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.
Tia
Fay
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Petrolhead
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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.
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.
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...
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.
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!!
I;ve just joined this forum, having been diagnosed with mucinous 1C today, after removal of a cyst, ovaries, tubes, womb and omentum. I have to decide whether to have chemo to mop up any stray cells, but am not keen, because of side effects. Is there anyone out there who can recommend a good alternative clinic in the UK which has success with their treatments ?
Hi sorry you've had cause to join the forum.. you will find a huge amount of care, experience, good sense & knowledge here.
You will likely get a much wider/better response by writing a new post...
Also do consider calling the nurse-led helplines at Ovacome, Target Ovarian Cancer or Ask Eve. They have so much specialist knowledge and are very supportive.... best wishes, Sx
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.
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.
- 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....
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
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.
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!"
HOW ARE THERE DIFFERENT PATHWAYS OF CARE FOR THE SAME THING????????? AARRGGHHH this infuriates me!
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
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?
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
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
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.
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!
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!
Hello Jemima, I have just followed the thread on mucinous OC from 4-6 months ago with mainly you, Petrolhead and Sunfleury. I was diagnosed with MOC in Feb, it was found following what should have been a straightforward hysterectomy (if there is such a thing).
I am having a formal staging/grading meeting on Mon 15 after a 6-week wait for the result...partly due to the backlog after the Easter hols and partly due to the relatively uncommon nature of the disease. Feeling extremely anxious as have, like lots of ladies here, been thrown into this world of terms and tests I am only barely understanding.
I have learned such a lot from your responses, and those of the other two ladies. Do you think I should mention the CA19-9, HE4, K-Ras tests, Prof Gore etc at my meeting? Or do I wait to see what my onc has to say first?
I notice that the last post here was about 4 months ago so I keeoing my fingers crossed that you might see this.
Hope you and the other ladies are doing well. I wish I had your optimism and strength. I am ashamed to say that, being at the start of this rubbish journey, I feel completely like giving up, which is terrible and selfish and thoughtless considering what others have been through and how I am being supported.
Please rant whenever you wish... we all need to and this is one of the best places to do it!!! I think I can say with near certainty that pretty much all of us have felt exactly as you describe along with a whole host of other things we'd prefer not to admit to! its very human so do be kind to yourself as you're dealing with a great deal already!
If you've got your staging meeting coming up, its worth just focussing on what you might want to ask at that meeting. Every one is different but I found it useful to write down all of my questions as they occurred to me and then edit it the day before.
The likely focus of the meeting will be to discuss what, if any, treatment is recommended next. Personally I find it helpful to concentrate questions on the possible outcomes and have always taken a 'one step a time' approach! are you anticpating having chemotherapy?
The CA19-9 and HE4 tests are relevant for monitoring and Fay's post above is likely best practice in the UK for a monitoring regime. As Fay has also said, there are centres of excellence that focus on this particular type. I would definitely encourage people to consider whether and when a second opinion might be useful. I don't think this is something that we realise is completely normal and embraced by consultants.
Jemima and Fay do look at the forum so I'm sure that at some point they'll pop up too. We'll happily share our experiences and what we've gleaned along the way if its helpful to you..
Have you got hold of Target's booklet 'What HAppen's NExt?' You can download it from their site and/or order a paper copy. Its really really useful and I cant recommend it highly enough. Covers the medical bits but also all the other important aspects XX
Yes, have been told that chemo more than likely as some of mucinous fluid has 'escaped' and found its way onto other tissue. I think the delay with this staging meeting has partly been for the histology results to be passed to other professionals in the hope that a way forward can be agreed/recommended, but my husband and I considering looking at a 2nd opinion.
Have pages of notes and, coincidentally, just trying to make sense of them and make them more concise. Probably have 3 groups of questions for - gynae oncologist who was the surgeon of my 2nd op, the CNS, and the oncologist who will administer treatment. Bit of a nerdy list person so I'd better get on with it!
All 3 children on exams in the next few weeks - uni, A-levels and school, so keeping my game face on. Had a major wobble last night but keeping going for my kids and these posts are truly what is seeing me through.
Ah... am a nerdy list person too!! It came in really useful when going through treatment as a way of focussing both my own thoughts and getting the most from appointments.
I suspect that Fay has the most uptodate info re chemotherapy options for Mucinous types. In the US and increasingly in the UK there is some belief that they can respond well /better with protocols from GI oncology depending on circumstances.
As you've probably seen from other posts, there is definitely a lot to be gained from having input from centres of excellence. Wherabouts in the Uk are you?
The one piece of advice I would pass on, is that you will have access to your team after the meeting so its good to prioritise what you need from Monday.
I asked after my surgery to be referred to counselling. It got me through some difficult months, primarily as I could say the difficult stuff in my head that I kept from those who I loved. It can take a little while and there's never any pressure to continue but its a good time to ask for the referral to start the ball rolling!
I to was diagnosed with stage 1c mucinous tumor i am having 6 rounds of mop up chemo,it was graded a 2,but i am scared when or if it returns as have read chemo doesn't have a good affect on it if it does return
Sorry you have to be part of our group. Even though chemo is reported not to work well - it does work but not necessarily as well as some other cancers. That percentage that it does work could be the amount that you need. Good luck with your treatment. Start another thread so you can let us know how it goes.
Hi Izzy, you've plenty of reason to feel hopeful as it sounds like you've had a really good surgical result.
I had mine 4 1/2 years ago and voiced similar concerns recently at my last follow up. My consultant surgeon said very similar to Fay (Petrolhead) about chemo but also really stressed that in the event of recurrance he would expect to be able to offer surgery again and would hope for a good result.
My best advice would be to try to take things one step at a time. Keep posting and take good care of you. Wishing you hope & strength X
Hi Gillian - I see the others have already responded to your post and i guess there's little more that I can add. I was lucky in that i was staged 1a and so didn't require chemo (thanks to the skills of my first surgeon). I also only had fertility saving surgery so still have my left ovary intact. I am monitored every 3 months with an ultrasound scan every 6 months. After 2 years, my Onc will 'discharge' me but I will always have a fast tracks back to her should i need/want/have symptoms. I guess at some point in the future i will need completion surgery. Unlike the others, my Onc isn't a fan of CA125 (it wasn't a good indicator for me anyway) or CA19-9 and i don't believe HE4 is even offered in the UK, but I'd certainly bring these points up at your meeting. I'm happy to trust my Onc on this for now. As Sarah has mentioned, i'd just take each day as it comes initially...get this next meeting done and get a grasp of what is likely to happen next before perhaps asking for referrals etc. You already seem to have a growing list of questions, which is something I was also going to suggest (as I find my mind goes somewhat blank when i'm actually in the room). Take as long as you need to go through each one until you feel comfortable you've got the answers. Don't be afraid to challenge them on anything either. This is your health remember.
This is a fantastic forum with many ladies all with a wealth of different knowledge and experiences so lean on us when you need to. And of course, keep us updated on how you get on.
Hi Jemima, totally agree with the blank mind state when I'm in an appointment. Thank you again for your advice and reassurance. It was thought that my OC was 1a but some of the mucin has apparently leaked so...
One step at a time.
Roll on Monday, just need to know the way forward.
Definitely keep us posted Gillian...I would have been where you are had my first surgeon not had the nowse to bag the little blighter before removing it (because, at first, everyone just believed it was an ordinary 'cyst'). The beauty of these mucinous tumours...the little buggers look almost normal on scans and as we know, generally don't raise CA125. I also went private for my first op (which i also believe, in a way, saved my life) because the wait on the NHS was 6 months as i wasn't considered an urgent case due to all signs pointing at it not being anything to worry about, despite the fact i looked about 3-4 months pregnant!!!
Roll on Monday indeed...sometimes things seem eminently more manageable when we know what it is we are dealing with xx
Have been following the thread from 4-6 months ago with you, Sunfleury and Mrs_Atka. I was diagnosed in Feb with MOC and am having my formal staging/grading/planning appt on Mon 15 May. Followed with interest your conversation about wigs and treatment. How are you doing now, would be very interested to know.
Made loads of notes from your thread.
Feeling very scared, and as I have said i another reply, am ashamed of the despair I feel when others are coping with so much more and often at a more advanced stage. Must seem very ungrateful and my husband deserves a better wife than this!
Really hoping you might pick up on this before Monday.
How are you doing? I hope that you are feeling better and that your treatment has been successful.
You asked about tests. The HE4 is not used or approved for mucinous in the U.K. So I doubt if you will get that. They always do a CA125 whether it is a good indicator or not.
I would very strongly advise the CA19-9 and the CEA test. The CEA is known to be raised in 90% of mucinous cases so quite a good indicator.
I asked about the KRAS mutation at the Ovacome conference earlier this year. As it is not a germ cell mutation there is no point in testing for it as no predictability.
I do have a couple of very good papers - one by Frumovitz and Brown on mucinous which is concise and understandable. There is also a good slide show presentation by Prof Perrin if you have found that. Let me know if you would like either sent to you.
I am having the last (hopefully) chemo on Monday. Just been for the blood test.
Side effects for me has been the neuropathy in hands and feet. Hope this will lessen or go after treatment stops. Luckily no nausea for me. I already have post treatment scan booked. All CEA tests and CA19-9 have been ok for me.
I tend to wear my wigs everyday if only to keep me warm lol. I do however now have eyebrow envy as extreme scarce.
I do ramble on a bit. Anything I can help with please let me know. It can be a sharp learning curve.
Very best wishes for your next onco meeting.
One thing I will say is to check that your mOC is primary. Can be that it is a secondary from the bowel. From memory the indicators for it to be primary
One ovary involvement
Large size over 12cm
Expansile cell growth
No hilar involvement
K7 positivity
Always ask for a copy of your blood tests and a copy of scan results and copy of histology report because most of the information is in these which they do not always share if you are the sort of person who like to know
Thanks for your recommendations about the tests - duly noted!
I had previously found the Prof Perrin Ppt and have just located the Frumowitz and Brown article - thank you for that. WIll read this afternoon!
The checklist you provided will be really useful and yes I will ask for copies of all tests and reports. Oh my days, so much to take in, the quantity of new information and knowledge suddenly mushrooms massively. One step at a time, I think.
It is very lovely- even on days like today when the rain is pouring down!!!
I'm good thanks- have my six monthly check coming soon so despite having no specific concerns, my subconscious rattles away at night but its a familiar state!!
Have you been to the Maggie's Centre yet opposite The Christie? I visited a few months ago and was really impressed... If you havent been, do poke your nose in as there's lots there that will be helpful.
Hi, I'm new to this page and wish I'd found it earlier.
I had a TAH, bi lateral salipingo,oopherectomy and omnentectomy I Feb 2013.
I had a mucinous borderline ovarian tumour.. but no more information was given. So no idea on grade etc.
I have a check up once a year which only consists of a internal examination.
I've had some pain o the lower right side if my abdomen which I've had an internal and abdominal ultrasound, which But hasn't shown anything up. Is this the best way forward? The lady performing the ultra sound didn't feel that this was the right type of scan to show anything up.
The blood tests mentioned sound very good and was wondering if my gp would be able to do these?
Your GP can order blood tests that you can have done at the local hospital. They can order CA125, CEA and CA19-9 though not all GPs may know what they are significant for.
Re the scans. Different doctors prefer different ones. Either an ultrasound or CT should show any problems IF of sufficient size. A pet scan is not generally much good as mucinous is usually slow growing and pet scans show activity and usually need a faster growth.
You may not have been given a stage and grade as borderline is where it is not generally diagnosed as cancer but has the potential to do so.
Hope that makes sense. If you are concerned then start asking questions and gathering information. If the read the forum you will find that you do have to be persistent with many in the medical profession.
Let us know how you get on. I suggest you perhaps start s new thread when you do this.
I recognize some of you from my previous post. Figured I’d share my wife’s Story:
Diagnosed with stage 1C (grade 2) mucinous OC April first... colonoscopy and endoscopy came back fine, and they were certain this didn’t originate elsewhere. We live in New York City where she is being treated at NYU. She got a second opinion at Sloan Kettering, where they reccomended FOLFOX, and NYU reccomended Carbo/Taxol. Both oncologist then discussed and both agreed that it didn’t matter, what she used, as surgery is the main cure, and no matter what, any chemo will do the same job mopping up cells left behind. NYU said it was her choice to choose, Sloan said FOLFOX so we went with that. They only test her 19-9 as that was the only thing elevated prior to surgery. We had a small set back today because her liver levels were high, currently waiting on ultra sound results, hoping everything is fine. I think it would be highly unlikely it’s due to the cancer, and more because of 4 chemo treatments. Anyone else have issues with their liver during chemo for mucinous? She has 6 treatments total, every two weeks. The 5th has been delayed two weeks now, and they said she might now even finish pending ultra sound results.
It sounds like Folfox is the chemo that is trending at the moment for mucinous, as it looks like and acts like a GI cancer. It’s known that in later stage mucinous cases, carbo / Taxol does not really work too well.
Not sure if you will get many replies as this is an old thread.
FOLFOX is usually used- and is recommended by Dr Gershenson of MD Anderson a world leader in mucinous OC. It is also used in Ireland as first line. The trial headed by Gershenson (US) and Prof Gore (UK) cog241 to compare Folfox with carbo/taxol was abandoned due to lack of participants. However a paper was presented by Gore on initial findings which indicated no statistically significant benefits between the 2 regimes. In the U.K. only carbo/taxol is officially recommended for any OC mucinous or not. Treatment here is every 3 weeks except for those on a trial where they give a third dose weekly to try and lessen side effects.
What exactly are the problems she has had re her liver?
Majority of all drugs are processed through the liver so it will always be under pressure. What test did they do to measure this?
Does she have a CEA test? It is raised in 89% of mucinous OC. So a good but not guaranteed indicator. Might be worth adding to the CA19-9.
It is known that mucinous is up to 70% resistant to chemo- but you could take that 30% could be effective and that might be the bit that works. However I sincerely hope that initial surgery and mop up chemo makes it that no recurrence occurs.
Very best wishes on the treatment and end of treatment results.
Hi Petrolhead hope you're well after some answers really as we know mucinous is rare to be a primary in the ovaries and my wife and I went to see the surgeon to discuss op etc and even though nothing shows on all the scans ie pancreas, appendix and the fact my wife has no symptoms for pancreas they said still after 3 months it still could, also she's had 4 rounds of chemo and now op,the cancer hasn't shrunk but stayed the same what are your thoughts as I'm worried thank you in advance
Has your wife definitely been diagnosed with mucinous? From you previous posts it does suggest that there is some confusion or a combination of more than one sort ? There are certain things that indicate primary mucinous. I assume that it has been confirmed as primary.
When you state that scans show no shrinkage you don’t mention what type of scan. Has she had a PET scan? Not often ordered as more expensive. This scan shows cells that are active. That is cells that are currently dividing.
If it is mucinous then chemo often not effective. In this case then no shrinkage would be seen.
The fact is that only one cell has to be left then there’s a chance of it growing again albeit an extremely small one. No easy answer.
It may be worth trying for a talk with your CNS. Sometimes they can explain the situation in a different way.
Unfortunately I don’t have an answer for you that is much help.
I am 1C3 ( uk ) and have 3 monthly ca125 and cea ( I had to ask for that to be added as it was the marker that was most elevated at diagnosis). No regular scans but was reassured when had some abdo pain and raised liver tests 6 months after my op they did order ultrasound and ct with contrast to be sure it was not recurrence. There are differences between what ct and mri show best hence why at diagnosis people often have both. Unless highly indicated ( is indicated for some cancers) they will avoid surveillance CT as radiation exposure and potential for mutation in future years to healthy cells is not insignificant with CT.
I am surprised that they are not doing a CA19-9 the usual bowel cancer test as is usual for mucinous.
I have agreed to reduce my CT scan to annually rather then twice a year. You mention the risk re cell mutation from the radiation. If you lived down south ( I think Devon / Cornwall way there is a lot of ground radon that seeps through carryover a similar risk so I’m not too worried about that.
If I get any pain or worry re a recurrence I will ask for a PET scan as it shows active cell division. Hopefully I won’t have to.
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