I’ve recently been diagnosed borderline mucinous tumour stage 1c2. This was as a result of emergency admittance with what I thought was a ruptured appendix, which was then diagnosed as ruptured cyst and twisted ovary. I had an emergency laparotomy to remove the cyst and ovary. At my follow up appointment 4 weeks later the gynae-oncologist confirmed histology and that after discussing my case with the MDT I needed completion surgery(removing left ovary, uterus, cervix and omentum). My operation is scheduled for 1st May(laparoscopic).
I’ve recovered well from the laparotomy, although I get the odd niggle and I’m not back to full fitness.
I requested a copy of the histology report to forward to my critical illness company to proceed with a claim. The report mentions “the cyst is filled with necrotic material, mucous debris and blood. Where tissue is more viable this is lined by endocervical-type columnar mucinous epithelium with admixed goblet cells, prominent villiform excrescences. A few scattered mitosis are seen, no evidence of severe nuclear pleomorphism and frank invasive is not identified. There is no evidence of malignancy, with the caveat that the infarcted parts of the lesion cannot be assessed with confidence. On balance the features are best regarded as a borderline mucinous tumour”
This is a really confusing diagnosis, am I doing the right thing having completion surgery? Was it just a ruptured cyst? Will the insurance company pay out? I’m a self-employed childminder, I’ve had 7 weeks off work now-luckily a nearby friend/childminder is caring for all my Childminded kids. Parents have been great and are happy to keep their kids with the other minder until I’m back on my feet in July. But I’m not earning money, my poor wonderful Hubbie is working so hard, my 2 teenagers have been amazing helping around the house. I just feel so stressed about it all.
I’ve read many of your stories which inspire me, some make me feel like a fraud. I’m not normally a worrier, it’s just the lack of information on this cancer?! makes me feel that I might be being too negative. I feel the consultant is flippant saying numerous times it’s not cancer, so what is it then?
Sorry for the moan, it’s just every now and again I feel I need to vent and I’m hoping someone out there has felt the same and can understand me.
Xxx
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Jezza02
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Thanks for your reply. I’m 45 and not started the menopause yet, however getting hot flushes and night sweats since the last operation to remove my right ovary.
I think it’s the idea that it’s not cancer and yet it is such radical surgery. I’m not normally negative and I’m sure I’ll be back to feeling positive tomorrow. It’s such a complicated diagnosis to get your head around-it’s not cancer so what is it?
I hope you’re doing well. This site has been a wealth of information.
Ah yes borderlines do seem to be quite complex, not classed as malignant but then they technically are 🤷 it doesn't make much sense to me. I think it would definitely be a good idea to discuss it further with them because I'm sure they will have a good reason for it if that's what they want to do.
Don't beat yourself up about being negative, we all have days like that I think especially when things aren't clear.
Sorry you find yourself in this position but I wonder if it is worth asking about the timescale? Do they think it would be harmful for you to take the time to get a second opinion from a specialist in this type of diagnosis? You could fully recover from your original procedure and maybe go back to work in order to make a decision down the line?
I made a claim on my CI insurance and they do try to support you...perhaps talk it through with them and see what they think? You don’t want any nasty shocks- either from the medical side or from your insurance xx
Cheers Lyndy. It’s the what ifs if I delay the surgery that worry me more. I think I’m going ahead, better for my business and my sanity to get it all over with now and recuperate for the summer holidays.
Having been diagnosed with stage 3 borderline serous OC with a few microinvasive low grade cells myself (age 46), I can only say that my critical illness insurance did pay out. Not sure what their assessment criteria were, but it might have to do with the words invasive and malignant.
My layman's understanding is that those two terms go together i. e. if the tumor is invasive, it might be called malignant and 'real' cancer. Always better to verify with your consultant (or a second opinion oncologist) though.
But: What do you have to lose, other than an hour of paperwork?
Personally, I believe the impact of my big debulking surgery wasn't much different from other OC patients, although I managed to just dodge a stoma, phew. And while I was initially treated as a borderliner, I got unlucky and the disease returned after about 2 years as low grade serous OC. So, definitely proved to be 'critical' after all. And annoying to boot!
As to whether you should have the big surgery or not...
I don't think anybody can give you a definitive answer. It's the risk of another surgery including impact of recovery (and suffering a rather weird feeling of the remaining organs vying for the best possible parking space in your belly, during the first few weeks following surgery).
Versus the risk that the other ovary might start causing trouble and who knows what the result would look like then.
Maybe you would want to approach a large gyn. cancer center of excellence like the Christies or the Royal Marsden for a second opinion, if you are not sure.
And I would definitely recommend you have the surgery in one of those large centers if you elect that path... if you are not already being treated there. Not in a small local hospital. Especially with a rare tumour like this you'd want a team with lots of expertise in that field.
Let us know what you decide. I sympathize with you. It sucks so much, being thrown into this situation all of the sudden. But you'll come out the otber end, you'll see. xx Maus
I was 1c mucinous and had ascites, so, liquid that had cancerous cells, could have spread to anywhere. Had to be drained on a regular basis and without my tumour being removed, goodness where that would have lead.
Unless you plan to have more children, my advice would be to have the op recommended.I am here with no reoccurences (so far), nearly 5 years later.
Borderline is a tough one, but, I would always worry where it might lead and I would always want the best chance to live for me and my family than take the chance otherwise.
Don’t know about your insurance, but mine paid for everything, just ask.
I had a mucinous Borderline tumour 1c removed nearly 5 years ago. It was huge - 22cm and 2 kilos. I had full de-bulking surgery at the same time, vertical incision. My gynaecologist-onc surgeon said he didn't think it was malignant, but couldn't be sure. I was post-menopausal, so didn't need my uterus any more, and what happened to one ovary tended to happen to the other one.
When the histology came up as Borderline, he said that meant that the cells weren't normal and shared some of the characteristics of cancer, but they weren't invasive. They would just sit on the surface of an organ and grow into a lump, but not burrow down and take over the organ, like cancer.
There's a good explanation on the Cancer Research UK site. He also said that it's a small percentage that recur and only a small percentage of those will be malignant. 'A small percentage of a small percentage - you've as much chance of having serious problems as of being run over by a London bus.' But, as Maus said, it can happen and I'm being monitored with bloods and u/s for 5 years. Incidentally, Ca19 is meant to be a more reliable indicator with mucinous tumours than Ca125. I have both. My Ca19 levels have always been slightly higher than normal, and I ended up with a Gastro consultation and CT scans last summer - all clear - because I'd had 3 raised levels in a row and there's sometimes a connection with pancreatic problems.
I agree with the others. It sounds as if you are already being seen by a gynae-oncologist. You definitely need one to do the surgery. They can have a good look round and know what to look for.
Compared with an ov-ca diagnosis, it's v good news. It's tough that you have to have another surgery, but even with only a tiny risk of future malignancy, it's not one I'd take.
Sorry Jane - I've just caught up with your history on your profile. You know much more than me about this! It's tricky switching from reassuring Borderlines who think they've been given a cancer diagnosis but will most likely never have any more problems to someone like you who's been dealt the shittiest of cards. Re London bus, I read out the 5 yr old survival statistics to my daughter. Only 2 out of a 100 etc. She said, 'What happened to them? Didn't they look both ways before they crossed the road?'
I was at St Thomas' and trust them implicitly. My surgeon was emergency on-call to the Marsden, so I'm sure he knows his stuff. Tho' I sometimes wonder whether he was factoring in my age (72 at the time) when calculating my mortality, I can't live the rest of my life waiting for the other shoe to drop.
Hi Jezza02, firstly never ever apologise for coming on here and moaning. This is where we feel ok to let it go, and believe me we all go through it.
Secondly you are not a fraud, you obviously have a lot of worries, concerns and genuine questions.
I am not sure I can clarify things for you but what I would say is make an appointment with your Gp or Consultant and ask them to clarify things, or ask for a second opinion. You have to be happy in your own mind to know what you are doing is right for you.
Most of us do have money worries (I know I do), and you are entitled to claim PIP and you may be entitled to ESA, speak with a McMillan person who will advise you.
Get all the information together about your condition so you make an informed decision and do not be pressurised to rush into anything.
I know this isn’t answering your questions but I do hope it helps a little.
Sending you lots of love 💕 hugs 🤗 and positive thoughts your way.
I had a hysterectomy and oophorectomy with removal of a cyst that was sent for analysis. It turned out to be a rare granulosa cell tumour and I was told I was in the clear.
I had a female cancer policy that did pay out even though I have only had to have CTs and bloods as a follow up. Contact your insurers- I am sure it will be worth while.
Best of luck with whatever you decide to do about this matter.
Hi Jezz, i had a mucinous cyst borderline 1c in 2016, i had radical surgery including omentum and apendix. I was still under follow up when In march 2018 i was found to have stage 4. I do not wish to scare you but if you are not planning children I would have the surgery. My borderline 1c turned into high grade serious on my peritoneal wall and right groin lymph node and now incurable. I wasn't offered chemotherapy after the original surgery but if I had it probably would have saved my life. I was 48 at the time of the original surgery. Mine is a cautionary tale and i wish you well, sending best wishes Jane x
I'm so sorry this has happened to you, but chemo is not recommended for genuine Borderlines. They grow so slowly that chemo does more harm than good. You would have to have so much chemo to destroy the Borderline cells that it would kill off too many normal cells. Statistically, chemo for Borderlines has killed more patients than it's cured.
You've been dreadfully unlucky, but I think the problem lies in a misdiagnosis at the beginning. They missed the microscopic malignant cells on your abdominal lining. Almost all Low-grade tumours also have Borderline cells, but once they find invasive cells the tumour is re-classified as a Low-grade malignancy. I think it's unusual to go from Borderline to High Grade. Some Borderline tumours are in the process of mutating into cancer, but the overwhelming majority stay Borderline, even after growing for years, as mine must have been doing, given its size.
I don't know if this is helpful or not. 'If only's' are so difficult to live with. I'm not even sure that a second-opinion on pathology would have changed things for you, but if they'd given you chemo on a 'just in case' basis they would have been going against the guidelines.
Hoping your treatment is going well. There do seem to be more options for chemo with high grade than low grade.
Hi Sue, they were my thoughts exactly. I believe I was miss diagnosed and the reason being my cyct was 29cms in diamiter and it obviously ruptured. I put it to them that maybe not enough samples were taken but they disagree. They must have an idea what went wrong but they are not for sharing, they just say I was unlucky. They are probably afraid of legal action. I just wish they had been honest as i still feel that they are hiding something. Also during my follow up I was never scanned. Just physical exam, reporting of symptoms and CA125 which remained normal until i was symptomatic of the recurrence. Thank you so much for your input, it is greatly appreciated. Jane
Hi Jane. Did you have abdominal washings during your surgery? I'd have thought they'd be easier to test? But then I had a biopsy of free fluid pre-surgery, which was 'inconclusive', which I guess means they didn't find any cancer cells, but they couldn't be 100% sure there weren't any.
Are they sure that the abdominal tumours are related to the cyst? It's possible to get 2 different cancers at once. I know someone who had thyroid cancer and when they checked her lungs for surgery they found lung cancer - no connection.
Btw, I go on the American Inspire site and there seems to be research saying that mucinous ovca responds better to bowel cancer chemo drugs - but I'd have thought the Marsden would be on top of that.
Hi Sue, not sure about washing. They seem convinced from the pathology of both surgerys biopsies that it is a reccurence. I will have a look on that site, many thanks x
Hi, Jezza! I am not a medical professional, but, I've been through enough and have read alot which makes me somewhat of an amateur with some knowledge. Sounds to me like you will be just fine. Have the other surgery since ovaries in our bodies tend to turn on us. The fact no one mentioned malignant to you should be a relief. You are one of the lucky ones who, at least, got an early warning. Most of us get diagnosed at Stage 3. Only because symptoms surface when it's too late.
I wish you the very best. Very happy for you. Just do what the doctor says. If you don't like what he says, you can always have that second opinion.
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Confused good news!!! 
