Mucinous ovarian cancer

Hi and a very warm welcome to the online community

I'm sorry to read that you've recently been diagnosed with mucinous ovarian cancer and that you're unique in your country in that you're the first person to have been diagnosed with this.

I don't have any experience to share with you but I noticed that your post hadn't had any replies yet. That could be because you've said it's a rare form of ovarian cancer and there may not be many people here who have it. You could use the search bar in the group and type in 'mucinous' to search for previous posts which mention it, have a read through them and respond to any of the more recent ones if you think the poster might be able to help you further.

You say that you are confused and I wondered if you could tell us what you're confused about and someone might be able to help further.

When you have a minute, it would be really useful if you could pop something about your journey so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

x

Hi, Memo

how are you feeling? 
Just wondering what stage they put you for ovarian mucinous carcinoma and were you offered any chemo at last . 
I was diagnosed with ovarian mucinous carcinoma stage 1c3 last month and at the moment got a second meeting with doctor to do for chemo and sparing approach or have full hysterectomy and chemo after. They told me I will have chemo because my cancerous cyst was raptured few times and the washing from abdomen cytology was positive as well . I have not decided yet as operation or chemo first as have lots of questions about this type and want to see the oncologist and ask what chemo they offer considering it does not kill this type of cancer 

i wonder what country you are talking about , you are the first case 

Hello all

This is my first post.

I know this is an old thread but wondering if the posters are still active.

I have been diagnosed with 1c3 Mucinous Ovarian Cancer after having a 19cm tumour removed as an emergency on 30th December.

Hysterectomy scheduled for 2nd March followed by Chemo. 

Looking for anyone who also has experience of Mucinous as very little info is there.

Thanks, Lisa

Hi, Lisa 

I have been done full hysterectomy and and after that   I have been offered not to do chemo as they have not found bad cells after hysterectomy operation. So my oncologist has offered to wait and watch. I have done 2 scans and bloods so far with 6 months gap . All was good so far , fingers crossed. So when I have had my last bloods a month ago and all was normal my oncologist has told we are going to do bloods now once a year . 
After full hysterectomy operation I have put on too much weight on and trying now to live with menopause as I have decided not to go for HRT . 

Otgerwise , all good so far , of course, it’s always on mind but trying to live on and not to think about that . Also I am glad I have been offered an option not to go for chemo as it’s a lot info that this type is more chemo resistant and it would damage more my other organs and health. 
Any questions feel free to ask .

Hi all

I also have stage 1 c3 mucinous cancer. Diagnosed in December 2021, following an operation to remove a rugby ball sized cyst, my appendix and omentum, also a hysterectomy. I'm 47 years old, and undergoing chemotherapy which I'm having hellish side effects and some days struggle to walk. 

On top of this today I was diagnosed with skin cancer and been referred for genetic testing as the consultants think I may have Lynch syndrome. 

Has anyone heard of this? 

Hi Zhazi

Thanks for replying and sorry to hear what you've been through.

I've been advised to have chemo as the tumour had ruptured. I understand your reticence though. Do what feels right for you and your circumstances.

X

Hi Chaz7. So sorry to hear you're struggling with chemo. Hopefully the medical folk can help mitigate symptoms. Have you spoken with them?

Similar timescales to me then, only my surgery has been split over two ops.

I'm 44 and married. Thankfully we've had our family so the hysterectomy side doesn't worry me too much. It's the side effects from that and the chemo that I'm more anxious about.

Are you UK based? I'm keen to know what chemo meds are being recommended for MOC as I read that some recommend gastro meds rather than standard ovarian ones

Hi 

I am based in Lincolnshire and 47 years old, with a daughter who is 30 and a granddaughter nearly 6. 

Thats it for having kids, apart from a step daughter snd son I have.

I have spoken to oncology nurses following chemo sessions who have suggested drink more water. I can't drink anymore I'll drown

For chemo for MOC I'm on Carboplatin and taxol ( think its called that) every 3 weeks. 

I know its not much help, but most hysterectomy are done through key hole, just i had to be cut from sternum to pubic bone due to size of cyst, I'm still recovering from this. .try to keep positive xx

Oh bless you. Hope the symptoms improve.

I'm in the Midlands and my children are 13, 9 and 8.

My first surgery was belly button to public bone due to size of the cyst. My surgeon has said the next one will be to the sternum though.

Im not too worried about that as I don't exactly have the physique for bikinis. I am a bit worried about how quickly I'll bounce back from the surgery with a much larger scar.

My surgeon is saying 6 weeks recovery before chemo.

Definitely wanting to stay positive. I've basically handed everything over at work now, having been back for 4 weeks, and spending time doing things with the kids/dogs whilst I'm feeling well. 

Book and Netflix recommendations gratefully received too

Hi

I'm a teacher in an adult college and had to hand all my students and companies I've worked with over. Which felt awful doing. .I'm off work til June and missing the office banter.

I'm reading loads of books and watching netflix. 

Depends on what you like. I love crime dramas etc .

Virgin River 

The Sinner

The crown 

Anything by Harlan Coben. 

Speak soon Charlie 

Where abouts in midlands are you

Feel free to chat anytime