Borderline Serous tumour

[lisab2016]

Hi. I am new and just asking if anyone has had a Borderline Serous Tumour? I had a Cyst removed and ovary in November which I was told was Dermoid. However just before Xmas I was asked to see a specialist at my local Macmillan centre as the Cyst was in fact a borderline Serous Tumour. I was told I need a full hysterectomy which is scheduled for the 18th Jan. At the time I was in shock and wish I asked further questions. I am having a CT Scan on Wednesday to check if theres anything untoward. Has anyone had a serous tumour or hysterectomy? I'm only 36 and am worried about menopausal side effects.

[Maus123]

Lisab2016, I'm sorry you're in that situation.

I had a mix of non-invasive serous borderline tumours that had spread beyond the ovaries and some 'proper' invasive serous low grade cells in the ovaries.

The way I understand it, borderline tumours can evolve from cysts and low grade invasive cancer can develop from borderline tumours ; the primary treatment for borderline is still surgery. So you'd probably want to be sure it is thoroughly resected from any affected areas even if it's not invasive/not 'real' cancer (and I think that's what your doctors are aiming at with the hysterectomy.. minimizing risk). Despite just being borderline, the spread tumours caused me a number of uncomfortable symptoms like ascites, digestive problems, not eating right and being short of breath ... and I was glad to be rid of them.

That said, you're quite young so you may want to raise the question of surgery that preserves fertility for you with your doctor/oncologist, if you want to have children in the future, if that is an option in your case.

My surgery was likely more extensive than yours because my tumours were located in various places but it included a total hysterectomy at age 46. I got hit by menopause symptoms right after the surgery and still am (hot flushes/night sweats) but have to say that for me, they seem fairly minor. I'm not standing in the middle of the office dripping sweat ... just feeling momentarily hot for a few mins and at night, I may sweat some.

For impact of surgery, it depends on how it's done i.e. will it be keyhole surgery or a more lengthy incision. Guessing key hole, in which case you'll be up and about fairly quickly.

Borderline is still a scary diagnosis when you first hear it so I reckon you're quite worried right now. That said... as far as OC / cancer news go, borderline felt like 'ok' news to me as those tumours may not come back after surgery at all or at least not for a long time, are slow growing and usually non-invasive (my surgeon said that helps to scrape the tumour cells off without damaging the underlying organs). Ovacome have a great fact sheet about this type of tumour: ovacome.org.uk/media/14666/...

Sending you positive vibes and keep us posted. The community helps a lot with digesting scary news and dealing with uncertainty or just sharing a virtual hug.

[lisab2016 in reply to Maus123]

Thank you Maus123 for your reply. It has been a great help to me.

I already have 2 children and struggled to have them as I have endometriosis and polycystic ovaries too. So I am lucky in that sense. I think because the diagnosis and various appointments have all come at once, I really haven't had time to digest it all. The operation is a total hysterectomy and they are taking the oementum (fatty tissue) also. I have read the Ovacome Fact sheets and they are very reassuring .

[Decca4Ever in reply to lisab2016]

Hi Lisa,

I had a Borderline Mucinous tumour removed in Aug, 2014.

My situation was different from yours psychologically since my local hospital thought it was cancer - 'no surgery, just chemo' - so when I was referred to a gynae-onc, and he said that he thought it was benign and would be operating to remove x, y, z, I was so relieved he could have cut my leg off and I wouldn't have objected. Also, I was much older so no worries about surgical menopause. They remove the omentum, just a thin fatty lining - I think like the outside of a haggis - because it's where any stray cells migrate to first.

It must have been a shock for you to be called back for more surgery, just when you thought it was all done and dusted. I hope things are settling down a bit now that you've got a date for surgery and you can take your mind off it with sorting practical things. HysterSister is a v useful site for that.

Can't add much to her v helpful post, except to hope that you will be having a Gynae-Oncologist perform the surgery. Those extra years of training really do make a difference and an expert will be able to have a good look round and reassure you. It's only a very small percentage who have further problems and the stats are vastly better than for ov ca. So much better that many doctors now don't use the word 'cancer' or 'malignancy' to describe it. But they can recur, so it's better to remove the most likely sites for recurrence as a preventative measure.

I'm being monitored for 5 years, but still counting my blessings. Borderlines are more common in young women, but still relatively rare - 4 in 100,000.

As far as the hysterectomy goes, it is quite a long recovery and you will need to rest and follow instructions about not lifting etc. But, even at my age and after a vertical incision, I was never in any pain and only in hospital for 3 nights. I could do everything I needed to do, just not for very long. Lots of lying down on the sofa, so I hope you will have help from your family.

Best wishes!

Sue

[Maus123 in reply to Decca4Ever]

Fair point about surgery. If it's a laparatomy e.g. long vertical incision, it does take about 6 weeks settle down afterwards or it did for me anyway (although everything started improving dramatically from week 2)... and can still be noticed a little 3 months after. Like you, I found pain levels to be not too bad. But one of the annoyances I wasn't prepared for was that wonky feeling of your organs sloshing around a bit in your belly which I guess was due to the missing omentum so not much holding them in place in the beginning. Suddenly turning around felt like a hippo cornering at speed on an icy surface..

[Uniqueone]

Lisa

I had borderline serous tumours. They started in one ovary and I had that taken out keyhole. Then it was found in my other ovary and so I had the operation you are describing in October. I had a midline incision as it lets them have a better look around and he did find som non invasive implants in my pelvic wall which were also removed. The pathology showed it in my omentum too which had by then come out anyway.

The Operation is a big one, no doubt about that, and you have to be prepared to rest a lot, but I am three months on and have no pain at all and am back to normal from that respect. I did find surgical menopause a bit brutal to be honest and I had been really negative about having a hysterectomy for that reason - I was very upset that I had to have one. Having said that, I think the symptoms are better or maybe I am coping with them better now. I would thoroughly recommend a Chillow for keeping you cool at night. I keep it on the floor by my bed and when I wake up with a hot flush I drag it on to the bed and lie my head and upper body on. It and it's great.

On HRT, if you are interested in that, I was originally told as this isn't proper cancer you will be able to have it. So I was counting on it, but my surgeon got my removed tumours checked for oestrogen receptivity and found that they were receptive, so I can't in the end have it, which was a big blow to me, but I am coming to terms with the fact that I am just going to have to get on with it.

I have a follow up scan Jan 13th and results 18th, so will be thinking of you that day. Courage. You can do this.

M

[indego]

Hi Lisa,

There's a great group on Facebook for Borderline Ovarian Tumors

facebook.com/groups/1547381...

My first tumor was borderline, but it was mucinous so the treatment was different.

(No hyst, just removal of the omentum, some lymph nodes, and my appendix.)

The women in the group are pretty much split between borderline serous and borderline mucinous.

The lady who runs it has also gathered a lot of articles and research about Boderlines, and I found it really helpful

[lisab2016]

Thank you everyone for your comments and well wishes. Its been a great help to me and my husband (who has been more worried than me) x

[Han1606]

Hi there, I currently have a 3rd borderline serous tumor. I've had 4 previous operations by laparoscopy since Aug 13 and all have been fertility sparing since we hoped have another child and complete our family. I have part of one ovary left and I have a normal cycle and appear to be ovulating. I'm 40. I've been under 2 closely linked teams at the hospital I'm and have been offered IVF, although this will be private because I already have a daughter. The aim is to do egg collection, embryo freezing, surgery to remove the final ovary and which will induce menopause. I'll then be on HRT. I have been told that removing the uterus isn't necessary. Hysterectomy is very final and any questions you have should be answered before your surgery. We haven't made a decision which way to go yet and there seems to be very little research still about borderline tumors. I wish you all the luck with your operation and recovery. Do ask if you can be referred to an HRT specialist because you are young going into the menopause x