Absolutely terrified, anyone else been here?

[Scaredycat4]

I am 35 years old and have two beautiful babies. A 1 year old DD and 4 year old DS.

I noticed my stomach didn’t go down as easily post baby daughter as quickly, and about 6 weeks ago I noticed a large lump that moves around my abdomen freely. I have no symptoms of anything else. Periods/sex/appetite/ everything else is totally normal. Periods are heavier now but figured that was post section number 2.

I honestly thought it was a hernia initially.. I went to see the Dr as it seemed to be growing and was immediately sent for an Ultrasound. The US lady said there was a large cyst 10/8cm but couldn’t tell if it was connected to the ovary and a 5cm one on my right ovary and neither were simple.

I was then sent for blood tests and the Ca125 was 48.

then sent for MRI and bloods again, bloods came back as normal for everything accept ca125 was now 68

MRI showed the ‘cysts’ are now 14/10cm and still 5cm, still not 100%sure what the big one is connected to.

Had gynae apt and the junior Dr was quite negative, said that both cysts are complex and have blood flow, and septations, all cancer markers are normal accept supposedly unreliable ca125 now 68. No ascites

the senior gynae Dr then came in and said are you done having kids.. she then said they will probably take both ovaries and potentially more if necessary.

she said I need to go for a CT to see if there is evidence of disease anywhere else. Then made a throw away comment about debaulking. No mention of early menepause.

The junior Dr said it could be benign… but that was not a strong message throughout.

I had the CT last weekend and am waiting on results of that and the gynae onc nurse will call and fill me in on the next steps after the MDT delayed by Bank Holiday obvs.

They both said if it was high risk of cancer it would be at one hospital and if lower chance then a nearer smaller hospital.. but then said the better surgeons are at the bigger hospital.

they also said they don’t know what it is, do they assume cancer till they know it isn’t 🤷‍♀️

since this meeting I have been absolutely shattered, there are so many what ifs, and different outcomes and the wait is mentally draining.

I have convinced myself I am going to have stage 4 and will not see my baby start school.

please positive stories only.. this situation is currently ruining my life.

Hey, sorry to hear this I've had the same sort of results today did you get any other results? I keep thinking the worst thanks Becky

So sorry you are both going through this. I didn’t want to read and run, really hope you both get good news!

Sorry to read this. Hoping it all worked out. How did you get on @Scaredycat4

I am well and truly on the mend after a laparotomy, and am awaiting the final histology now results🤞

The surgeon says the preliminary results suggest a muscinous ovarian tumour. She managed to remove one ovary with the large tumour and cut the other tumour off the other ovary whilst sparing my fertility which is great news.

I was supposed to get the results on Monday but they hadn’t come back yet.. so we went in to see the surgeon terrified and came out non the wiser 😰

I am just so nervous, and so ready to move on with my life which feels like it has been suspended in fear for 2 months.

How are you?

Muscinous Borderline Ovarian Tumour I should have said… which is confusing on its own.. as it’s not cancer but not benign 🙈 I feel lost to be honest!

Hi, to give you some positive thoughts- I was almost exactly like you, cancer started when I was pregnant, diagnosed when my DD was 11 months and I was 33. Diagnosed at stage 3C and had to have full hysterectomy and multiple surgeries and chemo. I am now coming up to my 10 year all clear and my DD just started secondary school! Wishing you all the best.

I had a similar thing happen. I was diagnosed after my laparotomy as a stage 1b cancer. I also had ovary and tube removed. March next year I will be given the official all clear after 5 years and will be discharged. I was a wreck throughout the whole thing. If you can speak to someone in mental health I think that would really help. I rang Macmillan who really did help calm me down a bit and was nice to have someone just to listen. Hope you get good results and have plenty of support.

Mine also started after pregnancy strangely enough. I was only 21 so they really wanted to protect my fertility. Thankfully they did and I'm currently pregnant again 10 years on from when it was first found. (Mine was left for 6 years while they watched and waited which was negligent and traumatic)

Thank you all for the messages, will keep you posted! We find out Friday late afternoon and are supposed to be going on holiday the next day as a family.

I don’t know if we should go.. but have been stuck in this hellish what if world for so long I want to escape and a holiday could be the perfect way to move forward 🙈

If it’s bad news am I going to want to curl up in a ball and cry for a week, or go on holiday with my babies first thing the next morning.. I have been backwards and forwards on it all week. The accommodation is booked and has been for months.. we just need to get some last minute flights and go, but I don’t want to leave it till Friday night 😰🙈

Go on the holiday. You really need it, it's very hard going to all these hospital appointments. I really lost myself for a while and just felt the first slice of bread in the bag everyone touching me no one wanting me, they are invasive appointments. Go and have a week with your family and enjoy it try and leave the hospital at home and be you for a week.

Just wanted to send you love (and anyone else on the thread awaiting news or having a tough time). Sorry I’m no help x

Hi, just wanted to say that I am feeling similar waiting for test results. I have some odd but serious symptoms that no one can explain and I have previously had cancer so it's hard not to think the worst.

I had a load of tests last week and was told I would get results within 48hrs (private hospital). I have been chasing ever since and they're still not giving me results. The consultant has been emailed the results and his secretary also has them but they still haven't given them to me. I feel like I am slowly going out of my mind as I am constantly checking my email and going through all the what ifs.

I have a follow up with the consultant in 2 weeks but they said they would send me results before that but now I'm wondering if they're going to make me wait until then. It's seriously making me feel crazy. I also have a big family event this weekend and thought I would know by now but I'm still in the dark so I'm dreading having to pretend to be all happy and jolly when I am seriously going out of my mind with worry.

Hope you are okay @Notcookie

Hi, I actually got my results back on Friday and they are normal so that's a massive relief. But at the same time it doesn't explain my symptoms and why they are happening. It's an emotional roller coaster and I'm just so tired of living in fear all the time. I have a consultant appt at the end of this week so hoping for some answers but doubt there will be any. Also missing DD who has just gone to uni so struggling massively with missing her. Feels like a bereavement even though I get to see her every few weeks.

Hi there Scardycat, when I read your initial posts I had a feeling this would be the outcome but only because I’d been down the same road as you - my cyst was almost 6kgs and my diagnosis was stage 1a.

I know how terrified you are right now and that nothing anyone says will help you but there are people here who you can chat to when your ready.

Your surgery is the only treatment you will need. How invasive was it. I was filleted like a fish and if I could live without an organ going forward it was removed. I’ll never get appendicitis 😂

I’m almost 3 years down the line now and it’s only these last few months I’ve started to feel relatively ok mentally (I had a breakdown when everything happened, it had been a longtime coming) and I’ve made the decision to forever more stay on 10mg of the Anti-anxiety medication I was put on 3 years ago. Don’t suffer with the emotional trauma of it all in silence. See your Dr and take any help they might think that you need.

Sorry, my diagnosis was Mucinous Ovarian Cancer stage 1a. My huge surgery where they removed everything that wasn’t glued down was the only treatment I needed.

Hope you're doing OK @Scaredycat4.