I've just been diagnosed with borderline ovarian tumours - has anyone else had this diagnosis, or know about it?

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[wendydee]

Hi Kikker

It's such a shock to hear the diagnosis, isn't it! Hope you're having the treatment and support you need. I was diagnosed with borderline OC, the good news is that it was nearly 8 years ago now and so far all's well. Have you had any treatment yet? I was given a full hysterectomy, ovaries, fallopian tubes and the omentum all removed and tested for signs of cancer. They found it in both ovaries and a little in the omentum ( I'd never heard of that bit of me!). I was lucky to be operated on by a really experienced surgeon, he said to me after the op tht he thought he'd removed all traces of cancer. i was monitored monthly by CA125 blood tests and after twom months had an oncology appointment when the gynae/oncologist said I didn't need radiotherapy or chemotherapy. As I say, they all seemed to be right cos I'm still well. i still have a yearly check-up if I want it, but I opt for just a CA125 test. I'm still in touch with my specialist gynae cancer nurse. She's a great source of strength if I have any queries. Do let me know what treatment you're getting. The outlook is good, though for borderline cases, so keep strong!It's good that it's been spotted early.

All the best, Wendy x

[dundeegirl in reply to wendydee]

Thanks for your message Wendy, it's great to hear from someone who's had the same diagnosis, it seems to be quite a rare condition. You're right it was a shock, particularly I think because no-one in my family had had cancer before, but I think it's really sinking in now, and in a way, I'm just really grateful to my GP for being so vigilant and referring me to gynae in the first place! Here in Dundee the treatment seems to be very good, I have an operation date in just a bit over a week and have met my CNS who is lovely. The gynae consultant has been good throughout, I think it was as much of a surprise to her as it was to me. As my husband and I have no kids yet and really want some, it's been a 'double whammy' for us, as it appears that I have masses on both my ovaries. We're preparing ourselves for them to remove both my ovaries completely, but the hope is they might be able to leave a little of one. In the meantime I've been put on IVF treatment to save some eggs before the op for trying for a baby later. My work have been really great and supportive too which is so reassuring. But I've been finding looking at the Ovacome website really helpful, I love all the applications and am going to start using the Inner Circle to keep friends and family in the loop, it's such a great idea - I never realised it might be tiring just telling people the news! It's lovely to feel part of a community also. Thanks again for your message!

Catherine ('Kikker' - I changed my screen name to my real name, less complicated!)

[wendydee in reply to wendydee]

It's so good that you're having such support, Catherine. Please add me to your inner circle at some time. I'd like to see how things are going with you. I'm glad you're being given the chance to freeze some eggs. it's hard to face that fact, at the same time as your diagnosis, but your main job is to get on with the op and get strong again. My op was really ok. I used a bit of morphine for a day afterwards, just in case, but I can honestly say it was pain-free. You just have to follow all the advice of all the nurses. Your hospital sounds as if they're on the ball with all that. The CNS is such a good support. As I said, mine still is, even after nearly 8 years. I found it was as hard for my husbands as it was for me. Mine was brilliant --positive and supportive throughout, but it's so time-consuming, dealing with all the well-wishers and stressful to see you going through all this. I'm sure the inner circle idea will be a big help.

We never had children. We'd tried since I was about 30 and had lots of tests, but the medics never found anything specific that was preventing it, just a few small problems. It just never happened for us. Now we're retired and really enjoying life - travel, learning new skills, volunteer work with Ovacome (me) and golf (him) and loads of other new activities. Anyway, add me to your inner circle if you wish, or email me if you want to. Don't be afraid to ask anything, even if it sounds daft! My email is [e-mail]. I'm sure you'll be fine. At your stage of the process, I just wanted to get on with the op and the recovery. I expect you'll be feeling like that too. Don't worry, You're in good hands and the support from your hospital and Ovacome will be a real help.

All the best. Do stay in touch!

Wendy x

[dundeegirl in reply to wendydee]

Thanks again Wendy, it's great to hear from someone who's been through it and come out the other side! Reading your reply I realise how nervous I am about the 'little' things, like 'will it hurt?' Sometimes I think I focus on the big stuff in the future and forget about all the incidental questions! So I'll definitely be asking my CNS more next week. That's reassuring to hear about the pain control.

My journey to diagnosis has been focused on fertility from the start because I went to the GP because of wanting to have children and wondering if I was fit. My GP was amazing and referred me straight to gynae, but even she thought I had polycystic ovaries. I'm really encouraged though that I have this chance to freeze eggs, and I would definitely consider other ways of having a family, like adoption. I think because having kids has been my main focus, I'm more ambivalent in my heart about having the op, but obviously I know the very best thing I can do is to have it, be open to whatever the outcome is, and to embrace recovery. I also know the surgeons will be doing their best to be as conservative as possible and that I am in very skilled hands. I do appreciate what you wrote though about the ways in which you and your husband have made your lives so fulfilling without children.

I'll certainly add you to my Inner Circle, I've just got it going, it's a brilliant idea!

Thanks again for the mails Wendy,

Catherine

[LouiseOvacome My Ovacome Team]

Hi Catherine,

I had the very same nearly 15 years ago. Both ovaries. Mine was found during pregnancy, but although my overriding emotion at the time was take it all away, I just want to see my baby (we didn't know the pathology at the time) I was really lucky and they only removed the tumors, leaving me a little ovarian tissue.

The journey to another pregnancy, and the follow up was really touch and go at the time (I was 2 days from a hysterectomy when we discovered that I was pregnant again) I remember real roller coasters of emotion, but I'm glad to report that baby number two arrived safe and well, after which I had my 'completion' surgery (TAH, BSO etc) I think they felt I had skated on thin ice long enough.

Although borderline disease has elements of cancer behaviour in it, in most cases the surgery seems to do the trick. I tend to describe it as a really slow, thinking about being a proper nasty cancer, but in most cases never makes it to being one of the big boys.

Follow up was a real challenge for me. Sometimes every 6 weeks (my CA 125 was pretty unreliable) and I did have some recurrence of abnormal activity which when it was finally removed wasn't borderline, but some other cells which shouldn't have been there. After my completion surgery I pretty quickly gave up on follow up all together. I wouldn't advocate that, but it was right for me. I stated to get a Pavlovian response to trains, and even if I wasnt going to the hospital had to spend the journey on the loo!

I really wish you well with your surgery and recovery, the IVF and the journey to come. Its going to be hard at times, but you will get out the other side.

I'm glad you like the inner circle - its fantastic. And remember the nurses on the Ovacome helpline, and the Fone friends network are other excellent sources of help.

Looking forward to hearing more from you (maybe on your circle?)

Lou x

[lyndhurst]

hello, Kikker, I too have been treated last September for very early ovarian cancer- found by chance because I was having regular smears as had had abnormal smear and they found a large mass- was ultrasounded and scanned and having surgery within 2 weeks- all a real whirlwind, but no waiting which reduces worrying which was good- had the full pelvic clearance hysterectomy, ovary removal, omentum, appendix and lymphnodes and was diagnosed as stage 1, but very early so rather than chemo they did a follow up laparoscopy after 10 weeks where they did a pelvic washout and took more biopsies to check I was clear, which i was, so then put onto quarterly follow ups of CA125 with a scan at 4 months and again now- get the results on Monday.

take one day at a time- i found the specialist nurse really helpful, and she made it easy to ask event the smallest thing, and the support form others on this site is invaluable.

will be thinking of you, and do ask if you have any questions

Jo