Hi everyone, I was just wondering if anyone had any advice on how to better ‘manage’ appointments as I find the process quite confusing and therefore unsettling.
As a bit of background I’m 30 years old and was diagnosed with Stage 1a mucinous adenocarcinoma of the left ovary in August following a laparotomy which removed the affected ovary and tube, my appendix, my omentum and various lymph node biopsies. All standard I understand, and I appreciate how lucky I am it was all caught and removed so early. I’ve recovered well from the op.
I had my first 3 month follow up in October and had a physical internal examination and blood tests (CA-125 and CEA). At that appt, the consultant said he also wanted a transvaginal scan to be booked and then a return appt with him, which was scheduled for today.
At today’s appt, I didn’t see the same consultant (in 10+ appts in the last 4 months, I’ve seen a different person everyone time bar one) and the person I did see seemed to start by treating it as the first three month check again ie explaining the need for a physical exam and blood tests. I had to explain where I was in the process, how it should be re scan results and that I’d only recently had blood tests. I asked questions to try and better understand the process and what to expect at 3 month check ups but I’m still confused. At one point he asked where I had been told I’d be seen every three months and I said that ever since the op I’d been told that was the plan, and he said ‘yes I agree, makes sense’. So was it a question or a statement when he asked me?! It seems like with so many people looking at one file from appt to appt no one ever really knows what the purpose of the appt is or I have to explain it all rather than it being evident from my file. And I feel like I only know things because they tell me in the first place, so it’s a bit weird to then have to confirm it back like it’s my knowledge to start with!
Do others feel like this? Do you have any tips/suggestions on how to manage the appointments/expectations better? If you are on ‘routine’ monitoring every 3 months do you tend to have blood tests/scan booked in before the appt so that it’s all there to discuss? Do you have to chase to get the appointments or does it organise itself as required? For anyone with a mucinous tumour (borderline or malignant), do you only have those two tumour markers? (My CA-199 was initially elevated but they don’t seem to check that now?) Slightly separate, but re the scan result he said the remaining ovary was ‘quite small’ but I didn’t fully understand whether that’s a good/bad/neutral thing?
Sorry for the rant/so many questions - I feel a bit helpless and frustrated whenever I come out of an appt, which seems to defeat the purpose of them to some extent!