Can anybody share the experience of being told 6 months to live with OC, themselves or family members.

My sister was diagnosed with Stage IV OC about two and a half years ago and has had ops and chemo. She has now decided that she does not want any more treatment and will let things take their own course. The doctor told her a month ago she has about 6 months to live. Is anybody else in similar position?

[Hidden]

Hi, Sandra has been fighting for over 4 yrs and when she was told that there is no more chemo we knew we were coming to the end. They told me 3 to 9 mths but since being put on Tamoxifen her lympoh nodes started to shrink and now seem stable, she looks well, getting stronger. Scan results this week will tell us more plus her CA readings due on Fri. We hope that the hormone therapy does the trick and we will still be around next year. Perhaps your sister could enquire about Tamoxifen as a last resort. No side effects so far apart from occasional rosy cheeks. Love Paul xx

[Hidden in reply to Hidden]

Thanks for your reply Paul. I will certainly talk to her about the possible Tamoxifen option. I am pleased for you and Sandra that it is helping her. I do hope the scan results are as you would wish them to be. Fingers crossed and heartfelt prayers sent. Love, Caroline xx

[Hidden]

Hi there..I can see that it must be very hard to bear watching your sister deal with everything. I feel for my sisters who have to look on, but there's nothing I can do to make it right. Did the oncologist say that she has 6 months to live without treatment? What are the treatment options open to her? I don't really know what to say since I don't really know your sister's circumstances and nor am I her. When I found the whole thing unbearable and wanted to take the same course as your sister, I was offered counselling and this helped me make the choices which I felt were right for me. Everyone is different. This is not one disease but a range of diseases and different people have different experiences. Has your sister spoken to her Cancer Nurse Specialist or her oncologist about her decision? This is a complex disease and it's very difficult to cope with. It will be hard for her and difficult for those close to her too. What she does have though is a sister who cares about her very much which is important. Ruth at Ovacome is a good person to speak to. She has a lot of experience and will be able to at least guide you through this. Her number is 020 7299 6650. Sending you all good things... Tina x x

[Hidden in reply to Hidden]

Hello Tina. Yes, the oncologist said 6 months with no further treatment. They have offered oral chemo as she has found the last two rounds of iv unbearable, but she feels that she is just 'prolonging the inevitable', unfortunately she has not had much fighting spirit through any of this as life has dealt her much sadness beforehand. We lost our Mum to ovarian cancer 16 years ago too amongst other things. It was a real shock to find my beautiful sister up against the same. It is so hard finding the right balance between encouraging her to keep trying more treatment but ultimately, respecting her choices and supporting her through these. I certainly don't want her to suffer any more than necessary. I just wish I could swap places and give her a break. Thankyou for giving me Ruth's number I will definitely give her a call. Sending you love and healing thoughts yourself, whatever is happening in your own situation. xx

[sharonforce]

So sorry to hear you are going through this.This may or may not be relevant for your sister as she may have decided against all types of treatment.

As your mother had ovarian cancer as well as your sister, has your sister been offered genetic counselling/testing? The reason I ask is because it can open up options for treatment other than traditional chemotherapy. My ovarian cancer was caused by a genetic mutation (BRCA 1) that I inherited from my mother. There are trial drugs (such as parp inhibitors) that are used specifically for treating genetic cancers. I was on such a drug for a year. It was just tablets I took daily and I had barely any side effects.

Best wishes

Sharon

[Hidden in reply to sharonforce]

Hi Sharon, thank you so much for taking the time to reply. I haven't heard of this option before and am very interested to look into it and talk to her about it as soon as possible. I think they did genetic testing but not for her benefit, simply for research, so she wasn't given the results and didn't request them. I will speak to her boyfriend about it as he is the one who has been involved in all her meetings with the oncologists. Love, Caroline xx

[Hidden in reply to Hidden]

Just had a look at your profile Sharon and so, so sorry to see all you've had to go through. Just wanted to send you a big hug through the airwaves xx

[sharonforce in reply to Hidden]

Hi Caroline

Thank you fot the virtual hug - always appreciated. I am doing very well now and have recovered from my surgery.

The results of the genetic test are important as it can affect the whole family so you might want to see a genetic counsellor. Testing positive for a BRCA mutation means you are at higher risk of developing breast and/or ovarian cancer. If someone tests positive for the BRCA genetic mutation there is a 50% chance that their children could inherit the mutation. So in my case my mother (who has never had cancer but has tested positive for the BRCA mutation) inherited the mutation from my maternal grandmother (who had breast cancer and then ovarian cancer). I inherited the mutation and developed ovarian cancer at the age of 48. My sisters have now been tested - one is positive, one is negative. My children have also now been tested - my two daughters are positive unfortunately and my son is negative. Finding out does give you options including increased surveillance and prophylactic surgeries. My sister, my eldest daughter and I have all had double mastectomies to reduce our risk of breast cancer, and my sister has also had her ovaries and fallopian tubes removed to reduce her risk of ovarian cancer.

best wishes to you and your sister

Sharon

[vipervictoria]

Any prognosis is an educated guess - most doctors will happily confirm that. Your sister - and you as a carer for her - have already faced a double whammy from this disease. There is some excellent advice above, especially from Tina. Paul & Sharon are also oc expert through personal experience, and both give advice that I feel would be wise for you to explore, as options that you can discuss with your sister when you and she are up to it.

My personal feeling is that this disease is so unpredictable that a terminal prognosis is something we should all be prepared to receive, whatever stage we are presently at.

It seems to me that your sister is quite reasonably in what Bunyon described as 'the trough of despond'. This is something that I think all women diagnosed with OC experience at some time in what oncologists call our 'cancer journey'. For me, it was when I was midway through my first chemo - the surgeon had led me to believe that the suspicious lymph nodes were clear, and all visible cancer had been removed. Then, a few days after Christmas 2009, my oncologist told me that, in fact, my cancer was stage 3, and then my GP told me that there was also lymph node involvement (two were found in the disease ridden left ovary). That gives a prognosis of survival over 5 years of 25%.

I went into a tailspin of grief and despair, but my husband was with me constantly, at any time of the day or night he would comfort and reassure me, pointing out that statistics apply to groups, and that, because I was relatively young and fit, and I was doing all I could in terms of relaxation therapy, yoga, supplements etc., to survive, it was entirely possible, probable even, that I would survive. As Tina says, Ruth at Ovacome was literally a Godsend in terms of compassionate, wise and incredibly helpful advice. My GP - and indeed the entire practice - was fantastic.

Four years later, here I am, still free of a recurrence. What has helped me a lot recently is counselling from a psychologist who has had cancer herself. My chances of dying from cancer before the 5 years are up are very low, but I have to accept the fact that I will be monitored every 3 months for in all probability the rest of my life. I can live with that.

And finally, a story of hope - I have a great friend who lives in Los Angeles. She is a PA - our equivalent is a nurse practitioner. More than 7 years ago, she was given a terminal prognosis of 3-6 months. She is still alive today. At the moment, she is on chemo, her 17th. But she still works one day a week, lives at home, her youngest daughter is at University hoping to study medicine after she's got her first degree, her eldest daughter is about to give birth to her second child in a few weeks time.

As Miriam Stoppard said on TV, where there is life, there is hope. We all choose our own path, and there is a stage in cancer when you become tired of the endless rituals of treatment, monitoring, recurrence and then treatment again. Your sister is so lucky to have your love and support - that is invaluable. I hope that somehow or other her despair lifts, and she will find something to help her feel better and hopefully keep this grim disease away for a while. Very best wishes, Vicky xxx

[Hidden in reply to vipervictoria]

Hi Vicky. Thank you for your response and your inspiring tales of people doing well. You are quite right about a prognosis only being an educated guess and also that a terminal prognosis is one to naturally expect in these circumstances - unfortunately my awareness of that still didn't stop the overwhelming sadness and, yes, shock, to hear that perhaps the time is drawing nearer. I think when times were going a little better I put the more worrysome aspects to the back of my mind. That said, nobody knows when the time will come for any of us to make that ultimate transmission. I hope you enjoying are each precious, present moment. You sound lovely and positive and I hope that you can keep that way - I am sure it will stand you in good stead. As you say, there is a lot you can do to help yourself and you are lucky to have a lovely supportive husband too. I wish you many many happy times ahead. Love, Caroline xx

[thehusband]

Hi, my wife was diagnosed with High Grade Serous OC (stage 3c) in Nov 2010. Fast forward to Oct 2011 after the normal hysterectomy op plus 6 rounds of carbo/taxol, which had finished back in May 2011. Symptoms had come back in the Oct and our Onc told us that nothing else would work and that my wife had 3-9 months left to live.

Because the Onc painted such a grim picture of what further treatment may do initially my wife agreed not to even have 2nd line treatment and accept her fate. Over the weekend i was able to convince her to keep on trying 'just in case'.

We had more treatment and some good quality of life including numerous trips abroad and weekends away in the UK.

Now we didnt have a happy ending because eventually our Onc wouldnt do further treatment and she died in Aug this year. Of course we always expected that day to arrive, but we felt that it could have been extended with a different Onc that had a positive instead of negative outlook with a 'can do' attitude, or at least a lets try and do attitude. As others have said where there is life there is hope.

My wife wanted to give up numerous times, but that feeling always passed and mostly she had hoped, as did i, that she would be able to live (with treatment) for a lot longer. I think it is natural to think at times how your Sister does, but as others have alluded to there are 'options' in treatment like Tamoxifen or many similar ones, that dont take your time up because its just a tablet, but very often give you time.

Its such a hard decision to make for the sufferers and for those that love and care for them. As your sister was only given her prognosis a month ago, maybe she just needs a bit more time to make the next step decision.

Ultimately i guess there is no right decision, only the right decision for the person with OC. For myself i am glad, as was my wife, that she kept trying and i would give my limbs for even a minute more with her.

There are plenty of people with all sorts of cancers walking around years later after a bad prognosis, so irrespective of what your sister decides i wish you both the best of luck.

[coochy in reply to thehusband]

Hi

So sorry to hear your lovely wife passed away. I am 47 and exactly the same prognosis as your wife, I finished chemo in July this year, and had my first 3 month appointment which went well. My oncology doctor told me after my chemo i am in remission but if it does come back there's not alot they can do for me.

I struggled with chemo and after it i said never again, but as time goes on my views have changed and also reading other peoples stories has helped.

I can't begin to imagine how the 2 sisters are feeling, as i have sisters and a brother and its sad now this awful disease effects everyone near and dear to you. Good luck and best wishes to both of them.

Elaine x

[vipervictoria in reply to coochy]

Elaine, there is hope for you. The first year or so after chemo is the most difficult time, in my experience. But I hope that my own story gives you hope (?!?). I was just a few years older than you when I was given my prognosis, and nearly four years later, my prognosis has changed. Terminal is always a possibility, but the chances increase with the length of your remission that a recurrence will be treated successfully. New drugs are being developed all the time and I know personally several women who have had one recurrence after initial treatment and then gone on to have up to 20 years free of a second recurrence. When I was having my first chemo, Ruth at Ovacome explained that many women experience chronic rather than terminal disease. That means, they have a recurrence, more treatment, then a long period of being recurrence free. So, some of us can use the term 'chronic' rather than 'terminal' in terms of the likely pattern our disease will take. I'd take chronic over terminal any day. Hope this helps a little. Vxxx

[Hidden in reply to coochy]

Dear Elaine. Thank you for your good wishes. I am just thinking of you and hoping you are keeping well. With thoughts of healing to you, and love, Caroline xx

[Hidden in reply to thehusband]

Thank you for taking the time to reply to my post, even in your time of sadness, I really appreciated hearing from you. I am so sorry to hear that you eventually lost your wife. How lucky that you were able to enjoy some trips away together, I hope they furnished you with some beautiful memories of treasured times together. We are making sure that we appreciate the precious moments we have together ourselves. My heart goes out to you, sincerely, and I hope you have good support of close friends and family at this time. When my mum died of OC 16 years ago, I really wanted a sign from her, to know she could still hear me talking to her. One morning in February 1998, 5 months after she died, I received a letter from my sister, telling me that she had just read about butterflies often being given as a sign of communication from deceased loved ones. I went out shopping that day and during the car journey past bleak winter fields I asked my mum whether she could give me a butterfly as a sign from her. I 'knew' I was being ridiculous as it was winter and I realised it wouldn't really be possible at that time of year! After a while shopping, I was drawn to the window of a shop that I had never been in before, over years of shopping in that town. There was a thick, Peruvian hand knitted jumper with little dancing people on it. I decided to go in and look in closer detail and was directed to a big tub of jumpers at the back of the shop. I lifted out each jumper to see the slightly different patterns but when I lifted the second from last jumper my heart stopped. The very last jumper in the pile had a great big knitted butterfly on it! I was reassured instantly that my mum had heard me - i dare say she was probably laughing down from above at my surprise! (there have been a few more signs over the years, although for large stretches of time I have questioned her presence, and I don't want to hold her back from being free) but that one has always stayed clear in my mind, how else could she possibly have given me a butterfly sign in the middle of winter!? Warmest, kindest thoughts to you, Caroline xx