Hi everyone, apologies for long winded message but so nice to find people who have had similar experiences and can relate, felt a little alone since Dec!
I had a laparotomy on Tues, the tumour was 16cm 8th Jan and down as a complex cyst with nhs but private scan 2 weeks later showed it to be borderline and growing a cm a week.
It was 20cm and 1.6kg when they took it out and although showing on the left it was twisted so actually attached to the right ovary!, I had ovary and tube removed and it's been sent off for biopsy. Meanwhile my ca19, ca25 and cea results have come back normal, has anyone had normal results but still found the tumour to be malignant?
I cant help but still think the worse as I had just bleeding to start with but it grew so fast i had terrible backache and fatigue over the last few weeks.
I got a loan and paid privately in the end as I could barely walk and nhs said it could be 2 more months for surgery, the gynae who did the procedure was a benign gynaecologist so there was no oncologist present but he was all I could get as I needed it out and in fairness he did an awesome job as there was no spillage.
Its mad how many different types of cysts there are and i dont feel there is enough awareness out there, after reading about the re occurring i wanted a full hysterectomy but my gynae said until he knows for sure whats inside he didnt want to be that hasty! I defo dont want another one in a few mnths tho am already anxious about nhs not treating it fast enuf and not having anymore money to go private 😕 x
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Sabbyroo
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And so sorry that I have no experience with borderline, so I cannot give you any advice..
All I can add is that it is NOT acceptable that you had to go private to have yourself cared for properly.
Where do you live, that this can be so?
Hopefully, you will receive good news when all your tests are finished, but if not, I assume you will be referred to a competent and caring team at a good hospital near you.
If not, you will have to have your GP refer you to s better cancer centre a little further away.
I am very impressed at your initiative, but horrified and angry that you were forced to take matters into your own hands, taking out a loan, etc.
I am sure one of the ladies here will have some helpful advice.
Take it easy for now. Healing after a Laperatomy, especially after removing such a large cyst, is not a walk in the park.
Thanks for your reply I live in South Wales, I called the booking centre every day after the go's urgent referral on the 11th Jan but the earliest apt I had to see a gynacologist was the 4th April!
I ended up in a and e with pain which was found to just be constipation and was told I would be put on a list for urgent surgery, the following week I rang and still hadn't even gone on the list! Everything just seemed to be going against me, the nhs told the private consultant on the 22nd jan that although it is now borderline because it's still low risk they would most likely do surgery april/May I don't think they even take into account the rate at which it was growing which could cause further complications. I guess we don't realise how overstretched the nhs really is 😕 i still have my 4th april apt with the nhs gynae consultant so ill go to that and hope they montitor my left ovary efficiantly xx
Sabbyroo, I was operated on twice, about 7 weeks apart, sometimes the train moves slowly, but needing to know for sure it was cancer, I fully understand. The second surgery was a complete debulking surgery and the removal of 15 lymph nodes. April I will be cancer free 5 yrs. So much advancement in this area. Best wishes that you'll be ok. ❤❤Liz
Hi, I have a borderline ovarian tumour. My cyst was found in Dec 2017 after it twisted (omg the pain), my tube and ovary removed in June 2018 and I found out it was a bit wonky in July 2018. All my blood tests were normal. I've been to to the consultant and he has assured me that bordine ovarian tumours are not invasive and I've little to worry about, although if its in one ovary, its likely to be in the other. They have have a meeting and I am getting a full hysterectomy at some point but apparently putting me into a forced menopause is worse on my health than just watching and waiting .. which is what we are now doing. Im back at the beginning of next month for a 6 month check, ultrasound and more blood tests.
I understand what you are going through. I started bleeding in May and was not operated on until October. My ca125 was 15 so they didn’t think I would have cancer. I had a 17cm cyst. Luckily I had an oncology gynecologist do my hysterectomy and it turned out I did have ovarian cancer and was staged at a 2C. I had weekly chemo for 18 weeks and have been NED for almost 3 years. I have had yearly CT’s since the CA125 is not a good marker for me. Good luck and keep after them to get you in sooner. Unfortunately you need to be your own advocate for your medical health. I’m in the US.
Yea I will keep on definately realised that over the last few weeks crikey that is a long wait! Must have been hard physically and emotionally!, I couldn't go a week longer had to finish work and could barely walk seemed to go bad all of a sudden perhaps due to the twisting. So reasuring that you have been clear for so long now, was yours thought to be a borderline cyst? My markers were 32 and due to my age nhs weren't concerned at all borderline was only picked up on 2nd private scan x
Thanks Rachel, I guess just wish he would have listened to me and taken it all out at the time but I do understand there are risks with my age, my bloods were 32 back in December, I did them again before they took it out so I could keep an eye on my markers but they said they were normal and wouldn't give me exact reading, I think I would be happy with 3 monthly checks it was just he said they would be annual on nhs! Seems mad with the last cyst growing 1cm a week lol x
I’m sorry you had to go private and didn’t get a better response from the NHS. As far as the CA 125 goes mine was 8 when I was diagnosed with stage 3b high grade serous OC so it could be a good sign or it could mean nothing. Good luck!
So sorry Delia it's so wrong that they go on the bloods kind of gives false hope when I'd rather just know, hope u r ok must be such a stressful time for u x
Hi thank you so much for all of your replies, I guess my major concern is that my consultant wouldn't take out both ovaries even though I wanted this to ease my anxiety.
When I came around he said the other ovary looked fine anyway and it hadn't leaked. I was extremely happy with this but I wonder if he did do any of the abdominal cavity washings or take any other biopsies while in there that I have read about since (he just said he looked and will biopsy the tumour), he didn't like my questions much as I had done far too much research oops, do normal gynaes do the same checks as oncology gynaes? He kept saying I should be reassured because of my bloods but the radioologist said its a mucinous borderline tumour and my bloods wouldnt necessarily be raised plus it basically says everwhere that bloods are not a good indicator for borderline tumours. Thanks
I can only echo the dismay of others in the way you have been treated. I am so sorry you have had to go through this. Why there isn’t a recognised process and response to the treatment of ovarian cysts is crazy. I’m sorry i don’t have more to add, I just wanted you to know you are not alone. Xxx
I'm a bit confused by your experience, Sabbyroo. I've never heard that it's possible to diagnose a Borderline tumour from a scan. Have you had the results from the lab yet? It's usually only a pathologist who can diagnose Borderline tumours.
I had a 22 cm tumour, no symptoms except for a pregnant profile, and was referred to a general hospital - no gynaeoncologist - by my GP. I'm post-menopausal so high risk for ov ca. I had an MRI and a biopsy of the fluid in my abdomen, which were both 'inconclusive'. I think they were looking for spread. If they'd seen tumours on other organs, they'd have diagnosed cancer and I'd have had chemo before surgery. I was transferred to a gynaeoncologist at a major cancer centre, because they had to assume it was cancer and I needed someone qualified to decide one way or the other. My consultant there originally thought it was Benign, but the Lab came up with Borderline. They are classed as not malignant, cured by surgery, but a small percentage can come back as cancer, so I'm being monitored for 5 years.
I had a full debulking - because I didn't need my uterus and ovaries any more and they needed to rule out cancer. At your age, there's a lower risk of cancer, and they would want to preserve your fertility if possible. But it doesn't sound to me as if you've had a definite diagnosis yet? I'm wondering if there was some confusion between 'borderline' and 'Borderline'. Perhaps it was to do with how complex your cyst was? Whether it was a 'simple cyst' - just a bag full of fluid or a 'complex cyst' with separate compartments and solid areas.
Whichever - best wishes for your results. If you do need further surgery, please kick up a fuss and demand to be transferred to a cancer centre. You need an expert from now on. You'll be on the 2 week pathway, too. Your doctor is right. Don't get ahead of yourself till they hear from the path lab. And, at your age, it is more likely to be benign or Borderline than cancer. So fingers crossed - and I hope you don't have too long to wait.
Hi thank you for the response it was the radioographer who said it was borderline he saw some blood lines through it and there were 20 tumours within the tumour plus with the growth rate that made him think mucinous borderline tumour, it was complex with some septations on first scan, he's had 20yrs experience apparently. Scared now to think it could be worse than borderline, guess I'll have to wait and then go back to gp to be referred to a proper centre as can't pay for more surgery, scary times 6 more days for results x
Oh dear - I didn't mean to scare you even more! Borderlines aren't categorised as rare, but they are unusual. I think it's about 4 in 100,000 women, but more common in young women. So I've found there's a lot of confusion lower down the hierarchy. Lots of general gynes will never have dealt with one.
I came across a Gyn-Ob Consultant the other day at the general hospital where I'm being monitored - scans and bloods - who said, 'Why are you here? You've had cancer.' Even the CancerResearch UK says, 'Borderlines are not cancer'. It's 20 years since he trained and they don't really cover cancer in the ObGyn course. It was v awkward because I didn't want to embarrass him in front of his nurse, but in the end I had to, because he was contradicting everything I'd been told at the teaching hospital that did my surgery. (I later found out that he was irritated that another consultant who's meant to be the link between the hospitals had shortened her list by moving me to his and I'd been caught in the cross-fire! So we were talking at cross purposes to some extent.)
I'm mucinous, too, with a large tumour. If it's any help, I was told that mucinous Borderline tumours are less likely to be the in the very small percentage which are in the process of turning into low grade cancer.
I don't know what NHS Wales is like, but I'd never go private beyond an initial consultation. Every GP I've spoken to says that the NHS is the best for cancer. It's where they do the research on new drugs and treatments and where they train the doctors who later might work in private hospitals. You haven't been discharged from your local hospital until your results come through. No need to go back to your GP yet. If it is a Borderline, the hospital should refer you to a gynaeoncologist if you need more surgery and discuss with you whether to keep your other ovary for a while if you want children.
Monitoring varies from hospital to hospital. It was 3x a year for me, then 2x a year, then annual for the last 3. I'm having it done at the local hospital, but if anything crops up I'll be straight back to the teaching hospital. Ca19 is meant to be more reliable for mucinous patients. Mine has been slightly raised, but on a downward trend, for all 3 times it's been tested. So last summer I was referred to Gastro - there can be a connection with Gastric cancer - and had 3 CT scans. But they were clear, and the Gastro consultant decided that the levels were my 'normal'.
Deep breaths and lots of distractions. Waiting is the pits, but it honestly is more likely to be Borderline at your age.
Thank you for all of the info, I had to go private as I didn't want to wait until may for surgery on nhs, the private gynae did seem a little reluctant and wanted me to wait but I said I'd rather pay and get it out! I'm wondering if he should have atleast taken my appendix too but I'll mention that to nhs when I see someone, guess when I have my results I will ask him to forward all of my notes to the nhs for follow up, trying to stay positive been a rough couple of days had a small infection in the site too which didn't help, I have found this site very helpful as like u say I think a lot is unknown I hope my next gynae is a knowleagable one, wishing u all the best xx
Yes - I can understand why you didn't want to wait. I'm a bit shocked that the NHS didn't fit you in earlier, with your symptoms. It must have been v uncomfortable with the twisting. I've still got my appendix, too. When I read up about mucinous tumours later, it did say they usually removed the appendix. But then I came across something that said that latest research said removing appendix had no effect on long-term results. I had my surgery in the Gynaeoncological Unit at St Thomas' in London, so I would think that they knew what they were doing. Hope so, anyway!
Not long to wait now. Let us know how you get on. Positive vibes coming your way.
Thanks that's reassuring, yes 3 more days back ache has come back just as bad as it was when it was in there so I'm starting to panic, having nitemares when I do sleep, atleast I don't have to wait too much longer, yes ofcourse I'll let you know, thanks xx
Back ache, especially when standing still, e.g. queuing, was my main symptom after my TAHBSO. No problem at all with abdomen. I put it down to the fact that my back was having to take up the slack while my abdominal muscles were healing. Even tho yours wasn't such a big surgery, they must have cut through your muscles to get to the ovary and remove the cyst. It went on for several months. Walking was fine, but I couldn't even sit at a table for long. I just went on taking pain-killers and resting flat whenever I could. But remember I had a hysterectomy, which does have a long recovery period. Also I was much older than you. So yours should clear up much sooner.
It's early days. You should still be resting for a lot of the time. It's probably hurting because you're doing more. It also takes longer than you'd think for the anaesthetic to clear your system so it was masking the pain while you were in hospital. Some people get nightmares on fentanyl/morphine/whatever they used.
My advice for the weekend is to make yourself comfy lying down on the sofa and binge on some good box sets as a distraction. Try and move around for a bit every now and then. A walk round the block for some fresh air and a change of scene would be good.
Spoke to the consultant today who read my results over the phone in a bit of a rush, he said it's a benign mucinous adenoma with borderline changes on the low end and some foci, he said he will speak to oncologist and will likely monitor the other ovary with the view to remove it nearer menopause, fab news still feel a little confused but it's all good. Thank you again for all of your support over the last few weeks xxx
Thanks Sue, I'm still struggling with the backache even sitting down for meals, almost in week 3 now tho so hopefully it'll pass soon, trying to lay down flat as much as i can, hard to rest tho as my 7yr old has strep throat now bless her, thanks for all of your help 😊 xx
Similar experience.septated cyst on left ovary. It had twisted. Had it and 2 tubes removed. Biopsy showed malignant so seeing consultant Wed to arrange uterus cervix other ovary and omentum removed.im 5 weeks since 1st operation and looking me in asap .was classed stage 1 x
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