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Original poster

Ovarian cancer----does anyone have any knowledge or experience please?

34 replies

Beadgirl · 13/10/2007 21:32

My SIL was given a hysterctomy almost 3 weeks ago because they found a cyst on her ovaries. It was found to be malignant and not all of the cancer could be removed. She had tests to see how much chemo she would need/could take. But we haven't haerd anyhting from her.
DH is refusing to ring her more than he noramlly does -'as she may think he is making a fuss over nothing'
He tried to ring this afternoon but there was no answer and he responede with "Hopefully that means everyhting is fine and she has gone shopping" . Surely he ought to be thinking 'hopefully that means she is in hospital and receiving treatment.'
Does anyone know what is 'normal' between diagnosis and treatment starting??

Thanks

OP posts:

controlfreaky2 · 13/10/2007 21:35

ovarian cancer is a horrid disease.
sorry to say but i understand survival rates are not as good as for many cancers as it is often diagnosed late (due to lack of / lack of any specific symptoms.....
having said all that i have a good friend who had this and is still here to tell the tale 15 years later.

Original poster

Beadgirl · 13/10/2007 21:40

I think DH has no idea how horrid the disease is and has no idea how vigorous it can be.
But I think his sis may feel unsupported.

OP posts:

Tamum · 13/10/2007 21:41

I should think it was highly likely that 3 weeks would have been enough for them to do the tests and start the chemo. I'm really sorry

Original poster

Beadgirl · 14/10/2007 09:02

I think DH is hoping that if he ignores it then it will go away.

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FlightAttendant · 14/10/2007 09:09

My friend had a diagnosis several months ago and had a hysterectomy, she had had cysts for a while but they fou8nd something abnormal during surgery.
She was given chemo straight away, but they thought they had caught all of it.
I was given a good link to a cancer site a few weeks back, will try and find it - it described all the stages and likely treatments. I hope your SIL is going to be alright.

geekgirl · 14/10/2007 09:11

beadgirl I am sorry.

my mum has ovarian cancer, it's a dreadful disease.

She started chemo a week after her first surgery. The first course of chemo in OC is usually given every three weeks, it's reasonably well tolerated most of the time but does result in hair loss etc.

Your SIL might not have rung because she is in shock and will find it difficult to talk about it - the prognosis for OC is so bad and it completely creeps up on most people without any warning, it's like being in a car crash in a way.

If you have any more questions on it that I can answer from a relative's POV, please ask.

FlightAttendant · 14/10/2007 09:13

here

Original poster

Beadgirl · 14/10/2007 09:16

Keekgirl - sorry about your mum. how far into treatment is she now?

DH is stalling telling our DC...they are 11 and 8 --and I think they ought to know. We don't live near her so wouldn't ordinarliy see her until Christams but they will be asking questions about DH's unusual visits to her. I wish I knew what was the right thing to do.

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Original poster

Beadgirl · 14/10/2007 09:17

Thank you FA. I will read it now.

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geekgirl · 14/10/2007 09:37

beadgirl - she was diagnosed at the end of January, out of the blue at the age of 57. She had surgery 5 days after her GP saw her and then had the first course of chemo, which she finished at the end of May and was given the all-clear. She felt quite well on the chemo really.

Unfortunately the cancer was was found to have come back in July, so she started chemo again (a different kind). When OC comes back, or if they don't manage to remove it all in the first place, it is considered to be uncurable and all treatment is just palliative.
A week after starting chemo she was found to have a complete intestinal blockage because the cancer had invaded her bowels and had a colostomy put in, she had another blockage a week later and more surgery for that.

At the time the doctors in hospital gave a very grim prognosis and advised her to not have any further chemo and just concentrate on pain relief.

She was in a very bad state both mentally and physically, but anxious to grasp whatever straw was offered to her, so she insisted on having further chemo.

Thankfully this latest chemo seems to work in that so far, the cancer hasn't grown anymore and she has recovered some strength. Unfortunately the cancer cells will eventually become immune to the chemo and that's it then, really.

How old is your SIL? Is she of a good weight? My mum has always been very thin (borderline underweight when fit & healthy) and that has been a problem with the relapse - she lost so much weight that their GP is now saying that her weight is more likely to kill her right now than the cancer.

Blandmum · 14/10/2007 09:49

Not the same disease, but I can say that it is very difficult to talk to other people when you have a potentially terminal diagnosis hanging over you.

It can be evern harder if family don't realise/ can't meke themselves realise just how serious things are.

In addition your sil may be having real problems coming to terms with the diagnosis herself.

The chemo regimes are also very tough to deal with, and your SIL will need all the support that she can get to go through with them.

OC is highly agressive and has a very poor survival rate. If she is one of the lucky ones she will still have gone through some very difficult and unpleasent chemo.

For dh (pancreatic cancer) we started chemo 4 days after being given the diagnosis.

jhyesmum · 14/10/2007 09:50

beadgirl and geekgirl - I just wanted to send you my support during this awful time.

i lost my wonderful mum to cancer in May, after being diagnosed in March. Mum had bone cancer which goes mostly undetected until it has really took hold.

This doesn't mean you are going to lose yourloved ones but I know the worry and pain you are experiencing.

Keep strong and positive (i know it's hard), and you'll get through it.

Blandmum · 14/10/2007 09:51

re telling the children. All the advice that we have ben gven for our two is that you must be honest with them, and answer their questions honstly when they ask them. So don't force the issue, but when they want to know something they will ask, and when that happens you have to tell them the rtuth, however tough that is

jhyesmum · 14/10/2007 09:55

I told my DS who's 7, that Nannie was very ill and had an ilness called cancer. I told him that we don't know if Nannie will get better or if she will go to heaven but we don't treat her any differently. He still gave her the hugs and kisses she loved from 'her little boy'.

When Mum did die, DS took it surprisingly well. It doesn't mean that he doesn't miss her because he does. Very Much. He says good night to her everynight.

Original poster

Beadgirl · 14/10/2007 10:28

Thank you
I realise that it may well be a very-uphill struggle for SIL. I feel that it isn't up to me to ring her as we have nevver been close but feel DH should be doing so more than his regular once a week. I may point him in the direction of the Ovacome website which seems very good. Thanks FA.
I think I will follow MB's wise words and wait until the DC ask why DH is visiting SIL on his own. (We would normally all go).

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Original poster

Beadgirl · 14/10/2007 10:29

I forgot to add.... Sorry for your loss jhyesmum. It sounds like you did a good job with your DS.

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jhyesmum · 14/10/2007 10:49

beadgirl - i don't know about a good job, but i tried!! Thanks for your kind words.

I think you're doing the right thing. Follow your instincts.

None of us are experts with things like this, so we just have to muddle through.

Good Luck

Original poster

Beadgirl · 14/10/2007 21:00

Well DH has spoken to his sis. She saw the doc who did the op and he says that they don't start chemo until 3 months after surgery because chemo can be detrimental to surgical recovery.

When she was told it was malignant in the first place she said the doc said she 'could give chemo a try if she wanted to'...does this imlpy to you that it may not work? It did to me. And now it won't be started for almost 3 months.
She is seeing the oncologist (sp?) next week so I wonder if he says somehting different.

OP posts:

geekgirl · 14/10/2007 21:23

I really would push for chemo to start asap. True, chemo does slow down recovery because it stops cells from reproducing so wound healing is slowed, but AFAIK the guidelines are for it to start asap. Ovacome will give a clearer idea on this - my mum lives in Germany so I can only say how it works there.
Pavlovthecat's mum died from OC, and there was also a long delay between surgery and chemo in her case - IIRC Pavlov felt angry about this.

The comment about giving 'chemo a try' is most likely because sadly, if they were unable to remove all the cancer, any chemo will only be palliative. There is no cure for OC.

Successful chemo should however result in a reasonable increase in life expectancy. TBH, I wouldn't want to be under a doctor who talks about 'giving it a try'. I'd want someone who keeps some hope alive (even if rationally there isn't any), because without hope, a lot of people can only focus on the end, and not on living the life they've got.

Original poster

Beadgirl · 15/10/2007 19:01

This is very difficult for me to do anyhting about.
DH has gone away for the week with work. I asked him if he would like me to ring his sis but he says I'm not to; he will ring her at the weekend.
I understand that it is difficult for him to deal with, but feel my hands are tied.

OP posts:

mylittlefreya · 15/10/2007 19:30

I'm sorry you are in such a tough situation beadgirl. It sounds unusual to me for them to wait like that.

My mum had an 'open and close' (where they can't remove any of it) two weeks before I deleivered my dd in December. She then had 6 cycles of chemo and another operation to remove as much as possible. she has since had 5 more cycles of a different chemotherapy. And now we wait...

Both operations the chemo started within 3 weeks. Could you write to your SIL? I'm sure she would be glad to have the letter and you could say what you wanted then.

geekgirl · 16/10/2007 11:19

I agree with the suggestion of writing to her. My mum has had so many cards and letters from people she never really realised would care, and it has been extremely moving and positive for her.
You're obviously a caring and thoughtful person - she'll need people like you in the coming months.

Original poster

Beadgirl · 19/10/2007 16:54

Although I like the idea of a letter I am useless at that kind of thing and wouldn't know where to start.
I also have a knack of things coming out all wrong ....

tbh - thinking about writing a letter scares me.

OP posts:

onescarymummy · 19/10/2007 20:01

Sorry I'm a bit late reading this, only read OP as my mum had it when ds was born 2 years ago & I still can't deal with reading all posts as my dad now has cancer as well. My advice - the stuff on the internet will terrify her as my mum read with ovarian cancer there's only a 4% survival rate etc etc. Talk to her if she wants to talk about it & don't if she doesn't, chemo is invasive & nasty.

onlyjoking9329 · 19/10/2007 20:15

i agree it would be hard to write a letter but if you could it would mean a lot to your SIL.
my lovely DH has a terminal brain tumour, it means a lot to him and to me if people do ring up or write, DHs step brothers wife is a cancer nurse and to date has not rang once.
if you look on the cancer bacup site you will find a booklet about how to talk to poeple who have cancer and lots of other stuff eg talking to children.
let me know if i can help in anyway

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