New mucinous OC diagnosis

[Gardeningartist]

This is my first post on here. I've recently been diagnosed as Stage 2a Grade 1 mucinous OC following optimum debulking surgery. I'm struggling to find much information on this rare type and information about where the expertise and current thinking is in the UK. My surgeon was very confident he had removed all the cancer and I'm seeing an oncologist in a couple of weeks but having been advised this is not very responsive to chemo am looking to see how other sufferers have fared and the approaches they've adopted. I found some trial info from the US (I think) suggesting that the 'watch and monitor' approach could have equal outcomes to chemo. Thank you x

[NotThatGirl]

Hi Gardeningartist,

A couple of links that may help answer some of your questions:

ESMO–ESGO consensus conference recommendations on ovarian cancer: pathology and molecular biology, early and advanced stages, borderline tumours and recurrent disease - ijgc.bmj.com/content/29/4/728

Mucinous Cancer of the Ovary: Overview and Current Status - ncbi.nlm.nih.gov/pmc/articl...

Hopefully some members with mucinous OC will come by and share their experiences, too.

[Gardeningartist in reply to NotThatGirl]

Thank you x

[SASSY196]

I'm so sorry I can't help but wishing you all the best, Sara xxx

[Gardeningartist in reply to SASSY196]

Thank you for your good wishes x

[OvacomeSupport Partner My Ovacome Team]

Hi there gardeningartist

Thank you for your post and for sharing your experience. I can see you have had some informative and supportive replies from other forum members, but just wanted to share the Ovacome information booklet on mucinous ovarian cancer which I hope may be helpful for you: ovacome.org.uk/mucinous-ova...

I also wanted to let you know about our a rarer cancers support group. The group meets virtually on the second Thursday of each month between 2:00-3:30pm, providing a safe space to meet others with a diagnosis of a rarer ovarian cancer, ask questions and share experiences in a friendly and supportive environment. For more information about the group and details on how to sign up, please visit this page on our website: ovacome.org.uk/event/rarer-... - You would be very welcome to join us.

Please don’t hesitate to get in touch if you have any questions about this information. If you would like to talk directly to a member of our support team, please call our support line on 0800 008 7054 or 07503 682311. We're open Monday - Friday, 10am - 5pm. We’re happy to chat, even if you don’t have a specific question.

Best wishes

Annie

Ovacome support

[Gardeningartist in reply to OvacomeSupport]

Thank you for your helpful suggestions. Have downloaded the information booklet and look forward to joining the group x

[Leeloo1121]

Hi! I was diagnosed with 1a high grade MOC last September. I had a total hyster (plus appendectomy and pelvic node resection). My oncologist strongly suggested platinum based chemo because of the high grade, but I wasn’t really informed about its low response rate, I found that on my own through research. I did do 6 rounds of chemo and finished this January and so far no reoccurrence. I don’t really have advice for you, I just wanted to reach out because it’s hard when you have a rare cancer that doesn’t really fit with the others. I am also 41, so younger than typical OC patients. I will say that while yes good to be informed, DO NOT GO DOWN THE RABBIT HOLE and read too many articles. I made that mistake and I was always sorry I did. Informed is good, scared to death Bc I read case studies that were not reflective of my specific diagnosis is bad. Don’t hesitate to reach out if you need someone to talk to!

[Gardeningartist]

Thanks very much for taking the time to reply and really appreciate your advice. Interestingly it was the surgeon who raised the chemo low response rate but totally agree with you about taking care with what you read. Wishing you well with your ongoing recovery and happy to reciprocate if you need someone to talk to x

[Caroles1]

Hi,I’m not on here often anymore, but I am a mucinous 1c, still here after de baulking and 6 months carbo Taxol , no re occurance after 7 years.

Carole

[Gardeningartist in reply to Caroles1]

Hi Carole, thanks very much for taking the time to reply, it is encouraging to hear of your progress. Have now seen the oncologist and will be starting a course of Carboplatin shortly. Thanks again x

[Caroles1 in reply to Gardeningartist]

All the best to you xx

[londoner0]

Hey Gardeningartist, I don’t come here much but we’re rare mucinous so I thought I’d reply albeit late!

There’s an active mucinous community I can direct you to, if you direct message me. I’ve also looked into a few researchers and who is funding them, if you want to connect about research efforts too.

I was diagnosed Stage 2B low grade mucinous in August 2020 aged 30. Had the full-everything debulking surgery in October 2020 then did 6 cycles of Carbo/Taxol until April / May 2021. I have the 1 year scan in April but been NED so far. Fingers fingers crossed it stays that way!

You should also search for petrolhead’s posts as she is a mucinous lady too, and always replies with lots of informative posts.

X

[Gardeningartist in reply to londoner0]

Hi londoner0Thanks very much for getting in touch, I really appreciate it and good to meet another mucinous lady. I've seen petrolhead's posts and agree they're very informative.

I'll DM you for the other details.

Jo x

[Frankie1405]

Hi, sorry to use an older post, but I’m new on here and not really figured out how everything works yet! I was diagnosed with mOC on July 26th this year, after scans to confirm it wasn’t actually primary to the bowel, I had a full robotic hysterectomy/appendectomy 2 weeks ago, currently recovering well and awaiting my results and further treatment plan. Currently graded 1C pending results, and told it would likely have been 1A, however, when my seemingly innocent cyst was removed in June, it was bagged and burst (in bag) for removal, so arrived at the lab in a burst state. So automatically becomes a C. Jury currently out on whether they would wish to do chemo (they are obviously awaiting results) but so far I’ve been told they won’t, but then that they might as a “belt and braces” approach even if the results are clean. Obviously if the results show anything, that will dictate a little more what happens. So I’m now trying to learn as much as I can about what my choices might be and which way to go, should they suggest chemo as a mop up.

Having read your thread, I was wondering how you were getting on? Xx

[Gardeningartist in reply to Frankie1405]

Hi Frankie

Thanks for getting in touch. I'm a year ahead of you in terms of diagnosis as well as being about 20 years older. Like you I've always tried to stay fit - my husband and I are keen walkers and I think that's helped a lot with my recovery. Am back doing 12 mile walks and feeling fit and well. Hopefully that will continue but I wasn't sure about chemo at first. I just wanted time to come to terms with the surgery and diagnosis but my oncologist made clear that delaying wasn't really an option. I had carboplatin only so as a consequence didn't lose my hair (taxol the other drug usually given is the one that causes hair loss). It sounds vain but keeping my hair definitely helped me psychologically. Chemo was unpleasant and I suffered with sickness but the anti sickness drugs were increased and my last 4 of 6 treatments were sickness free. I had a little bit of tiredness but none of the other side effects. Carbo only also means treatment sessions are quick - 1.5 hours or so. Looking back I'm pleased I had chemo as I feel I've done all I could to sweep up any odd cells that may be lurking. I think also that you have to have had chemo to be eligible for any future trials. My oncologist was optimistic - MOC patients can have a good prognosis. I'm on 3 monthly checks for the next 2 years and whilst I get a bit stressed around that time, for the most part I try to forget about it and get on with living well. Hope all that helps and apologies for the lengthy reply! Hoping you continue to recover well but please ask if you have any other questions. Jo x

[Frankie1405 in reply to Gardeningartist]

Thank you for that.

I think I’d like to know more about “typical” chemo treatments so I am making an informed choice if it’s put to me. I feel a little like you….initially when they told me if my results were clear, I wouldn’t need chemo, I was thrilled (assuming the result went that way) but now they have thrown in that they may still suggest it in any case, I feel a bit thrown….I’m not sure how I’d feel now if they say they’re not going to use chemo….like we may get missing an opportunity and I might regret it, but equally scared to face the chemo.

I guess for now I should try not to jump the gun or delve too deep until I know what they think and suggest.

I’m glad so far things are going well for you.

Vicki Xx

[Gardeningartist in reply to Frankie1405]

Hi Vicki

Standard first line treatment seems to be Carboplatin given with Taxol and I have read about MOC ladies given both. Taxol can cause more side effects e.g neuropathy as well as hair loss. I was happy my oncologist prescribed carboplatin only as it seemed a good compromise - I got the benefits of chemo but with reduced overall toxicity. I think I may have read somewhere that carbo only is protocol for early stage MOC but can't remember where.

The thought of chemo is scary but you quickly get into a routine and there's lots of support and good drugs to help with any side effects. I found I was drained on day 1 and couldn't sleep, a bit tired days 2 and 3 but apart from that fine. My biggest worry was the risk of infection (I do a lot of gardening and have a cat) while my immune system was being hammered but you just have to be a bit more careful to avoid cuts and scratches.

Hoping you get the info you need soon to make your decision. Please let me know how you get on.

Jo x

[Frankie1405 in reply to Gardeningartist]

Thank you again and I will Xx