Introducing me, myself & "Ripley" (my recently exorcised BOT!)

Hello everyone, I'm Jemima and I'm new here but stumbled across this wonderful site yesterday after receiving my shocking news. 4 weeks ago, I had a Laprascopic Ovarian Cystectomy (of my then 18cm, 1.5kg 'cyst') + my Mirena coil removed as it was found poking out the top of my uterus!! Yesterday, i found out my 'cyst' had been diagnosed as a 'Borderline Mucinous Ovarian Tumor'.

I am 33, married with no children. Although my amazing surgeon managed to save my affected ovary, I've now been told the ovary, tube and my appendix (!?) all need to be removed with another round of surgery and at the same time, various biopsies will need to be taken to determine staging/any ongoing treatment/ongoing checks etc. Had I been older and past my 'baby-making' phase of life, a full hysterectomy would be recommended. (*NOTE* I'm still very much undecided about having children)

I'm pretty scared. I'm otherwise fit and healthy with no known medical conditions. My husband and i (we work for ourselves) have many, MANY fantastic overseas trips planned over the next 12 months and i feel like my world has suddenly come crashing down around us.

I lost my darling Mum (who was my best friend) to primary metastatic liver cancer in April 2013 (aged just 64) after a short 7 months battle. So it's naturally bringing back a few of those feelings of dread after her diagnosis (although, for her, it was curtains...stage 4...palliative care only from the get-go).

I'm hopefully meeting my (new) Gynae-Oncologist next week and having a CT scan and will book my surgery as soon as possible. I've read a few posts on here from those who have had the same/similar experiences and i'm not sure i'm asking any particular question right now, i just wanted to say 'hi' and will gratefully accept any words of advice. My head is a'buzz with questions and worry....

17 Replies

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  • Just to say 'hi' and that I am sure they will do all that is possible to preserve your fertility. I am older (43) and I am having a hysterectomy because of an ovarian tumour ... but the doctors asked me if I wanted more children they would have done different surgery to enable that. Don't lose heart - take one stage at a time. Thinking of you. Kate.

  • Thank you so much for your reply Kate...it's so wonderful finding a community of support. I wish you the best of health for your upcoming hysterectomy and a speedy recovery x

  • Hi Jemima - isn't this forum great? I'm glad you're feeling fit and healthy - that's so important for you both in terms of your physical and your psychological resilience when there's an op ahead. You sound like you've had a good experience with your surgeon and once you've got the next plan-of-attack sorted, it'll feel better.

    Stick with your holiday plans for now. I even managed to take breaks through my chemo and it's good to have something to look forward to x

  • Hi minard, thank you so much for your reply - it's so wonderful to find a supportive community like this when you're hit with news like this. I know i'm super lucky that it's only 'borderline' and there are SO many others out there suffering the full shebang (and I know enough/have experienced enough 'cancer' with family and friends to last a lifetime)...it still makes you miss a breath or two though...

    Hope your prognosis/future is looking bright. I'm glad to hear you managed to continue taking trips throughout your treatment x

  • Hi Jemima.. I'm sorry to find yourself here, especially at such a young age. Once you get your head around what you are being told I am sure you will want to ask questions, have a rant etc and we are all here for you. One word of advice..... stay off the internet. Don't google, you will only drive yourself slightly mad with statistics etc. You are not a statistic, you are you. Do write a list of questions you may want to ask your Gynae-Oncologist because I can tell you now you will forget once you are in the room lol. I'm sorry to hear about the loss of your mum, I lost mine to Bowel Cancer (previously had Ovarian Cancer many years before) 18 months before I was diagnosed so I know how that feels (even though I was 47 and she was 72) - age makes no difference does it, it's your Mum and as you say our best friend. In the meantime I am sending you a big virtual hug. Hope all goes well next week. - oh and by the way keep those travel arrangements in place! Kathy xxx

  • Hi Kathy - thank you for your reply. I'm desperately trying to stay off Google, but for me, knowing everything I can about things really does help (when my Mum was diagnosed, I became an Oncologist over-night and by the end i knew more than most of her medical team!)

    I plan to write down plenty of questions though for my meeting with my Gynae-Oncologist...although when I did this for my first op, i completely forgot to get my list out!

    I'm sorry to hear you lost your Mum and then was diagnosed yourself. I hope your journey through this maze is one of much health and success.

    So far, all travel plans remain...i hope it stays that way! They are one of the main reasons i've held off having kids!! x

  • Welcome Jemima, the ladies here are just marvelous, they are not only fighting their own battle but take time out to help other's (like me!) and take it all in their stride. Don't give up! ((((Jemima))))

    Damelza

  • Thank you Damelza - appreciate your reply. All the women (& men) here are amazing. I'm fortunate to have found this community. Wishing u much success in your own journey. I look forward to being able to contribute as well as benefit from this site xx

  • Hi Jemima, so sorry you've had cause to find the site but there is a lot of support and experience here....

    Although many will say stay away from Dr Google, I think many people need good information.

    Ovacome have (what I thought) was the best information about borderline tumours and also have useful suggestions about what to ask at Drs appointments. They also have a nurse-led helpline Mon-Fri for any questions...

    Target Ovarian Cancer have a great booklet called 'What Next?' which can be downloaded and / or ordered as a hard copy (definitely worth getting)

    And finally... There's a great booklet specifically for younger women which you'll find a link to on the right of this page. It was put together by both of the charities above along with Ask Eve and Ovarian Cancer Action with a lot of input from women facing similar concerns etc as you. You can download it from each of the charities websites or again order a hard copy..

    You'll find plenty of good responsible and balanced information which you can then use as best suits you....

    Wishing you hope and strength, Sxxx

  • Thank you Sunfleury for your reply and for your reading suggestions. I found the Fact Sheet available on here most useful and it cleared up a few initial questions I already had. I know that in all honesty, I won't know the full picture until after this second op and once all the histology results come back, but this first round has been shocking enough. I've also got to get my head around actually losing my right ovary after all (and my appendix...which up until now, has never caused me any concerns)

    And none of this is made any easier because of this large hematoma i'm currently living with after my first surgery which is making me feel pretty rough indeed :-( Feeling a little 'oh woe me' which is ridiculous really (bearing in mind what most women on here are currently experiencing)...

    I appreciate you taking the time to respond x

  • It's a pleasure, I also found the sheet useful especially to give to friends and family who wanted to understand. Do keep posting as there's lots of support here!

    I alsohad a mucinous one (found about four years ago and am NED- no evidence of disease) though mine was a mixture of borderline and grade 1 cells. It's standard treatment with this type to remove the appendix (like you, I'd never had any problems with it- but haven't had any issues with its removal either!)

    Don't ever feel badly for whatever you're finding tough & do hope that you are soon recovered from this op.

    Very best wishes, Sx

  • Hi Jemima

    I don't often reply on here, just tend to lurk every so often, but saw your post and it struck such a chord with me so thought I'd say hello! Sorry that you've found yourself here but, as you've already seen, it's an amazing support in a time of such worry. Just knowing that other people are out there is a comfort.

    I was diagnosed 5 years ago (next week is my 'anniversary' actually!) with a huge borderline mucinous tumour at the age of 29. It was such a shock as I'd been so healthy previously. I only had the one surgery, which removed the affected ovary, tube, appendix and had biopsies from all over the abdomen as the tumour was so big it was stuck to most of them. I only had biopsies taken from the omentum when I understand most people have it completely removed, so may be worth asking your gynae if that will be taken out. Thankfully the other biopsies all came back clear and I was staged 1a. They take the appendix as sometimes mucinous tumours can originate from there so it's just another safeguard. I've been having checks every 6 months or so with my gynae with scans in between plus a CA125 blood test. Had to have a laparoscopy 2 years ago to try and remove a persistent cyst in my remaining ovary but that failed due to adhesions so they're keeping an eye on it with regular scans. I know eventually everything will have to come out but that's ok with me now.

    Like you, I'm married and don't have kids and was very undecided about them, so that only added to the stress! Still don't have any but that's more to do with circumstance than the borderline and I'm finally in a place where we're hoping it'll happen soon. I also lost a parent to cancer (my lovely dad, only a month from his diagnosis) a few months after my own diagnosis. Life knows how to kick you when you're down!

    I was (and still am!) terrible for googling things and it did add to my anxiety a bit but also made me feel more involved with what was happening. Borderline is a fairly rare thing, mucinous even more so, so there's not a great deal of information out there. At the same time, try to worry about stuff as, when and if it happens. I'd read about something, think 'oh crap, that doesn't sound good!' then spend the next week in a ball of worry and stress when there was no need. You'll think of loads of questions and they tend to pop into your head at the most inconvenient of times, so try to write them down as you think of them. I have a notes section on my phone with ongoing questions to hassle my gynae with! There's no such thing as a silly question either. Ask everything as it saves so much worry. As for the physical side, I had a few wobbles after losing the ovary as my body adjusted but it soon settled down. The op itself is a big one and took some recovery but take things one day at a time and you'll be ok. Follow all their advice on what to do and not do. Definitely keep your travel plans as having something to look forward to will help you get through things.

    I'm blabbering on now! Just wanted you to know that you're not alone. Feel free to message me if you want to chat or ask anything. There's also a lovely support group on Facebook for borderline women if you would like the details of that x

  • Hi Roo31 - thank you SO much for responding to my post. Although I was sorry to hear you have experienced a similar situation at such a young age, I feel like our situations are very alike.

    I'm pleased to read that after your surgery, your biopsies came back clear and you've reached your 5 year anniversary relatively unscathed (bar your persistent remaining cyst...I really hope that gets resolved hun).

    I was also very sorry to read about the passing of your Dad :( Life really does know how to kick you when you're down.

    I think (being one of those 'need to know everything' types) the lack of information out there on these types tumours is frustrating, but i'm slowly formulating a gap in my knowledge as best I can about them. I have a whole bunch of questions already for my gynae-oncologist this coming Thurs...I hope my 30mins appointment will be enough! lol

    I'd definitely welcome to details of the support group on FB you mentioned for young women, and i'd love to keep in contact with you too.

    Thank you again for responding. I really can't tell you how much I appreciate it. x

  • Hi. I'm glad you found us. You'll get some great support on here.

    I, too had borderline tumours in three places (both ovaries and omentum) I was older than you (52) and had become resigned (sometimes relieved?) that we hadn't been able to go conceive, after 22 years of practice! However, I just wanted to say that the op cleared everything out, got rid of any visible signs of cancer and with the check-ups, regularly, but less so as I moved to the 5 year mark, I was well looked after and didn't need chemo. I am currently nearly 14 years down the line and have never been healthier or happier. There's a young woman's group on ovacome.org.uk if you wish to meet up or contact others who gave similar experiences.

    Just wanted you to know that the outlook for recovering is good with a borderline diagnosis, there will be lots of help if you decide that you want a baby but if you decide otherwise, there's a wealth of people to meet, places to go and experiences to enjoy.

    I wish you lots of luck

    Let us know how you get on

    Love Wendy xx

  • Hi Wendy - thank you so much for your response.

    I'm sorry to read that you found yourself in the position you did and without being able to conceive (despite sterling efforts!) I'm also really pleased to read that your op seemed to work wonders for you and you've been 14 years clear and happier and healthier to boot :) It's lovely to hear the happy outcomes!

    The decision to have a family (or not) has definitely evolved over time and more recently was massively influenced by the loss of my darling Mum. I believe if she was still with us, it would be a no-brainer. It's funny how things change. I still don't know if i'm honest (please note my husband is massively supportive either way), but I guess having the option taken away suddenly brings the subject screaming back into the forefront of ones mind again!

    I suppose, come Thursday, I'll perhaps be a little clearer about what happens next. My husband and I are booked to go to South Africa on 1st Sept for nearly 3 weeks...we're hoping i'll be able to have my surgery as soon as possible, to give me as much time as possible to recover before we're supposed to go. My last gynae-surgeon seems to think it would all still be possible, assuming i can get an early date.

    Will keep you posted though :) Thanks again for your response. I appreciate it massively x

  • Hi Hun,

    Sorry to hear what you have been through,but glad so far all the prognosis is good.

    I am old enough to be your mum, but have a daughter aged 29 that has had a bit of a health scare with a cyst on her ovary.She is being well looked after because I am in remission after a stage 1 c diagnosis and op and 6 months of chemo, also she is having a BRAC gene testing in August because we have discovered her grandmother and great grandmother on her fathers side died of ovarian cancer.

    Poor girl has a double whammy with such crap genes,but I was so interested to hear of all the positive outcomes that can come of this prognosis.

    She is OK by the way and has been told she can try for my second grandchild!.having children is all down to personal choice and I nearly chose not to have any as I didn't have my daughter until 31.i also enjoy travel which is why I nearly didn't have kids, but I am making up for lost time now and yes, don't cancel your arrangements unless there's no choice,

    Lots of best wishes,

    Carole xx

  • Sorry Carole, I thought I'd responded. Thank you for your message (my Mummy was a Carol!) :)

    I'm sorry your daughter has had a scare especially after all you've been through (& other family members) but good she's getting genetic testing AND that she can try for bambino no.2! I wish her & you all the very best.

    I certainly don't plan to cancel any of our travel plans. The last 5 years (& much sacrifice) have lead up to these 12 months of adventure!! I'm seeing my new gynae-onc today & will make sure knows the logistics of everything :)

    Thanks again for your response. I appreciate it x

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