Mucinous ovarian cancer

[Golden01]

Hello, in December 2023 I was diagnosed with stage 1c2 ovarian cancer after having an op to remove my ovary and fallopian tube due to a large cyst. The cancer I had was a mucinous cancer, has anyone else had that type? I've recently had my 3 month review and blood test results. Thankfully my CA125 and CEA levels are normal. I'm obviously relieved as I've not been able to sleep thinking about it and worrying. I guess I'd like reassurance that it does get easier? The worry that it will come back is always there, I wish I could switch it off!

[Jholly4]

Hi golden01 I was diagnosed with mucinous oc last may stage 1c3 as my cust leaked in the weeks upto my surgery. Although this type is rare, if caught early I believe outlook is good as surgery is effective. I didn't opt for chemo as stage c3 as little evidence that works well for mucinous and have just had my 9 month check with stable bloods still. Hope you are recovering well from the op.

[Golden01 in reply to Jholly4]

Thank you Jholly4. That's great news your bloods are still stable. I was really lucky to have recovered very quickly from my op. I was out of hospital the day after and back to work 2 weeks later. Which in hindsight might've been too soon 😕 wishing you all the best

[Jennifer1959]

Hello Golden - sorry you have had to go through this. I am a fellow MOC person (1C - due to tumour rupturing prior to surgery). Oddly enough - I am reading your post on 22nd Feb - which is the day this time last year that my GP rang and advised me of the outcome of my scan. She told me that I was being referred on the 2 week urgent pathway. I had my surgery on 28th March and since then - clear scans. I was offered chemo but advised that MOC has a poor response to it but I decided to have it anyway. To be honest - when I look back, I just went with whatever was suggested as I felt so terrified all of the time! It was a horrible time. I totally hear you about recurrence and I use lots of positive thinking to overcome that. I think what helps me - is staying in the present. I make sure that I don't think ahead - unless it is something nice but putting a work meeting in my diary yesterday - I thought, oh that is my next review date ..... so I suppose it never really goes away as we are being monitored. If you search mucinous in here - there are quite a few posts. There is also a mucinous group on Facebook in which you can connect with others. x

[Golden01 in reply to Jennifer1959]

Thank you for sharing your experience Jennifer1959. That's great your scans have been clear. I wasn't sure whether to have chemo or not. In the end I decided not to. The decision was completely left up to me and to be honest that was the worst! I just wanted someone to tell me what to do as my head was all over the place. It's something I often think about and wonder if I made the right decision. It's an impossible decision to make.You're right, staying in the present and looking forward to the nice things in life helps 😊 I'll check out the Facebook group. Thank you for recommending

[Jennifer1959 in reply to Golden01]

I was nodding away in agreement at your point about wanting others to make the decision for you. I think the more I read about this, the more I see other ladies with this who have not had chemo - and some that have. There is a lady on here who is very knowledgeable about MOC as well - if you put mucinous in the search bar - you will find others and some very positive stories. x

[Bandung]

Hi Golden01, I hope you recovering well from the opr. I was diagnosed with borderline mucinuous cystadenoma stage 1C2 after having major operation in 2023 to remove both of my ovaries, both of fallopian tubes, uterus, peritoneum, some bowel tissues and cervix. A week prior to surgery, went rush to A&E with the chronic pain due to tumour rupturing prior to surgery, my cyst was very large, its 25.50 cm. I had intravenous morphine to reduce the pain, intravenous anti-sickness & injections to help with my continuous vomiting prior the opr. My cyst with tumour was 15.5 lbs/pounds or 7 kg, which was the same weight with 2 newborn babies. My CA125, CA199, and CEA results both prior and after the surgery always normal. 5 months after the opr..I got enlarge lymph node, it showed on first CT scan, then the following 3 months on second CT scan result is back to normal.. thankfully.

My pelvis pain after the opr hasn't gone away unfortunately due to adhesions inside my abdomen, so they booked me in to pain clinic specialist next month.

I start HRT recently because I have zero hormon after the opr.

Glad to know that you are convalescing well with no more pain after your surgery.

[Golden01 in reply to Bandung]

Hi Bandung, goodness that sounds like a huge operation and equally huge cyst! That must've been so uncomfortable for you. Glad your CT scan is back to normal. It's such a relief to get a clear result.Sorry to hear you still have pelvis pain. Hopefully the specialist can help manage the pain.

I had my right ovary and fallopian tube removed this time but several years ago I had an operation to remove an ovarian cyst from my left side which caused some damage. This has resulted in me going into early menopause. Not great at 38 years old but thankfully I already have two daughters.

How are you finding HRT?

[Bandung in reply to Golden01]

Hi Golden01, you're right, I went through a huge operation with giant cyst. Thank you for you thought, I hope that pain specialist will able to help 🙏. Oh..your ovaries was removed at two different times with 2 separate opr. I'm pleased to know that you already have two lovely daughter before you went through early menopause, at that young age.

My oncologist referred me to gynae-menopause specialist at different hospital. Its 5 months on the waiting list before I got gynae-meno doctor appointment. They didn't recommend me to take HRT at beginning, because cancer heredity risk of my direct family, they recommend me to take non-hormonal supplements.

Then I discussed gynae-meno outcome letter with GP, and she offered me to try HRT patch at the lowest dose for the start. If it doesn't work then will increase the dose of HRT. I agree to try this, and my GP needs to get approval from my oncologist to prescribe HRT. After the oncologist approval, the next two weeks I received HRT patch (Evorel 25).

will see.. and hope I will get my energy back soon. I'm still feeling fatigue at this moment.

I hope everything is okay with you. I think you found the right HRT so far 😘🙏.

[Petrolhead]

Hi

Another here with mOC. 1C1. As said before by others put a search for mucinous and many of my previous posts will come up. Or search members names as mine is Petrolhead and my posts will come up. I was diagnosed in 2016 started treatment in 2017 (my choice). Still being monitored. I realise that treatments have progressed since mine but there is still some relevance to my posts. The prognosis for stage 1 is excellent. Very little in the medical literature even now ( I still keep an eye on it) because it is rare and acts like bowel cancer.

Also try the American forum Inspire. Although mainly American there is some interesting information re mucinous.

Also when you find my profile look at my replies to posts. Some information in those replies as well.

Thinking of you

Best wishes

Fay

[Golden01 in reply to Petrolhead]

Thank you Fay, I'll check out your previous posts!