Borderline Ovarian Tumour

Dear Sabby,

I am so sorry to hear your story.

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.

Be well,

Laura

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.

Dear Sabbyroo, I, too, am an Ovarian Cancer Survivor. God willing, I remain so!

After total abdominal Hysterectomy in August my cyst on left ovary removed 12x10cms.

Histology came in Sept. - my 9/11.

Malignant AND borderline

I tried to think of an apple with a bad bit in it.

Staged 1A (one ovary) within capsule

Grade 1 (low).

Prior to op. My CA 125 was 22 (normal).

No chemo

Just surveillance 3-monthly

I hope yours just Borderline or benign.

As well as Hysterectomy had both tubes, ovaries and omentum removed

I am well past child-bearing age

Don’t compare y’self to me

Histology tells the tale

RacelFaye

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!

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.

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.

Hope that helps.

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