Hi, formal staging yesterday was Stage 1a (Grade 2) and, after waiting 6 weeks for this result, I feel exhausted. Consultant and CNS both very happy. I'll get there, but my mind is set on the type of chemo that could be effective for mOC. I have read a lot about mOC being resistant to the usual platinum drugs. Please does anyone have any advice about this?
Thank you 
xx
Hi Gillian, I was diagnosed with Stage 3 mucinous ovarian cancer a year ago. I had a hysterectomy followed by 6 courses of Taxol/carboplatin chemo. I had some side effects but not as many as advertised. I finished treatment in November 2016. Have been NED since then. Feeling very well and returning to a new "normal" . You will get through this, take it in small steps and have faith in your team. I'm a great believer in a positive attitude. Best wishes and a big hug🤗
D
That's a wonderful result, I am so pleased for you. Thanks very much for your reply, feeling more positive this evening. All the best to you too xx
Hi Gillian,
I was Ic moc inSeptember 2014,had radical hysterectomy,6 months carbo/taxol and have been NED since March 2015.
You can do it,stay positive,you have been diagnosed early.
I had very few side effects,still did mostly everything and everyone said I looked good,(pity the weight didn't stay off) 😳
Love,
Cxxx
Thanks Carole, this is very reassuring. It seems mOC doesn't really fall into a regular category as so little is really known about treating it effectively at a lower stage. Thank you for sharing that, it does help me to think more positively.
Big hug and stay well xx
Hi Gillian
I was also diagnosed with stage 1a grade 2 mucinous OC and had full hysterectomy in October 2016. Chemo was deemed not necessary due to its early stage. I now have regular CA125 and CA19-9 for monitoring. My last CT done in February this year has showed multiple lung nodules in both lungs so they are now monitoring those.
Good luck with your journey, thinking of you and sending hugs 💐
Thank you. Yes, I have a feeling that I will have to make the decision about whether to have chemo or not and I'll find that difficult. Did you also have the CEA test? Good luck to you too, it's an absolute witch of a disease. I hope we all have a positive journey - as someone else has very well expressed - its a real roller coaster. Thoughts with you too and a big hug xx
Hi Gillian, Its a very hard decision if to or not to have chemo. I hope you are able to make the right choice for you. Read up very thing you can knowledge is power. Ask as many question as you can think of.
I am interested in the CEA test I haven't been offered it or is it just for mucinous oc?
Good luck take care Cindyxx
Hi, thanks for your reply. I'm not sure whether CEA is just for mOC. I believe it is done as a blood test. I have a list of questions 🙄 And another lady here mentioned a research document that we have found really useful. It's by Brown and Frumowitz, if you Google them it will probably come up.
Good luck Cindy,
Lots of hope and love 🙂 Xx
Hi Gillian, I am glad you are well prepared because it so stressful just trying to take this all in. The the onc hopefully will be able to answers all you concerns.
Thank you I will look up Brown & Frumowitz. I don't have the same oc as you but I will read everything I can find on any type of oc. I need to know as much as I can it kind of keeps me in control.
Keep us up dated on how you do take care Cindyxx
Yes I do have CEA test but it has never been elevated in my case, my CA 19-9 was 3200 prior to surgery, so I presume that test will be the best indicator of recurrence.
Yes, thanks, I have read about the CA 19-9 too. Will see what onc has to say next week. You make sure the lung nodules are monitored, and good luck. Please let me know how you get on xx
Thank you thank you for the Brown and Frumowitz reference. Brilliant and comprehensive plus it put me quite at ease. Stage I mOC has a very high survival rate. I was as diagnosed on March 28,2016 with stage IA grade 3. Radical hysterectomy and debulking. I was Told that I could opt out of chemo but for high grade cells, chemo was my only chance for a 'cure'. I researched and chose carboplatin only which has many fewer side effects. I found 3 studies that all said the same thing. Taxol has some nasty possible long term side effects and is not effective against high grade cells. Please ask about this.
It is a year later. My scans are clean and my CA125 is at 7. I am enjoying a blossoming acting career at the age of 66. Best of luck.
Great to hear that your scans are clear. And, wow, all the best with your new career - that's fantastic. I too would like to look for a cure if that is possible. The consultant said I was borderline grade 1/2 so I'll need to weigh up the pros and cons of treatment. Really want (and need) to be back in work but this situation has to be health first. I'll make sure to ask about the meds. Thank you. Have a great time on the stage
Really check about taking single agent Carboplatin. The benchmark study was ICON 3 published in the 2002 Lancet which showed there was no difference in survival rates between Carbo only and the Carbo/taxol combo. I found two other studies published later that confirmed this. One even said that the Taxol was given in the US so that oncologists can make more money. But I live in the US and I assume you live in the U.K.
I get scans every 6 months. That is the practice at Memorial Sloan Kettering.
Chemo treatment is a very personal choice and not an easy one to make. If not for the fact that my surgeon and 2 oncologists insisted it was the way to go for a chance for a cure, I would have chosen to opt out of chemo and worried about it every day of my life. Taxol is an evil drug in my opinion. But I would NEVER tell someone which treatment to choose. From what I have read, mOC is platinum resistant at the higher stages only and is very effective for our stage Taxol is not effective against high grade (mine was grade 3)
My mom is 94 and I didn't want her to know. With Carbo only she never had to find out. I had some bad days, the worst after the final treatment when my blood levels plummeted, but I did not lose my hair (of course that is not the worst thing that can happen but it was very important to me as an actress) and I don't have any long term effects like neuropathy. I worked throughout treatment I never missed a beat I visited my mom often on days I knew I'd be okay She still does not know I had a cancer diagnosis
Best of luck. Only you can make this decision. Keep us posted
Susy
When I see the onc I will no doubt have a few questions. Will be sure to enquire about single agent carboplatin and the treatments that are mentioned by Fay (Petrolhead) too - one of them is Xelox (or Capox), do you know of this at all?
Bless you keeping the situation from your Mom. Thanks again.
G xx
one that was mentioned, FOLFOX, is specific to colorectal cancer and has many side effects, as do all, including neuropathy which is usually permanent. Xelox is for metastatic colorectal. Perhaps they are using it experimentally for OC. It has a platinum drug as part of the "cocktail"
Ask MANY questions. Write them all down so you don't miss any.
Hi Gillian
Good news on the stage for you. NICE guidelines that the medics follow only recommend chemo for stage 1C and above. They still treat mOC the same way as all other OC even though it acts like bowel cancer. An international trial number 241 headed by Dr Gershenson in the renowned Anderson hospital in the US (Prof Gore of the Marsden was head of the UK arm) had to be abandoned as they could not get enough ladies with type of oc. However, Prof Gore did present a small paper at a conference detailing the results for the 13/14 people on each arm of the 4 arm trial. Although they only had small numbers and statistically not enough to produce any firm recommendations he did state that early indications were that there were no advantages to the bowel cancer regime being trialled. ie the FOLFOX regime against the standard Carbo/Taxol. The regime Xelox (known as CAPOX in the UK) is also used in the US and as first line treatment in Ireland.
An acquaintance of mine (stage 1c) contacted the US trial head and he recommended the FOLFOX regime or the Xelox. She was treated with this regime but she did have private healthcare and the Prof at the Marsden did support this regime at her local hospital. When I tried for the same I was not supported in my choice probably because if treated via the NHS they will only follow NHS and NICE guidelines.
mOC does not have a particularly good response to platinum drugs and can be 70% resistant. Also the lower the grade the less responsive they tend to be as they are more effective on faster growing cells. However, even though they may not be super effective they will still work to some degree.
With your staging of 1A I doubt they will offer chemo as it is considered to be all contained and removed during bulking.
Just the monitoring that you will be happy with.
I will be interested to see what they will offer or whether they will suggest watch and wait. Please keep us informed.
For me at Stage 1C grade 1 - I get 3 monthly CEA, CA19-9 and CA125 (although CA125 is not a good indicator for me as was in the normal range at diagnosis) and a 6 monthly scan. They only tend to do the CA19-9 and CEA for mOC and other cancers like bowel cancer. With my oncologist I had to request both the CA19-9 and the CEA test but this was supported by the doctors at The Marsden. The CEA is a blood test ( I have read that some add it to the blood test request sheet themselves! but I have never had to as any Dr I have seen has just added it when I have said I wanted it. )
Glad people have found the Brown and Frumowitz paper interesting and useful.
keep us informed
best wishes
Fay
Thank you, friends and family want to do more celebrating than I feel able to at the moment. With the decision about chemo next week or the week after I just feel its a bit premature to open the Prosecco just yet!! I'm not being miserable or pessimistic with them at all, just want to go step by step.
Have taken on board all you have said, I will ask about Folfox and Capox. I have health insurance but didn't even think about using it for mOC and have stuck with the NHS, thought it was the best place to be especially given that the Christie hospital is where I'll be going.
Your plan and monitoring is what I have been told will probably apply to me - same tests and frequency of scans. I have read somewhere that the simple ultrasound scan can often pick up irregularities just as reliably, but perhaps not in as much detail, as the CT scan - do you have ultrasound scans?
The B&F paper you recommended to me was the most useful document that I have read so far. You have helped a lot. I'll post after Christie appt, in the meantime thanks again Fay, hope you're feeling well.
Best wishes, Gillian
I am having CT scan as that is what my oncologist prefers. I don't mind either way. FYI PET scans which are normally considered the ultimate scan are not usually much good for mOC
Best wished Fay
Hi, Gillian.
I was diagnosed with stage 1A seromucinous adenocarcinoma of my right ovary back in October 2011. No grade was given, but it sounded as though a number of areas with different grades were present from my histology report. I was not offered chemo. I'm still NED five and a half years later. I've been monitored with CA125, though at 64 on diagnosis, mine was never very high. Since surgery, it has varied between 12 and 8.
I have every confidence you'll do as well!
All the best,
Barbara
Thanks for replying Barbara, very please you are NED. My CA125 was 55 but was told it is not a very reliable indicator so I'm picking up on CA19-9 and the CEA test from reading, talking and listening to others.
Glad you are so well, best wishes, Gillian
Ic Mucinous (grade 1) treated 2012 at the Christie with Carboplatin only on Oncologists advice. NED since surgery Sx
Hi, only carboplatin, that's interesting. Will have to see what the oncologist says next week. So pleased you have NED.
Thank you, best wishes, Gillian
I saw Dr H there who is oncologist for both ovarian and GI cancer. I had been expecting to be told both (based on conversations with surgeon & the team's nurse practitioner) and was rather flummoxed when he said just Carboplatin... Sx
But it worked for you, so brilliant !!!
My wife - Stage 1C Mucinous, operated in Jan 2016. Done 6 chemos Carbo-taxol. NED ever since. Ultrasound/MRI every 6 months. CA-125, HE-4, CA-19-9, CEA every 3 months.
For stage 1c, Carbo-Taxol is the standard. For stage 1A, I would probably recommend going for Carboplatin single agent 4 cycles. Many doctors avoid chemo for stage 1 A, but just to be on the safer side go for single Carbo. Avoid paclitaxel as it is probably not required at stage 1A and has many more side effects without actually benefitting a lot. 4 cycles is more than enough as well since beyond 4 cycles you gain only 5% advantage while side effects are most in 5th and 6th.
Hi, thanks for your reply. Great to hear that your wife has NED since chemos. I'm reading similar things now - that carbo-taxol used at Stage 1c and you're not the first to say that carbo single agent can be effective at 1a. Brilliant advice/idea as well about 4 months instead of 6. Is this treatment in the UK? I don't think mOC ladies can have the HE-4 in the UK, otherwise the checks/tests/monitoring all agreeing with what others have said. Really appreciate that you have replied this, thanks again.
Best wishes to you both, G xx
Hi Engharsh, I remember from previous discussions that you are in India. There are different protocols for stage 1c in different countries. In the UK (according to NICE guidelines) Carboplatin only is the standard treatment for 1c. There will be circumstances here when it is recommended / prescribed with Taxol.
Best wishes to you and your wife, Sx
That is correct S. We are based out of India and have the liberty to choose treatments. Since my wife's had another specific thing in her biopsy report (something about growing vessels inside tumour tissue which is not usually tested), we decided to go for full 6 cycles against our attending's advice of 4 cycles.
I should look up the NICE guidelines I think before appt next week. Thanks for the reminder xx
How did you proceed?
I am in Canada and have mucinous ovarian cancer and my doctors chose not to give me any chemo or radiation at all! new study says that it does not work so I had everything removed including my appendix, ovaries omentum etc had the surgery in april, now they are just monitoring me every 3 months, just had my second ct scan on Thursday and waiting the results on my next appt nov 20th, it is nerve wracking to say the least! but I am keeping my spirits up and so should you! my doctors say if the cancer comes back somewher else we will deal with it as it comes, I was stage 3
Hi bunnyone
Am pleased you're doing so well and long may it continue !
Have you seen the actual study or did they happen to mention who /where it was?
Lynn
x
just know that I am going to the Cancer clinic in Ottawa Ontario and after my surgery all the oncologists had a symposium at the Ottawa hospital and they discussed my case with the "breaking news" is what my doctor called it, that mucinous ovarian cancer is not receptive to any chemo therapy or radiation, therefore why put someone through a treatment that has not been helpful in treating this type of cancer, therefore removal is the best way to deal with this, and if recurrence happens it will be dealt with as it comes up depending on where it shows up, be it in the colon, breast, liver, etc these areas can be treated with chemo and radiation, like they said since my last ct in july that I had no sign of the disease since they removed it, but I still have cancer cells (mucinous) in my body that can come back as cancer somewhere else, but luckily it is a slow growing type and should be highly detectable next time around! but hopefully not for a long time!!!
Well, that's interesting bunny, and not quite the same view as the doctors here in the UK at the moment as they think it's worth trying Carboplatin, although they have dropped Taxol from the early stage treatment of mucinous.
I don't really understand why your doctors are saying it doesn't respond to chemo, but also that if it comes back (and it's still mucinous as it likely will be), then they can treat it with chemo? Perhaps I'm being dim! But surely wherever it is in the body it is still the same cell type so will respond (or not ) in the same way...
Anyway - fingers crossed we all get through this nasty disease one way or another!
Thanks for letting me know another perspective. We like information in here
Lynn
x
I would like to follow you as I too have mucinous diagnosed June 2018 and Ihave read the same info. My surgeon said no treatment except the surgery and now shes on mat leave for 7 monhts.Not too many of these cases so I would like to follow.
hi scraggs! I have taken a bit of a break this past week, got more news, I guess I will be going up to Toronto to see Dr Andrea McCart at the Mt Sinai hospital in Toronto, she does the hipec surgery procedure there as Ottawa has no one that does this! not sure yet if I am a candidate for this surgery but going for a consultation anyway, my Ottawa Dr says now after speaking with Andrea about my case that the cancer did not start in my ovary it started in my appendix so I was mis-diagnosed, I probably would have gotten the hipec surgery if I would have been admitted to Toronto hospital but it was an emergency so I ended up in Ottawa because they originally thought it was ovarian cancer! Removed everything but Dr always questioned why the appendix was so shriveled up and closed on both ends but pathology of the appendix came back clear of cancer this is why the un certainty as to where this all started for me! it has been very very frustrating to think that I could have been cured by now by this hipec surgery if it had been done at the beginning now I am looking at another huge surgery with a lot of potential complications! but I think it would be best if they did the surgery right away to remove the two spots that I have before more show up! I have one pouch of mucin end of my liver and the other at the end of my small bowel, the second one is a new spot since my surgery in March 2018. anyone else here have hipec surgery?? would love to hear your thoughts!
Ask lots of questions and see as many doctors as you feel comfortable seeing! more opinions are much better than one!!!
Good for you.I read about it but didn t hear of anyone personaly going through it.I should be going for my three month post surgery check but the surgeon is on mat leave so I told her I would see her when shes back.I will however see my GP in Jan .Im sure she will check my CEA levels and other serum tests because my CA125 didn t elevate much.I was so nausated and thats why I went to the Dr.As soon as the tumor was removed I felt great/It was approx 20 cm by 20 by 12 cm.A monster.We joke I c sectioned an alien. lol I hope that the HIPEC treatment works for you and is well tolerated. In Edmonton AB we have a top notch cancer institute although the building is old. Toronto is probably the same Top notch I mean not old.lol.A lot of ladies here are from the UK.I think they stage the cancer different over there.What do I know Im new to this. Your cancer returned in eight months right?My appendix was removed and they said it was all clear.I think with mucinous it can have benign. boderline and malignant cells in close proximity and so it is hit and miss for where they sample.I readthere is room for misdiagnoses as the ovary being the primary site.Let me know how it goes.
Ovarian Epithelial Mucinous
Stage 3c Ovarian Cancer initial chemo didn’t work
Mucinous Borderline Ovarian Tumour
Types of Ovarian Cancer
