I had a borderline tumour on one ovary removed at the start of the year along with the ovary and tube (unilateral salpingo oopherectomy). I then had a follow up scan which showed a tumour on my other ovary (it wasn't there when I had the first operation). Following that I had a laparoscopy to fully stage and biopsy everything. It looks like I have a second borderline tumour starting on my other ovary. The abnormal cells only showed up on one slide so really small right now.
I am going back to see the surgeon again to confirm as he has asked for a second opinion on it, but he is suggesting if confirmed, extensive surgery in the form of a midline TAH, omentectomy, appendectomy and the removal of various other things I never knew I had. 7-10 days in hospital and three months off work.
I have two questions. One is is this standard protocol for Stage 1b borderline tumours? Has anyone else had this or is there an option to be less aggressive and just, for example take out the ovary? i just don't want to do the radical surgery and recovery time if it's not really really necessary. Have any of you been treated like this for a second borderline tumour or been offered alternatives?
Secondly, those of you with borderline tumours. How do you describe it to your friends/family? It's a tumour, but it's not cancer, but then it's not quite benign and I don't want people to overrate it or underrate it either. I tend to say just tumour and not use the word cancer, but then everyone assumes I have cancer though no-one much likes to use that word! I don't then know what to say and I don't want to launch into a long explanation. How about an 'odd form of tumour that isn't malignant, but it isn't exactly benign either?'. What have you used that works?
Thank you!
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I would really recommend TinaB's suggestion of the Ovacome leaflet. I was initially (mis) diagnosed with a borderline tumour and found it by far the best explanation (I did quite a lot of looking too! ) I emailed it to close family and friends who were struggling to understand what it was and it seemed to help! Best wishes Sx
Hi I had borderline tumours stage 3a in November 2012. I had a radical hysterectomy because mine had spread. Borderline tumours don't tend to recur but they can, as has happened in your case and the reason they want to do radical surgery is so they can remove the other parts it can come back to. I also had part of my bowel removed during surgery and although I was told I would be off work for three months I went back just after eight weeks as I recovered really well from surgery. I found it difficult to explain borderline tumours so I said I had a tumour that wasn't benign but it wasn't cancer either as it wasn't invading tissue. My advice would be to have the surgery. X
I think it depends on your age and whether you've completed your family. Also, on the type of Borderline tumour. Serous are more likely to recur than Mucinous and also to mutate into low grade ovarian cancer. What happens to one ovary tends to happen to the other, but only a small percentage progress beyond that.
I was post-menopausal and had no further use for my reproductive bits, so I had the full Monty. I was also at higher risk of it turning out to be cancer, and it's really the pathologist who does the diagnosis. The surgeon can't really tell mid-surgery. They didn't want to have to go back in and remove my uterus etc. if the lab results showed cancer. It was a Mucinous Borderline, 1c, and I'm v glad I had everything done at the same time. Now just monitoring for 5 years.
With younger women, it's often possible to leave ovarian tissue and the uterus so they can have a chance of conceiving, because Borderlines grow slowly and are non-invasive. But even for them, it's usually recommended to have full clearance once they have completed their families, because Borderlines are notorious for recurring many years later down the line.
So, to be on the safe side, you do most likely have a hysterectomy etc somewhere in your future. I think I would probably do whatever my consultant recommended to minimise my chance of further problems.
Regarding the surgery, I was only in hospital for 3 nights - for a 22cm tumour - and everyone was surprised how well I recovered. I could do everything I needed to do, just not for very long. It was really just a question of building up my stamina again. Depending on your job, you might be able to go back to work sooner than 3 months.
Yes - the whole cancer/not cancer controversy. I go for the 'not cancer' line myself. It's only a small percentage of a small percentage who go on to have further problems and the prognosis stats are so good it doesn't seem right to put myself in the same category as those with full-blown ovarian cancer. I'd feel a bit of a drama llama, but that's just me and my situation. I feel I haven't earned it, if you see what I mean. Those who are unlucky enough to have recurrences in difficult to reach areas, leading to serious health problems, would probably take a different view.
TinaB has made an excellent suggestion. I usually just say, 'It's controversial what to call it. The WHO changed the name from Low Malignant Potential to Borderline Ovarian Tumours, because so few became malignant, but some doctors still use the old terminology.' And 'tumour' just means a lump.
Decca4Ever, thanks so much for taking the time to respond to me at length and so helpfully. I am 48 so I think the full Monty whatever it is he recommends looks like the right thing to do. No-one is ever going to volunteer to extensive surgery are they, so I just want to be sure it really is necessary.
Nice to hear such a positive outcome for you. Hoping for the same for me.
Totally get you with the drama llama thing....it isn't quite cancer and I think it isn't right to put myself in that category, but it isn't a non-event either.
I had something similar to you. I had a laparoscopy last November to investigate a cyst on my left ovary - which was found in a trans-vaginal pelvic scan in June due to having irregular periods . When they went in they found cysts on both ovaries, plus evidence of endometriosis - which I was unaware of. I then had a CT scan in November and they diagnosed borderline tumours and I had a bilateral Salpingo Oophorectomy in January. They were unsure if they were going to have do the BSO or a TAH due to the endometriosis until they went in - how easy it would be to remove what they needed to - they did it all via keyhole surgery and I was only off work for 2 weeks.. They continued with the borderline diagnosis and introduced me to the cancer nurse and I have check ups at the oncology clinic so they can keep an eye on it; but it's not cancer and I even now the definition of what they are has changed slightly from borderline to something else (a slight downgrade).
I too struggle to say exactly what was wrong - because it is on the cusp; but because they have removed everything and I'm not having any chemo or radiotherapy. In all the stuff I've read about it they do say that borderline tumours are difficult to explain because they lie in no-mans land they are neither cancerous nor non-cancerous. Sometimes I think the term pre-cancerous may be better way to describe them as that is what they are/were. I also feel a bit of a fraud describing it as cancer considering what other friends and family have been through with the disease and that I have got off so lightly - I call it having some dodgy cysts now, though only go into detail if pushed.
I think it is down to you and how much you want to let friends know. It may be easier to go down the softer route until you have more information.
I know it's not much help, but it is down to you and how you want to describe it. I think it better if you don't use the C-word as that can affect your mindset and use any other description you want. I find that if I think of it as cancer I feel depressed and low, when really there is no need for me to feel like that.
I hope everything goes well for you and wish you all the best
Thank you so much. We do sound similar! I hope you are doing well now. I am curious to see that you 'just' had BSO as I would so much prefer that to a midline TAH which is the current proposal.
Appreciate your taking the time to help me. Thank you x
I had a borderline tumour back in 2010 when i was 51. I had total hysterectomy, appendix and omentum removed. It had not spread so no chemo and no more check ups. However it did come back as OC in my lungs.
If the fully monty is advised go for it but make sure you are monitored afterwards.
I was in hospital for 3 days and off work for some time as i had other health issues.
Good luck with whatever you decide as it is your decision but insist on monitoring xx
I was really sceptical about having a TAH and after chatting with my consultant we agreed to be conservative and just remove ovary tube and cyst. The histology was different to yours showing cells encased within the cyst so the next step was a TAH so I ended up with two operations because everyone was convinced it was a simple cyst. What I do know now is the type of tumour whether borderline or otherwise is key to deciding what is next. I wish I had known a little more about that rather than just stage and grade
Hysterectomy took about 12 weeks to be properly on the mend plus I had an infection in the wound. Don't Rush recovery however tempted you may be
Hi there. I had a complex cyst which was found on my left ovary whilst I was pregnant with our daughter. It was removed a year after she was born and this was a borderline serous tumor. It had burst at some stage and implanted into my ovary (grade 1b). Six months later it reoccurred on the left ovary and I had another laparoscopy to remove plus an omentectomy (which came back benign). I then had another operation 6 months later to remove another borderline tumor on the left ovary plus the ovary and Fallopian tube. Then I got one on the right ovary and had another operation to remove the tumor plus about a third of this ovary. This has all been fertility sparing surgery since we had hoped to have another child (and still hoping). I'm now 40. Ultimately I'll need a total hysterectomy to minimise the risk of it returning and have been advised this would be done via laparoscopy too which Is less invasive and better recovery. Could you ask whether mid line incision is the only option? My mum died of cancer 5 days before my first op and just before my daughter turned one and life turned upside down for a while. It was difficult explaining it to people and to work (!) since as it's not cancer and not benign. For me, calling it borderline ovarian tumors didn't mean anything to anyone so I've more recently called it operations to remove borderline ovarian cancer which I think is fair and accurate? I think it's clear it means it's not cancer but indicates it's serious enough to need an operation quite quickly? I've been stable for 7 months now which feels wonderful and life feels good again. I've a follow up scan in a couple of weeks so fingers crossed. I feel very lucky to now be under the care of a fab consultant and team and trust them completely. If I get a other tumor it's the end of the road in terms of fertility and will need the hysterectomy. They don't want to wait forever but on the positive side they feel it's perfectly ok for us to try and conceive as they are confident they removed the remaining tumor. Good luck to you all xxxx
Goodness you have been through the mill! Thank you for sharing your experience, it does help.
I am going back to see the consultant on Wednesday and it can't come soon enough as I am fed up of being in limbo and that ghastly waiting for results and a new turn in the road which I know many of you are so very familiar with. If they agree that I need the surgery I will ask again about the necessity for mid line, but when I asked before he said it was to give him the best possible chance for a good and hopefully final look round.
He has pencilled me in for 20 October which is just over two weeks away
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) I emailed it to close family and friends who were struggling to understand what it was and it seemed to help! Best wishes Sx
Cyto - Reductive surgery
Do I don’t I - advice needed xx
What to expect
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