Advice please all you wonderful ladies !

[Mellucy]

Hello to all on this forum,

I hope you don't think I am an outsider but I would really appreciate any advice

My Daughter (31) felt really bloated, heavy and a little tired throughout 2021, long story very short, she was told is was muscular, putting on weight etc

She is naturally a size 12, the ballooned to a size 16 over 6 months. Early December I took her for a private ultrasound as the NHS sadly were so busy. the scan showed 'ascites' and some minor lesions on her liver but also showed a very large ovarian cyst.

8 weeks later (on the wonderful NHS) she had an 18 pound cyst removed measuring 42cmx35cm x 18cm. we were told by the consultant that it didnt look 'nasty' sadly, on Wednesday we were told that it contained cancer, a very rare form Mucinous ovarian cancer, it is grade 1 thankfully and has been removed

I am just hoping someone out there has had similar, I am beside myself as her Mum and just want the best outcome.

Thank you all, and I wish you all so much happiness and positivity

Mel x

[Katmal-UK]

Hi, Nobody here here will consider you an outsider and although I cant help as I have no experience of the type of issue yr daughter has but as one mum to another I just wanted to give you a virtual hug and hope someone will come along who can offer advice. Keep at the forefront of your mind that your daughter’s cancer has been found at an early stage which is good . I wish your daughter all the very best. Please keep us updated and remember to look after yourself so you are then in a position to look after your daughter xx Kathy xx

[Mellucy in reply to Katmal-UK]

Thank you so much for your kindness Kathy, will keep you updated. take care of yourself, Mel xx

[Hidden]

Dear MelI am sorry to hear about your daughter. I too had an 18 lb cyst which was cancerous 25 years ago when I was 41. I remember being very uncomfortable and very tired. It was an early stage cancer and although not the same type of tumour as your daughter it did need major surgery and I had to have some chemotherapy. Since then I have had no recurrence and am well. Let me know if there is anything else you would like to know and wishing you and your daughter all the best

[Mellucy in reply to Hidden]

Thank you so much, my Daughter too needed major surgery (a laparotomy) from her diaphragm all the way down so not only is she getting used to her new body with a huge scar but the whole episode. Fortunately they have managed to preserve the other ovary and fallopian tube as she is so young and has no children. thank you so much for your support, really appreciated. Mel x

[Saffery1 in reply to Mellucy]

If it's some consolation to your daughter I had open surgery and after a year you can only notice my scar if you're looking for it - and I'm 63, her skin will undoubtedly heal better than mine! Send her hugs x

[Rosado22 in reply to Saffery1]

That is comforting to know, as I am getting ready for the chop ….

[Sclare in reply to Mellucy]

Hi Mellucy , I have been reading all of the posts you have put on here and would really like to have a chat with you and your daughter as we are the same age and have both had the same diagnosis and fertility sparing surgery. I hope your daughter is ok and feeling better xx

[Jannibags]

Hi Mel! I'm a lot older than your daughter (69) so don't have the same issues, menopause worries, etc. However, I did have a large mass removed at the end of 2019 which turned out to have cancer growing in there. It was stage 1 and my surgeon was fairly confident she had got it all out. Still NED so far!🙏🤞 Mine wasn't quite as large as your daughter's ( I was a stone lighter the morning after the op) but, like her, I went from a size 12 to going on 16. Thought I was just overweight so went to Weight Watchers, lost a stone and a half and then you could see the mass really as tummy didn't get smaller when everywhere else did! So that was my experience. Sounds like the outlook for your daughter is good, keep us all posted, we'll be thinking of you. Lots of positivity on here! ❤

[Rosado22 in reply to Jannibags]

Thanks for sharing, there are some interesting stories on here. I just got to goal having lost two stones with Slimming World and was going to Pilates and the gym and looked fitter and fitter, but the strength I had was disguising what lay within and I discover finally that there is a 10 x 8 cm mass in there, which I think has green since the ct scan. The strong pelvic floor muscles eased the pain of the weight but didn’t disguise feeling like I had been thumped between the legs after walking uphill - not a symptom I found anywhere incidentally.

[Rosado22 in reply to Rosado22]

Grown, not green.

[Jannibags in reply to Rosado22]

Scary isn't it?

[Rosado22 in reply to Jannibags]

Yes , Jannibags. I need to pull out my inner strength now, and stop pitying myself. I’ve been determined in other walks of life, so time to apply this to medical issues

[Jannibags in reply to Rosado22]

We've got this!💪❤

[Mellucy in reply to Jannibags]

Very. Had this huge cyst not had become so big we would never have found this rare ovarian cancer as all her CA125 came back normal. I/we are so grateful for the cyst and the size of it otherwise it would have never had been detected. x

[justfiguringitout in reply to Mellucy]

👋 I have also been diagnosed with stage 1c3 Mucinous Ovarian Cancer.

I had a 19cm tumour, appendix and tube removed at the end of Dec then received diagnosis, following biopsy result, at the end of Jan. My hysterectomy is scheduled for next week with chemo to follow.

I've been looking around online for more info/people experiencing similar so it's great to see your post.

Sending best wishes to you and your daughter.

[Fluffyjumper]

Hi Mel

I’m older than your daughter but have had a similar experience. I was diagnosed with ovarian cysts about 5 years ago. These were monitored for a year. Last year I put on weight, ballooning from a size 12 to 16, feeling nauseous, getting out of breath and needing to wee a lot. I went to A & E in November 2021 where the doctor I saw thought it was a kidney or gallstones or that I was constipated! A subsequent scan found small cysts in my liver and a 35cm ovarian cyst. I was shocked but also relieved that there was an explanation for my weight gain. I’m sure that your daughter felt the same. I had surgery early December, with full hysterectomy, removal of the ovarian cyst, biopsy of omentum, perineum, lymph nodes and abdominal washings. Everything came out clear with the exception of the cancerous cells in my cyst. The operation and recovery was tough, although I came out of hospital feeling a lot better than when I went in and over a stone lighter. I was told that my liver cysts were unrelated to my gynaecological issues.

I think that your daughter’s treatment will depend upon what was left after surgery and whether she wants children. I know that it’s hard to be positive but please be reassured that the outlook is good as the cancer was found at an early stage. Your daughter needs to focus on recovering from her operation. Sending you big hugs and lots of positive thoughts.

[Rosado22 in reply to Fluffyjumper]

It is reassuring Fluffyjumper to hear you recovered from the op, even if it was a slow process. Awaiting the same op currently.

[Fluffyjumper in reply to Rosado22]

Hi Rosado22My op went well although I got an infection in hospital so was on antibiotics for a couple of weeks. I felt a lot better after the op as I was far less bloated, could breath better and had more energy. It was hard to stop myself doing too much and I had to remember to rest. I occupied myself by reading, doing some on line courses, improving my French and phoning friends. I was out walking my dog about 10 days after my op, and walking for over half an hour within a fortnight. I swam after 6 weeks and returned to work after 8 weeks.

I’m amazed and saddened that so many of us need the same operation. It seems that a lot of cysts are left until they become problematic and very large.

[lesleysage]

Hello Mellucy, If your daughter and you, or any friends and family feel more information could help with this unwanted happening, please do feel able to contact the Ovacome freephone helpline 0800 008 7054 as they have helped many of us here with knowledge and support. My ovarian cancer is not your daughters type so I cannot help from personal experience, hence the pointer to Ovacome. Warm wishes to you both, L x

[Lind58]

Thinking of you and your daughter 🙏🏽

[Heart12345]

I have a different form of ovarian cancer but one bit of advice I would offer is to look into if the consultant she is under is a specialist in ovarian cancer. X

[Petrolhead]

HiThere are several of us here that have had Mucinous OC.

To see previous posts on it put mucinous in the search function so you can see them.

It would probably be better to edit the title of the thread to include mucinous so that those ladies like me can give you some info.

Best wishes

Fay

[justfiguringitout in reply to Petrolhead]

👋 I have also been diagnosed with stage 1c3 Mucinous Ovarian Cancer.

I had a 19cm tumour, appendix and tube removed at the end of Dec then received diagnosis, following biopsy result, at the end of Jan. My hysterectomy is scheduled for next week with chemo to follow.

I've been looking around online for more info/people experiencing similar so it's great to see your post.

Sending best wishes to you.

[Petrolhead in reply to justfiguringitout]

As I said to the OP. Search for mucinous, as I and others have put a lot of information on it in previous posts. You can also search members like me as Petrolhead and you can see the option of replies. Go into that to find all the information. If you are on Facebook then there is a mucinous OC Facebook group you can join. I am not on Facebook so I don’t know how useful it is.

Any specific question please feel free to PM me.

Best wishes

Fay

[justfiguringitout in reply to Petrolhead]

Thank you, I will.

Have become rather obsessed with finding out more

[OvacomeSupport Partner My Ovacome Team]

Hi there Mel

Thank you for your post. I’m really sorry to learn of your daughter’s recent diagnosis of mucinous ovarian cancer. I can see you’ve had some supportive replies from the forum community but I just wanted to share Ovacome’s clinical information booklet on mucinous ovarian cancer that I hope may be of interest: ovacome.org.uk/mucinous-ova... .

In addition, Ovacome facilitate a monthly support group via Zoom for friends and family of those diagnosed with ovarian cancer. This is a safe space to speak with with others supporting a loved one with ovarian cancer, ask questions and share experiences and advice. Our next session is on Tuesday 22 February between 5-7pm, you would be really welcome to join us. For more information about the group and to sign up for next week’s session, please visit: ovacome.org.uk/event/family... .

We also facilitate a rarer cancers support group that your daughter may like to attend. This is a friendly environment for anyone who has been diagnosed with an ovarian cancer that is not high grade serous, to connect with others who may be going through similar experiences. The group meet virtually via Zoom on the second Thursday of each month between 2-3:30pm and our next session is taking place on Thursday 10 March. For more details about the group, please visit: ovacome.org.uk/event/rarer-... .

We’re here to support anyone affected by ovarian cancer, so please don’t hesitate to get in touch if you would like to talk things through with a member of our support team. You can call us on 0800 008 7054 or 07503 682 311, email us via [e-mail] or reply to us directly through this forum. We’re here Monday – Friday, 10am – 5pm.

Best wishes

Annie

Ovacome support

[Rosado22 in reply to OvacomeSupport]

Am glad to hear of support via Zoom and have noted the details. Thanks 😊

[Rosado22]

Am sorry to hear about your daughter. You def instinctively did the right thing getting the scan. We wished we had got a private consultation as it was difficult trying to get appointments …. Due to current pandemic