Hi-I have also just recently been told the devastating news after my blood results came back as high.. I had an mri/ ct scan pretty much straight away where they found a tumour on my left ovary also bowel and adrenal problems.. I'm so sorry.. please don't worry.. I know it's very difficult... and scary... I'm here if you need to chat..xx

I saw the consultant yesterday who asked for urgent CT and MRI scan. I am beyond petrified as I keep reading about ascites (I have a swollen tummy and she said she could see fluid around the pelvis). Did you have the swelling? What are your next steps. I've got a two week wait for results and not sure how I will get through it. I'm not sleeping, crying, worrying about other symptoms I seem to have developed. If it was only the high reading I think I would be less concerned but I'm worried the ascites is a sign I have advanced cancer.

Thank you. 

Well it wasn't the best outcome and I agree knowing seems much better then not!

My biopsy from the womb came back as pre cancerous but due to tumours on the ovaries the consultant explained it was more than likely cancerous and was pushing on my pelvic wall and other organs. 

I'm booked for a full hysterectomy, bowl disection on 25th may with the possibility of gallbladder, appendix and lymph node removal amongst other things to also be removed. No actual cancer part or stage can be diagnosed until after the op.

The consultant will do it all himself with a team and has said it is major surgery and may need a stoma bag fitted.

As scary as it all seems I feel better knowing them not.

Bring on the 25th x

Oh Tink!

You must be in a pickle, not knowing quite what to feel or think, and what a massive amount of news to take in.  From everything I've read, needle aspiration to take tissue for biopsy is no longer offered in order to reduce the risk of cancerous cells seeding along the path of the needle and going on to develop cancer in other tissues in the future, so not being tested until they actually operated on now seems to be the normal now.

My oldest daughter has MS and is now in a wheelchair permanently.  She had a stoma fitted last year and it certainly wasn't as bad as any of us imagined and she has adapted really well.  I know it's not the same situation but I hope it helps.

I've also read that a stoma may just be a temporary measure, do you know if that's the case?

How are you feeling?  Do you have support available? Please know that we're thinking of you xx

JM

Hi,

Think the feeling I have is numbness.

I have my husband and some wonderful friends who are in the know and I couldn't get through this without them. I have given a very watered down version to my children for now 

The stoma if required could be temporary. The plan is to dissect and reattach and if cannot a stoma would be fitted temporarily unless they had to remove more bowl than intended.

Thank you for sharing about your daughter, it is reassuring x

I know my scan results are back but my consultant was in theatre all day today so was unable to review them.  I was really hoping to hear before the long weekend but it wasn't to be.

Take time for yourself, speak to whoever you feel you want to. Have a damn good cry, whatever helps you deal and get through the next few weeks xx

Oh Tink, I'm sorry it wasn't the news you wanted but it sounds like they have a plan for you. I've read quite a bit on debulking and from other forums I have read that they can decide during surgery that  a stoma is not required or as you say reverse it. As well as being on here I have also been in a site called 'Ovacome' there are some lovely ladies on there advising each other. 
 

I also got called in today by my consultant and got some more positive news that I had hoped. As you know I had gross ascites which because I had googled to death had convinced myself I was stage 4 due to it spreading. The biopsy of the ascites fluid and my omentum have come back as not malignant. I still have a mass on my ovary which will need major surgery but the consultant said she was relieved for me as was worried. The results will be seen by an MDT team after Easter to determine next steps and I may end up seeing a gynae oncologist before surgery but it's better than I could have ever hoped. (Who'd have thought having major surgery would be a happy result!). I still don't really understand what is causing the fluid but I suspect I may not know that until a biopsy from what they remove.

This whole thing is such a roller coaster of emotions though and really makes you think that life is for living. I feel for anyone going through this xxx
 

i

AC, what fantastic news.

There's another group Target Ovarian Cancer who have an active Facebook group which both of you might want to look at, though I think AC might already have found it.

I think we're all researching everything we can find

Thanks Just-mum, I think compared to what it could have been it was great. I don't think I'm totally out of the woods but I can see some light through the trees for the first time in weeks. Yep I'm on the other site too, everyone is so kind and supportive of each other. One lady said she had put some info on Instagram that I could look at. When I took a look I found out she was the owner of a coffee shop in the town where my parents live so I messaged her and she spent ages telling me her story and answering questions for me. My husband has not been happy with how much I have looked into everything online but I'm the type of person who wants to know and seeing the support and options has helped a little. 

Hi AC,

I know what you mean about looking into everything!!  I went back to college when I hit 40 as I wanted to train as a midwife.  Got my A levels and accepted into uni, but other things in life got in the way and I never made it, but womens health and gynae has always been an interest, so I've been falling down the research paper rabbit hole the the BMJ and other such sites, it drives my youngest nuts, but it reassures me which is important.  I was interested to read about an article in last weeks Sunday paper about a possible protein which could help in diagnostic blood tests.  My mum reads the paper so I asked her to save the article for me, her and dad obviously read it through and I think she focused on the survival statistics rather than the rest of the article, she sounded almost angry that I wanted to read it and I think she was tempted to throw it away so I googled the article anyway just in case.  It's all a matter of perspective and what you're able to filter out as useful against what is scary and maybe harmful.

Have a great weekend xx

Im so sorry to hear your news Tink, im glad you have a great support system around you and wish you all the best, sending hugs xx

Well, my letter arrived inviting me to a follow up appointment on 10th May.  

Well, my letter arrived inviting me to a follow up appointment on 10th May.  

Well this is unexpected.  This morning I had a call from a research nurse at the hospital asking if I would be happy to be part of a study trying to identify ways of screening for early ovarian cancer.  She was then rather quick to insist that she wasn't telling me that I have cancer as I've not seen the consultant yet and my appointment is still three weeks away, just that they would like me to be involved.  She is sending more info by post, will call again next week, and will meet up with me in clinic when I go to see the consultant.

I have every intention of saying "yes" but I did chuckle when I put the phone down.

Oh dear, that would have terrified me.  Im still waiting on my ct scan results been 2 weeks, hoping they come through soon as im sick of this pain i have just feel sick and bloated all the time 

That's an interesting development Just mum...I'm not sure how I would take it. The fact they are not seeing you for three weeks though would suggest they do not feel you are urgent. But what do I know? I'm struggling mentally again, I'm not sure until I know my fate I will cope any better. 

Hmm, three weeks isn't very long at the moment, and remember Tinks original appointment was two or three weeks ahead and she was offered a cancellation.  I just don't think you can call it just now, what with waiting lists being months long! I won't know until I get there, and until then there's no point in worrying.  If I expect bad news and I get the all clear then that will certainly be something to celebrate, and just in time for my wedding anniversary .

oh well, thumb twiddling times again.

AC, do you have someone to talk to? Have you been assigned a contact at all? If not, can you reach out to your doctor and tell them you're struggling? They may have resources that you can access. Is there anything we can do to help?

JM

Now I'm stressed , just had an "urgent" call from the hospital to cancel my appointment on 10th May and bring it forward to next Tuesday.  Funnily enough it feels too soon.

Hi JM, all of this is just torture isn't it. At least you will know sooner. I found out the MDT meeting to decide my next steps is at 2pm tomorrow so hoping I might know more tomorrow evening.
 

Thank you for checking on me yesterday I had just had a bad couple of days. I have my husband to talk to although he is still thinking everything will be fine, I know it's good to have a positive outlook but it's just as though he is ignoring that it could be more serious. I have friends and parents too who are all there for me so I am very lucky x

Hi Ac,

Psychology is an interesting science, it could be that he is trying to keep you positive, or he needs to keep himself positive, or even that he just doesn't know how to feel so he defaulted to being cheery and positive.  So many reasons behind someone's behaviour.  I sat my husband down and asked him how he was feeling, it must be hard for him too, plus when he gets stressed he swears and blusters and shouts a lot, which just winds me up, so I wanted to head that off at the pass so to speak.  Apart from the morning of the scan when the central heating sprang a leak and I thought his head would explode, he hasn't done too badly, though I have to admit that I'm taking my daughter with me next week and not him!

You know where we are if you need to chat, take care xx

JM

So I've just heard from my consultant and the MDT team do feel that we are dealing with something benign but due to the 10litres of fluid are recommending I have my surgery performed by a Gynae Oncologist at a cancer Center. (Not sure I'm allowed to mention the name on here?!). I should hear from his PA and my consultant thinks the surgery will be this week or next. 

That's fantastic news, I hope it's made things a little easier for you, though facing surgery is still scary. Sending hugs.

Good luck tomorrow JM. Will be thinking of you X