Anyone been diagnosed with ovarian clear cell carcinoma? I'm so scared

I've just been diagnosed with OCCC stage 3B today, I'm getting a port and starting my chemo on friday, I'm so scared, I'm just 23 and have no kids, they took out my left ovary and tube and said I have the clear cell all over my left side and on the sac that covers the abdomen, I just got married also, I feel so bad for my husband and myself, I don't know if I will get better, I'm trying to look for survival stories of people who had the same type of cancer to give myself hope but there are only few that I could find. I'm so scared, depressed and lost right now, I'm trying to smile in front of my family while my mother is crying each time I see her which makes me feel like I'm going to die and makes me more sad because I know I'm not ready yet :'(

31 Replies

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  • I'm so sorry for you,you are too young to be dealing with all this when you should be looking forward to your future with your new hubby. But as ladies on this site will tell you life can be a s_ _ _ and all other such words! Please speak to your cancer support nurse she'll be able to put you in touch with a specialist cancer counsellor. There you will be able to off load all your fears about what is ahead of you. On this site you will find ladies who will support and help in any way they can ,you will find others who have been through your same oc. We are all there for each other. We all learn to deal and cope with what life has thrown at us and you will too,although that probably seems impossible to you at the moment. If I could offer one thought please don't google for information, it is too general and doesn't apply to individuals. List any questions you have and ask your consultant. Sending you virtual hugs xx

  • Thank you so much, I really appreciate this :)

  • Hi.

    I have advanced OC. It's spread to the omentum. I'm having chemo and will have surgery then more chemo.

    You are not alone in how you feel. I have had the same thoughts as you. I've cried for days.

    This site is fantastic. There are a lot of very positive stories and the women on here understand exactly how you feel. There is a wealth of information which I assure you, will help you.

    It helped me when I really was at my lowest. I now feel more positive and hopeful.

    You're young and strong and you will fight it. Not everything you read online is true. Many reports are outdated. Look at the positives and believe me there are.

    For example, my mums friend had advanced ovarian cancer. She had chemo and surgery. She was 72. She died at 80 of a heart attack. I have heard many positive real stories like that. Of course there are sad stories too but yours doesn't have to be one you've every fighting chance believe me .

    We are all here for you xxxxx

  • Goodluck to your surgery and chemo, I hope that we all could get through this. I've cried for days too, I try to put up a smile in front of my husband too but I can't help looking at him and not cry, I've asked "why me?" but I can't do anything about it now but deal with it. thank you so much

    xx

  • Hi I was diagnosed with clear cell stage 1c with rupture .I had surgery 24/08/09 with no recurrence so far.I had 6 rounds of chemo with no ill effects .Keep strong,take your anti-nausea pills as prescribed.plenty of fluids-but not grapefruit and hopefully all will go well.

    My story recently appeared on Target Ovarian Cancer website as a scientist was funded money from them to do research into clear cell.

    I wish you all the best x

  • I wish I went to the ER when I started feeling something on March2016, I thought it was just an infection so I didn't go, I have high deductible on my insurance And I didn't want to pay for it so I didn't go. I should've went sooner, and caught this cancer sooner, but no. I feel so down being diagnosed with cancer, as I wasn't expecting this at all :( Thank you so much

    xx

  • Hi there. I was diagnosed with stage 3C/4 clear cell ovarian cancer in March 2014 at 35 years old. I responded well to surgery and the 2 chemos I have had so far. I'm currently in remission again and enjoying the Summer with my husband and French bull dogs Frank and Louis. Even though I will have to have more treatment going forward I still feel hopeful 2.5 years after my diagnosis. It is all worth it and I really appreciate everything in life - much more than I did previously. My husband and I try to carry on with a normal life and don't talk too much about my illness. My family were very upset at first too but now they carry on as normal too and treat me as normally as they can. My quality of life is excellent. I hope this gives you some reassurance re clear cell type. All the very best for your chemo on Friday. Stay determined!

    Love Helen xxx

  • I'm so happy that I found someone who responded well to treatments, when I first heard about this I searched google and found out that this type of cancer doesn't respond well to chemo which made me scared that I will not get better, thank you! this made me feel better

    xx

  • Hi, I just wanted to say hi and welcome to the site. You've already had some wonderful replies with ladies who have experienced something similar to what you are going through. Although not the same, i was diagnosed with a borderline mucinous tumour in June this year. Have had 2 ops, the last being 2 weeks ago to have ovary, tube and appendix removed plus biopsies taken. I'm fortunate that I will not need chemo as was told a week ago it was stage 1a, which I thank my lucky stars for, but at 33, married with no kids, it does make me ponder what the future holds.

    Hopefully you will see by reading stories on this site and others that there is hope. It sounds like you have a supportive husband and family...draw on that support over the coming days/weeks/months. You are definitely not alone and there's a wealth of advice and support out there which will help.

    You are in my thoughts.

    Jemima xx

  • You are very lucky to have caught cancer early, yes I've been browsing and reading stories in here which made me believe that I will get better too, I hope the best for you, and I hope everything works out for you and your husband too. thank you so much

    xx

  • Hi, welcome to our club. I'm sorry that one so young has had to join us but hey, you're here now, you are strong and you are going to beat this! As has already been said, stay away from Google. Take it one day at a time, remember, YOU are NOT a statistic, that is just a number written on paper, YOU are more then that.

    I was diagnosed with stage 3b OvCa in June 13, I'm stil here and i have every intention of being here for a long time to come.

    You will have your down days but try to remember every day is a new day and face it as such. Let the dY juztg gone go and move on.

    Counselling is available for both you and your husband if he feels he needs it.

    We are here for you too. Ann xo

  • When I heard I had this type of cancer I searched google about it and I regretted it, I felt like there is very little hope. Thank you so much I hope we all get better soon :)

    xx

  • There is always hope. Never give up. xo

  • I had clear cell carcinoma was told it's quite rare so maybe that why you can't find many survival stories. I've had all my lady parts removed and omentum. The cancer was inside a ovarian cyst so 1c1 and nowhere else so I'm hopeful. Halfway through chemo and it's not so bad. We are fighters and will beat it. It is scary and not a journey I wanted to take but I'm not going to let it define me I try to find all of the positives... Haven't shaved my legs in weeks!! Good luck and keep in touch let me know how your getting in big hugs 😍😍

  • they left my right ovary and tube in, the doctor said it wouldn't help taking those out since the clear cell carcinoma is all other the place already, we hope that it responds well to chemo, I hope you feel better too. thank you so much for sharing

    xx

  • You are so young so it makes sense to leave your other ovary I'm 52 and almost menopausal anyway so no need for my lady parts. That's how they found my cancer because I was bleeding constantly. I'm doing ok and I think once you have a plan for treatment it becomes easier because you go there do it and then deal with any side affects till they give you next dose. Best advice I was given is to plan to do nice things when your well. You will get used to the pattern do it makes it easier to have something to aim for or look forward too 😍

  • Five years ago I had clear cell stage 1c and I'm still here. It was tough at times but we get through it.

    My surgeon told me not much is know about our kind of cancer therefore I was given a "strong cocktail" of chemo (his words) to make sure it didnt recur and I have been closely monitored over 5yrs. I'm still here and I try to make the most of every day.

    Sending my best wishes to you and your husband

    Lynda X 🌷 X

  • I have clear cell too, as a mixed histology. You are very young to be coping with this. I recommend keeping a diary, write down exactly how you feel, not only can it help when you are down but it's something to refer back to. Especially during chemo. When you go for a review you can make notes from it to take, for the many questions you are likely to have.

    Best of luck

    LA xx

  • Hi, sorry that you have had to join us here but it's a great place to share your feelings and get advice. Everyone on here is great. Between everyone on this page I think we've probably experienced every odd symptom and diagnosis!

    I'm 31, married no kids. Whilst I know I'm a bit older I totally understand your concerns. Don't let them rule you though, there is so much help out there and so many success stories. Stay positive. Deep breath and kick some ass!!! :-)

  • Thank you so much ladies for sharing and for giving advice, I really appreciate it, I'm a bit excited about chemo because I heard it cures ascites for some and I still have ascites which is very uncomfortable, I will keep updating, thank you so much!!! ❤️❤️❤️

    xHazel

  • It's easier said than done, but just try and stay positive you will definitely be in my prayers starting right now . Don't let the fear of cancer steal your joy, live in the moment and deal with it one day at a time. I think you are going to be just fine . Lots of positive thoughts, vibes and prayers your way ! 🙏🏼❤️🙏🏼❤️🙏🏼❤️

  • yes I'm trying to, I keep having my days that I feel so down, thank you so much!

  • Been 'offline for several days, so catching up...I've quickly scanned through everone's replies and noticed Howick's reply about the professor being funded by Target to specifically research clear cell ovarian; he is Professor Iain McNeish at Glasgow University, so you could always 'google' him and write with your details asking if your case is of any interest to him? At least you've tried even if he can't help or doesn't reply!

    Also, suggest ringing the Ovacome nurse helpline and she runs a Younger Womens helpgroup although that is based in London, of course. There are special advice sheets for younger women diagnosed with OC too - think Ovacome have one so ask the nurse if you call.

    Fianl thought is to read the sheet on 'Asking for a second opinion' so that if you have concerns on the treatment option offered you, you are prepared to ask questions. My GP supported my request for a second opinion on my recurrence of clear cell stage 3c in Jan 2013, and the team ar West London Gynaecological Centre were able to do the op which my regional hospital had said was 'too dangerous'. I'm still enjoying remission.

    As everyone says, you are so young to be having to face this and so maynot feel as 'confident' as we 'oldies' to battle for yourself....hence please have the courage to ask any question of anyone who can help you with your medical care, general health during operations and chemo and certainly I support the advice of asking for counselling for you both.

    Take care, keep heart and be to yourself as you face this most unwanted future.

    L x

  • you have the ovarian clear cell too? at stage 3? that's what I have and I can't find a lot of stories about it, the doctor told me my chemo might not work but we'll see, I'm too scared for this, maybe because I have not accepted that I have cancer this bad at 23 😭

  • Hello again,

    Be assured we are all very scared on hearing the diagnosis and many times afterwards too; this is normal and healthy when in such shock so do be kind and compassionate to yourself and those who love you too.

    From my bits of research, clear cell accounts for between 4 - 6 % of OCs diagnosed in UK but is more common in the SE Asia (don't know why). Yes, the stats on clear cell aren't encouraging but always remember stats are based on history, not now.

    Everyone's story is different too; for some reason my clear cell hasn't behaved normally as it 'forgot' to 'burst like a bag of sugar' across my abdominal cavity and went straight from one ovary into the lymph nodes. I had no symptoms of illness just felt a swelling above my pubic bone when doing my 'soft parts check', so went to ask my GP what it was; he was as shocked as everyone. So, like everyone else, I encourage you to start your own journey of learning by talking to the Ovacome helpline nurse on 0800 008 7054, download or ask for leaflets on Younger Women with OC, Getting a second opinion etc. and please do ask for counselling from the Macmillan team at your hospital.

    None of us will pretend it can be easy or get easier, but many of us are not just surviving but living with joy and love of life while we 'surf the raging waters of distress and fear'. Do keep in touch on here and hopefully, from between us, you will hear and receive the support to help you be the best you can be in this most unplanned, unwanted change in your life.

    Keep taking care, and one day, one hour, one moment at a time.

    L x

  • Thank you for lovely and wise advice xxx

  • Hi so sorry you've had cause to find the group... There is an online guide specifically for younger women written by all of the main UK charities. It is a pinned post on the right hand side of this page so you should be able to download it from there.... Or you can find it on Ovacome, Target Ovarian Cancer, Eve Appeal or Ovarian Cancer Action's websites. There's loads of information, insight from others diagnosed and some useful links & I hope you'll find it helps a little...

    I really understand how important it is for many to find good information and this guide along with the charities websites above are a great starting point as you'll find quality information. There's also a great guide called 'What Next?' for all newly diagnosed women which Target OC have available as either a download or you can send for a paper copy.

    Wishing you strength and hope , Sxx

  • God bless you , xxxx

  • Life can be just so cruel. You are far too young to be suffering like this.

    I am really sorry.

    Everyone on here is so supportive I am sure someone will be able to advise you.

    Your cancer nurse should be able to offer some help too.

    Try not to google anything.

    This site and Macmillan are a great help with information.

    Sending you a big hug.

  • Did you have symptoms huni

    I'm so sorry to hear your story X

  • Hi there I've just read your post, you already have lots of good advise from these lovely ladies, anytime you need to post something please do we are all here to support you, we know what you are going through and there will always be someone to answer any questions you have. This site is full of ladies with good advise.

    Take care and you can do this

    Big hug

    Karen

    Xx

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