My Daughter's OC Outlook

Hi,

I'm having a rubbish time at the moment. My daughter had OC two years ago. stage 1 teratoma containing carcinoid removed. Then she had another(benign) tumour removed and also her appendix, omentum and some lymph nodes removed. She had a residual benign tumour between the womb and the bladder and one on the pouch of douglas in the bowel. They were left because at her young age they did not want to do a hysterectomy or a bowel re-section which would have resulted in a permanant stoma. The tumours, although benign decided to grow. They grew big enough to cause concern and so she is being given anti- hormone injections to halt the growth and Liviol to replace the oestrogen and progesterone that the anti- hormone drug is destroying. So far so good. However, there will come a day when treatment stops - they can't continue the ant-hormone injections indefinitely. We know the nature of the disease - Teratoma syndrome with a twist we call it - is that tumours can pop up any time. For all its benign-ness it is still dangerous and as we have experienced there is always a possibility of a tumour becoming malignant. I feel as though we are living with a time bomb and all I can focus on is, what happens when treatment stops? Are they just putting off the evil moment when she will have to have a stoma and a hysterectomy after all? I know there are worse things, but where will it end? Is this disease going to get her in the end?

Sorry for the gloom and doom. I can't discuss it with my daughter and my husband doesn't think it is worth talking about it while she is still reasonably well with the treatment. Oh and just for a double whammy she has ME and fibromyalgia!!! I have to say she is an incredibly plucky young woman and i am in awe of her with the way she has cpoed and is coping.

4 Replies

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  • Dear Honey

    I am so sorry to hear of all that has been happening with your daughter. It must be a huge concern and really diffcult that you have no one to discuss it with. Do feel free to give Ovacome a ring to talk things through on 08453710554 Mon- Fri 10-5.

    I am also sure you will get some very supportive replies from this site

    Best Wishes

    Ruth

  • Ruth, thank you. I will try to ring - not easy to get time on my own to talk, but I think I need to.

    A really lovely lady sent me a private message and that has helped, just knowing that someone really understands.

    Honey

  • Hi Honey!

    What a time you are all having! Sorry to hear all of your daughter's troubles. Do as Ruth suggests and talk to someone who really understands, and well done for getting on this site to support your daughter. I'm afraid I don't have any medical experience of what your daughter has, but if you type in "staying positive", or "anxiety" .... or something like that in the search box at the top of the page, you will come across many previous conversations and some ideas that may help you.

    I hope you find something to support you, while you are supporting your daughter and family

    Love Wendy xx

  • Thank you Wendy.

    Have received a message from a lovely lady who understands my situation and that has helped. I will try to ring Ruth at some point.

    Honey

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