prognosis/Statistics?: hello everyone, After... - My Ovacome

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prognosis/Statistics?

Daughter1 profile image

hello everyone, After reading a number of articles online about ovarian cancer and survival statistics/prognosis I stopped reading as they upset me too much. this is now the only site I look at. Are there any people out there who could give me some positive stories, those that have beaten the statistics?

28 Replies

Hi Daughter1

Welcome to the club no one wants to join...there are many, many good news stories on here including my own..I am in remission after having a recurrence,I was given palliative chemo to attempt to shrink a tumour.. but better than that my tumour has now gone.. and I have been in remission for nine months now...my first remission lasted two and a half years...there are many people on here that will encourage you best wishes love x G x :-)

Hi

I know exactly what you mean, it is very disheartening and upsetting. There are many stories of women on the internet of women who have done much better than was predicted.

Also, statistics can give quite a distorted picture. This is a wonderful article on statistics by Stephen J Gould who was a scientist who was given a few months to live after his cancer diagnosis but went on to live for another 20 years: http//cancerguide.org/median_not_msg.

Best wishes Monique x

Hello!

Remember Daughter1, you are not a statistic - none of us are! When I first learned way back in 1999 that Stage 1V Ovarian Cancer had a 5% survival rate, I thought to myself, "Someone has to be in that 5%, so why can't I be one of them?" Even so, I know how hard it is to face the expectations of those around us (including our Doctors and medical staff), especially when they talk about "getting your life in order". You have to be very strong and look for women who have received a negative prognosis, but who have beaten the odds and survived. I've been in remission from Stage 1V Ovarian Cancer for almost 13 years, in April it'll be 14 years since my diagnosis. I know of many other women who have beaten the odds, some were diagnosed with Stage 1V disease, just like me.

I do believe you must fight with every fibre of your being, which can be accomplished in many ways e.g. eat a cancer preventative diet, walk every day, eat plenty of Omega 3 foods and try to eat organic foods. Avoid negative people and don't heed those nasty statistics.

Before you go to bed at night think of something to look forward to for the next day and try to find joy in the world around you. Read uplifting books, one of my favourites is "Love, Medicine and Miracles" by Dr Bernie Seigel. A nurse, who was chatting with me after I'd been given my diagnosis, told me how inspired she was after reading that book and after seeing Bernie Seigel in person as he talked in a very compelling way about certain cancer patients being "exceptional patients". She said, "I think you are one of those people".

When my son visited me at lunch time, I asked if he'd pick the book up for me. He gave and handed it to me that very evening. I started reading it and couldn't put it down. His words made me to believe that I could beat this disease, and that was the start of my journey.

I'm sorry this is so long, but I think you are feeling as I did when I was diagnosed all those years ago, helpless and hopeless. I had something wrong that couldn't be fixed and that was hard for me to accept as one of my favourite sayings was, "There is always a way".

When I read that book I suddenly felt hopeful and that was the first step to believing I could beat this disease.

Daughter1, If I've given you at least a tiny beam of hope for you to hang on to, I'll be happy.

Take care ...

Sandy.

in reply to SandyL

Sandy you are a beacon of hope. I was diagnosed with stage iv in February and when I get my dark & fearful moments, I think of you & your story. Thank you so much for sharing it with us.

Monique x

kim63 profile image
kim63 in reply to SandyL

You inspired me!! I'm looking for that book now.!!

Hi Daugher 1

When I was first diagnosed with what was described as "at least stage 3C" ovarian cancer, I looked at the statistics for survival and thought the best I could hope for was maybe another year. My consultant told me not to pay too much attention to statistics. He gave me hope and that was the most important thing. (I was also told that another hospital consultant's wife was diagnosed with cancer 30 years ago and is still here, hale and hearty.)

It is still early days for me, compared with other ladies here, fourteen months since diagnosis, eight months since finishing treatment and being confirmed in remission. Reading about other people's experiences here has been heartening. I now know that if the cancer returns there is still reason to hope for a second remission.

All good wishes to you.

Mine was borderline OC, but the surgeon told my husband I might get 5 to 10 years before a recurrence, it's nearly 10 years now. I love the positive comments on this thread and hope they will be giving you more hope.

Love Wendy xx

Mine was borderline OC, but the surgeon told my husband I might get 5 to 10 years before a recurrence, it's nearly 10 years now. I love the positive comments on this thread and hope they will be giving you more hope.

Love Wendy xx

Hi daghter!

My gynae told me at the ustart that only a minority of those diagnosed with this condition at my stage survive beyond 5 years! But that is only a statistic and one has no way of knowing where on the survival curve an indiividual is! I taught stats to A level geography students once and so I am aware that they cannot predict outcomes for individuals only probabiities! I decided I was going to be in the minority but live as if in the majority and I stopped reading about statistics on the web. I am determined to live as long and as fully as I can! I am aware that future treatment will be palliative only and so I will weigh up the benefits against the side effects very carefully and decide on what ourse to follow so that my quality of life is the best it can be.

We each have our own way of coping but, on this site I have met so many people who have got beyond 5 years and that hasgiven me hope and determination. I was diagnosed 3 years ago!

I wish you good luck with facing and defeating your demon!

Love Margaret!

Ps! I forgot to mention living healthily! But others have mentioned that!

M xxx

thank you so much for all your feedback, it is so great to hear some positive stories, thank you xx

Thank you for posting this thread. I was diagnosed with stage 3 OC in July and I'm currently in chemotherapy. My oncologist told me NOT to read any of those statistics. In my case all visible evidence of disease was removed in surgery. My oncologist calls my chemo a "mop up job" and that we are aiming for cure!

Hello,

I know exactly what you mean, it is upsetting. Im having panic attacks more and more and scared how long i have to live :( Trying to be very positive for my son,family and everybody else but its hard....i wishing you all the best x

this one is for Erixka,

I was daignosed with 2 c - grade 3 tumour + a second primary cancer in the uterus was developing ( this one was a seperate cancer unrelated to the OV). Although my cancer had started to break through and part of my bowel was removed (and opendix, + omentrum which is usually the case). it was still diagnosed as a stage 2c but I think it was borderline a 3.

I had 6 months of double chemo in which I was also told it was a mop up and my oncologist has also told me we are aiming for CURE.

Each time I have mentioned a reocurrance she just keeps saying "IF" it comes back.

This hasto be a positive thing for us, they won`t fill our hopes up if they don`t believe it.

I am coming up to 2 years since my diagnosis and still keeping everything crossed.

Zuzana, we all have days when we fell just like you do - I always find when my next oncology appointment is coming up, I think whay too much about the cancer returning.

We can do our own head in asking ourselves questions.

Its alll very well keeping busy and Happy, these are two very important self help things we can do for ourselves BUT it won`t stop us thinking when our bedtime light goes out. This is the time when I think too much.

I know this is normal - none of us would be human if we didn`t do this, we also need to be real about our situation.

The facts are whatever our statistics or however we tune our mind in - we never escape the reality of what we have all been through.

Cancer is a traumatic experience, it takes a long while to get over that alone - even if we can be cured.

A very dear friend of mine died suddenly from a mager heart attack a week ago, he was 46 years old. He would have been dead before he hit the ground. A huge shock for all concerned but my point is, we all will die one day, there is no escaping that fact. Just because we are fighting the cancer and its demons, doesn`t mean that we will pass away before those who appear to be healthy with life and soul of life itself. I have lost three close friends at this age suddenly with no warning. I think I`d sooner be prepared given a choice.

The thing is these friends never spent their last days worrying about death - so really we mustn`t either. Why waste these special years to worry about the if`s, buts or maybe`s when they may not happen for many years to come. We can easily waste the good healthy remission phase by worry and that is so not healthy. I have to tell myself there is little point in getting better if we can`t make the most of remission.

Remeber WE have been given a second chance in many ways, my friends Lyndsey, Beverley and Andy never had our chance.

I hope this helps, sorry for the long post, but those who know me now, will know they may not hear from me in a while and then its verbal diahorrea, LOL!!!

Love to you all with Gods Blessings

Tina xxxxxx

zuzana profile image
zuzana in reply to TinaWright

Thank you Tina for your post...i need time to time post like yours,gave me again energy to fight. i feel very good for while now,back at work as part time,back at gym,swimming,travelling and living life as normal. I have CT scan in 2 weeks time and starting second cycle of chemo after christmas, so very emotional at the moment.

Thank you, u have opened my eyes again to stop panic and enjoy life... XXX

Erixka profile image
Erixka in reply to TinaWright

Thank you Tina!

Your story is so empowering and encouraging! I hope you continue to be healthy and inspiring with your iner strength!

Xoxo,

Erika

Thankyou Daughter 1 for starting this. When I signed off from chemo my onc. said "We expect it to come back" and then added "maybe six months" The news hit me like a bullet and for the next couple of months I was disabled by anxiety. I had hoped for a cure. Now it is nearly a year on. I am well, every day is a bonus, my friends and family have grown closer. I am a painter and am exhibiting for the first time in the US. My work is more experimental. I still touch wood when I say I'm well but in my heart I am on the road to a cure and the future stretches out.

During the anxiety I invented Operation Bootstrap. This consisted of finding a task every day that I thought was beyond my capacity. It must be doable and it must be done. At first it was little more than putting some flowers on the table or changing my sheets. And so little by little I climbed back up the ladder.

Of course life is not perfect. I'm old, deaf as a post and I've got arthritis.

I am also glad to read other peoples good luck stories so thankyou for those.

Liz

Hiya, I dont post often, but read this site everyday. I was diagnosed borderline oc in 1993 aged 25. Two major ops and chemo followed. Finally got into remission in January 1995. 17 years later....... still fine. I have an annual CA125 blood test and know that I can get referred stright back to onc if I feel something is amiss. I believe I am a stronger, more positive person because of what has happened to me. It is best not to read the statistics, fight your own fight and accept help when you need it. Sally x

Erixka profile image
Erixka in reply to sallyg

What a wonderful and encouraging story Sally! Thank you for sharing and giving me hope.

Xoxo,

Erika

LouiseOvacome profile image
LouiseOvacomeMy Ovacome Team

Hi there,

Some brilliant comments,and philosophies. Ovacome are very aware that this is an issue, so please do feel safe on the Ovacome site. If there are any scary facts or statistics we will warn readers first.

I am happy that we manage information in this way but do recall several years ago one lady calling me an information Nazi! Its a difficult balancing act, and we would always rather err on the side of caution, but if we ever did get it wrong, I hope people will tell us so we can reconsider.

Good luck moving forward and remember if you ever want to know something but don't want to use Dr Google, you can always call the nurses on the helpline. 0207 299 6650.

L x

Hi Daughter one

35 years ago when I was 26 I thought my life was coming to an end. I was diagnosed with ovarian cancer. In those days the diagnosis was less technical. Was just told I had it and if I didn't have radical radiotherapy after my op I would be dead in 5 years. 2 years married and my life and hopes and dreams shattered. I did all the stuff and suffered, I didn't die but I did suffer and long for children and to be able to put my shattered life and relationship back together, I now have 2 girls, 26 and 23, and one gdaughter. I had breast cancer and chemo 10 years ago and life has not been easy, a long hard learning curve. I wouldn't change a jot of it.

I know other people have different ends to the story I was so lucky, I wish you luck and send you love, maggiexx

Hi

One of the things I always try to remember is that when you see the statistics you never see when they were done. New treatments are coming along all the time, so many of them are out of date. When I was first diagnosed, my surgeon told me that if I had been there two years earlier, they would have given me a somewhat lower survival rate, than then.

The other thing that statistics don't take into account is age, lifestyle etc so the statistics include people may have died from natural causes, not the oc, you really can't tell!

On a really encouraging note, I met someone in the summer who has been 24 years in remission (oc), an ex neighbour has also gone 24 years(breast), and an old friend of the family went over 30 years from being given 6 months(cervical), and that was over 20 years ago. So there are plenty of people beating the statistics!

I was diagnosed 3c in 1999, when I was 29 years old, so I am coming up to 13 years and still fighting.

Like Sandy, statistically I has a 5% chance of living beyond 5 years, however as one individual all this boiled down to was a YES/NO option. It would either come back or it wouldn't, neither option was more likely for me personally.

I did have two long remissions of almost 5 years each, however, since the 3rd recurrence, I have been having an awful time coming to terms with being 'incurable'. My 3rd line chemo stablised the disease but did not shrink it and was told the cancer would start to grow again in about a year or so. I took this prognosis much more seriously than the initial statistics and I am sorry to say, I wasted many months being miserable and scared and depressed.

However, even that prognosis was wrong as that the cancer only grew slowly and 3 years later on, I am still living a totally normal life. I go to work every day, I go to Zumba, I go on 10 mile walks, run a home, am taking my professional accountancy exams etc, etc.

And thanks to the lovely ladies on here I am feeling more positive about my future. I was given the advice to break down time into smaller chunks and see what you can achieve. So, I know that one day I will need treatment again but I'll cross that bridge when I come to it and in the meantime I concentrate on achieving my goals.

So my story isn't exactly 100% good news as I am not cured, but it is also not 100% failure as I did kick the 5 year survival statistic right in the butt.... and some!!!

Take care Vx

in reply to VickyEm

Vicky

Thanks for sharing your story - another inspiring one!

Monique x

There are a lot of inspirational and positive stories here, so chin up girls, we can kick its arse, it doesn`t have to be a death sentence.

Statistics are usually about 5 years behind anyway.

Life is one big lotto - sometimes its just best not to know - love you girls xxxxx

I like the challenges you ladies give yourself there are some great self help techniques on here and some wonderful comments.

Well, I dun know about you girls, but I do know this old bird is feeling better - keep posting xxxx

thank you so much for all your stories and feedback, it is so brilliant to hear that statistics shouldnt be used to define the future and especially to be reminded that treatments are constantly changing. thank you everyone x

Thank good ness for this site!! these stories have really helped me today.

I was told yesterday that 2 years for me was the prognosis. Sod that!!!!

Donna

I've only just read this blog. What wonderful uplifting stories. They should be bottled and handed out to anyone newly diagnosed.

I agree with Donna - Sod the official prognosis!!!!

xxx Annie

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