Appointment confusion

[Lisx87]

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!

Thanks,

L

[Welshandproud]

Hi there LisX

This really does seem unfair. Could you perhaps talk to your cancer specialist nurse and explain your lack of continuity of care. He/she should hopefully be able to help or at least give some advice.

At the start of my cancer journey I was advised to buy a diary, record all of my appointments and any advice and treatment given with the names of any staff involved. I found this invaluable when I forgot who said what when. It seems obvious but it really helped.

Sending gentle hugs xxx

[Lyndy]

Hello

I am afraid this is all too common, especially when you see a range of different people. I would establish who is in charge of your treatment plan and who your CNS is- should be a named person. These people should be able to make things work a bit better. Bizarre as it sounds the hospital may not realise that you have not been seen consistently by one person (clinics often bump people with good results on to the junior registrar).

You can do a high profile complaint through PALs or you can go low key through the CNS, consultant secretary or cancer support system. But I would make it clear this is not ok...potentially it could put you at risk if a change in your condition wasn’t picked up quickly.

The NHS needs our support but we must also be honest when treatment falls below expectations.

I still take notes at appointments and have even voice recorded stuff on my phone! Best wishes Lyndy x

[Petrolhead]

Hi

Agree with the others that keeping a diary just for the medical stuff will be very helpful. It will also allow you to check when the next appointment is due.

A lot of ladies have found that you have to take charge of what happens to you. It can be difficult for some people to be assertive with the medical profession but you have to think that you need to be in order to optimise your outcome.

I have also been diagnosed mucinous (1C1. )

I have insisted on continuing CA19-9 rest. If they miss it off the blood request I tell the person I am seeing and they have just added it on. As you have a baseline number for this - it could be very useful for monitoring. The CA125 does not tend to be as useful for mucinous as it is for other oc

I usually see the main oncologist every other appointment with the registrar for the others. Usually when seeing the registrar I have to tell them about mucinous as not very common.

Always ask your named CNS for copies of blood test results and any scans or histology reports.

Do not expect who you see to necessarily have read and be familiar with your situation. Be proactive before appointments and be ready with any questions. Keep repeating those questions until you have answers. It maybe your CNS that might come back to you with answers.

You can do this, you are important.

Regards Fay

[Purple-iris]

Hi

Good advice from the other posts . Just to add I ring my CNS nurse and get her to order bloods /CA125 a couple of days before my oncology appointment so that when I go they have the latest results . Does mean 2 trips but worth it for my peace of mind .

Often seen different members of the oncology team ( over the last year and a half ) but they normally have my notes open on computer and are aware of my treatment plan and status . Was led to believe they have team meetings in the morning and discuss all the patients with the lead oncologist ( who has remained the same ) before they divide up the appointments . But I suppose different hospitals have different systems in place , however you should have confidence in your team so would defiantly speak to your CNS re the confusion .

Love and best wishes Kim x

[Lisx87]

Thanks so much to you all for your very helpful comments. I’m not even sure who my CNS is (if it is one named person) but will phone today to try and get some clarity and also to feed back that the continuity of appointments hasn’t worked well. I agree it’s probably no bad thing if I’m seeing more junior members of the team as hopefully a sign everything is ticking along ok, but the fact the appointments themselves feel chaotic and uncertain undermines that. This is a great forum of support and just reading the replies last night made me feel more calm and capable than I have been able to otherwise - I really appreciate it xx