I’m not exactly sure where to start but I’m hoping someone can help give me some advice and support.
My mum had been feeling unwell for a few months, experiencing abdominal discomfort, bloating and bowel changes. She went to her GP who ran some blood tests. Sadly not CA125. They sent her for an ultrasound scan of her liver and showed a small cyst which they told her to switch to a Mediterranean diet.
a few weeks ago, and she’s still experiencing the abdo pain and bloating. She decides to go back to doctors and sees someone else. They ran some more blood tests. Last week she got a phone call on the Monday to say her CA125 was 166 and they were doing an urgent referal. She then went in on Wednesday for an internal ultrasound scan and saw the gynaecologist straight after to discuss the results. They have found a lump to one of her ovaries with fluid around the ovary.
the consultants words were “ we need to do an urgent CT to make sure it hadn’t spread”.
Understandably, we are all in shock and extremely anxious and worried.
she went in for her urgent CT scan at the weekend and will be discussed at MDT Thursday. But now I’m really panicking as I called this morning to make sure it had been reported on ready for Thursday and she said it had already been reported.
In my head I’m now thinking they’ve found something bad to report on the CT scan so quickly!
My poor mum isnt sleeping at all theough anxiety of it all. Well, none of us are to be honest: we don’t know what to expect or what happens from here on.
I’m so so worried I’m going to lose my mum: please can someone tell me that even if it is the worst it’s not going to mean I lose her. I know I need to get a grip and I know I’m a grown 30 year old woman but she’s my mum, my best friend and my rock and I’m so scared I could lose her.
Thanks for listening.
Written by
Kerri1402
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you and your family are going through what I did with my mum and family back in October 2018. Having said that they didn’t find anything on the ultrasounds or cts. They did operate on Jan 2019 and found stage 3 ovarian cancer.
What I will say is, if it is ovarian cancer, it generally responds to surgery and chemotherapy. Many women say the chemo isn’t as bad as they though it might be.
There are many treatments out there now for oc. My mum is here and living with ovarian cancer since Oct 2018. It’s not been a smooth ride but she is here and we enjoy life as best we can. I say we, my mum is the one dealing with the ovarian cancer but it does affect the family also.
It is hard, some days not so much, but it can be treated, potentially cured.
Life does seem to carry on and you do learn to live with it.
I hope this message has been of some help. Please do private message me. I am 38 and like you, my mum is my best friend and rock!
Hello. This is really stressful for you all but try if you can not to project forward. My daughters went through this in 2015 when I was diagnosed stage 4 advanced. I am still here 8 years later. There is hope even if the worst happens.
Don’t forget that MacMillan and Ovacome will help and support your family, you don’t have to wait for a diagnosis.
You will come through this and those same clinicians who are currently working out what is wrong will have a plan, there will be a way forward xx
It must have come as a shock to you, your mother and the rest of your family. I’m sure that you will be a great support to your mum. My first scan found a small cyst on my liver. I was told that it was nothing to worry about and had probably been there since birth. Like your mum, I was fast tracked with an urgent CT scan. A multi disciplinary team discussed my case at weekly meetings for a couple of weeks and decided I should have surgery as a first treatment.
Ovarian cancer generally responds well to surgery and the surgery itself and subsequent recovery is not as bad as most anticipate. Chemotherapy is also not as bad as most people think it will be, but has well known and mostly manageable side effects. That’s crossing bridges. Your current role is to support your mother whilst she waits to hear about first line treatment.
I can’t tell you that you won’t lose your mum but I can tell you that many women on here are living happy and fulfilled lives over a decade after diagnosis.
Hi Kerri, I am so sorry that your mum and you are going through this. I am mid treatment and also have a 31 year old daughter, so I totally understand what you are both going through. The waiting for results is the worst, and I know that for me, wanting to protect my daughter from the pain was uppermost and I didn’t tell her until I had no choice. I would imagine that as well as her own pain, your mum is feeling it for you too. All I can say is that if the diagnosis is OC, you will deal with it together. My daughter has been my rock . I don’t know yet what my outcome will be, but I do know that I have got a lot of positivity from ladies on this site, I know that there is treatment out there and therefore hope. Try to stay as positive as you can, and please don’t do as I did, and spend hours googling. It’s addictive snd destructive.
Hello Kerri - what a tough time you are all going through. I really do feel for you all. I was diagnosed with OC at the end of Feb and my daughter is just a little bit older than you. Its so hard not to look into the future and panic/worry and experience fear - and all of the uncertainty around scan results makes the wait quite agonising for everyone. You've had some really helpful replies so far - it really is a case of waiting for the results. If it does turn out to be OC - there are so many treatments available now. You will find loads of stuff on the Ovacome site and the MacMillan site. There is a lot of support out there also, with the Helplines on Ovacome and MacMillan.
You've mentioned 'getting a grip' - honestly, I did not and could not get a grip when I was diagnosed and I have found out my daughter wasn't able to either. Please don't judge yourself - that is the last thing any of you need right now. You just need understanding and compassion. I did find the medical professionals involved in my case to be absolutely lovely. Kind, caring and very professional. They know their stuff and even just use of the phrase MDT tells you they are throwing all they can at looking at your mums case, checking and discussing the scans and planning the best way forward (if it turns out to be OC). If it is cancer - it is likely you will be allocated a MacMillan nurse - they are amazing, so kind and supportive. Always there if you have a question.
Please feel free to reach out on this forum if it might help - you will get lots of support . Warm hugs are sent your way Kerri xx
Hi Kerry I’m so sorry to hear about what yr mum and family is going through. I was diagnosed stage 3b OC in Oct 2007, still here in my 16th year and despite 2 recurrences currently 10 years NED (no evidence of disease). A diagnosis does not automatically mean you will lose your mum. Please keep us updated and ask any questions you need to. By the way, stay off google. Google is full of statistics and your mum isn’t a statistic xx
Thank you for sharing your experience here, and I'm very sorry to hear that your family are going through such an anxious time. As other members have commented, waiting on the results of medical tests can indeed be very worrisome.
Whilst we cannot advise on the potential outcome of your mum's CT scan, our support team are here for both you and your mum, including while you wait for her next appointment. Do feel free to get in touch, even if it would just be helpful to talk about how you're feeling. We're available on 0800 008 7054, or you can send us an email: support@ovacome.org.uk. We're on hand from Monday to Friday, 10am to 5pm.
So very sorry about your mums diagnosis. It is devastating, for your mum and your whole family. I know I felt like a rabbit caught in the headlights with nowhere to run. That’s just it you can never escape it. A lot of people don’t get that at all. I’m replying to your message as I also have a 30 year old daughter as well as a son who is 34. I worry about them more than I do myself and I feel I’m grieving for them now.
I was diagnosed just over 6 years ago and had two operations and 3lines of chemo and now on chemo tablets which are taking their toll. ( the last lot of chemo:Carboplatin and Gemcitibine didn’t work at all for me and it spread to my liver)Now ca 125 going down again, thank goodness.
It’s hard but be reassured it doesn’t mean your mum will not survive.The oncologist have now many tools in their toolbox to try and manage the disease and prolong life. I’m on a WhatsApp group of women with this horrid disease and some have survived it for 10 and 15 years.
You just have to fight on! And try and be positive. Take a serious look at diet and nutrition. [edited by moderator]
I recommend listening to Dr William Li. He is doing a lot of research into food as a medicine. He wrote’ Eat to beat disease. ‘ Thoroughly recommend it.
I wish you and your mum the very best. Be brave and keep positive. If you have anymore thoughts or questions I’m happy to listen
Found out I had a high grade uterine cancer in 2020 but know I had it since summer 2019. It is treated much like OC and has similar outcomes. At first it was 1A….but returned within two years. Currently living a mostly fine life during & after surgery & two rounds of chemo plus now a maintenance program to hopefully keep me stable or add in a cure. That’s 4 years so far after my 1st symptoms. No promises for anyone but many are living well or fairly well long after the stats show. My best advice….. have good cry on occasions if you all need it. But then give much thanks & show appreciation for any thing wonderful of the past or each moment. Being grateful as much as possible can really help relieve depression and anxiety. It is also extremely hard to think of a future & sometimes make good decisions when you literally face your time may be limited. I’m still working on that. Probably all of us should start early planning for after death as well as life. It’s easy to ignore death till it bites you or gets in your face. Glad my husband & I did do “some stuff” haphazard Lt towards that as he was gone in literally 15 minutes before this cancer hit me. . Luckily he and I did at least basic choices that has helped me stay in my home so far. I’m a strong supporter of voting for Medicare for all as well ( though Mum” sounds like you’re in a place with national care. I have friends thousands in debt before chemo even starts. I will stay politically active as long as I can fill in a dot with a pin. I’m one year out and still treating the first and hopefully the last reoccurrence.
it is hard to do but I’m finally starting to seriously accept and even just as seriously at least pretend I have a long future and try to refind and/ or reshape me. I live alone & 3-6 hours from family but every one wants me to move where they are in all different directions . Dealing with cancers and long visits with them is all the additional change I can cope with right now. I do have 3 dogs 5 pond birds & two outside cats & neighbors. Much Like you all want as much time with your Mum as you can get they too want that with me. If your Mum can afford to keep her current status & wishes to do that and not become too depressed support her in that. If you all get your wish and she is here 30-40 years from now she may be glad she has her own space and life style over those years. Young family life has as much stress as blessing and stress wears down immune systems. That’s Another reason to maintain one’s independence and old friends that have been through the years with you in a way new friends & young families can’t share.
Chemo & treatments so far have been not so bad so far. Sudden Fatigue hits me & also I must be cautions on hot days mainly . The reoccurrence came with fluid in the abdomen like your Mum has. The chemo cleared it up within the first treatment or two….hope your Mum is blessed with that outcome if she needs chemo or it clears on its own if possible. That was the most discomfort I have had so far. Praying it never returns.
Your feelings are completely normal. I have found that prayer helps. Try to stay strong so mom doesn’t add you to her list of worries. Try not to pre-worry. 🙏❤️
The waiting stage is the worst - all the what-ifs build up in your mind. This is the time for distraction therapy. You and your mum, plus any other family members she wants, go and do something nice together. Your mum's choice and whatever she feels up to at the moment. Sending hugs!
you can do this. Mum needs all the support she can get which sounds like she has with you! This site is amazing and full of solutions and brainstorming….as well as a ton of support. Get your diagnosis and then write out questions with your Mum and be her scribe it is shocking and hard to wrap your head around this. You are stronger than you know..You CAN do this
Just thought I would keep you all posted. Mum had her appointment with gynae/oncology consultant on Friday. They didn’t mention anywhere else on her CT so we are assuming if there was anywhere else they would have definately said?
However, the lump on her ovary was seen with fluid. It’s is an 8cm growth/lump on her ovary with fluid around it which is also lying on bowel wall.
They haven’t absolutely confirmed ovarian cancer yet, they suspect it is but want to do an ultrasound guided biopsy this week. They’ve warned they sometimes struggle to get the fluid off to test and if that’s the case they will go straight ahead and do a total hysterectomy and biopsy after.
2 week wait for results if they are able to do a biopsy. So not really any further forward re. Diagnosis HOWEVER so so thankful the rest of her scan was clear (we assume).
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Confused with complex ovarian cyst and next steps
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