YOLK SAC TUMOUR/BEP CHEMO

Hi

I am 31 years old and have been diagnosed with a yolk sac tumour. I had to have an emergency operation when it became a erupted mass in my stomach. they thought it was a cyst at first then after 2 weeks i had the awful news of what it was. I have just got out of hospital after my first week of chemo and i found it really hard. My doctor is now advising that I should consider a hysterectomy as he doesnt think its all been removed. I have no children and my head is all over the place. Has anyone else experienced this type of ovarian cancer and treatment. Apparently its a rare germ cell type but if its caught quick enough the prognosis is good. My ca125 has increased to 825 last week but the ct scan shows it hasnt spread anywhere else.

11 Replies

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  • Dear Clare

    I have not experienced this type of tumour , but am replying to say that I am so terriblly sorry that at such a young age you are going through this. You have found a wonderful resource in this board . The support nurses here are extremely knowledgeable and very supportive so do please consider giving them a call. It's good that the thing has not spread, but I can only imagine what you are going through.

    I also want to say that you are not alone , we all know what you are going through. I am older than you, but was told a few months after my hysterectomy that I had had an extremely rare type of ovarian tumour that I had never heard of before !! I didn't need chemo or radiotherapy and have also been told that my prognosis is very good.

    There are lots of young ladies on here that I'm sure will be able to empathise with you in your situation.

    If it's any consolation at all , my first operation was 18 months ago and I am now finally enjoying life again, doing well back at work and looking forward to a diving holiday soon that I could not have even contemplated even 6 months ago.

    You have youth on your side and treatments are improving all the time. You will get through this.

    Take care

    Charlie xxx

  • i dont have this kind of tumor but i have recently had a hysterectomy because i had cancer cells in a tumor in my right ovary.. they still dont know the source of my cancer and im waiting to hear what happens next.. im very scared as i know i have to have chemo and im dreading it... im just hoping to god that when i go back to hospital that they have found it what they have taken away.. ill be so terrified if they tell me they still dont know the source...

    im sorry for you that you havent had any children i have a daughter but i did want more children, it must be awful for you. but i guess you have to weigh up how important your life is...

    i wish you loads of luck and im here if you need anything.

    bug hugs

    suzanne. xx

  • Your head must be spinning, Clare. I am sorry to hear what you're going through. You will get through all of this, I am sure. It is great that your medical team are able to predict a good outcome after your op. Your own health is of paramount importance at the moment. I know you are young and the having children issue is so hard too. I had OC 9 years ago now and wasn't able to have children. I had a full hysterectomy and other bits removed and got over the op much better than I thought I would. They caught it early enough for me not to need chemo, so I was lucky. Now I am healthy and fitter than ever. Having something like this doesn't half make you appreciate life and make you determined to make the most of it! You will get through and if you need a rant or a moan, come on here, it keeps our close families from worrying too much if we can let off steam to other women who have been through something similar. This site is a great place to have a rant, a plea for help or just a query about how others coped. Keep us posted about how things are going with you. Good luck

    Love Wendy xx

  • Hi Clare,

    My heart goes out to you, you are going through such a lot. It is so tough dealing with uncertainty and not knowing what it is going to happen. I do hope you can manage to have a chat with one of the Ovacome nurses - like you I had a rare cancer and am also a younger woman with OC (diagnosed last year aged 33 with borderline ovarian tumours, now I'm 34). Even though borderline is rare, the folk here at Ovacome knew about my kind of cancer. And even if your cancer is a rare one, I'm sure everyone here on the forum will be able to empathise with what you're going through.

    I was 33 when diagnosed and though I didn't have a germ cell tumour, I did have unusual tumours (borderline serous papillary, quite a mouthful) and like you, the prognosis for me post-treatment has been good. Also, like you, I didn't have children yet - although I was just beginning to start trying for a baby when I was diagnosed, and the impact on my ability to have a family has been huge for me. (I've been lucky that the doctors have been able to let me keep my womb in the short term and I'm having some IVF treatment with my eggs which were harvested and frozen before my op. I wonder if there might be any similar options for you, if you still have an ovary? if you would like to have options around IVF or even surrogacy in the future I wouldn't be afraid of asking your doctor about this).

    Reading your post I would like to say not to worry too too much about the CA125 - my docs have always told me that it is only a very rough measure as it can pick up on lots of other kinds of inflammation in your tummy. The fact that your CT scan has come back clear is FANTASTIC!

    I'm so glad that you have found this site, there are quite a lot of younger women on here who have been affected by OC and we are always here to lend an ear.

    Thinking of you,

    love

    Cat xxx

  • I am so pleased that the CT sans shows it has not spread any where else . But if you are anything like me the worse news was the mention of having a hysterectomy.

    I am the same age as you and when my doctor suggested a hysterectomy I was devastated by the thought of living a life without having children, more than I was about having OC! Your doctor will know what to do for the best for your type of tumour, and he will be taking into consideration your age when he gives his advice, but even so, dont be afraid to ask questions.. its important for you to understand the reasons why a certain treatment will be better for you than another.

    I was lucky to have one ovary and tube removed and I am now having chemo. Although its a waiting game for me to see if I will still need a hysterectomy, I hold onto the hope I wont.

    You may feel like the only person in the world to feel as you do, but trust me, you are not alone in your feelings...I do so hope everything turns out well for you.

    love jules x

  • Hi Clare, I had a hysterectomy some yrs ago following discovery of a 'Mass' in my womb. They left my L Ovary as at the time it was unaffected. Then 2 yrs ago, started getting pain during sex. the scan discovered a lump larger than a grapefruit. It burst during surgery, my Consultant was full of empathy when he told me a week later. He said they couldnt reach the lymph nodes due to 'spaghetti junction' of previous scar tissue, mopped me up & closed. Chemo followed, apparently it was earlly stage, better prognosis, now in remission. ;) However, It isnt easy coming to terms with this type of op anyway, & considering your young age, understandably a huge shock to the system. But regarding the long term, Cancer 'apparently' feeds on stress, Try to think positive & enjoy the little things that we take for granted on a daily basis, Butterflies dancing in the garden, The birds song, anything to distract your troubled thoughts, even if only for a few minutes at a time, helps to give your head a respite, & helps us to cope. I am also clinically depressed following a series of events 2yrs ago. I left my abusive & selfish husband after a fierce attack March 2009, then the Cancer was discovered earlly June, which also prevented me having my Mum with me for palliative care, then she passed away 8 Sept ( 2 Inquests followed, still ongoing!). At the time when you think you cant get any lower in the quiksand, thats the time when you grab your socks with both hands & pull yourself out. You Think you cant deal with it, but trust yourself to be positive, It can work eventually, Friends & Family, Same situation folk, these sites, All the support you need is out there, But you must endeavour to take those first Positive acceptance steps In order to try & deal with it all. I am a holistic therapist, yearning to get back to work, Not completely ready, as the panic attacks r still random, any little spiral can spark it off, Find your Special little Mind Sanctuary- ie- Butterflies in their courting dance, A really Happy memory to Lift your spirits, 12 grms 70%+ dark choc! It Really works, Releasing the Happy Hormone, reducing stress & Hi Bp. Helping life giving blood flow round your body, Good luck, Sending Healing thoughts,Tc JoXx ( Anyone wishing yo contact me Vry welcome- phixyu@hotmail.co.uk)

  • Thanks for all your comments its going to be tough but I am a fighter and im not going to let it get me down. POSITIVE POSITIVE POSITIVE ! Been as a day patient today for just one of the drugs, it wasnt so bad apart from my veins are hurting cos of the IV.

    Im finding the steroids are playing on my emotions a lot but they have said its quite normal, i had a good cry and felt better after it ! Still got another 3 cycles left yet so just the start, its gonna be a rocky road but if it works and I am cured at the end I will try anything. The hysterectomy scares me but at the end of the day my life is the most important in this all. I gotta go pick up my wig soon as Im gonna lose my hair, I think that will do my head in the most so I have made sure I have a really nice human hair long one. Gotta try and get some enjoyment out of this!

  • Hi there, just joined today and saw your post regarding yolk sac tumor. I am 34 years old and have just been diagnosed with this. I start my chemo on Tuesday and a little apprehensive to say the least. Hopefully for you the chemo will be all the treatment you will need and further surgery will not be necessary. It is difficult to think of not being able to have children, I do not have any either but you need to ensure your health is 100%. Stick with it, how many cycles of chemo do you have to have?

    Good news is your ct scn was clear and the resluts for CA125??? Mine were low throughout the diagnosis of cancer but it was my alpha protiens that were high, who knows!!!

    Keep your chin up, I know exactly what you are going through.

  • Hi there

    Sorry I took so long to reply to you. I am half way through my chemo at the minute and the side effects are not easy. I got my ca125 back today and its gone down to 32 which is amazing, im so happy at the minute.It was originally 1400 before my operation. I have another 2 cycles left before I make a decision on my operation. At the end of it like you say health is the most important thing to me its just hard the thought of no kids as you kind of think of it as part of your future u know? Different people keep putting on about ca125 not just for tumour marker for other things but the doctor is insistent on it coming back later if I dont have the operation. Might have to investigate more at the end I think!

    Anyway hows your treatment going? Tiredness and sickness has been the worst for me!

  • Hi there, hope you are ok. What chemo treatment are you on? I am on the BEP regime and go back into hospital on Monday to start my 2nd cycle. Thankfully it hasn't been too bad (fingers crossed) I have had a allergic reaction to the Bleo which is a bit sore and itchy but so far so good. All my hair has come out now so had the small areas left shaved which I handled much better than I thought I would. Consultant seems pleased so just trying to be positive and count down the days until the end of chemo and getting my life back to normal. Take Care, if you need to chat just send me a message.

  • Hiya just checking with my update and seeing how things are going? On my last cycle this week and things are looking good. I am too on BEP, I had really bad side effect of sores on my hands and feet off the bleo so they have given me an alternative one this week nislatin i think its called. My afp marker is now 5 or less which is normal and my hcg is 7 which is normal, I an so happy at the minute, I have decided to have a hysterectomy after xmas when I have recovered from the chemo. Doc knows best and he has advised this type of tumour is reknown for coming back in 5 to 10 years time so I want to take any precaution I can. My life is the most important thing to me. Anyway how r u? did u get a good wig? Hows the treatment going for you?

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