Hi ladies,
Unfortunately I often read and run and don't often leave advice or comments on this forum which I'm sorry for, however this is too close to me to not.
Firstly anyone diagnosed with cervical cancer has an audit ran on the last 10years of their smear history, however at time of diagnosis you are normally asked if you want to know the results of the audit or not, regardless of your answer the audit is still ran, now at anytime you can request if you haven't already the results of the audit, for me I wanted the results straight away, for those probably more in advanced stages of CC , I can understand why you may not want to know the audit, you've been diagnosed and it's advance, what difference will it make knowing the reason behind it?
For me I had to know, I was only ion the early stages but knew as cliche as it sounds I knew there was a reason behind why I had got CC. So I had had 3 previous smears before my official diagnosis first one normal, second one normal, third one high grade severe dyskarosis, now ok I'm never on time for most things and put of having my smears on time because they were painful, and I would bleed. My first smear although painful and I bleed was just done on a whim when I had been sent my letter, and resulted as normal, my second was also done on a whim but about 6months after I was due and because I kept getting post coitol bleeding, from here the GP had said she would do the smear which she noted I bleed heavily at whilst performing smear and send me to gynae depending on the results to be be investigated for the bleeding, the smear came back as normal so she sent me to gynae as the report had said, if still getting post coitol bleeding a referral to gynae should be warranted as smear normal, off I went to gynae who literally looked for two seconds with just a normal speculum no colposcopy and said I had erosion of the cervix and it was down to the pill and there was nothing to worry about, if I kept getting the bleeding and it was becoming a nuisance I could haves one laser treatment or change my pill which might help, I opted to do nothing as I had been re-assured it was all normal and nothing to worry about, the post coitol bleeding persisted but I just knew that it was "normal" so my next smear in was nearly 6 months late for again, just decided one day that I would have it done, I had it done and again still bled after it, thought nothing more of it until I got called in to see the nurse who told me I had been referred from the lab straight to colposcopy urgently as I had high grade severe dyskarosis, I guess in my heart I knew at that point it wasn't going to go simply.
So I went to colposcopy had a biopsy and LLETZ treatment and the consultant told me " it was more than likely just CIN 111 and that the treatment would contain it and eradicate it, I'd be surprised it if came back as cancer"
Low and behold 1 week and 6 day us later I get a call from the Macmillan nurse asking to go and see the consultant the following morning and to bring someone with me, I knew it wasn't good news and sure enough I get told it was stage 1b , I was told I'd more than likelyv have a trachelectomy as my biopsy results didn't have clear margins, and LLETZ would not be advisable, I was also told that because I had not yet started a family that they would give me the trachelectomy but even if I had one child they would have opted for a hysterectomy! I was 27 at this point then they told me I would have an audit ran on my results and did I want to know the results? Erm hell yes! I was told it was a lengthy and long process but I would have the results as soon as possible.
Every appointment I had I asked when I would get the results, every time I rang and spoke to my CNS I was told it was in the process I even emailed both my CNS and consultant on several occasions, and I was ways told it's been sorted. Eventually 18 months later I had kind of given up, then a letter popped through the doors saying they had my results and wanted to see me to discuss them, so I had an appointment and that's when they told me that my second smear when rechecked had actually shown moderate dyskarosis!
The appointment was filled with rage, anger questions they tried not answer and emotions I never knew I had, the meeting involved a consultant I had never met, the head of pathology and one of my CNS, I asked the question that if my second smear had been reported properly then would I have had treatment that would have either caught the cancer even earlier or prevented the cancer altogether? I was fobbed off with the answer of the type of cancer you got is found on cells higher up in the cervix so smears don't find or prevent that cancer anyway! I challenged them again, and told they understand and that who knows if I would have got cancer anyway!
I also asked where do I go from here? They had no answer for me when I asked if was there daughter, sister, mother what would they now do I was again fobbed off with they can't answer as they have a clinical answer.
I left it for a week or two before contacting a solicitor with an interest in clinical negligence, after a thorough meeting and a long chat it was advised I had a case for possible two areas of negligence, firstly with the smear and secondly at the gynae appt, they had to get all my medical history and a copy of all my GP, hospital notes. They then began to write their report and got an independent gynae oncologist who gave an expert on their finding and what would have been the outcome if the smear was reported properly, they then advised a fertility experts report as my chances of conceiving are now halved, and I am high risk if I do manage to carry a child, in the mean time the hospital also did their own report and involved experts, and they have agreed to admit liability for the smear and that if I t had been reported properly that I would have had treatment and I would never have got the cancer!
Wow what a letter of apology to recieve! The expert reported that the care I received from the gynae was appropriate and they will only expect to claim for the mis-reporting of the smear and any injuries or losses incurred through having had the unnecessary surgery.
So at the moment I am still awaiting the fertility experts report and also under the care of a urogynaecologist as I'm having urinary issues which my GP and the urogynaecologist believe is a result of he surgery I had for the cancer, although the trust has admitted liability and want to settle out of court, the apology seems to be that of a generic one and not that I am doing it for the compensation but any compensation will go on a fund for having children and any help I need getting them and for the emotional and psychological effect I've been left with, but also that I want the trust to learn actually the implications of what's happened and if it results in just one more lady being dealt with in appropriate way then I'm happy.
I'm sorry it's been so long winded, but it's not like I could have given you the short story, feel free to PM me with any questions if you don't want to post on here.
