Mucinous Ovarian Cancer at 29

Hi Green Orchard, welcome and I hope you find the forum useful! I’ve just joined myself and I’m getting to grips with it all.

I’m 25 and had a very similar experience to yourself. They also didn’t pick up that my ovarian mass was cancerous (Mucinous the same as yourself) until after my surgery. 

I understand how you feel not being able to help around the house but this is a moment in time you need to take time out for yourself, and once you’ve recovered you can get back to that. For a while I just wanted something to hold on and around my belly because I worried about the scar tearing, but honestly it does get better slowly but surely. I hope people have offered to help you and your little one whilst you recover and have support with that. 

I’m so pleased to hear they think they’ve got everything and you don’t need any further treatment that’s great news! Did they do a post op CT/MRI scan to make sure? I had to push for mine. There is always that worry it could have been worse but your so lucky it wasn’t! And now you should be scanned more frequently and if anything does reoccur they will know a lot sooner and can act faster . 

I would always remind them that your blood results previously didn’t show anything because that should prompt them to scan you more often too. I do wonder if that’s common for this type of ovarian cancer because they didn’t pick it up on my blood tests either… they thought it was a little high but told me it was nothing to worry about.

What you’ve been through is a big thing and it’s going to take time to process what’s happened, because I’m still processing it all as well please don’t feel like your on your own. Grief is how I feel, knowing your body won’t be the same again but you should also be really proud of your body for getting you this far .

I find talking to people about it helps me come to terms with what’s happened. I keep a diary too, I feel better when I write down how I’m feeling and sometimes read it back to see how far I’ve come. 

I hope I’ve helped even if it’s just to let you know your not alone and I’m sending you a big hug! 

I wish you a speedy recovery and all the best. 

Lots of love, Ruby Roo x x x

Thank you for taking the time to read and reply - it's really helpful to hear from someone who's been in a similar situation. 

Do you mind me asking if yours was also removed completely during surgery? Did you have fertility sparing surgery? And did they do various biopsies during the surgery (for me they removed my appendix, and took biopsies of omentum and peritoneal washings)?

I haven't had any further scans - I'm still waiting for confirmation this week that I don't need any further treatment as it's going to the regional meeting for review. Would they be able to pick up anything on the scan that they didn't as part of the biopsies?

Have you had any check ups yet? The consultant has told me roughly what will happen but I think I'll feel better after I've had my first in January and know what to expect. 

Please feel free to ignore any of my questions if you'd prefer to!

I hope you are also healing and recovering well. X

For me, I had a 25cm mass that was within my left ovary which couldn’t be saved so I had that removed and the fallopian tube. They also removed my appendix - though they said it looked fine they removed it anyway. They did take various biopsies one being from the fat around the bladder and others that I can’t remember sorry! The mass had leaked and they took washings from the leakage. My biopsies from various other places came back fine and so did the washings from the leakage but because it had leaked they couldn’t guarantee the cancer cells hadn’t gone anywhere else so I’m currently undergoing a course of chemotherapy.

Once I knew I was going to have chemotherapy I did have fertility treatment because I haven’t had my family yet. But from this I found out a lot about my womb and the right ovary I have left. They mentioned to me that if I’d had my family and was older they would have removed everything as a precaution. But once I’ve had my family they have told me to have a full hysterectomy. 

I’ve had one CT scan since my surgery which took place after my fertility treatment, they thought it looked ok with no sign of disease and what they called ‘post surgical changes’. Which they couldn’t say for certain nothing was there but I’m having a further scan after my treatment. I’ve also done a few Google searches but I thought I read somewhere that Mucinous usually keeps itself contained within the mass which reassured me slightly. Have they said how regularly you’ll have check ups?

I’m no medical professional so I wouldn’t like to say if they would be able to pick up anything on the scan that wasn’t part of the biopsies - but I would like to think so! If they think something isn’t quite right I would ask for further investigation to give yourself peace of mind. 

All the best, 

Ruby Roo x x x

I'm sorry you're having to go through all this - it must be really tough. How are you coping with all the treatment?

I'm supposed to have checkups every 4 months for 2 years then every 6 months after that. 

I already have a little girl (18 months) and we were trying for our second when I started having symptoms. The whole experience has put me on edge though and made me question whether that's still the right thing to do - but they've told me not to consider trying for at least 6 months so I've got time to work through all that. There's never a good time to have cancer but it adds a different set of emotions when your future family is involved. 

X

Treatment is going ok so far thank you. I’ve had 2 out of the 6 chemotherapy sessions, no sickness but I do get very very tired. I’m also lucky that I’ve not lost my hair it’s just thinned slightly. 

They’ve said to me every 3 months a follow up but keep the pressure on them to follow up with you regularly! 

You are so lucky to have your little girl before your diagnosis and wish you the best for whatever you decide for the future. Like you say, you’ve got some time to think about it. You’re right it does add extra emotions thinking about family especially at our age. 

I just try and take it each day at a time for now 

x x x

I hope it continues to go okay for you ️

If you ever want to chat or vent more on here let me know. 

Wishing you a speedy recovery. 

X

Aw thank you! The same goes for you, always happy to chat. 

Hope the review meeting goes okay 

x

Hi, I had MOC in 2018. surgery and chemo (only 1 round though as my kidneys were at risk of failure). 

On the blood tests request that CEA, CA-19 are tested, as well as CA-125.  This is not standard ovarian cancer so CA-125 is not the most reliable marker.

There is a lot less chance of recurrence if the tumour was removed undamaged, no spillage.

Keep an eye out on your calcium and Vitamin D as these can help to keep bones healthy.  Surgical menopause, not having ovaries, or sufficient hormones, heightens the risk of decreased bone density, osteoporosis etc.  You probably won't be offered HRT due to the type of cancer.  

Wishing you all the best with everything.

Cx