Horrible day today!

I was diagnosed with OC Stage 1 (grade 3 cells) last September. Following a full hysterectomy I had 6 sessions of carboplatin and taxol to blast a few 'floating' cells. I went into remission at the end of February this year with a CA125 of 7 and a clear CT scan. However, after experiencing some pain in July and because my CA125 had gone up to 38 by early August, I had a further CT scan the results of which I found out today. A 5 cm tumour has been found on my rectum and now I face either more chemo, radiotherapy or surgery which could be removal of the tumour and the need to have a stoma. A decision will be made on Monday, but the Consultant today favoured more chemo. Needless, to say I feel absolutely devastated at an occurrence especially so early into remission let alone all the nasty feelings it throws up for the future. Feel I need some inspiration and hope at the moment.

8 Replies

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  • Mary,

    What bloody awful luck! But - when the dust as settled, you will be able to make the decisions about treatment. It just has to be dealt with to get you back into remission - and you WILL deal with it!

    Thinking of you,

    Much love,

    Isadora.

  • Thanks Isadora. At the moment, getting back into any sort of reasonable remission seems remote!

    By the way, think I read on this site that it was you who was into Transfer Factors. If so, can you please advise more on them.

  • Apparently there have been excellent results from a recent study involving a chemo agent called Sutent, usually used for kidney cancer. There's also lots of research being done into various other treatments, including radiology, etc.. Can you ask your consultant to refer you to the nearest major cancer centre for a second opinion? I know that a lot is going on at University College Hospital in London, there's an oncologist there called Professor Jonathin Lederman, and you can see him or a member of his team by asking your consultant to refer you there. If London is too far for you to travel, you can ask the Ovacome nurses to suggest a good place that's nearer to you.

    Good Luck!

  • Dear Mary

    I am one of the support line nurses at Ovacome and am really sorry to hear that they have found a recurrence that must be really hard

    for you.

    Make sure you have plenty of time to discuss with both the consultant you are under and the nurse before deciding what treatment is right for you. It might be useful to ask about what treatment has been given to any other people who have been in a similar position. Make sure that your case is discussed at the MDTmeeting and if you feel unsure about things don't hesitate to ask for a second opinion. It might also be helpful to ask if there are any trials that might be applicable. If you would like to discuss further do please leave a message on our ansaphone and we will get back to you 08453710554

    Best Wishes

    Ruth

  • I can only guess how you are feeling, but listen to all the advice you can and take your time to consider your options. My Aunt has just had something similar and is now coping well with a stoma, chemo and secondaries.

    You will feel calmer s you listen to advice and do try ringing the Ovacome helpline, they are so good

    Thinking of you

    Love, Wendy xx

  • Morning Mary

    I'm a ROCC, don't have oc but do have an ileostomy requiring a permanent stoma. I had this 40 years ago when I was only 23 so have come across most situations and would be only too glad to chat further as and if you find yourself in the same position. Although everything seems very dire at the moment, you will cope, with support from everyone aroung you and this site. I lost my daughter 6 years ago to oc and she had to discuss the possibilty of having a stoma at one point so I know doubly what you are facing.

    Try to stay strong and positive. We are all thinking of you.

    Jennie

  • Hi Mary

    Im in the same boat as you, diagonosed late September and have just had a reaccurance! Its horrible so early into remission and I am a firm believer in its just the luck of the draw, nothing to do with stages etc. I am Stage 3/4 you are Stage 1. I am reassured by my nurse that they just didnt get it all first time round. This time I pray for you that they remove what they have to and that will be that. Im sure the possibility of a stoma cant be nice but try to be positive, although I know its very hard. I hope these words comfort you.

    Much Love

    Coco

  • Thanks to all who replied. I did, indeed, find some inspiration and hope although I'm still reeling from the shock of Wednesday. I have already followed through some of the advice given which makes me feel a little more in control of this nastiness and wait to see what plan is proposed on Monday.

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