Feeling a shocked,stressed and confused at borderline diagnosis, any advice?

I am 38 and had an ovary and cyst removed 4 weeks ago, I had another cyst removed from this ovary a year ago which was fine. Had my appointment where initial histology was discussed and was normal but then got a call out of the blue this week and was asked to go and see the consultant the following day who informed me that I had borderline cells within the cyst, my case was discussed at case conference at the local cancer hospital today and I am being sent for a CT scan and recommended for surgery, but the type of surgery will be decided after scan results. I am very confused, I didn't think I had cancer just some abnormal cells which had been removed yet I am being treated by the cancer centre now and as I am 38 if I have my other ovary removed I will start the menopause, all very scary and confusing! Can anyone offer any assurances or guidance on the sorts of questions I should be asking?

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  • should have also added that my CA125 was low at 24 and when I had the surgery to remove the cyst the mucous contents spilled into my abdomen which is also making me slightly nervous, although the consultant said it shouldn't affect the outcome, but have read this could have helped it spread.

  • The Cancer Research website is really useful for help on the sort of questions you might want to ask.

    cancerhelp.cancerresearchuk...

    They have pages with questions for all sorts of aspects of your diagnosis and treatment. I was in a similar position to you a month ago, diagnosed with a tumour out of the blue, and have spent the weeks waiting for the results of the CT scan and blood tests with a piece of paper by my side so that everytime a question popped into my head I wrote it straight down, which I found helpful to stop me dwelling on the possibilities...then I went through the questions on the CR website and added anything that I thought was useful that I'd missed. I took the list with me to my next appointment with my surgeon which helped me to feel in control.

    I do hope everything goes well for you, you seem to have been diagnosed really early which is really good news in terms of treatment.

    Best wishes

  • If its any consolation borderline ovarian cancers are totally treatable and have a really good prognosis. I'm only a couple of years older than you and I have recently had a full hysterectomy. I found it helpful to talk through my options with my CNS but one of the questions you might want to consider is 'what would happen if I didn't have surgery?'

  • Hello, I can kind of empathise with you as I had a Bordeline in 2009. Only discovered when I went to A&E with a ruptured Cervical Polyp. I, like you, was petrified when I was referred to Cancer Hospital but believe me they are only doing what is best for you. Oncologists know cancers inside out and will give you the best treatment possible. I was given the option of them going in to see what was there and then making a decision or having all taken. I opted for the 'all' as I was reaching 50! I had TAH, Oomenectomy and both ovaries and lymph nodes on one side. Sounds scary but I was up next morning and home within 5 days. My CA 125 sat at 87 at the time and now (my GP very kindly does it 4 times a year and it gets done at hospital annually now) sits at 10 - 14.

    I know you are much younger than me but try to think positively - we are all here to help you get thru this. Contact the nurses on here as I have heard they are great!! Will be thinking of you and would say take a notebook everywhere with you and jot down any questions however trivial they appear to be. If you can don't keep this to yourself as there are many many people out in the world who have been where we all are and perhaps can offer a tiny wee bit of advise!

    Sending you hugs,

    Sheila X

  • Hi there AMK,

    I feel I can empathise as I was diagnosed (totally out of the blue) last year at age 33 with borderline tumours on both ovaries. Being 'borderline' was confusing but there was a good factsheet on the Ovacome website, perhaps Ruth the Ovacome nurse can help too? We are a rare breed us young borderline ladies so I really do empathise! Unlike yourself when it was discovered both my ovaries were affected, but it was still a huge shock to go from my GP saying I might possibly have PCOS, to being told I would need to have my ovaries removed and perhaps more. The positives to hang onto: As Scaredy Cat says, borderline disease has a very good prognosis. It sounds like you have been diagnosed really really early, which is great (although I know it doesn't feel it!) Borderline doesn't seem to grow and spread as quickly as malignant cancer. And even if it has spread, once the main tumour is removed, any 'implants' can sometimes just disappear. (That's what happened for me last year - my gynae told me they don't know why it happens, it just sometimes does).

    And given your age, the doctors should be as careful as possible to preserve your fertility - the literature on borderline backs up 'conservative' treatment of borderline in young women, i.e. only removing what is absolutely necessary at the time. They have very mind-blowing techniques for doing this during surgery - the surgeons are very very careful nowadays not to remove what they don't have to.

    Are you being seen now by the gynaecologist or gynae-oncologist at the special cancer centre? It is really good you have been referred there as the oncology specialists should have the knowledge to treat you more expertly than a local hospital general gynae unit. The MacMillan website also has a general list of questions I found it helpful to have with me to ask - you can just print it out. You should also hopefully have access to a CNS (Clinical Nurse Specialist) - they can really help explain any jargon and act as a kind of ambassador for you.

    If I were you I would ask the doctors exactly what they are aiming for with the surgery - is it diagnostic, will they just take a biopsy? Given your age and the fact the cells are borderline not malignant, they should tend to be conservative in their treatment and to try to spare your fertility if that is what you wish. IF it came to it that the doctors wanted to remove the ovary, it should be possible I think to have IVF treatment first - that is what they did with me, even though they were keen to operate and remove the tumours, they delayed long enough to stimulate my ovaries and collect eggs. The other thing is that being conservative, even if they do operate on your ovary, they may aim to leave you some of the ovary - this would mean there would be a chance to stimulate your ovary if you wanted IVF in the future. I'm not sure, but I imagine it also means you do not start the menopause.

    I'm really hopeful for you that you will get some answers to your questions soon and you're in my thoughts. You are not alone and remember we are all here for you on the Ovacome site.

    Love from

    Cat xxx

  • I realise that you must be feeling shocked and scared and all of those emotions, but if it is borderline, you have a good chance. I had borderline OC in both ovaries and omentum in 2002, and had it all removed. I didn't even need chemo and I am still well (fingers crossed!!! ;-) )

    Your care team will be recommending the very best for you, and I really recommend ringing the nurses at Ovacome, or the nurse specialist at your hospital. They are so experienced and sympathetic. Ovacome Number is on their website.

    All the best

    Wendy xx

  • thanks for all your responses, they were very helpful. I am booked in for my CT scan next week, and am keeping everything crossed that nothing else is found.

  • will be thinking of you! let us know how you get on.

    love from

    Cat

    xxx

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