Mucinous Ovarian Tumour

[Nanyuki]

Hi. I recently had a total hysterectomy following a scan showing an ovarian cyst. The report showed stage 1a mucinous ovarian tumour on my left ovary. I had subsequently had blood tests - CA125, CA19-9, liver, kidneys and full blood count, all of which were normal. I now have conflicting advice from oncologists, with one sayin I need a course of chemotherapy and the other saying no need for chemotherapy, just regular blood tests. Who do I believe? Grateful for any advice, as I'm totally confused!

[Trickysite]

it rather depends on how expert you feel these oncologists are. If neither are high flyers in the OC world, I might be inclined to go for a 3rd opinion from someone who is E.g,Prof Jayson or Christina Fotopolou. It is scarcely a decision you can make yourself. Unless your gut feeling is really sure. Emma x

[Mund2121]

I had a borderline mucinous tumour stage 1C removed in December 2019. Some of the MDT recommended chemotherapy as a belts and braces approach as they had to rupture my tumour prior to removal, however some advised against it.

I decided to proceed and had one session of chemotherapy. This was abruptly stopped due to lockdown 3 days later. I did some more research , it appears chemotherapy is not particularly effective for mucinous. I then had a second opinion from Dr Susanna Banerjee at the Royal Marsden hospital . She did not recommend any further chemotherapy and in my case would not have advised it in the first place.

There are a lot of posts on this site which will provide a lot of information to help you make the right decision for you.

Amanda

[Nanyuki in reply to Mund2121]

Thanks so much for taking the time to reply. I am trying to contact Dr Banerjee as I've read a lot of positive things about her. Do you have a contact for her? xx

[Mund2121 in reply to Nanyuki]

Hi, sorry I do not have a contact for her but if you go onto the royal Marsden website there should be something on there . I would definitely try and see/speak to her if you can. Take a look at the American Inspire website too , it is very informative .

[Nanyuki in reply to Mund2121]

Thanks very much. Your feedback is really appreciated. I've made contact with Royal Marsden, so fingers crossed. I guess you haven't had a problem since 2019? Do you still have regular check-ups?

[Mund2121 in reply to Nanyuki]

That’s great, please let me know how you get on. Thankfully I haven’t had a problem since . Dr Banerjee referred me to the care of Mr John Butler at the Royal Marsden. I see him twice a year and have gone from 2 scans a year to 1 a year, in fact I had an MRI and CT scan on the 13th April. Due to the nature of mucinous I suspect I will be under his care for 10 years. I have tumour markers ( CA125, CA19-9 & CEA) done when I see him but I also ask my GP to do them as well about a month or so before I go .

[Caroles1]

I had mucinous 1c in 2014 and had 6 months chemo after de baulking, because of ascites.My oncologist wanted to kick it into touch and achieved that.I am still here not on any medication and🤞🏻no reoccurrence so far.I would take whatever you are given

Take care xx

[CrazySpaniel]

Hi Nanyuki,

I am recovering from a total hystrectomy 2 weeks ago. Following abdominal surgery to remove a tumour 6 weeks previous. Consultant "thinks" it's 1C Mucinous. My CA125 was in normal range prior to any surgery. I am awaiting biopsy results and to see what the final staging is and if there is further treatment to be done. Personally, I feel if chemeotherapy is offered, I will take it. Mainly because the tumour ruptured on removal and had 6 weeks in which the mucinous cells may have spread. However, you just don't know until you are in that situation how you will feel.

Don't know if this is helpful or not. I just wanted to share with you and wish you the very best in whatever decision you make. Xxx

[Caroles1]

Take the chemo if it’s offered, I did 6 months of it, it is hard, lost my hair, but Iam still here 9 years later, just feel it cleans up particularly as I had ascites.

Good luck xx

[Caroles1]

Would be the same reply to you as to crazyspaniel, kick it into touch and get on with life, it will take a couple of years to stop thinking about cancer and every little ache and pain may be a re accurance, but I very rarely think about it now. Having5 grandkids in the last 10 years helps😂😂

[Desertrose62]

hello there, I’m also stage 1a and it’s been 2.5 years since my staging laparotomy. I had blood tests and ultra sounds every 6 months for two years and I’m now on annual appts.

The rule of thumb with MOC is that you save chemo till (if) it’s needed in future as it doesn’t respond very well to chemo and giving you a course of it now would be one less course they coukd give you in future if it came back.

And just to add that I live in the Middle East and the protocol they follow here is no chemo unless a person is diagnosed at stage 1c and above from the outset. It seems to be the standard world wide approach to things except in the states where they appear to give chemo even at stage 1a.

And I think if memory serves me well that even here at Ovacome it states on the information page - surgery is generally the only treatment needed at stage 1a.

[OvacomeSupport Partner My Ovacome Team]

Hello Nanyuki

As Desertrose62 mentioned, we have information on mucinous ovarian cancer on our website here: ovacome.org.uk/mucinous-ova... We can also send you paper copy if you prefer.

You mentioned you have already made contact with The Royal Marsden, but in case it's useful I just wanted to mention our information on second opinions too, which is on this forum here: healthunlocked.com/ovacome/...

If there is any further information you need or anything you want to talk through, please do get in touch with us by direct message through this forum, email [e-mail] or call 0800 008 7054 Monday-Friday 10am-5pm.

Best wishes

Anna

Ovacome Support

[Jholly4]

I had cytoreductive surgery for stage 1C3 mucinous left ovary 5 weeks ago and it had ruptured with large ascites a couple of months before the surgery so have found myself in the same predicament as you. I was initially advised I would have adjuvant chemo but when I met my oncologist last week she mirrored what you and others have described, that as MOC doesn't respond well to chemo she felt the risks of chemo effects outweighed the benefit based on the known evidence currently. It feels like a bit of a lottery with this rare type. She is monitoring CA125 and CEA 3 monthly for 2 years then 6 monthly until 5yrs out. I had hoped she would do a post op scan to check all the fluid and inflammation resolves but nothing planned currently. I have started getting menopause symptoms this week but advised not to have HRT which is a bummer. How long did it take you to recover from the op?

[Heart888]

I have just had exactly the same surgery was in October. I was told it was 1a no need for chemo it was contained in a 10kg mass cyst/ tumour no signs of anything anywhere else they also removed my appendix.

I have read it unusual for the ovary to me the primary site and is usually the secondary from say the stomach but I was told that it was contained in the mass. The fluid came back clear and I had ultrasound mri and ct scans I’m 39.

[Jholly4 in reply to Heart888]

Hi heart888 hope you are recovering well but taking it easy as it's still early days for you. I have just had 6 month blood checks and tumour markers are still normal. I have had an issue with liver bloods which they can't find a cause for so have a CT next week to explore that further but so far the ultrasound and an mri of gallbladder and liver area look fine so I think it's just my system taking time to recover back to normal after the op in May. Its easy to try and rush things as the weeks pass so be careful and give your core muscles time to recover, even the gentle exercises they gave you post op can some days feel like a full workout so be kind to yourself.

[Heart888 in reply to Jholly4]

Hi

Yes I’m still off work I plan to go back after a full 12 weeks as on my feet all day. I may reduce my hours at first and see how it goes. I seem to be recovering ok at the moment, each week I see improvements. I am getting out and about now which is nice.

I have my first three month check in feb I’m not sure what this involves I’m in England with the Oxford Churchill hospital. Age 39

I was offered no chemo as everything was contained in the mass a 1a.

I have had a few menopause symptoms forgetting what I’m saying or doing, get hot at night. I was given APRIL for a referral to the hospital clinic for hrt which I was told I should go on due to age and bones?

I have spoken to my nurse to see if this appointment can be moved forward. My surgery was October.

Why were you advised not to have hrt?

[Jholly4 in reply to Heart888]

I had hoped to be back at work by the summer following my op in may, but had a couple of hiccups in my plan due to liver function issues and abdo pains so ended up off until September, thankfully am back fulltime now though. My oncologist ( I am UK cambridgeshire area) advised against HRT as ovarian is often oestrogen driven ( as far as I know mine was never analysed to determine this so just an assumption based om experience) so she felt I should manage without HRT although for those ladies who are younger ( I am 52) they do get HRT recommended despite the OC to reduce the risks from early menopause so it seems we are as advised on a personal risk basis. I am managing ok with the brain fog by making lists and writing notes to remind myself ( have also been very upfront with work colleagues so they know to chase me if I don't respond to emails in a timeframe they would expect) and have a system to help manage the flushes although I go from hot to cold in minutes. For me the joint aches from the sudden drop in hormone is the thing that affects me most.