Clear Cell Stage 1 follow-up process - no scan or abdominal examination. Anybody out there with similar experiences?

[Fromage]

Hi

I wonder if anyone's in the same position as me? I've recently had treatment for stage 1 Clear Cell ovarian cancer. Yesterday was my first 3 month follow-up appointment. It didn't really put my mind at rest as there was no scan prior to the appointment and no abdominal examination on the day. When I asked why, I was told that blood tests (CA125) plus face-to-face consultation is the follow-up process for stage 1 cases. However, it's well recognised that Clear Cell doesn't show up particularly well with CA125 - making it an unreliable marker/indicator for this cancer. Therefore, it's tricky to pick up a recurrence without noticing a physical symptom or having a scan. When I pressed the point, I was told there will be a scan at the 6 month point, which is something at least. I'm currently trying to find a good way of dealing with the persistent doubt without trotting to the doctor's every time I have a bit of bloating and this didn't really help. To be fair the doc told me to contact the specialist nurse if I had any symptoms at all and that this would likely trigger an emergency scan. I know that I'm very lucky to have been diagnosed at stage 1 and obviously don't want to be having more scans than necessary, but having clear cell is not great, and there's still the chance of recurrence. Any thoughts anyone? Thanks.

[Hidden]

Hello!

I'm sure you are worried, as I would be - but the 'Ovacome' information at ovacome.org.uk/media/14670/...

might help to put your mind at rest.

Very best wishes,

Isadora.

[Fromage in reply to Hidden]

Thank you Isadora - yep it helps to see that it's all in line with the standard protocol. I guess I was just hoping for a quick fix to peace of mind. I'm learning that there's no such thing and I need to get my head round it!

[Hidden]

Hi, we know the feeling, Sandra has her check up next week but with nothing to go on apart from asking how she feels and the odd prod and poke. The CA test is always 24hrs after clinic which can sometimes generate a scan if raised by a significant amount, therefore scans tend to be requested when symptoms are evident. I appreciate your CA is not reliable enough but if your feeling good then having a scan at the 6 mth point or when symptoms arise is sensible and therefore try and not worry about it, I think your in good hands. Love Paul xx

[Fromage in reply to Hidden]

Thanks Paul. It's really helpful to know what others' experiences are. I shall practice not worrying - now that WOULD be a miracle! I shall let you know if I manage it - don't hold your breath though!

[Hidden]

Hi Fromage

I'm Clear Cell Stage 1a too. What you've been told seems to be fairly standard. CA 125 was a good indicator for me first time round, but obviously I'm hoping I never find out if its still a good one! I still have little twinges that I think are a combination of the effects of the op and all the exercise I do now. Certainly when they did a scan last autumn because of my worries that was all clear. It's hard not to let the worries take over but at a 6month gap before the first scan is probably about right.

Wishing you well.

Linda

[Fromage]

Hi Linda - It's good hear from someone who has pretty much the same condition/stage, and to know that they responded well to your concerns - and of course that you were fine. Long may that be the case. Knowing that what's happening to me is all in line with the accepted standards will help me to deal with the uncertainty and get it into proportion again. I too have the odd twinge here and there in the op area, but am putting it down to things still settling down and healing properly. Thanks so much for for your help.

[Snoopy01]

Hi Fromage

I am stage 1 clear cell too and was told the same thing by my Onc - so i will get a CT scan just after my c hemo ends in a couole if weeks then the three month appt with no further scans before the appointment. In a way i found that reassuring that the medics are confident, but i know exactly what you mean, especially when clear cell does not show up that well on scans (mine was found after my hysterectomy) but as long as you are monitoring any twinges and physical symptoms you will be in very good hands with your Onc .

Keep smiling and big hugs!

Fiona

[Fromage]

Hi Snoopy01 - thank you - it just helps to know that it's pretty much the same for everybody. (until yesterday I hadn't actually come across anyone in exactly the same position as myself). It just illustrates that with this particular cancer type, we need to be keeping very tuned in to our bodies once treatment ends as that's how any recurrence will be picked up early. I guess that at the back of my mind, after around a year of this, I was hoping for a bit of a break from it!! Silly me eh? Never mind, I know I'm very very lucky really.

Good luck with the rest of your treatment. I hope all goes really well for you.

Alyson

[Hatters]

No real follow up for me in January when I had finishednlast carbo/taxol in December. Had numerous side effects in January such as irinary tract problems, bon and joinr oain and fatigue that I just cannot describe. Tried therapy sessions and yoga etc but I gradually got more tired and then started getting stomach pains and bloating. Nothing showed up on emergency viit to hospital on 1 March and ct scan on 4 July and I was just left. My 3 month review was then cancelled. Stomach pains continued and I went to chiropractor but it got worse. Then went to cho,e goral specialist referred by Doctor mid April and had urgent laparoscopy on 3 May for ascitrs found on mri scan the week before. On Monday 13 May I was told I was terminal 1 year as clear cell had spread like grains of sand over abdomen. Some of my omentum had been left and attached itself to bowel causing the pain. In August 2012 I was told there was no sign of anything inthe washings or omentum. I feel so let down and left to get on with things when they know hownclear cellis so aggressive.

[Fromage in reply to Hatters]

Dear Hatters

I can't tell you how sorry I am about your situation. Thank you so much for taking the trouble to reply to my question. It certainly makes me realise that I need to be on my metal re signs, symptoms and follow-ups. Have you asked for a second opinion or sought further advice/support from your GP/MacMillan or other experts? If not, it may be worth considering - sometimes different teams/medics have different ways of dealing with the same thing. I do wish you all the very best.

Alyson X

[Hatters in reply to Fromage]

Been a real roller coaster of all emotions over the last 4 weeks (my poor husband just cannot believe it) as I was so positive through all the bad side effects of the chemo last year. I got referred tothe Royal Marsden as I had lost trust in Guildford and they obviously could not deal with such a rare type as clear cell. They shiuld have referred me there last ear instead of just giving me standard treatment which they said was caught early ( huff!). It proves we are just a number and that is all. Anyway I got myselfreferred this time to the Marsden Sutton and I am now on my third weekly taxol there today of 6 and scheduled for ct scan fterwards to seebif taxol has had any effect on keeping it at bay for a while. This was different treatment tovwhat Guildford put forward. Love Moira x

[Fromage in reply to Hatters]

Hi Moira - I can only imagine how you must have been feeling but I'm very pleased about your referral - sounds like they have more expertise and I so hope new approach will offer some effective treatment for you. I will be thinking about you and sending positive thoughts to you. Good luck today and with the rest of your chemo. Hugs, Alyson. X

[Pollywollydoodle]

Hi,

I was clear cell 1c in one ovary plus endometrioid in other ovary five years ago- two primaries. I had the same monitoring and am five years on with no recurrence yet. I feel lucky because I had nodules on the bowel following the surgery which looked suspicious but disappeared after chemo. Reassuringly, when I had trouble with adhesions x 3 and hernias they were very quick to scan me- they wait until you have symptoms unless part of routine monitoring and every case is different.

The gynae consultant will monitor for me ten years due to clear cell, so I am on yearly appts now and can ring the specialist nurse if concerned. Hope things go well for you.

Polly xx

[Fromage]

Hi there Polly

Thank you so much for getting back to me. I'm interested that you've been told you'll be monitored for 10 years. From what you've written, you've been told it is 10 years due to the fact that it's clear cell - am I right? I'll make a note to ask about this at my next follow-up.

You're right - every case is so different it does make it difficult to compare, but it has been really helpful to hear from you.

Thanks again and good luck to you in the future too.

Alyson X