recurrence or not? (Liver & stomach wall)

[Alibee2]

Hi folks just home after a liver biopsy after a CT scan following raised CA125 of 21 (mine usually sits @ 6-7 & never went higher than 80s) raised CEA @ 57 (apparently normal is 5 or under?). Originally in 2016 I was diagnosed with stage 1C endometroid and mucinous OC - Ned since then.

I had naively thought an OC recurrence would be pretty obvious but it the last few weeks I’ve have been told I probably have bowel cancer and lined up for a colonoscopy (cancelled) then a secondary on my liver which was not OC related & now might be OC related or might be a primary liver cancer. & then today I’ve had a call about an endoscopy as I may have stomach cancer. Im feeling confused & totally out of control as each possibility involves a different team based over 3 different hospitals with, it feels, no one in overall control.

Has anyone else had an experience like this with diagnosis of a possible recurrence? Is this normal? - does anyone have any words of advice?

Has any on one had recurrences of either of the 2 types of OC I had on the liver or stomach wall? As I’m being told it’s not a ‘normal’ place. Thanks Alison

[Lyndy]

Hi Alison, I have had people tell me I had all sorts of things when I had a recurrence and it’s really not helpful!

It seems to me that recurrence is often more difficult to determine than original diagnosis, so I wouldn’t listen to theories, you need facts, which is hopefully what the biopsy will give you.

As for it being in a normal place… well have they met OC? It goes everywhere and anywhere.

Best of luck as you continue to deal with this, it’s never easy xx

[Alibee2 in reply to Lyndy]

Thanks for the good common sense response… you are so right … I have asked my GP to coordinate all the teams communication for me and to try & restrict communication with me to factual info & decisions rather than speculation as it’s not been helping me at all

[Skyeplus]

Morning

I don’t know if this will help but I am in a similar position. I was stage 4a on diagnosis and the OC (which gets everywhere) had spread to my peritoneum (stomach lining). Surgery and chemo sorted and I was in remission and taking Niraparib. Two years later I have recently had a CT scan and been told I have progression on my peritoneum and recurrance to my liver and spleen. Niraparib not working. Back on chemo.

So firstly it seems that your team are really checking you out and although that is confusing try to hold on to the fact that they are doing exactly that. The biopsy will provide fact which can then be dealt with. Do you have a Specialist Nurse assigned to you that you can call? I find them really helpful and they will answer questions.

The biopsy will give you an answer about that but I know it’s hard to wait.

As Lyndy says OC gets every, it whispers and spreads with no symptoms. It makes it hard to determine what’s going on.

Remember you’re not alone. There are many of us on this journey and you will get lots of love and support here. Have you rung the Ovacome helpline? They are great at advice. I found it helped to write down my questions and Ovacome can help with what to ask.

Good luck will be thinking of you 🥰

[Alibee2 in reply to Skyeplus]

Thanks for this! Really helpful. I do wish my old Board area specialist nurse had not recently retired (& her post is vacant) as she was my ‘go to’ person. Unfortunately I can’t access the one in my new Health Board area as I have not been formally referred to that team - which is a pain! From the replies I realise that what they are seeing on the scans is definitely not unknown for an OC recurrence and I just think I’ve come up against health professionals who know very little about OC Which, we know, is not that unusual as many of us were misdiagnosed by health professionals who didn’t know the symptoms/had had no awareness training.

Wishing you all the very best x

[Mariej2021]

That does all sound very complicated I would imagine your oncology team are in the background making all these referrals to check out various areas and the results get sent back to them and then they will arrange to discuss with you The colonoscopy waiting times can be long even for red flag which doesn't help I agree your oncology specialist nurse would be a good port of call for support and reassurance that oncology are overseeing this all and are collating the results I hope you are not too sore after the liver biopsy Hugs x

[Alibee2 in reply to Mariej2021]

Thank you (especially for the hugs). My GP is now trying to coordinate for me as I asked the Q & it appears the teams have no real structure set up to enable them to collaborate across Health Board boundaries (they can’t see each other’s results on their IT systems etc). So fingers crossed I can get an agreed plan sometime soon.

[Trickysite]

Dear Alibee,

I hope some of the following helps.

You may be going to 3 hospitals because that is where the best expertise lies for that condition, so perhaps this is a positive thing. Ask the reason why you are going to 3 hospitals and ask which Multi Disciplinary Team is overseeing all the results from the different teams.

Re: liver. After my debulking op. following first line chemo, the scan showed something on my liver. I had a second scan for it a little while later and then they lost interest in it. So, perhaps it will turn out to be just a "freckle". I hope so.

Re: stomach. When I was initially diagnosed 4b oc two years ago, I already had ovarian cancer in my stomach (as well as so many other places!). I had a 10 hour keyhole operation under 2 surgeons - a gynae and a gastro surgeon (Mr Nima Obassi at Royal Surrey Hospital at Guildford) on NHS. Mr Obassi removed half my stomach. I had no pain after the op. which took out so many organs I cannot count them. I had no digestive problems. Perhaps, you do not have cancer in the stomach, but it may be comforting to have this info. Altho' oc in the stomach is a little unusual, I prove it does happen, but maybe you will turn out negative.

I believe the normal CA125 range is c. 10 -35 and it varies from individual to individual. I don't know about CEA.

I have been on Olaparib for 18 months.

I wish you all the very best, love, Emma x

[Alibee2 in reply to Trickysite]

Thank you Emma that is really helpful, I have now asked the Qs - why 3 hospitals is partially to do with specialisms & partially waiting lists so that’s OK but there is no team in overall charge & my GP says she is doing her best to coordinate what’s going on via email but has said it’s ‘difficult’ which explains why I’m getting contradictory phone calls (& very confused!). It’s good to hear your op went so well- I must admit I wasn’t expecting to need another major op after the big hysterectomy in 2016 (I thought recurrence was usually treated by chemo only)but my original team have now mentioned it might be an option depending on what the biopsy reveals. Wishing you lots of good things in your future Alison x

[Trickysite]

Good lucK! I think follow on ops are very common.... Emma x