Re-posting this as I realised I'd ticked the box for members only ... and to give an update...

[jazzmum]

Hi there - my 73 year old mum was diagnosed with Stage 3 or 4 in November 2011. She was previously fit and well but it was ascites that first alerted us that something was wrong. She started weekly Carbo/Taxol in December but ended up in hospital after week 1 due to a blood clot and being very weak with the constant vomiting. She spent 5 weeks in hospital on the weekly regime but was told 7 weeks ago that it wasn't working and that she was being moved to a hospice. The doctors were very vague about the spread and have mentioned omentum, lungs and liver (I am getting the info second hand via my dad as they only seem to speak to him as next of kin).

She agreed to stop all treatment other than palliative pain relief and became very, very ill - two weeks ago we were told that it was now only a matter of days. Fast forward to this week when she has no ascites, no swollen legs, good colour, eating well, up and sitting in a chair for the first time in 3 months......she says she actually feels "well".

Has anyone else had a similar experience? The palliative consultant isn't saying much to us. We'd prepared ourselves for the worst 2 weeks ago and now we're preparing to take her out for the day......emotions are all over the place. I realise that terminally ill patients can "rally" towards the end but I didn't think she'd be improving every day for two weeks now.....

UPDATE - 10 days on from this post - mum is still pretty much the same which is great. The consultant has said that they don't know why she has stabilised but have told us that she will be staying at the hospice.

Am hoping to get a word with the docs tomorrow as I want to find out more about the type of tumour/spread - my grandmother (mum's mum) died at 72 of uterine cancer with a direct line back of my gt grandmother (stomach cancer); gt gt grandmother (uterine cancer) and gt gt gt grandmother (malignant ovarian disease - this was on the death cert from 1876).............. Does anyone else have any genetic testing experience? I know they say that Ovarian and Uterine are not generally linked but I'm a bit worried.....my GP has done a CA125 test which has come back normal level.

[Hidden]

Hi jazzmum

Hope everything goes well for your mum and that you will get the clarity that you need, sorry I can't be much help as they told me my cancer is not familial (don't know how they know that without testing)

My very best wishes Gwyneth xx

[BusyLizzie]

Hi Jazzmum,

Glad to hear your Mum is still doing well.

Since my Father died of Prostate Cancer, my oncologist referred me to the women's genetic clinic. I met with a lady from there who requested a blood sample and permission to analyze my biopsy block. She also took note of my family tree and history (there was not much history of cancer). They were looking for BRCA1 and/or BRCA2 gene alterations, which are known to be involved with breast, prostate and ovarian cancer. I came back negative which is good for my family but not so good for me as it means I am unlikely to gain any advantage from PARP inhibitors which can be used to attack genetic ovarian cancer. There are probably loads of other genes involved but they have not yet mapped them to ovarian cancer or possibly mine is just a chance cancer.

Love Lizzie

X

[Whippit]

Dear JazzMum

My first thought is hoping that your Mum and all the family can see this time as an unexpected opportunity to spend time together, say the things we rarely do about loving one another, and sharing the memories of happy times. I've found the last year to be one of friendships and family times which have been very precious. For me it's also been a time of preparation and organisation to make sure my affairs are in good order.

I do hope your Mum is comfortable in the hospice. It's good you've been able to taker her out in the lovely spring sunshine. She and your Dad have had a lot to take in and it's a terrible time for you. My own daughters have found it very difficult to cope and both have struggled to come to terms with the disease and the expectation that they'll lose their Mum at an early age. To my mind, terrible to lose parent at any age. My Dad died last year at the age of 91.

I'd imagine you will want to talk to your GP about genetic testing due to the history of cancer in your family. As Lizzie says they're looking for a pattern of ovarian, breast and prostrate cancers in the family. My sister had breast cancer then two unrelated cancers, my Dad had a benign prostrate cancer. Other relatives can enquire about genetic testing on your behalf. My daughters were worried and it was one of their GPs who processed the request so my blood is currently being analysed for BRAC 1 or BRAC 2. We received counselling because there are implications for my daughters and grand-daughters but we feel it's better to know and be forewarned. We had help to consider the possibility of bringing forward plans to have children and then having evasive surgery to avoid Ovarian Cancer.

There shouldn't be a massive worry to press ahead with the genetic testing right away and you may want to do this when you have less worries on your mind.

With best wishes

[jazzmum]

Hi All - thanks for your replies. Quick update - mum is still feeling "well" but is still unable to move from the chest down other than very slight movement of her feet. Finally spoke to her palliative consultant this afternoon who confirmed that her primary cancer is Ovarian and that the spread is to the peritoneal cavity and lining.

He thinks that her sudden wellbeing is due to the chemotherapy "kicking in" after stopping it 10 weeks ago ?? She had held on to most of her hair until a couple of weeks ago and now it is coming out in handfuls!

Still a bit unsure what to think about all this!