I have been diagnosed with a 6cm tumour, cervical cancer. GP app 3rd may, specialist app 14th may, where I was informed the biopsy would 99% confirm cancerous cells. Confirmed 20th may, after a huge battle CT and MRI 22nd may, scans seen by surgeon 23rd may. With lots of pushing things moved quite quickly until this point. I need a radical hysterectomy, along with lymph node removal, the hospital will not commit to a date, they say im an urgent case, however they are estimating mid july.
from specialist diagnosis (14th may) to operation mid July this will be 9 weeks minimum wait!
is this acceptable? I have tried reading duty of care on NHS website, it's not not in plain English! My pain is horrific, it feels like I am in labour continuously and I feel no one, Except my gp really cares. Any advice on how to push the operation forward will be gratefully received.
Hi, I'm sorry to hear about what you are going through. Unfortunately I can't answer your question but there are so many amazing women on here who can help. My question was, these labour pains you are having. .did the doctor explain why you were having them? Also what were your initial symptom? Hope you get an answer soon.
Best wishes xxxxx
Hi Carol,
Welcome to the forum, I’m sorry you’ve had to find us due to a CC diagnosis, I hope you’re doing as well as you can?
The national guidelines for urgent referral from the GP to a specialist say 2 weeks and then there is a guideline/protocol for treatment starting within a number of days after diagnosis. I’m pretty sure this is 49 days but can’t find a link to back that up right now. I’ll keep digging until I find it!
Have you been given a specialist nurse or Macmillan nurse to deal with? They can be pretty good at finding things out for you too.
I really hope they get a date fixed in for you soon xx
Hi, just wanted to say that jojo is right guidelines are for any treatment to start within 49 days from diagnosis, I guess this has happened as you have had tests. In my case I had cold knife cone biopsy to confirm the punch biopsies and I had to wait 6 weeks between the surgery for my the radical hysterectomy. My consultant said the body needed at least 4 weeks between procedures.
I just wandered if this was the case.
I do think you need to see you gp or specialist nurse if you are in such pain it seems like labour, perhaps they can prescribe some painkillers or relaxation therapy as I get anxious which heightens my pain threshold.
Hope things improve
Hi,
Current guidelines are that treatment should be started no more than 49 days after the date of diagnosis and no more than 31 days from the meeting at which your treatment was decided. When was it agreed that you need a radical hysterectomy? You should have had your operation no more than 31 days after the date. Anyone telling you that you have to wait longer than this needs to be reminded that this is National Protocol, rather than just an ideal. If you're having trouble getting your clinical team to adhere to these guidelines, get in touch with your patients liason service attached to your hospital (sometimes called PALS) and/or your local Macmillan Centre (often located in the Oncology dept. of your hospital), and they will advocate for you.
Let us know how you get on.
And because I know some people will be interested, here are the links to those guidelines, as well as the 31 day provision stated on the NHS website.
https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/135518/dh_123395.pdf.pdf
http://www.nhs.uk/conditions/Cancer/Pages/Introduction.aspx
Annabel. x
Hi annabel, Thank you for taking the time to look up the 49/31 day wait for treatment info. This has not been adhered to in my case. I have now been given a provisional operation date for 12th July, which is 53 days after the biopsy results confirmed cancer, 50 days after I was told my MRI and ct confirmed cancer is confined to cervix and listed for surgery, and 38 days after my consultant meeting where he told me exactly what they were going to do but informed me they didn't yet have a date. Everyone including my GP, who is amazing is telling me my wait is too long, NHS has a duty of care etc etc but the people at the top have full operation lists and don't seem to be able to do anything about it. When you look to complain via government websites, local MP etc you seem to read you will get an acknowledgement email within two weeks! I feel by the time you complain the operation date will be here, so no point in complaining! Just hope my cancer hasn't spread by the time I make it into the theatre! People on here are right, the wait is agonising, both mentally and physically. The specialist nurses at the hospital are amazing, always there to listen, a good point of contact for anyone needing support :)
Hi,
I just want to reassure you that this isn't going to impact on your clinical outcome - cervical cancer is a very slow growing cancer, so having your operation a week after the last date they should be doing it is not going to change your clinical outcome. However, even though this is the case, they should still be doing it within the prescribed times. I still think it's worth complaining even if it is unlikely to have the effect of bringing your surgery date forward, because it's unlikely that you are the only person in this hospital for whom they are not meeting the guideline times, so the more that people complain about it, the more they will be forced to address it. So, whilst as awful as it is that complaining might not help you personally, it's possible that it will help women in your position in the future. Only do it if you've got the energy though - you need to focus on yourself at the moment!
Have you thought about contacting the patient liason organisation at the hospital (they are often called PALS) - they might be able to liase successfully between you and the management (you're right - unfortunately clinical staff have no influence over theatre dates etc.. it's an admin and management job - my consultant and my surgeon both had major strops in the corridor when I got kicked off the theatre list on 18th Oct and I could hear my consultant shouting from where I was on the ward, but I still didn't have my op that day).
The other thing I would say is that it's worth making sure that you're first or second on the theatre list for the day of your operation. Given that they are going over the protocol time as it is, they need to reassure you that there will be no further delays. One way they can do this is to make sure that you are first on the list for that day, to ensure that any emergency admissions etc... won't compromise your position.
I hope this helps.
Much love, Annabel. x
Hi Carol - just wanted to reinforce everyone else's comments. The fact you are in pain makes it even worse that the protocols have been exceeded. You poor thing.
I did tell my team that due to my circumstances at home I was flexible on dates and would be able to take a slot at short notice if they should have a cancellation. It does happen. I ended up having my first surgery a few days earlier than planned because they swapped me with another patient who they knew would definitely need an ICU place after surgery and there wan't one available to be reserved on her date.
Worth a try, if you can be flexible.
x
Yup I said I was available for cancellations and had my lletz under GA the very next day! It was half term and there was a cancellation. The nurses all commented how quiet it was that week, so with school holidays come up you may find a few cancellations popping up.
Best of luck with it all xx
