please help me to give emotional support to my young friend?

[Eldarfea]

I'm a breast cancer survivor, so I know what it feels like to be given the cancer diagnosis, but I'm 58, and somehow that makes it slightly more acceptable that a 24 year old friend of my daughter. She has just come out of hospital for removal of her ovaries and has been told that she has had an omentumectomy, her CA125 is apparently too high, and her mum died of ovarian cancer. Sadly she is 9 months down the line from her first appointment whilst I was in hospital having surgery 3 weeks after I took my lump to my GP.. So that I can help her, please can someone tell me firstly what is a normal level for a CA125 test, what is the significance of an omentumectomy, and what questions should she be asking at this point? she is even scared of the sight of her own blood and is in desperate need of an advocate, please help me to help her? thank you lovely ladies xx

[Hidden]

Dear Eldarfea,

I am sorry to hear about your friend and it is lovely that you want to support her in any way you can.... I am sure you will be a great support to her.

To answer your question the CA125 test is deemed at being normal when it is 35 or under, anything over that is an indication of something being wrong, but not necessarily and indication of cancer because it could be risen because of other medical conditions e.g. endometriosis or some other infection, however your friend has had her ovaries removed and will know more about her prognosis when the histology reports comes back.

Removal of the ommentum (which is an apron of fat that everyone has in order to protect their organs), this is removed because if she has cancer then it is thought to be the first place that the cancer migrates to ...so she will know more about that when the histology report is completed... (not all of the ommentum is removed but part of it) but it is usally standard practice to do this,

I have a feeling that you are not in the UK ...so I am not sure whether the ovacome helpline number is of use tel [phone] or 0207 299 6650

You could also go on the Ovacome website, which you could get more information on there.

Best wishes love x G x

ovacome.org.uk/

[Eldarfea in reply to Hidden]

Hi Gwyn, I'm grateful for your reply, I am indeed in the UK and have made a note of the numbers. I'm going to aim to be with her when she gets her results as I know from my own experience that hearing and comprehension seem to shut down the instant the 'C' word is mentioned, and I think she will benefit from having someone to take in the information for her. She is currently convinced that removal of the omentum is not standard procedure and that she has cancer but they're hiding the diagnosis from her. I feel so very sorry for her. Demoid cysts and Teratoma have also been mentioned and I'm doing a lot of googling on her behalf. Thank you for taking the time to reply, and I'll update as soon as I can. xxx J

[Eldarfea]

I've just re-read my original post, and I can clearly see the points at which my train of thought was interrupted! it doesn't make sense to me either...

[Hidden in reply to Eldarfea]

Dear E,

I meant to say earlier welcome to our support site.

Just a thought you can edit your comments and post by pressing the down arrow at the bottom then select edit, you can then change edit or delete any wording that you wish, (although your post does make sense to me) I thought maybe you were in America because of your use of the word advocate (not because you didn't make sense) another thing is...if you don't mind me saying that you can edit your post for "members only" to read in the same way as you edit comments press the arrow at the bottom edit and scroll down to change to "members only" after submitting you will then see a little padlock at the head of your post which means the WWW cannot read it. (so it is not availble for everyone to read)

I hope this helps ... I am sure you will get some good tips and advice to assist you.

Best wishes love x G x

[Hidden]

As Gwyn says, welcome and it's great that you're supporting your young friend.

You will find she is not alone in being diagnosed at this young age - another 24 year old posted just the other day.

I too had omentectomy and agree it seems to be standard practice.

The Teenage Cancer Trust may be another useful support for her. Despite its name, it also deals with young adults and for all sorts of cancers.

Top tips for her for when the panic sets in:

1) write it down and then you have a list of questions to ask - and get answered - at the next appointment.

2) take someone with you to make sure they're digesting the answers and noting them. It's very easy to get the wrong end of the stick and very useful to have someone there who may have heard things differently.

Best of luck to you both. xxx

[Eldarfea]

Thank you both for your kind replies, I'll hopefully be able to report on progress tomorrow when she arrives at my house xx

[thesilent1]

Hi. The normal level for a CA125 test is between zero and 35. However this result can be raised due to an inflammatory process, not necessarily cancer. With this young women's family history, I am sure she will be checked for the BRACA gene. You say she had her ovaries and her omentum removed, did they leave her womb? If so, this is probably due to her young age. Most ladies on this site will have had a full abdominal hysterectomy which includes the removal of the omentum. Is it possible for you to accompany her to her appointments? She will have a post-op review with her surgeon and more than likely an appt with oncologist. Another pair of ears is useful as I am sure, you yourself are already aware. I hope all turns out well for your friends daughter, and if it is ovarian cancer it has been caught at the early stages. Thinking of you both, Ann xo

[Eldarfea]

Thanks Ann, I'll get more information from her today and hopefully things will start making more sense. If I can go with her to her appointments, I think it will be helpful to her in the long run. Sadly her own family are not supportive and she has gone to everything unaccompanied so far. She's travelling down to me today, (my daughter is bringing her) as there is no-one to look after her in her flat while she recovers from surgery. I'll introduce her to this site as soon as I can xx You ladies are lovely, thank you

[MarieH23]

Eldarfea you are a star! m x