Well, have been back for post op follow up and told I have Stage 1c. Wasn't told the cell type but I asked for a copy of the pathology report and it says Stage 1c Mucinous cystadenocarcinoma. All other biopsies normal. I only got the 'c' rating because there was a tiny amount of 'leakage' from the ovary.
Am I right in thinking this tumour type is a bit more unusual?
He said I would be hearing from an oncologist and would be discussing any potential chemo with him. Any thoughts from anyone with a similar diagnosis or who knows about this please?
Lynn
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lynn6156
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Hi yes I have muchinous adenocarcinoma I was diagnosed stage 1c, as mine Had ruptured 3 days before my total hysterectomy,then I had six rounds of chemo carboplatin, I finished I,n October, I had a scan in March, which showed that there was no evidence off a reacurrance,in the local area, so please try not to worry, you will get a treatment plan, take care xxx
Yes I too had a large stage 1 mucinous cystadenacarcinoma in 1988. And it is a rare tumour. I think I was the only one my then elderly Consultant had ever seen. But in it's early stages it's one of the better ones to have as the chances of cure are good. I had surgery pretty similar to yours (not sure about my appendix!) and subsequent treatment was simply check ups. No chemo. And no recurrence. I was very lucky. No one wants this wretched disease but ours had a good prognosis. I was told a few years later that my prognosis was excellent. I wish my first Consultant had told me that - would have saved years of worry!
Hope you can find out as much as you can and get good advice about what further treament (if any) to have.
Thanks you two - gawd just the 3 of us? It was all a bit surreal because he didn't say it was rare, or even what it was. Nor did he mention prognosis. I was so pleased to hear the words stage 1 I was grinning like a mad woman!
His only real comment was that he wasn't going to comment on the chemo aspect but I would like the oncologist!
It seems there is some debate about whether the chemo works but if the tumour leaked/ruptured I think it's still advised to have it. I'll do more research and report back what the oncologist says when I get the appointment. It's always good to know other opinions eh!
There's was so little info about OC back in 1988 other than it was known as 'the silent killer' ffs! And my Consultant was even less forthcoming other than 'huge', 'bizarre' and 'why are you worried?'!!!! So I didn't really appreciate my good prognosis. It is so good that we can find out so much now and can do easily (although of course it can be very scary). I don't know about you, but I was desperate to know what I was dealing with and used to scour fusty old medical tomes in Bromley library with 2 small boys in two! To little avail.
So I'm sure you will be to make a well informed decision about treatment (if further treatment is offered). As I said, stay in touch.
I was diagnosed with mucinous adenocarcinoma in May 2016. My tumour was very large and burst on surgery so was staged up to 3.Total hysterectomy complete removal of tumour. My ca125 has been at 10 during and since finishing chemo in November 2016. All positive since then. Keep positive and try to return to a new normal difficult I know.
I'm feeling pretty positive - I've been so incredibly lucky that it was found by chance and my op was brought forward because of a cancellation. I should have only been going in for it today!
The only small cloud was the 'spill' but it's good to know others like yourself are doing fine after ruptures.
Hi I am stage 1c too but mine was serous high grade. Had total hysterectomy and the massive cyst ruptured minutes before they took me into theatre. Was advised to have 6 cycles of carboplatin which was doable. Finished chemo in January 2017 and thankfully all clear since. It’s scary but I am sure you will be fine. x
Hope you are as ok as you can possibly be at this moment. You are on to a wonderful site where there are amazingly supportive group of women. I don't post very much or even reply but I always know that this forum is here.
I was diagnosed as stage 1c grade 2 mucinous in August 2013 following surgery. I had six months of a treatment called FOLFOX more commonly used in the treatment of bowel cancer. I had twelve treatments and it was administered over three days each time through a port and pump. I went into the day ward on day one and then went home with the pump. My CA125 has been normal range since. The CEA has been normal also. All my scans during treatment and after until February 2017 were totally clear. Following the February scan there was a period of watch and wait and then I had more scans, CT, PET and MRI. As something had appeared in the pelvic area near to the original tumour they operated - a laparotomy that meant a lengthy recovery period. And what they removed - lymph nodes etc - was benign! They are still watching me closely - I had an endoscopy and colonoscopy last week that were both fine, my bloods were fine and I will have a PET scan at the end of May. It is always there at the back of my mind but I am much less worried now and I feel quite good overall. Like you I feel very lucky that it was found in the first place way back - (I had a pretty hard job convincing my GP that all was not right!) - and very lucky this time round too. I am almost five years now since the first surgery.
The very best of luck with your treatment. May it be gentle to you.
Thank you so much for your reply Marguerite (and everyone). How wonderful it is to have information come in so quickly where 'back in the day' it was hunting through dusty old books (looking at you Catherine! Gosh was 1988 really the dark ages? It seems so now doesnt it!).
I'll have to investigate the FOLFOX treatment. I have my first oncology appointment next Tues! so I'm making a list of questions!
Am so pleased you are doing so well....long may it continue for all of us!
Hi Lynn and to the other ladies here, I think you have brought together the most similar group of ladies I have yet seen on this forum - and how wonderful everyone is, so welcome to you, even though we'd all rather not be going through this silly business.
I' 54 and a teacher. I am married and have 3 amazing children. Like you, my ovarian cancer was found by accident. I had a hysterectomy Jan 2017 (for period problems, nothing more) and a tumour was 'discovered' on my left ovary...and had leaked a bit too. Following tests and confirmation of the cancer I had further surgery end of March 2017 to remove omentum, appendix, any bowel and lymph nodes showing cells. Your diagnosis has been very quick. Today (26th) is in fact the one year anniversary of the offical diagnosis of Stage 1a Grade 2 Mucinous ovarian cancer...so I had to wait from Feb to end April to find out properly what it was and what the plan would be. You know what waiting for results is like. I can honestly say that I cannot remember Feb 2017 or March 2017, it was just awful. All I can say is - if you are ever waiting - stay away from Dr Google!! Just listen to the team taking care of you, read what they give you, and listen to the fabulous ladies here. Despite the low stage I was advised to have chemo (carboplatin - widely thought to be ineffective against OC fgs) because of the leakage after the hysterectomy. Had 6 lots, every 3 weeks, it took me through to October, and as someone else here says...it was doable. Kept my hair, had a few side effects but kept myself physically fit, became vegetarian and immediately changed what I was eating and drinking - not massively, as I have always been health conscious but built in an anti-cancer food plan. To date I have had 2 of the 3-monthly check ups. CA125 about 5 and have built up to being back at work full-time ( was really tired at first and thankfully was allowed a phased return). Just had genetics test and have to go for bone density testing in 2 weeks - you may be offered these.
My advice is to have faith - in your medical team, in your own body and in your family and friends. You will be very well looked after in oncology.
Good luck, sending lots of love and hoping for good news for you. Keep in touch.
I'm one of those people who has to know every last detail and research everything till I've squeezed the pips out of it. I don't know what I'd do without this forum to provide all this information. Because of all you lovely ladies, I've got a fair idea of what will be said on Tues and I guess I'll be offered a course of Carbo. The point is that it's good to know in advance rather than turn up and have to choose something I know nothing about!
I'm also working on getting a bit fitter now I'm 4 weeks post op. This being ill lark is very time consuming and I have to say more than a touch inconvenient! So the sooner we all kick it in to touch the better!
Try putting mucinous in the search box as there have been a few threads on this. Feel free to read my profile.
NICE guild lines states chemo for stage 1C and above.
The FOLFOX regime is used in Ireland ( and the USA) as firstline treatment but not in England unless a private patient at the Marsden with professor Gore.
An excellent paper on mucinous has been written by Frumovitz and Brown in 2014. If you google this (lots of good information available if you take note of professional sires) the paper is available free and will give you virtually all the information on mucinous that you could wish for. At the time they worked at the MD Anderson centre in Texas in the US the world centre for mucinous. If you cannot find it let me know and I will try and find the link again.
There is also a Facebook page for mucinous ladies which has mainly American ladies on it I am not on Facebook so cannot comment how good it is
There are several more ladies with mucinous who post on here so any questions can be probably be answered.
There is also an American forum called Inspire which also has threads on mucinous if you put it in the search box.
Hi - and thanks - I think I'm all researched out now
I see yourself and a few others have had Carbo only (no Taxol) for this - did the oncs give a reason for this ? I'd rather have just the one thing obviously but in case they suggest both I'd like to know why in advance...
HI Lynn, I had been expecting to be prescribed both Carboplatin and Taxol from my surgical team and having researched a bit online. I had some questions about this from my own research. When I saw the Oncologist (I was treated at the Christie, Manchester) it was a bit of a curve ball when he said just Carboplatin. He didn't have especially good interpersonal skills and so when I asked why, he basically said, 'that's my decision, but you can have Taxol too if you really want it!' It was quite difficult to get my head around this but my GP was very helpful.
The NICE guidance is for single Carboplatin for 1C (unless there are other significant risk factors eg specific sub-types). Some consultants will though propose both and some may say with Mucinous 1c no chemo necessary. All chemo is a balance of potential risk vs potential benefits. There is still a limited amount of evidence for this stage and this type.
In other countries, 1C mucinous might be routinely treated with both Taxol and Carboplatin whilst in USA, I understand other chemo protocols are sometimes used for firstline (those associated with G-I cancers)
Apologies if this muddies the water more for you... there have been a lot of conversations around chemo prescriptions for 1C.
I would encourage you to write down all your questions, ask if its possible for you to record the meeting (this was advice given by a CNS at a support event I attended) and do remember that Ovacome, TArget Ovarian Cancer and The Eve Appeal all have nurse-led specialist helplines so are a good place to talk through any issues you may have.
Have found the NICE guidelines so it's looking like carboplatin only at a guess - at least I'm aware now of the options in case she suggests something different.
I was diagnosed in October 2016 with stage 1a grade 2 Mucinous OC. I had full hysterectomy plus removal of other bits and pieces. I was told that chemo was not needed at stage 1a. However follow up C.T. last month has shown innumerable lung nodules (have doubled in size) in both lungs with enlarged lymph nodes (previous CT showed nodules but team decided they were benign) chest conference report now stated probable metastasis from OC!!
I’m now awaiting CT guided lung biopsy on 2nd May, very scared that it will confirm metastasis as from what I have read Mucinous is resistant to chemo.
Oh Sarah, what a bummer! I think I read somewhere that they didn't think it spread through the lymph the way the other cancers do so maybe they've misdiagnosed the cell type in the first place (I've also read that can happen). So it could be you've got nodules that are responsive to chemo. If it is mucinous maybe there's some sort of targeted therapy /genetic thingy (not well up on this sorry) but there's got to be something. I know this is stressful but would you let us know what happens? The collective knowledge and experience in here is so important for us all to try and stay up to speed with it and help each other.
Crossing all my fingers and toes for you that it turns out ok.
Ah ok...I'm new at this and don't think I've had the Ca 19-9 - it's on my list of questions for Tues.
I've been worrying about the 'resistant to chemo ' thing as well but it struck me this morning that some people must respond to it otherwise it would be pointless us taking it and them wasting the money! All you can do if it turns out to be mucinous mets is assume you're going to be one of the ones that respond to it!
Hi Lynn, I'm another mucinous lady although staged 1a as my first gynae surgeon managed to 'bag' the blighter before removal, therefore no leakage, otherwise I too would have been 1c. I was 33 at diagnosis and had two ops - first to remove tumour, second (by Oncologist) to remove affected ovary, tube and appendix. No chemo. Followed up every 3 months with an USS every 6 months. Coming up to my 2 year mark in August and so far so good. Others are right in that on the OC spectrum, ours do generally have a good prognosis. I wish you well on your journey ahead, but you've found an ace bunch of people here
Jemima xx
P.S. the closed group on FB for us mucinous ladies is great...
That's brilliant Jemima! I'd have been a whole lot happier if we hadn't had the 'spillage' incident but hey ho. Only have to wait till tomorrow and I can drive the oncologist mad with my millions of questions!
I'm not a huge fan of facebook but I may take the plunge later and see whats what. It's great having a community here who understand. The less than helpful comments from some of my 'friends' have been ..well...not helpful !
Yes - I think we've all been there with unhelpful comments from friends/family! It definitely is great having this community, where you can bet your bottom dollar, someone has already gone through what you're experiencing or we can just offer a gentle ((hug)) over the airwaves when you need one.
Like you, I wanted to know everything there was to know about my situation. Just write down all those pesky questions and take them along with you when you see your Onc. There really are no silly questions x
Also as a really good general resource for all, do get a copy of Target Ovarian Cancer's, 'What Happens Next?' guide - its holistic so not just about the medical side and has a lot of input from women who have experienced the diagnosis.. You can download and /or get a free paper copy. targetovariancancer.org.uk/...
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