New here ...success stories/advice needed...

[Katedunn86]

Hi,

Not even sure what I want to get out of this, I guess I just need to vent.

In February my mum was diagnosed with ovarian cancer from a 'cyst' she had removed from her chest. She had no symptoms whatsoever and I know this is common with this type of cancer. Anyway, she has undergone 3 sessions of chemo and a CT scan where they told us it was stage 4, she had an 8cm tumour on her left ovary, speckles on her womb and tumours in her abdomen and lung. She went in for a hysterectomy 2 weeks ago where they found another lump on an artery in her chest, 1cm away from her spine. They removed all tumours they could see bot not the tumour on her lung and she was lucky as they thought she would need a stoma. Thankfully she didn't!

She is now recovering, however, she is so down she keeps saying I've gone through this whole Op and all this pain but I'm no better off as I'll always be incurable. I know this is the case and it sucks but I need to get her back to her fit, happy care free self. She's due to undergo another 3 chemo sessions throughout July/August. After this I intend to make amazing memories.

Has anyone been through this or similar? I know no one can give a life expectancy but from the stats you see everywhere it gives 17% chance of survival for 5 years! anyone have any better stats than this from a personal experience?

Sorry for the post!

Kate xx

[Katmal-UK]

Hi Kate. I do! I was diagnosed Stage 3, told I'd probably have 'about 2 years'. Well despite two recurrences still here in my tenth year, currently NED (no evidence of disease), working full time. My mum was diagnosed stage 3 told she'd have approximately 5 years. Her O/C never returned. Unfortunately she succumbed to bowel cancer many years later. Bit late to say but stay off google, Statistics are just that, statistics. They can't tell you what will happen to your mum. Your mum is unique and not a statistic. Please feel free to ask any questions. Big hug, Kathy xxx

[Katedunn86]

Thanks for quick reply Katmal,

I know we shouldn't search google and I've always avoided it with minor illnesses but I suppose we are searching for positive outcomes and finding the worst. Although they have said my mum is at Stage 4 they haven't told her how long they predict she has left, do you ask them? In my mums head she has 6 months but I'm certain she has longer with us she has to much to do on this earth before she goes anywhere.

They said the tumour on her lymph node in her chest is what made the cancer stage 4 and the surgeon told her her cancer is taking an unusual pattern to what he regularly sees. It's travelling through blood rather than close to the already cancerous area. As it's been found in a lymph node I'm now worried that it'll spread to further lymph nodes, I guess this is all a massive worry for all of us.

I know no one has a magic wand and no one can really tell us the answers we want to know, and I know no one is invincible I just never expected this to happen to 'my' mum.

She will never be cured but I just hope the chemo keeps attacking the cancer she has left.

[Katmal-UK in reply to Katedunn86]

Hi Kate I think you ask only if you are prepared to hear the answer. To be honest I didn't actually ask the stage of my cancer or how long I had because I didn't want to know. I don't need the ins and outs. I learnt both from people who even though they had been told I didn't want to know told me anyway. Not wanting to know the ins and outs is my coping mechanism. Maybe that's what has got me this far. I do the chemo, participate in trials, carry on life and work as usual and lets face it I could get run over tomorrow or struck by lightening tomorrow. I won't ever be cured but it can be managed. I know what you mean about not expecting this to happen to your mum. It happened to mine, cancer happened to my dad and me and my older brother. Lets hope your mum has a good response to treatment. Kathy xxx

[Katedunn86]

See my mum is the complete opposite, she needs to know everything, I think it's her way of trying to stay in control, she even resorted to watching hysterectomy videos on You Tube before her op!!!

So is stage 3 also classed as incurable as well as stage 4? I thought it was just the latter (sorry for the ignorance!) I have looked into some clinical trials but all I have found is trials for newly diagnosed but my mum is half way through chemo , surgery complete and due to start final 3 chemo sessions in a few weeks.

So sorry you have experienced way more than anyone's fair share of this. Life is so damn cruel sometimes.

[Choski in reply to Katedunn86]

I was a stage 1 who recurred with 5.5 months and I am now palliative - this means incurable but managing side effects and symptoms. It it NOT terminal and you must take that in.

You can be palliative at any stage but that also doesn't mean that there is no hope.

Mine came back in my abdomen, peritoneal wall blood clots cleaning to both lungs, malignant ascites, on my lesser omentum.

Take care

Clare xx

[Katmal-UK in reply to Katedunn86]

Yes, stage 3 is 'advanced' and I have been advised that it is not curable but is treated as a chronic illness. The way your mum is dealing with things is 'her way' . People act differently. I've not buried my head in the sand. I have accepted I have cancer but just don't need to know details. I haven't reacted by changing my lifestyle or what I eat etc. Some people cut out dairy, sugar, become vegetarian etc. We all cope in different ways. Funny really because I am quite a control freak. I can't control this so I don't try. Trials are for all stages, this is my third trial. Might be worth asking your mums oncologist. Kathy xxx

[Hidden]

Hi Kate, stats are out of date and mean nothing, the doctors shouldnt even be quoting them at this stage. I was diagnosed in 2006 after tah. Had chemo to mop up anything left behind. I have recurred but I have also bounced back again. We are all individuals not stats. Your Mum is bound to be sore and fed up after surgery. She has no energy and would be expected to lift any thing heavier than a cuppa for six weeks. Every day she will feel better but you short by baby steps as in walk around the house then to the garden perhaps around the neighbourhood and increase time bit by bit and very slowly. Make sure your Mum is eating at the present time as well. Your Mum is not incurable better to say her condition is manageable same as high blood pressure, copd etc. This is food for thought and I wish you both the best.

[Katedunn86 in reply to Hidden]

Hi Suzuki,

thank you. Yeah I expect her to be down and I'm amazed with how well she is doing. s(she came out for my birthday meal last night)! Its just the little comments she makes about saying they have wasted their time operating on her as she doesn't have long left, how she won't see my daughters grow up etc. I've told her that these are all the reasons she should keep fighting. I guess it's just hard to try and motivate her when I'm not feeling particularly confident either. But my family are all trying and I'm sure she'll get back to her fighting self as the days go on. Her appetite isn't great at the moment, I've been advised to try her with some complan to get the goodness into her.

[Lyndy]

Umm...I am stage 4 and currently in remission...my Onc actually said to me ' I wonder if we've cured you?' There are stage 4 ladies who survive long term..not many I grant you but I'm not throwing in the towel yet! I hope your Mum doesn't either xx

[Katedunn86 in reply to Lyndy]

Thank you I'll make sure she doesn't! xx

[CallmeMum]

Hi lovely,

Welcome to this lovely forum all the ladies here are FABULOUS and very knowledgeable. I support someone with cancer and can tell you I know exactly how you feel! We got told initially she would survive 6 months with chemo at the very most! After 6 Carbo/Taxol 18 Avastin maintenance drug and a TAH she was told NED, later she had her 1st reoccurrence then went on 2nd line treatment Carbo/Gem had 4 of those and told she was dormant then she's had her 2nd reoccurrence and is now on 3rd line treatment of Carbo/Caelyx we are just over 2 years later and we make memories as and when we can, we're so use to it all now though we have adapted to this new 'normal' life. She's recently gone away with her granddaughter and has said depending how she feels may go away in the summer with her again!

Don't go and consult Dr Google he doesn't know much and he's way out of date also remember that the doctors only know what they see on their screens and read out of their books.

Good luck

Xxx

[Katedunn86 in reply to CallmeMum]

Do you know, I would never normally use Google! I hate it! But I'm in an office job so I find myself now and then jumping onto Google it is the devil!

Thank you xxx

[Biscuitqueen]

Hi I can't give success stories because my mum is stage 4 and has just finished her first line treatment and not sure what's happening at the moment with her situation but I just wanted to say that those stats are outdated and Google in our cases is not our friend.

Nothing can compare to the battles amazing ladies on here like our mum's but I do understand the struggle you're going through too, you are not alone. Looks like you're already staying strong but I wanted to send a hug over to you anyway x

[Katedunn86 in reply to Biscuitqueen]

Thank you, hugs back. I hope your mum is doing well x

[Paulmck]

My advice would be to ignore the statistics, we are all individuals. Wishing you the best.

[Katedunn86 in reply to Paulmck]

Thanks, I guess I just needed to know, but I can see now from these replies that I definitely shouldn't have looked. I'll be spending time making memories with her instead once she recovers from her last 3 chemos

[coalole]

Hi Kate,

I'm sorry your mum is down. When I was first diagnosed I looked at the statistics and was similarly horrified but the thing you have to remember is those stats are from people diagnosed over ten years ago. Treatment is improving all the time. They can't give a long term survival figure for people diagnosed now until 2027, by which time there may well be other breakthroughs in treatment.

And as for being "incurable", we will all die sometime, breathing is 100% fatal in the long term. I just look forward as far as I can and try to make the most of every second.

Diane

[Katedunn86 in reply to coalole]

Thank you. I know, I need to keep that in mind. and I guess you're right, we all have a timestamp on our foreheads, just need to spend our time making memories.