Help so concerned and don't know what to do. - My Ovacome

My Ovacome

17,716 members19,966 posts

Help so concerned and don't know what to do.

MsLizD profile image
6 Replies

My chemo was suspended as the cancer on the surface of my liver had increased in size. My onc suggested a new chemo treatment which he had to apply for saying it would talk about 2 weeks to hear if the application had been successful. It is now the third week (4 weeks without treatment) and still have heard nothing. Phoned ocn's secretary couple of days ago who eventually got back to me today to say they had spoken to who ever is dealing with the application and they will let me know the outcome. Meantime I am left without any further appointments or treatment and not knowing who else I could contact.

Anyone had a similar experience or any further suggestions?

Written by
MsLizD profile image
MsLizD
To view profiles and participate in discussions please or .
Read more about...
6 Replies
ScardyCat40 profile image
ScardyCat40

I would give Ruth a call on the ovacome helpline. She is fantastic at reassuring you and will give you some very practical advice on a way forward.

Please have a hug from me (())

I am sorry you are having so much trouble you could give the ovacome helpline a ring and speak to Ruth Payne tel 0845 371 0554 she might be able to advise you on the way forward.

Best wishes love x G x

Whippit profile image
Whippit

Dear Liz

What a horrible situation. Do you think it's worth going back to your oncologist to check out exactly what is going on. I expect when you first heard this news you went numb and I don't know about you but I find all rational thought disappears.

I think it would be a good idea to understand what chemotherapy he's applying for, and to whom. That would be reassuring. I think he/she should also be giving you reassurance that a chemotherapy holiday is doing no harm. I'm sure it isn't if you've been left like this but I'd want to hear it from the doctor's mouth.

The last piece of advice is the same as Lorraine and Gwyn's. I'd be on the phone to Ruth at Ovacome to see if she can help with any of this and perhaps give you some good questions for your oncologist.

Please let us know what happens. We're all thinking of you. How I wish that would help reduce the worry for you.

Love Annie xxx

citrine profile image
citrine

That must be so upsetting for you. I think we need the security of knowing when our next appointment will be and to be kept informed. i see that you have already had good advice about ringing Ruth and Annie is spot on about asking for details of the chemo. Maybe you could ask for a copy of the application?

Thinking of you and hoping this will be resolved soon.

Love & best wishes

Mary xx

wendydee profile image
wendydee

Hi! I can't really add anything else to what the others have said, but just wanted to say hang on in there and stay strong. The advice to ring Ruth is spot on but she is only there Monday to Friday, 10 till 5. It's dreadful that the hospital has left you with the treatment plan feeling so unresolved. Do you have contact with a Gynae specialist nurse (CNS) I have always found they have the time and skills to reassure you about what's going on. There should be an agreed treatment plan written down for you, from what I understand (may be wrong about this though?) the CNS may have access to this. Whatever the route you take, it will be better for you to get this reassurance.

Let us know how things are progressing

Love Wendy xx

MsLizD profile image
MsLizD

Thank you all for your comments. Its the PCT who decide if I can have the chemo. The hospital said they have been in touch with PCT again and will let me know the outcome as soon as they know. Phoned Macmilan who say if the appeal is turned down a further application can be made, however time is moving on and I really hope next week will bring positive news.

Good luck to you all and thanks once again X

You may also like...

Don't know what to do

have fluid in my tummy it is sore ,and my liver test one had spiked so frightened now. They let me...

I don't know what to say/think.

situation, I had an appointment to see the chest specialist today. I had a plural effusion and have...

Stage 1A Mucinous Borderline Ovarian Tumor, 27 and don't know what to do.

with a MUCINOUS BOT? Are you receiving Hormone treatment? How are you coping with the decision...

don't we all know...

rest of this week, and all of next week, which culminates in my friends funeral. Anyone know how I...

oestrogen receptor positive - how do I know if this is me?

epithelial endometriod and wondering how we know it’s applicable and appropriate to avoid certain...