Monitoring- mucinous and other types

Hi Guys

First of all - thanks for all the information that is shared. All the bits add up to a wealth of knowledge which is so useful when you have meetings with the medical profession.

Although my first post after lurking for a bit I will contribute more when I feel I have something useful to add. Still on the upward learning curve at the moment.

Anyway, having had the first consult with the oncologist and having tried to discuss monitoring I wondered what monitoring other people were offered.

As I am 1C1 mucinous she said to me that no specific monitoring but they would act if I got any symptoms. However, as I did not have any symptoms in the first place I find this a bit scary. She said just because I did not have symptoms this time it did not mean I would not have symptoms next time. All a bit too vague for me.

As CA125 does not get raised in mucinous I had to press for a CEA test.

Anyway enough about me, what do others get in terms of monitoring.



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29 Replies

  • Hi Fay ... something very similar to you but in addition I am having 3 monthly checks on ca125... I like you an scated because the symptoms I had did not really manifest until I had diagnosis so if it recurred hoe will I know where will it recur as I have nothing left etc these questions I could never get a definitive answer too... I was told if it comes back we will treat it... I am also 1c1 but clear cell... not sure what cea test is ?? ... it dies see as you say to be vague 😳

  • Hi Shellygirl- thanks for the reply. Three monthly checks seem to be the way to go. The CEA test is the - carcinogen embryonic antigen test. It is elevated in 88% of mucinous tumours but not very often in others so probably not useful for you. As you say you feel a bit vulnerable if you just have to wait for symptoms which you never had in the first place! Hope all monitoring goes well for you.


  • Hi, My wife has the same stage 1C mucinous. We get CA-125, CA 19-9, HE4 scans every 3 months. Her CA-125 is 8, but CA 19-9 is on borderline 35.

    She also undergoes ultrasound scan every 3 months.

  • That is useful info. I had to push for the CEA test let alone others. When I asked re what other biomarkers they looked at she indicated none really. I had also researched the CA19-9 and the HE4. I think I will get these added if others are having them. I like the sound of a regular ultrasound as well. Thanks for the reply it gives me something to work with. Very best wishes to you and your wife and hope all monitoring is favourable to you.


  • Can I ask Engharsh, are you in the UK? Just curious about the HE4... Sx

  • Hi Fay,

    I also had a 1C mucinous removed just over 4 years ago (am NED) and like you had not had noticeable symptoms and didn't have a raised ca125.

    I had 3 monthly check ups for the first 2years and now 6monthly and my onc does choose to do both ca125 and ca19-9 though acknowledges the possible limitations. He does a physical exam (including internal) and then asks how I am etc etc there are a series of specific areas they focus on... There have been a couple of times when there's been something that didn't quite feel right to me (I had some pain with adhesions at one point) and he ordered scans (either ultra-sound and/or CT ) straight away, which have all been clear...

    After a couple of follow-ups, I felt much more reassured about the process...

    Very best wishes, Sx

  • Hi Sunfleury

    Pleased you are NED. Hope to join the club. Will definitely look into the CA19-9 test. When I researched the HER 4 test is not licensed in the U.K. to predict. I have asked for a second opinion with Prof Gore at the Royal Marsden. A new batch of questions now ready!


  • Yes, I've had similar discussions about HE-4 with my consultant (am at The Christie in Mcr).... It's used in US & parts of Europe (I think). Would you stay in touch, I'd be really interested to hear what Prof. Gore says...? One thing that might be worth asking (if you haven't already is if histology has confirmed the specific nature of your mucinous cells- it seems there is growing knowledge and also ask if has been tested for K-Ras mutation.... ) Sx

  • Gosh that was a quick rely! Will certainly update as and when. I think we are all thirsty for knowledge. The indications are that it is primary due to size of cyst and that it was only on one ovary. However, have been in touch with another lady who has seen Gore and he sent a tissue sample to a specialist histology test to confirm that it is primary. My onc did not mention or offer this. Rather important I think.

    Curious to see if anyone has an MRI scan as well. My onc said she could tell stuff better from CT scan. Not sure if this was because it is cheaper.....

    The pet scan not much good for mucinous but nice to know the truth on the MRI scan.

    Good to exchange info.


  • Am sat with coffee and iPad whilst putting off doing house-tidying!! ;-)

    I had MRI along with CT before my op but haven't had one since... The one thing I have learned along the way is that an ultra-sound scan done by a consultant radiologist can be incredibly useful with remarkable detail!!

    Very best wishes Sxx

    (Really must stop procrastinating!!)

  • HE4 and CA 19-9 can be useful markers for mucinous types. My wife's HE4 was 150 (double the limit) which led us to first diagnose ovarian cancer. While her CA-125 was very slightly elevated. I like ultrasound as it has no radiation and can be done quickly. MRI is also without radiation and we would probably get it done once a year and continue with ultrasound once a quarter.

    SunFleury, we are based out of India. There are certain advantages as we can get ultrasound for 25 pounds, HE4 for 30 pounds, MRI for 100 pounds in good clinics privately and no waiting period. There is no NHS kind of support though.

  • Hi Engharsh

    Although the HE4 is not licenced in the U.K. for predicting I might look into having it privately. It would be interesting to look into the prices here as compared to what you are paying. Unfortunately here I do not think that some oncologists are aware the mucinous can or maybe should be treated differently to other OC. The last international trial to compare some treatments was stopped due lact of people being recruited because mucinous not very common. Please keep us posted on how you and your wife get on.

    Best wishes


  • - there is a bit more discussion about mucinous treatments on the US site 'Inspire'- there used to be a group called 'all things mucinous' where different chemo approaches were discussed... I haven't been on there for a few years but imagine it's still searchable- (do be aware that due to the time period and nature of OVCA there will be some sad outcomes)

    My onc was both Gyny and colorectal - for mucinous, colorectal chemo approaches may increasingly be used....


  • Cheers for that. I will have a hunt. Will let the thread know if I find anything useful.

    Regards Fay

  • Gosh this is a fascinating thread (not sure how I missed it being another fellow mucinous & looking at a possible reoccurrence! I'm def mentioning CEA & CA19-9 to my Onc when I see her this Thurs & would also welcome any updates from the Prof you are chatting to Fay! X

  • Hi Mrs Atko

    Looked at the Inspire forum. More stuff to check!

    Waiting for the appt with the Prof. I am meeting in person another moc person who had treatment via the Prof a couple of years ago. She is now Ned. Will post any new info. She was in touch with all sorts of professors in U.K. And USA so should be an interesting meeting.

    Being nosey did you have an MRI scan at all?

  • Thank you - i'll check it out. Good luck with your meeting (both with the Prof and the other moc person) - look forward to hearing if anything interesting comes of it.

    No, i've not had an MRI or CT...first BOT was diagnosed with USS (although I had quite obvious abdominal distention but no other symptoms). I've recently been having 'pains' and so had another USS on Sunday which showed up a new growth on remaining ovary (had the rest removed) but only 2cm but not completely 'simple' looking either! So seeing Onc on Thurs to discuss further. Think i've been told before that USS are best, but may ask about other scans plus these other blood tests because my CA125 at first diagnosis was 7.9 so not an indicator for me (or most mucinous it seems) x

  • Just read the following over on Macmillan's website (hope i'm not breaking any rules here, but interesting based on what we've been discussing above)

    "I had mucinous ovarian cancer stage 1c in October 2014. I had surgery to remove my left ovary and Fallopian tube. The tumour was attached to my left ovary. I was also given 6 cycles of chemo which is usually used for bowel cancer because a mucinous cancer is more similar to that of a gastro intestinal cancer. I was never told that chemotherapy wouldn't respond to this type of cancer. I did a lot of research as spoke to a lot of specialists who did trials in this type of cancer. I had a referral to an expert, Professor Gore in the Royal Marsden who also recommended chemo. In the end we went with bowel chemotherapy - capecitabine and oxaliplatin for 6 cycles and I have been clear ever since!"


  • I had previously thought it was FOLFOX (the chemo) that could be used.... One thing to be aware of is that there are different origins/types of mucinous OVCA tumours which are only confirmed via histology... I imagine this is likely to become relevant when deciding chemo options. The understanding of different types / origins of the various sub-types of OVCA is developing quite rapidly- it's a range of diseases really and so in understanding these better, treatment options can be better individually tailored. This will be the way of the future! Sx

  • Hi Sunfleury

    When you say different origins/types of mucinous are you referring to where the tumour originates from?

    Mine is thought to be primary due to size, on one ovary and cells were expansile (as opposed to infiltrative) This was confirmed by CNS and histology report.

    Are you saying that there are different types of primary mucinous?

    Regards Fay

  • Some (not yours as its been confirmed by histology) may be GI in origin- it's why they check the appendix but now they are able to tell more from histology. I think that within the type (am not an expert) that there can then also be different features (this will also be where more tailored treatments can be better targeted).. I've been to a couple of conferences and when consultants talk about MOCs they've made reference to the fact that a number of MOCs are better understood as not OVCA... Sx

  • That is the lady I am meeting!

    Regards Fay

  • Fay, is there a chance you could edit your original post so that 'mucinous' is a keyword or in the title.... ?? As you know there's not a huge amount of discussion about treatment options etc for MOC and this will help others find the thread... Sx

  • Will try bearing in mind that I am grasping on the edge of technology. Lol

    Originally I was interested in monitoring frequency for any OC but the thread has developed into a mucinous one.

    Regards Fay

  • A bump on this thread as I have been for an appointment at Royal Marsden last week.

    Although the oncologist would not agree to the regime that I wanted (that's for another thread) she did agree on a monitoring regime that I thought would be thorough.

    Monitoring should consist of 3 monthly bloods of

    CA125 ( even though it did not show any rise for me)

    CEA test ( raised in 88% of mucinous OC)

    CA19 (usually tested in GI tumours

    CT scan every 6 months

    Compared to what the local oncologist suggested (i.e. Nothing! ) it seems fairly reassuring.

    I am assuming if all is well then frequencies would reduce after a couple of years.

    I also asked if I were to get a MRI scan privately (as NICE guidelines do not recommend offering one) would she as a HCP be willing to accept the information that it provided. She said not a problem. I did note that she did not say I would be wasting my money.....interesting.

    Will await what the local oncologist will say.


  • Fay - I'm only just catching up with this thread...and your trip to the Royal Marsden. Like you, I feel my local Onc seems to feel ongoing bloods and regular check ups are fairly unimportant. When I saw her at the end of Nov (with suspected reoccurrence after USS showed a new growth...being rescanned end of Feb) I mentioned these additional blood tests (CA19 and CEA) along with another CA-125 but she said they wouldn't be helpful!!! With what i've read, I strongly disagree! I think they would be MOST helpful.

    Can I ask (and this may be for a private message) how did you go about getting your referral to the Royal Marsden and was it with a specific Onc? (i keep hearing about this Prof Gore chap). And did you pay for this referral/appointment? I don't blame you wanting to potentially go private for a MRI and yes, VERY interesting that she didn't say you'd be wasting your money on one either! I feel that I need to wait and see what comes from my next USS and appointment with Onc (to see if i'm actually facing a reoccurrence or not) but either way, i'm not sure i feel that she wants to monitor me as regularly as i'd like, based on all the information and stories that i've heard from other mucinous ladies...I want to be checked regularly damn it! NHS, Private or otherwise!

    Jemima xx

  • Hi Jemima

    As I kept mentioning Prof Gore in my meeting with local oncologist she asked me if I would like to be referred. Naturally said yes. Acquaintance of mine referred herself ( privately) and booked an appointment with the Prof. He was the UK head of a trial ( with Prof Gershensen of Anderson Hosp in USA world leader in mucinous) The trial ( number 241 ) aimed to get 83 ladies for each regime However, the trial was stopped as not enough ladies due to the rare nature of mucinous

    Unfortunately Gore was ill on my appointment day and saw his colleague She did not appear to like people with an opinion or knowledge As the clinic was already running an hour late before I saw her she eventually said that we are busy and she must get on and she left the room with me sitting there like a lemon!

    What I did agree on was the monitoring regime She agreed with me re what blood tests should be done (as listed above)

    As for blood tests- relatively easy to do As CEA test is raised in mucinous in 88% of cases (only raised in a very small % of other OC ) 88% is a pretty good indicator in my book

    I think this is a test definitely worth having The CA125 not raised for me (cannot remember if it was for you) and is often not raised for mucinous But she still thought it worth having as having others done

    The CA19-9 is one used for mucinous tumours and is usually used for bowel but very relevant in mucinous Same numbers looked for as 125 test i.e. 36 or over being investigated

    I wish I had booked privately rather than NHS referral but history now She said in letter to my local oncologist that she had discussed with him my case but he agreed with her They support colleagues understandably

    I would certainly feel a bit vulnerable not having any bloods done (I am 1C rather than your 1A) even if 1A or 1B I would feel happier with support evidence

    As I said before the local oncologist agreed quite readily for a CEA test when I asked but never offered it herself

    Not sure whether it was to shut me up or not lol Her main interest is breast cancer so do not know if she has detailed knowledge of how mucinous is different to other OC I will ask at the next meeting ( Friday 13th - you could not make it up ) how many mucinous ladies she has treated

    I waffle on - more importantly I have finished my ginvent calendar with the pink pepper gin being my favourite- just thought I would share 😁


  • Hi Fay, thanks so much for the detailed response. It's most interesting. I'm glad you got the regular monitoring out of the meeting even if you didn't get to see Prof G and his stand in rushed you (how rude!) Maybe as you say, it's because I'm 1A my Onc doesn't feel thorough follow up is necessary as she poo poo'd any regular blood tests for me (my Ca-125 was normal prior to diagnosis) but having had a further USS late Nov & something was found (not sure yet whether it's something to worry about or not but at least made me feel like my worries were justified!) and hearing plenty of stories about mucinous reoccurring...I would rather, for my own peace of mind, HAVE a thorough follow up, regardless of whether she feels it necessary or not! There are some decisions and actions that I've taken personally along the way since my diagnosis which I believe have (so far) saved my life (going private for my initial scans and op being one of them) so I'd rather trust my instincts on this. I'm assuming if my Onc continues to refuse regular checks/tests I can either ask for a second opinion or just arrange to have USS and bloods done regularly privately? Although I don't see why I should, I understand that is the reality of the world we live in now unfortunately (my initial diagnosis being proof of that!)

    I follow your journey with interest Hun & hope your meeting on the 13th is a productive one!

    Jemima xx

  • See above

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