Coping with awful news!

[Mary]

Last Monday I learned that my cancer was at Stage 4 and that because some small lesions have been found on my liver, I had 2 to 3 years to live. Am really struggling in coming to terms with it all and feel completely devoid of everything. The tears just won't stop coming. Has anyone else been in a similar position and, if so, could they share how they coped with the situation with me?

[spanishanna]

Mary I am so sorry to hear this news. On an earlier post I mentioned that in Jan 2009 I was given months to live. Oh no this cancer will not beat me.

I am on maintenance chemotherapy and will be for the rest of my life. It will be 5 years in Oct since I was diagnosed stage 111C. I have coped with the support of my family and my own determination and a wonderful Oncologist.

May I ask whereabouts you live please, as I know the Royal Marsden are going to start trials using Avastin with another chemotherapy. Avastin has been my life saver. Yes there are days I feel down and fatigued, but I am so thankful to have seen the birth of my first grand child, see her walk and I am determined to see more mile stones in her life.

I had secondary tumours in lungs and lymph nodes, these are now in remission and the tumours around the liver, kidney and abdomen have shrunk by about half. I take, with the authority of my Oncologist, Tincture of Milk Thistle. This is a liver protector and helps protect the liver against the side effects of the chemo. I also take other supplements to boost the immune system, as it needs all the help it can.

Anna

[Fitzy in reply to spanishanna]

Hi Anna - I was interested to read about your treatment with Avastin, and the trial that the Royal Marsden will be doing with Avastin. I know Avastin is expensive and not readily available in UK. I am 2 years from surgery for OC 3c. Had all 'naked eye disease' removed, but latest CT scan shows that I have 2 enlarged lymph nodes. Also been having some urinary and bowel problems (have always had bowel problems though). My Oncologist is suggesting that maybe it is time to have more chemo and possibly be included in the ICON6 trial. I have agreed to this but wonder if the Avastin trial is available also - she didn't mention this to me. I'll probably be put on carbo with another chemo, along with the trial drug (or placebo). I'm really confused as to a) whether I should start chemo again yet (nodes are 2.5 and 3.5 cms), or b) wait another 3 months, and/or c) be involved in the ICON6 trial, or another more appropriate one? would be interested in your advice on the Avastin. Many thanks.

Colette

[Mary in reply to spanishanna]

Hi Spanishanna,

Can you let me know where you get Tincture of Milk Thistle from and how much you take. Mary

[spanishanna in reply to Mary]

Hi Mary,

My Tincture of Milk Thistle is manufactured by Bioforce in Switzerland but I get it through A. Vogel in Scotland - 01294 277344. You can also buy it in any good health food store. I take 20 drops twice a day in water. I have been taking it for a number of years now and the Oncologist is in agreement with this.

Anna xx

[wendydee]

I can only say how sorry I am, maybe there will be a miracle, some new treatment, some extra time, anything to keep hope alive for you. It is understandable, feeling like you are right now. You possibly need to get in touch with someone for some professional support on how to deal with your feelings, maybe Macmillan, maybe the Ovacome nurses can help. The support line is 0845 3710554. They may give you some info or support.

My thoughts and prayers are with you,

Love Wendy xx

[Hidden]

Dear Mary,

So sorry to read your news. You are in extreme shock at the moment, but as this sinks in do be aware that many others have been in your situation and proved the prognosis wrong. Doctors can only go on statistical probability, and that is not necessarily good for you. Try to get over the shock and determine to find YOUR way through.

Wishing you all the very best,

Isadora.

[BusyLizzie]

Hi Mary,

I had to re-read your post because I thought it said 2-3 months to live. 2-3 years is still time to do things and have fun as long as you are not in pain and mobile. I am stage 3c and on first line chemo, but have faced the same prognosis from the very start, because the stats on the cancer research site show survivial rates for those diagnosed 3c and above getting to 5 years are poor. On my worst days, I have thought I may not survive a year because until you have been in remission once (if they ever use that word for me) I will not know how rampant the disease is. BUT having said that, I read the anti-cancer book some of our great ladies recommended, am drinking green tea, ginger drink once a day, as much tumeric and black pepper as I can, mushrooms, more fruit, cut out as much sugar as poss...plums until they come out my ear and go for walks every day. I try to be upbeat as possible to those around me, especially my husband, although he is supportive when I am down and whisks me off for one of those walks. One thing I find that really helps is having a few staycation breaks to look forward to in the short term. I suppose I am trying to tackle the prognosis in many ways....hope, diet, short term goals, keeping active but trying not to set myself up for a major shock if none of these work and getting practical things covered as quickly as possible (we got married when we found out my prognosis which will allow him to sort things out more easily if the worst comes to the worst). But don't give up hope...so many ladies here are carrying on with maintenance chemo and spanishanna's post is amazing. Thinking of you and hoping over the next few days, you can re-focus on the next few years and make sure they are as good as possible and keep that spark of hope so that if you make each day a positive one, as the anti-cancer book says, you keep those negative feelings of hopelessness at bay which do not aid our disease.

Love Lizzie

X

[Sarah23]

To Lizzie,

I was intrested to know why you were told that at stage 3c that you only had 2 to 3 years of life left? did you have difficulte surgery? did you have chemo then surgery and chemo? did you have alot of small tumour on your omentum which where not able to be removed? you can get to 5 years and beyond you just dont no, and why would a oncologist say something like that?, he should be supporting you, with postive imformation. I phoned Target and they said they hear of lots of women of all stages getting to 10 years and still doing well.

Sarah P.

[BusyLizzie in reply to Sarah23]

Hi Sarah,

I had less than 0.5cm left under my diaphram that they could not remove, my omentum was completely removed. I have been told they saw no evidence of it going to my lymph nodes, but my cancer had obviously spread outside the abdominal cavity hence 3c. My stats come from the cancer research site. I rarely see my oncologist, I see his registrar, and she said 3-4 years expentancy. My surgeon said the op had given me at least 18 months, and with chemo he hoped for years more, but I know the stats are not good, and I don't know what grade my cancer is. I did ask about the cells, and they just said mixed cells, but I will ask again today as I am seeing her this afternoon. I am aiming for 10 years, as we all should be

Love Lizzie

X

[Fitzy]

Mary, please do not give up on your treatment. I was diagnosed with stage 3c in Aug 2009 and was in a very low, depressed state for months after. But I came through it and have since read some wonderful, inspiring stories on this and other OC sites, of women with advanced stages of OC who are surviving many years later. Every woman is different and reacts differently to treatment. So wipe away your tears and go enjoy your life and believe that your treatment will work, and also that there are new advances and developments in treatment being discovered every day so don't despair. Love and hugs xxxxxx

Colette

[Hidden]

Hello Mary

I am really sorry you have been given this news but like the previous comments maade, there are plenty of examples of people still going strong despite a terminal prognosis. Set yourself some goals and do the things you love doing. I know the treatment itself can bring you down and I have just been diagnosed with a recurrence so this time round will look for ways to bring me out of any gloom that may descend. I will be having carbo and taxol and also have agreed to the ICON6 trial.

Lots of love to you.

[Fitzy in reply to Hidden]

Anne - I am in same position as you with my first recurrence and will be joining the ICON6 trial, but with carbo and another chemo, not taxol as it is so toxic and my Onc doesn't want me to have it again (yet!). So perhaps we could compare notes. I wont be starting my chemo until end of October as I want to have a holiday beforehand, but please let me know how you get on.

Colette

[Hidden in reply to Fitzy]

Hi Fitzy

Will let you know as (hopefully) should be starting the chemo before you.

I sort of thought I needed to have the treatment straight away but it seems like a good idea to have a holiday beforehand as I will probably be frazzled when I have mine - I feel like I am working hard to get everything done at work.

Hope you have a lovely holiday

[Meryl]

Hi Mary

My amazing oncologist told me 2 half years ago that my OC was incurable but it's only terminal when there is nothing more they can do. He said it's now treated as a chronic disease until no treatment options available and there are many with new ones coming on stream all the time. I'm now on 3rd line chemo and very tired, having had two remissions each of 6 months, but feeling well.

It took me a while to realise that all the good things in my life, and there are many, are still there despite OC. My husband, children and grand children, friends, lovely village where I live, opportunities still to travel the world, buy clothes even do the everyday things as usual like shopping at Tesco !!! I am genuinely very happy and although I might only have a few years left (I didn't ask, don't want to know and I'm sure my oncologist would'nt dream of guessing) I'm determined that OC is secondary to my life and not dominating it. So please Mary enjoy the good things and the more you do the less OC will depress you.

What a fantastic forum this site is, the ladies who contribute never fail to inspire me by sharing their experiences and supporting one another. Thank you.

Meryl XXXXXX

[spanishanna]

HI Everyone, I have been out all day so have only just caught up with your posts.

The Icon 7 trials that are commented on, my friend who is under Prof Lacey at The Royal Marden, went on those, but the side effects were too great for her and she had to be withdrawn. She is starting on the new trials with Avastin and a new drug new drug Ombrabulin which is also a vascular disrupter, but in this case it breaks down the walls of the blood vessels. The feeling is that the two drugs could complement each other, however there is a big question over the side-effects as both have the same pattern of side-effects particularly the most severe ones that relate to the heart and bowel. They don't know whether the risks will be doubled or not hence the phase 1 trial to look at toxicity and dose, and the extensive screening and monitoring. So as you can see there are possible risks.

Yes the Avastin is indeed expensive, my Insurance Company couldn't by law pay for the treatment as the drugs were, and are not licensed for the treatment of ova, and I was on drug trials which they won't pay for, so we had to pay for the first two sessions until my Oncologist could get me as his patient in the Spanish Healthcare System. To me Avastin has been my life saver, but it doesn't work for everyone and until now has always been used in combination with other chemo drugs. Unfortunately my cancer marker is slowly rising but the scans were brilliant, so I was put on Avastin and Carboplain. After only two sessions the cancer marker has dropped. Hopefully if we get it down to a good level I think I will just be maintained on purely Avastin.

It is absolutely true Merry ova is classed as a chronic disease as long as there is treatment for you and I just hope I hang in long enough for more to come through. It is coming all the time, we just have to be proactive and really keep searching the net.

Mary, my family will tell you despite the fight I am putting up against the disease I still am wary of pre planning, won't book a holiday for next year - will I be here ?? But deep down in my heart I am going to fight to be here because in my mind this cancer WILL NOT get the better of me, well not without a fight anyway.

Someone mentioned diet, Busylizzie I think. Diet to me is so important. One thing my Oncologist has stressed is keep red meat to a minimum as the body doesn't expel the proteins in red meat very quickly. I class red meat as anything on 4 legs !! Sugar also feeds cancer. We are fortunate living in Spain so have so much fresh fish to eat and also eat some veggie food and always try and eat as much organic as we can. It isn't as expensive here as in the UK thankfully.

There is so much in life to live for - hubby, my children, my beautiful grand daughter, my animals and to be fortunate enough to be living in such a beautiful Country.

As Fitzy said, everyone responds differently to all treatments and I believe no Oncologist is capable of predicting how long one is going to live.

Anna x

[ScardyCat40]

I was told when I had my first diagnosis that this cancer wasn't curable and on the target ovarian website they consider this disease to be a chronic condition but that its possible to live with it with support and treatments.

The depressing side is that if you are on benefits you seem only to be able to make a claim for some benefits as a cancer patient if you have been told you only have 6 months to live.

[MargaretJ]

Benefits are available if your condition is "terminal" One of my colleagues at CAB had a client who had been getting them for 8 years! I got AA and a disabled badge immediately courtesy of my MacMillan nurse with no requirement to qualify under the " had it for 6 months and going to continue for more than 6 months". AA is not means tested either and means I can pay for help in the house and garden.

Margaret

[franwen in reply to MargaretJ]

Very interesting, but sorry if I sound thick but what is AA

[MargaretJ]

Sorry Franwen! Acronym happy! LOL! AA is Attendance Allowance!

[MargaretJ]

I'm not sure if you get AA under 60 or if it is another benefit! A good source of info is adviceguide.org.uk the CAB advice website. Also local CAB is v good T benefit advice and claims if Macmillan do not undertake the service. I have great support from my community Macmillan nurse attached to my Dr's surgery.

[franwen in reply to MargaretJ]

Of course it is, doh! silly me, Got myself an interview with the CAB tomorrow, so thanks for tip.

[Marianna]

Hi Mary. Sorry for your news. I went for a simple gall bladder op and 6 weeks later admitted as emergency as i was so bloated and in pain. given a op and told that i have cancer of omentum and that i was terminal.and nothing they could do to help me. The shock of that bit of news is awful and so hugh it is hard to cope. but the tears are good mary. I also shouted alot out in the garden about how unfair it was. i found that me macmillan nurse really supported me and my husband. I started chemo, after being told that if i did not i would not see Xmas. (this was end of Oct) . was put on Carboplatin. and by Xmas it had all shrunk down . I have now been in a remission of sorts for 18 months. Have been told now that they expect it to come back soon. I have always kept positive and try to keep happy as much as possible. Sorry it sounds contrite but do try and keep as happy as you can. Think of all the wonderful times in your life being depressed about our situation can only harm us . I know we are all going to die sooner or later but i dont want it to be sooner. So keep the faith and you will come to some terms with your news. I talked about it so everyone could get used to it. Then i did not feel so awkward when i was down. I dont know if my post will help you or not but there are a lot of us in the same boat. Good luck.

[Hidden]

Dear Mary

On reading your post I realised my diagnosis is much the same as yours but I've never asked the question 'How many years?' because each one of us is different and the doctors just don't know. Nobody has used the word 'terminable' at my local hospital - just 'incurable' and 'treatable' and that makes me feel as though I'm living with cancer and not dying from it.

Unfortunately doctors do seem to give you the worst case scenario. I've assumed it's because they fear reprisals from patients if the outcomes are disappointing. I was told I'd have 'bad days' during chemotherapy, that I'd feel exhausted and might feel sick. I would have to carry a card everywhere and take my temperature every day. I was also told not to use public transport, avoid crowds, and not to swim (which I love). The prospect of missing the things I enjoy and having to behave like an invalid was terrifying at first, but as I went through the chemotherapy I became the judge of what was best for me. I was lucky not to suffer much in the way of side-effects and I found I could take part in all the activities I enjoy so long as I gave myself time to rest if needed.

I hope you find as you continue your journey that you can derive pleasure from the things you have always enjoyed. It will help to put the diagnosis and the worries to the back of your mind. It would be such a shame not to enjoy a glorious period of relative good health whilst we have it.

I wish you well.

Annie