Update

[LivK90]

So we have just come back from our consultation, turns out mum should have been staged as a 2 because of acseties in abdomen and disease on baseline ommentum.

So annoyed we weren't told about this. She is also having a test done on her kidney function as bloods showing up irregular before chemo.

I am so scared. I feel I cant trust the doctors as they constantly get things wrong. Im so worried about my mum, having clear cell as well. Please could anyone advise? Im upset all the time not sleeping well.

[giovannabett]

Really sorry to hear about this. I was initially diagnosed with a hernia but my stomach grew and my weight left me skin and bone. I pestered the doctors and got consultants in GI, MultiDiscipliniary conferences seemed to point at an ovarian cancer-linked disease but I am an impatient type and I went to West Cornwall A/E and the doctor gave me the bad news. If my reply is of any help maybe refer yourself to A/E, in my experience they will put you on the right path particularly if you have a right to go to A/E.

Hoping for the best for you. Gio

[TrishLey]

Hi Liv,

I'm so sorry to hear this. I was first diagnosed as stage 2B but they changed it 3 months later to 3C. I was annoyed too but I had to get over it and on with the treatment. Since then my team has been great and I trust them 100%. Initially I think at diagnosis everything can be up in the air. Make sure to remember they are working for your Mum. They are your mums oncology team. Have your questions written out, your GP should get all the updates and test results you can also ask for a copy too. Try and relax and sleep being stressed out and worrying all the time will effect your health eventually and that is not good.

Wishing you and your mum all the best.

Trish

[LivK90 in reply to TrishLey]

Hi trish, that is a big change in staging. Hiw did the staging change? Was it wrongly diagnosed before operating or?

Yes we do have to take each day and battle on. Up until biw I have been very pleased with the oncology support, was just upset why they failed to mention omentum disease, this was suggested to be seen in a CT prior to mums operation but was unknown if the actual results of omentum. I know she had a kot of endometriosis scaring, even appendix removed. How are you at the moment? X

[daisies]

I am sorry to read that you are losing trust with the medical profession. But I sometimes think it is must be very difficult to stage the disease clearly. I never have a high ca125 reading - so a slight elevation is relevant, but others could have a reading in the 'hundreds thousands' and not have active tumours.

I know that some drugs can affect the kidneys - i am checked every 3 weeks to ensure no problems there.

If you have cancer support group in your area, try & get to see them, also chat with your Mum's liaison nurse.

Other than that, all I can say is that I am sending your Mum best wishes.

Maureen

[LivK90 in reply to daisies]

Yes it must be hard to intitally diagnose. I am scared what the future will hold, but we have to take each day as it comes. I just dread the appoinments as its like "oh what bad knews are we going to get told this time" I think prior to this they made so many mistakes with mum. Loosing her notes, blood results, she was told she potentially could have cancer as Ca125 was 100, her cyst ruptured prior to surgery and they did nothing about it. 3 months later they finally operated and we learbed the histology through a letter. Which was a horrible way to find out. How are you doing at the moment? X

[daisies in reply to LivK90]

HI. I can assure you I have some days when I wonder did they get the diagnosis wrong; did something go wrong at surgery; - but I usually get over that - after I have discussion with my oncologist. He really is the most patient man I ever cam across.

I never asked to see my notes etc - as I wouldn't understand most of it and would drive myself mad trying to figure out everything.

I told a story one time about reading a report/study paper/trial (!!!|) about OC & possible treatment options, and ending up with a report in one hand and a dictionary in the other hand and getting more confused as I went along. So gave it up - and even told my oncologist " that I had been convinced that I would suddenly find the 'cure' for my cancer". So, he went to college to study - so let him do the reading and understanding, and I will continue to torment him with questions.

Anyway, today is a good day - swimming this morning and also my craft group - and able for all of that and tonight going our to play bridge. WIll be tired afterwards - but lifwis for living when we can.

Best wishes again to your Mum.

[LivK90 in reply to daisies]

Yes I totally understand. I think it's not a good thing to read too much into it. We have some of mums notes from previous CT scans and results were different on each page. I made the mistake of researching too much into it and it can easily scare me. The results on clear cell arent great. But coming on this forum inspires me to gain hope. Im just scared of the future, future scans and the Drs. Im glad youbare doing sowell and keeping busy. Livi xx

[Hidden]

I can totally understand why you are upset. I loved my Mum too and felt very protective of her. I think it's natural what you're feeling. Xx

[LivK90]

Infact, I will state we haven't actually been verbally told this. We only found out in a lettwr our oncologist wrote to our gp. Suggesting it should be staged as a 2. The official FIGO staging was a 1c... I don't know what to believe. I guess we just have to focus on getting mum through the nwxt treatments and next up to date future scans. She hasn't actually been scanned since Sept Last year. Which was an MRI before her op in Oct. Love to you all xxx

[Hidden]

Hi Liv, I know what it is like to be between a rock and a hard place ie what you are told and what the letter to your gp says. I found that rather stressful. If you are worried ask for a ct scan for your Mum and ask to see the gynae oncologist and team. If that doesnt work out, speak to one of the macmillan nurses as I guess you are in the UK. Sometimes the gynaes adopt a wait and see attitude but at the same time they have a duty of care to your mother and it would be no harm to point that out at the next consultation. I am speaking from a patients experience. Is your Mum on treatment at the present time or waiting to start again. To be honest, I dont know what stage I am at, I started off borderline and ended up with a few recurrences. Yet I am here to tell the tale. Currently I am on Avastin for maintenance until such time as it affects the kidney function. So far so good

[LivK90]

Yes I am torn between what to believe. FIGO said stage 1c and now Oncologist saying possibly stage 2 looking at older scans. But surely the biopsy and histology is the most relevant. There is obvious some communication problems somewhere. We have a lovely oncologist. Mum is currently having first line treatment now, 3rd cycle tomorrow.

Xxx

[Hidden]

I think we can all get hung up on these things - and I suspect they are sometimes easier for us to worry about than other issues.

I too had the experience of a letter to the GP saying something slightly different from what I'd been told. When I queried it with the onc, she had a sensible answer.

But, at the end of the day, 1b to 1c ( in my case) or 1c to 2 in your mum's case is just one step on a continuum within this horrible disease. There are no certainties with any of it!

Sometimes it's tempting to focus on what the medical staff don't appear to have done as well as they might have. And forget what has more or less been done as well as possible.

A wise and very nice doctor I met on an emergency admission described doctors as "creative artists"! He was trying to put our faith in science into a bit of a perspective..... He did for me!

Wishing you and your mum the very best. xx