chemo first so am looking at options across the border where it seems possible surgery would go ahead in this situation. However it doesn't seem straightforward to get a referral. Hope your current chemo is going well and likewise message me any time

Take care

Julie

[COHEN123 in reply to Jpembs]

Aah the small world of Wales and ovarian cancer - so many coincidences. Our paths may be different but lets keep strong and keep on going to the end of the rainbow.

Take care, Sue

[Newbery3]

Hi Julie 👋, firstly your ca 125 sounds very positive! My ca was 2298 at the start and by the 4th chemo mix without avastin though was down to 14 so you are smashing it. I am stage 4 also and asked to be transferred from wales(singleton) to London and was told that it was very difficult to sort out as all my records would need to sent and that could cause a delay in debulking operation and that they hadnt done it before and wouldnt guaranteethat id be allowed, I got a private 2nd opinion anyway with Prof Christina Fotopoulou and it was worth every single penny!!! She looked over my scan again that singleton had and they had told me that I wasn't ready for my debulking and they thought I should have 6 chemo 1st then look again. Christina told me that I was more than ready for my operation and read my scan completely differently, I ended up paying private and going to London for the operation and it's lucky I did as the outcome if I'd waited would have been much different as the disease had spread to my lymph behind my bowel and Christina Saif no other surgeon would have been able to remove them and would have closed me. Anyway I'm here I'm Ned and on avastin and olaparib now 😊 just had another scan and still all good 👍. I suggest paying for 2nd opinion and maybe the liver isn't as big a problem for a different surgeon. Once I made the decision I was up in London 8 days later and all NHS notes had been forwarded. 😊 then back to Wales for last 2 chemo's. X pob lwc X

[Jpembs in reply to Newbery3]

Hi. That's really interesting. Also down to 14 after 3 cycles now and had CT scan results last week. They showed 'good partial response', a marked reduction in all tumours, including liver, with primary tumor down to 2.5cm. Similarly to you MDT advised further 3 cycles and look again so think I will contact Christina for private 2nd opinion as they're adamant the won't do debulking if there's anything left on the liver. Not sure if a private op is affordable (would you be happy to give the approx cost?) but if nothing else I'll have more info. Diolch x

[Newbery3]

Yes, I was advised to have all 6 treatments 1st also but when we asked outright which would be best sandwich treatment or all 6 then op? Dr Jones said sandwich treatment is best as we need a mop up treatment after operation but I couldn't have more than the 6, and that's why we decided to go ahead private. The initial consultation was £450. Then I borrowed money off family for the operation, it came to just under £26k but I was told between 25+30k that was last September. Its not cheap but I'm glad now that I done it but my outcome would have been very different. Can I just say that I've heard that Dr lutchman is also a very talented surgeon and very nice man too. Whatever you decide will be right for you and I'm here if you want any further advice x ps. I still email Prof Christina with any concerns and she answers straight away no charge! She's an absolute Angel 😇 x

[Jpembs in reply to Newbery3]

That's a worry about the chemo I was under the impression I would get further chemo post surgery. Will definitely be checking this. Thanks for the info on the op x

[Newbery3 in reply to Jpembs]

Yes ask, you maybe different 😘 x