Likely ovarian. Terrified. Anyone available for a hand hold?

[Ohjoyohbliss]

Blood test yesterday: Serum CA 125 level over 35 indicates possible cancer. Mine is 213. Shit.

DH knows and one friend but I don't want to worry anyone else until I know how bad it is; hence I've name changed for this post. I'd love to know how anyone else has coped / is coping.

CT scan Saturday and USS on Monday. GP has made 2ww gynae referral today.

So does anyone know how I would go about finding out about a private company / hospital which could do an endoscopic ultrasound with lymph node biopsy?

Have you tried the usual suspects, Spire or Nuffield?

Sorry if you've already said, but what is your closest city? Maybe some of us can look into private options near you?

Hi @Ohjoyohblisswhen I was looking for a private consultant then I went on the Bupa website and searched for the procedure I wanted and it brought up a list of specific and specialist consultants and the hospitals they were based at. Thinking of you and hoping you can get what you need as soon as possible.

I've just been looking through Bupa specialists that list endoscopy as a specialism. This one is based in Leeds:

https://www.finder.bupa.co.uk/Consultant/view/eDRkQXYwZ1dBUGFJZHZucnRtblE3Zz09/?ql=&qla=&qlo=&fhospitalNetworkId=

But many others listed, some of whom mention endoscopic ultrasound in particular. Depends how far you can travel? This should be the list of specialists offering endoscopy:

https://www.finder.bupa.co.uk/Consultant/search?allspecs=-1&ffeeAssured=1&fgender%5B%5D=&fhospitalNetworkId=&fpathway=&fspokenLanguageId=&giottoFormFlag_consultant=1&hospitalSwiftId=&order=rel&order+=rel&qk=Endoscopy&ql=&qla=&qlo=&qn=&rpp=40#start www.finder.bupa.co.uk/Consultant/search/?order+=rel&ffeeAssured=1&allspecs=-1&fgender%5B%5D=&fspokenLanguageId=&fhospitalNetworkId=&qk=Endoscopy&ql=&qlo=&qla=&qn=&order=rel&rpp=40&hospitalSwiftId=&fpathway=&giottoFormFlag_consultant=1#start]]]]

Many of them are in London, it seems.

One in York:

https://www.finder.bupa.co.uk/Consultant/view/Y2l5OWJQR2RaVGVVVlQwQmZwaC90QT09/?ql=&qla=&qlo=&fhospitalNetworkId=]]

This one in Leicester is the Lead in endoscopic ultrasound:

https://www.finder.bupa.co.uk/Consultant/view/Vlc2MWJ2OUxvMDJvZ01iM0tnQXNXZz09/?ql=&qla=&qlo=&fhospitalNetworkId=]]

Endoscopic ultrasound in Leeds:

https://www.finder.bupa.co.uk/Consultant/view/QXN4Q2M2U2NaY3VrUXZmWVVyeHR2UT09/?ql=LEEDS&qla=53.800000&qlo=-1.583333&fhospitalNetworkId=]]

Endoscopic ultrasound in Bolton:

https://www.finder.bupa.co.uk/Consultant/view/VFQrZzZMSjF0blZzNGlDek1hV3NzQT09/?ql=LEEDS&qla=53.800000&qlo=-1.583333&fhospitalNetworkId=

And here is the main list of consultants offering endoscopic US, in order of distance from Leeds. I hope this is helpful for you.

Info on endoscopic ultrasound at Nuffield hospital in York:

https://www.nuffieldhealth.com/hospitals/york/tests-scans/endoscopic-ultrasound

Another EU consultant in Leeds:

https://www.spirehealthcare.com/consultant-profiles/dr-matthew-huggett-c6074246/

You’ve had a biopsy today. That is progress. It may give some useful info and move you along the diagnostic path. In the meantime 2 consultants are involved in your case: haematology and gynaecology. I would not add a private 3rd random consultant into the mix at this point. Responsibilities will blur and you may find it actually slows things down. So whilst it seems agony waiting I would advise that you stay there.

While you are in a hospital bed you will have very high priority for any intervention. Definitely a priority over outpatients due to the acute bed cost. So my advice is to stay put. Your haematology consultant may be making other enquiries for a biopsy on your behalf.

Could you arrange a telephone call with your GP if you want to talk the options through?

Honestly I wouldn’t come out of NHS & go into the private sector as that really slowed things down for my dad. Maybe different hospitals and consultants but I’d never do it again.

Leeds

@Jaffaisitacakeorbiscuit
While you are in a hospital bed you will have very high priority for any intervention. Definitely a priority over outpatients due to the acute bed cost. So my advice is to stay put.

My consultant wants me to stay in, for this reason. Even though nothing might happen until next week. And in the meantime they are doing regular obs, taking daily bloods so will notice if my condition deteriorates.

Chain yourself to that bed - that it your biggest trump card in this situation.

I was on a long waiting list for an angiogram, but then presented in A&E with bad chest pain. They admitted me and I was fast tracked for the angiogram, where a the main coronary artery was founded to be blocked to 94% at one point. They inserted a stent. If I had waited on the outpatient list things would have got far more serious.

Hang on to that bed - don't let them send you anywhere - it is your passport to all the investigations you need. Once you are back at home you could drop off the radar - you are under their nose - you need to stay right there. You do not want to be at home trying to chase all this up - I know being in hospital is not ideal and pretty boring, but it is the right place at the moment.

My thoughts are with you - hang on in there ......

I’ve been following since the start but haven’t commented until now. I just wanted to say I commend your valour and determination to get yourself right and challenge the professionals where needed. You knew something wasn’t right with your body and kept fighting for answers. I really hope you can have treatment quickly and some sort of resolution to what you’re going through. Please look after yourself.

How are you coping @Ohjoyohbliss ? Managing to sleep okay? Have they got your pain under control?

I have no phone signal in my room and the WiFi has been down since yesterday morning. Seems to be working intermittently now. I feel very isolated with no contact with the outside world.

Nothing has changed except my pain has got a bit worse, so the doc has prescribed me morphine injections "which you can have whenever you want." Hah! No chance! I requested it at 4.15 this afternoon and didn't get it until 6.05.

The plan is still to have the endoscopic biopsy next week, hopefully Tuesday, then they might start me on steroids while waiting for the biopsy results, then hopefully chemo. If the armpit biopsy gives a definitive diagnosis before then, (unlikely, ) chemo could start sooner.

Bless you , we are all thinking of you and hope this weekend flies by so you can get answers and treatment started.
Sending love

Sending lots of love - the lack of internet must make everything seem even worse - it’s awful being isolated in any situation, let alone yours. Thinking of you ❤️

Oh and now I've been told they are moving me from a single room to a 4-bedded bay. Oh joy, oh bliss.

Oh no 😢 I hope it’s not too bad or noisy 😩 Maybe the phone signal will be better 🤞🤞