I need some positive stories about ovarian cancer

[microferret]

Hi all

A couple of days ago my mother had a CA 125 test which came back high. She has been having stomach problems (bloating, comstipation, diarrhoea etc) for a few weeks which is what prompted my dad, a retired GP, to seek further investigation. She will see a gynaecologist on Thursday, but he is pretty sure it's ovarian cancer.

Obviously we are all terrified. Mum is 68 and her father died around the same age from bowel cancer. She has spent her whole life either on restrictive diets or binge eating which I can't help feeling has weakened her system badly. Additionally she has always been a person prone to dark thoughts and an overactive imagination, and I know that a positive attitude will be essential to surviving this. However my brother and I are hopeful we'll be able to get her to finally eat normally and take an antidepressant to improve her outlook at this nightmarish time.

But what I was hoping for here are some positive stories about ovarian cancer, where people survived for a few years, or beat the cancer entirely, or people who have greatly exceeded their predicted life spans etc. I really need a reason not to dissolve into a puddle as Mum needs us all to be strong right now, and unfortunately my Dad has his doctor hat on and is refusing to offer any lifelines to me and my brother because he feels it is better we are prepared for the worst.

If you have a helpful story to share, I'd really appreciate it.

I worked with a colleague over twenty years ago who was diagnosed with ovarian cancer. I know she had an op and radiotherapy, though don't know about stages etc. I bumped into her again a couple of months ago - she was fighting fit and living a very active retirement. Hope it's good news for your mum.

Cancer treatment has advanced tremendously over even the last 10 years .
Really tremendously ,what used to be a terminal diagnosis is now often a condition which will be managed and it's progress slowed and delayed .

You Dad is in a very difficult position ,possibly unaware of advances ( research is always reliant on trials carried out in the past )and possibly falling back on old professional habits/GP mode in order to deal with his own shock and concern .

I wouldn't buy into the positive attitude beats cancer idea . People who cope well with hard times get talked about and seem to " overcome " the physical side effects of disease better than others who weep and complain . But the actual symptoms , pains , and progress of the disease are probably the same for both groups .

And I personally subscribe to the view that shocking though a terminal cancer is it does allow people to prepare for what happens to us all .

Waiting for results is the hardest time of all ,my heart goes out to you all .

Take heart from the fact that your dad encouraged your mum to get early help so her chances of survival will be far higher if she is diagnosed with ovarian cancer. Of course you're frantic with worry but honestly I'd wait till you know the results one way or another. You're itching to take some action but if your mum is diagnosed with cancer that will be the time to sit down as a family and come up with a supportive action plan.
Fingers crossed for all of you

Thanks all the support is really appreciated. I am trying not to freak out until I really have a reason to but it's still an awful time, that sick feeling in the pit of my stomach and the way I can't stop imagining the horrible things that might be to come. God I need a

My mum had third stage ovarian cancer. She had had a massive op and a lot of chemo - it hasn't been easy but it really does look as if she has come through ok. Do PM me if you need to.

Oh and don't worry about attitude. Really don't.

Just because the CA125 is high and she is bloated doesnt definitely mean cancer. Although much younger than your mum, at 27 I had a 20cm plus sized tumour removed (and that ovary) with a CA125 that was through the roof. Mine was borderline malignant so surgery was enough and I went on to have DS aged 36. Had I been older a hysterectomy would have been recommended. It doesnt mean you shouldnt be worried but Id like to think Ive eased your mind a bit.

You are all amazing, thank you. Polka yes you have eased my mind - we are in a sort of Schroedinger's cat period right now, IYSWIM, so I feel that it could go either way which is giving me a certain measure of mental strength (as well as some uncertainty).

Mother, I may well take you up on that offer. I appreciate it hugely, and I'm glad to hear your mother is doing well

A friend was diagnosed very early, had a hysterectomy but refused chemo. She's still here and well nearly 10 years later

As others have said , treatment has progressed since then . And it sounds like your mum is getting seen quickly - lots of women have these symptoms for months before getting checked out

Another story for you, OP - my friend's mum lived with ovarian cancer for well over ten years, having occasional ops and occasional chemo, but basically travelling, being a grandmother and mostly well. And she had secondaries from the outset.

Hang in there, not yet knowing for sure and not having a treatment plan yet has to be the worst bit of difficult diagnoses. I wish your mum well with whatever comes next xx

Don't worry about the positive attitude bit, there really isn't a lot of evidence it makes much difference one way or another, although obviously it's nice to have. It is unlikely your mum will suddenly become positive straight after a cancer diagnosis.

However, if your mum is 68, I'm assuming your dad is older so has been retired for sometime. So although his knowledge that if your mum has ovarian cancer, it's unlikely to be at a stage where it can be cured is correct, his knowledge of the treatments available is likely to be way out of date. It's a cancer where there are lots of treaments available now and many women live with it for many years. He may be being far too negative.

The key thing will be what her exact diagnosis is - each person's cancer is different so your mum's treatment (if she has cancer, fingers crossed she doesn't) will be different according to what it is. If she has cancer, the oncologist should be able to answer a lot of questions about likely prognosis - many people do live longer than this but it's also good to prepare yourself and be realistic.

Finally your mum and dad may make different decisions to those you would do or those you would like them to make. You have to let them do it - it's fucking hard though

How high was her Ca125? Mine was 130, I'm the same sort of age as your dm, and scored high on the risk of malignancy index. (Age, scans, Ca125 and fluid in the pelvic area.)

Like polka, it was a Borderline tumour, same sort of size. Practically 100% 5 yr survival rate.

I think your DF is being a bit pessimistic. She hasn't even had a scan yet. Perhaps that's how he copes best with things, preparing for the worst. I find I do better if I take things a day at a time and hope for the best.

Ov-ca is notoriously difficult to diagnose. The symptoms are the same as many benign conditions. The Ca125 score can be raised for many reasons, in my case because the tumour was rubbing against other organs.

It'll take a bit of time to find out one way or the other. It's really the pathologist who makes the diagnosis post-op, tho' my gynae-onc surgeon had a pretty good idea mine was benign, unlike Dr Doom, the gynae at my local hospital who was v gloomy. I found a low dose of anti-d's helped me cope with the waiting period, a godsend.

Fingers crossed your dm will be as lucky as I was.

My mum. She had OC and had chemotherapy. The bad news is that the chemo caused neuropathy so she needs a stick to walk with outside. The good news is she's still here, she's fine and it was 6 and a half years ago now

This is the toughest time. I know how you are feeling. Don't google and just take each step as it comes. It will get better

thank you, thank you, thank you. This has given me what I need to get through this first stage. You are all awesome. x

How did your mum get on yesterday, op?

Any news OP ?

I really, really hope that your mum is fine but a positive attitude will make no difference to her outcome at all

My mum had an incredibly positive attitude all the way through but sadly it didn't help at all- she did have a hideously aggressive form though

So the results of mum's CT scan came back yesterday. They could not see anything on the ovaries but instead the growth is on her peritoneum, which is a membrane that covers the abdominal organs. My dad described it as like a sort of layer of mould, rather than a solid tumour. He still has his doctor hat firmly on and is refusing to don his "father" hat - refusing to be positive in any way and insisting it won't be curable etc. I shouldn't complain though, he is being amazing at looking after mum.

Long and short of it is she has inoperable cancer, although they think there is a shot at shrinking it with chemo. Peritoneal cancer is treated like ovarian cancer and apparently chemo can be very effective. But for some people it doesn't work at all.

My poor mum. She is terrified. She has always been terrified of dying. She has always had nightmares and slept badly. I wish she hadn't wasted so much time worrying about the potential horrors of life until they actually happened. On the plus side she has started taking antidepressants which is a mild victory. I wish we could get her to eat more and relax more though. I had all these naive ideas that I would make delicious smoothies and give her foot rubs and stuff and she would feel better. Needless to say neither have made any difference, she won't eat and the foot rub attempt was spectacularly ineffective. I feel like I am the only one who is being slightly positive. My brother said to me that we should just go to Dignitas because he doesn't want to watch her suffer. That was a bit depressing.

Sorry to ramble. This is very tough. If anyone has tips for getting a cancer sufferer to eat or for surviving chemo that would be wonderful.

I am so so sorry - my mum had peritoneal cancer.

Being honest it's not a good prognosis.

I would be very happy to share what helped and what didn't - please feel free to PM me as it's all still a bit raw

Sorry to hear this microferret. Sadly, as basildonbond says, peritoneal cancer does not have a great prognosis. You asked earlier for stories of people living longer than expected though - my mum was diagnosed with secondary peritoneal cancer and told her likely life expectancy was less than a year - she in fact lived for a further four years and for most of that she was in fairly good health and able to live a normal life.

I'm sorry to hear this. Have you and your brother thought about contacting one of the family support groups for help for yourselves ? It's a difficult time and it's hard to know what to do / say to help your parents . And it woudl give you both somewhere safe to off load your own feelings .

I'm assuming your brothers comment about Dignitas was just off the cuff. Please make sure he doesn't mention anything like this to your mum. They are an organisation for people who want to decide when THEY die . They are not for family members who feel that suporting their loved one is too hard so they send them there !

it sounds like your brother is very fearful of what is to come and perhaps have out of date ideas about end of life care . There is excellent palliative care in many places in the UK , and as a PP poster said, people can live much longer than they expected and be relatively well for much of it .

I think it woudl help you both to get informed about what care and support is out there for your whole family .