Im afraid to die

Hello all of you ,I,m new here and trying to get support from women who are in the same situation like me.

To start, I'm 51 years old woman. Im diagnosed with OC in september, stage 3,low grade.

, I was in surgery on 2011, cause I have ovarian tumor ( cancer ) but they didn't look anywhere else because they didn't believe I have nothing else.

The "funniest" part of this is, I have now anything on my ovarian tumor ,only in abdomen and peritoneum. Is its possible that the tumor of 2011 had left with couple of cells ,but they havent grow much,only little bit, pathologist found few cells. Can low grade oc be THIS slow, does that mean my prognosis is good too? My doctors say yes, but I have read stage 3 survival rates , 45% in 5 year.

Im so afraid that I have a few years left.

Thanks all xx

34 Replies

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  • Hi

    First of all I want to send you a big hug. I know exactly how you are feeling at this moment in time. First piece of advice is stay away from google and statistics, they are just that statistics and cannot tell you what will happen to you. I was diagnosed in 2007 stage 3 OC. Currently NED despite 2 recurrences and currently working full time. I've had remissions of just under 4.5 years, 18 months and currently 3 years 2 months and counting. Listen to what your Dr is telling you, be guided by him (or her lol). Are you going to be having chemo, if so you will probably have further questions which I am sure someone on this site will be able to answer. Stay positive. Take Care Kathy xx

  • Thanks K Xx !

    Yes, I'm going to have chemo , 6 rounds.

    Im so happy that you are good now ! Take care xx

  • Hopefully the chemo will do 'the trick' and you will be looking forward to many more years :). If you need any advice or just a virtual hug we're here for you . Stay strong. Kathy xx

  • I agree with Kathy, listen to your doctors they know best. Try to focus on being positive, I know it's hard at times but there are lots of people that get through this and my thought are I'll be one on them.

    By the way I was diognosed with stage 4 OC in March this year. Had hysterectomy in July finished chemo 5 weeks ago with NED.

    Wishing you well xx

  • Yes, I have to be more positive. Thank you :)

    Happy for you, that's fantastic !

  • I do love statistics but I also like to follow my body for me, with ovarian cancer no two cell identities are the same. You say you were diagnosed in 2011, which is 5 years so you have beaten the stats already. All research has to have parameters for study it doesn't mean it's a cut off point for the other 55%.

    Live each day as it comes and try not to worry, nobody knows what tomorrow will bring, OC or otherwise

    LA

  • Hey, that was so sweet.

    Wishing all good to you !

    Xx

  • Bless your heart ... Big hugs ... Think we all have moments like this ... No one really knows how long we have and the shock of OC does knock you in your knees to your lowest ebb when you read statistics .... For me I'm not a statistic I'm a person a 52 year old women who is not ready to give up yet... I'm scared I'm poorly but I'm still me ... I have no hair eyebrows or eyelashes but I'm fighting to keep the cancer at bay I'm giving myself the best chance I have by putting my trust in th experts having chemo increased my chance of survival not by much according to statistics but in my heart and head it gave me reassurance I was doing everything I could to win the fight!!! It's not easy road the side affects can be horrible but the future that it is giving me is life with my loved ones ... My sons wedding was an amazing day and now looking forward to my third grandchild ... The fight all be it hard is worth it and the amazing ladies on here fight we us. Think the biggest thing is we are not alone in our darkest times there is light here ....all the best for your treatment

  • Thanks so so so much. So sweet answer !

    I'm not ready giving up and I don't .

    I hope everything good or you!

    Xx D

  • Hi there and welcome to the site. Now one bit of advice stay away from Dr Google as he is like Manuel from Faulty Towers, he knows nothing!!!! The stats are way out of date, You are about to start chemo and hopefully that will mop up any thing left and give you a remission for a long time. Its okay to be worried, its normal and part of the course but also try and find a Cancer support group near you, it will help enormously at least that is my story, I wish you well with your treatment and if you need any hints of coping with side effects etc please come on and there are some fab people on here always ready to help you, If you are in the UK, Ovacome also have a helplline to ring. So dont be afraid of asking your CNS questions and for extra meds if anti nausea given isnt working, they have more on the drawing board. I wish you well in your treatment and let us know how you are doing, best wishes

  • Thanks ! Good to know of that helpline. This makes me happy.

    Xx D

  • I love how you refer to the internet searches as "Dr. Google.". You're right, he's scary and not usually right about things.

  • Stats are already old and out of date and looking at the stats you quote (from where.. Which year? which studies ? Etc etc) that figure shows that 55% LIVE LONGER THAN THAT. - YIPEE. So why do we always look at the worst figure ?!! Because we are human I suppose.

    WE should concentrate on being as healthy as we can and as positive as we can, not easy all the time I know. None of us know how long we have left, since my diagnosis I'm more frightened of my hubby having an accident than I am of my mortality!!! I try to let my stress pass me by and live for today .

    I hope you feel more settled now and send you lots of gentle virtual hugs

    Take care

    Clare xx

  • Hey C !

    Thanks, that is so positive.

    By the way, my daughter follow you on instagram, she tells me all the time how positive you are and how every woman with oc should be like you. I think that is sooo positive, you inspire people who don't even have OC. I remember your face , because my daughter have show some your pictures :)

    But thanks that, means a lot for me !

    Xx D

  • Thanks for replying. Before my cancer diagnosis I didn't use Instagram but I've connected with some fab people through sharing my journey. This is such a great site as we will always find someone who cares here xxx

    Have a flower 🌷🌹🌼🌸💐 from me for making me smile too xxx

  • Hello lovely lady,

    A big hug to you. Statistics are rubbish they're based on people looking at records and putting them all in the same boat! You are an individual and every lady who is on this site going through cancer is an inspiration to those of us who are on here for other people. My suggestion to you is make the most of what time you have, when you're low come on here someone is always around to give you advice and just help you through what you may be feeling. If you want to chat just for a friend this is for any lady please private message me I will always answer xxx

  • Thank you ! Xx

  • Ah that is a lovely response, thank you, we all need a friend now and again

  • Yes , that was, so heartwarming <3

  • Dear Daniella

    So sorry to hear of the problems. Perhaps I can relate what happened to me which might be of some help . At 55 I was quite poorly and they discovered a stage 3 tumour in my stomach. After investigative surgery I was given a short time to live. I returned home related all to wife and family and started getting my affairs in order. I reasoned that I had got to 55 so that wasn't a statistical disaster and as I am a Christian my faith and prayer held me in good stead as I prepared for whatever cane next .

    I had my stomach removed and here I am over 5 years on with a clean bill of health and fully fit. Not having a stomach means I have lost 3 stone but I was overweight so that has its benefits !

    Keep fighting , hoping and praying

    Best wishes

    Brian

  • Hey!

    Thanks B. Happy to hear that ! Like really, so inspiring.

    Hope for you all the best.

    Xx

  • Hi Daniella,

    I am low grade like you stage 3, I am 2.1/2 hrs on from surgery - no chemo - have been on Letrozole for 12 months as my cells are strongly oestrogen positive. Letrozole is a hormone inhibitor. It has kept me stable. I was 65 years old at diagnosis. Yes, low grade is slow growing. And yes, please don Best't google too much and ignore statistics. Best wishes to you.

    Gwen

  • Wow! Can I ask what stage 3a /b/c ? My cells are too estrogen positive. I start some hormone pills but don't know what .

    Wishing all good to you !

  • Hi again Daniella,

    Wow that's the quickest reply I've had. I am 3b. What about you? There are several hormone inhibitors. Dr. Gershenson of MD Anderson Hospital in America is the expert on Low Grade. His research has shown that hormone inhibitors are really good for low grade.

    Again best wishes.

    Gwen

  • Thanks for reply! I have 3a , almost same . Thanks for information, good to know . :)

    Xx D

  • Hi

    I'm low grade 3b. I was told my cells were not hormone dependent so I guess that rules out the hormone treatments.

    I had surgery 2 years ago and was given 2 years to live. Mine is classed as untreatable because there's something about it that makes it very rare and so all the available treatments are not considered to be suitable for it.

    But I was told that the 'low grade' aspect of it means it is 'sluggish'. Although I had debulking surgery, they couldn't get all of the tumours. So we knew post surgery that I still have OC tumours in my abdomen. But I was also told that there could be vey small bits of tumour that couldn't be seen at the time of my surgery, which could eventually grow. These were the unknown bit and are the bit that usually chemotherapy would help to deal with. As you are having chemotherapy I'd like to think that will help you.

    Reading your story I think you've answered your own question of 'can low grade be this slow?'. Well, five years sounds like a slow growth. So yes! And, for me, it's good to hear that it can be that slow given my original prognosis of 2 years.

    Good luck with the chemo

    X

  • Ha, that's funny, I don't even noticed that I answered my own question :D

    But I like your story. So you don't even have option to have chemo or?

    But I wish so so good luck for you, I think you have many years left.

    Xx D

  • That's what I was told post surgery nearly two years ago. I haven't been for an appointment for a year so I've decided I'll keep the next appointment and go in just to see if anything has changed in the treatment options available. I've just been browsing the clinical trials that are going on and there do seem to be a few. Not sure how many of them would be deemed to be relevant to me though.

  • Thanks for reply , hope everythig going well ❤

  • Sorry to hear that. In was diagnosed in 2010. I'm not afraid of dying but I desperately don't want to leave all the people I love and worry about how they'll be without me. It sounds as though you don't need to worry about that just yet though. Good luck with the treatment.

  • Hey! Good to hear that you are here after 6 years and many to come. Can I ask what stage exactly ?

    Wishing good luck for you !

    Xx D

  • I was diagnosed stage 3/4 high grade on December 2010. I'm on my 4th lot of chemo but had some good times between and hopefully again when this one's ended.

  • Thanks , good to know :)

    I have a feeling that you have nice long life to come!

  • Although I feel like stats are important since i believe it is an estimation, who knows which side of the coin you will fall on. Stats can't say if you will be on the survival side or the other side. My mom has metastatic endometrial. According to doctors no cure just extensions of life and comfort. According to stats somewhere around 15% but that 15% were women in good health prior to the cancer. My mother is not in good health and have not been for many years. She is what they consider morbidly obese. She is not physically active. As a matter of fact we tease and say she doesn't move unless she must move. Her prognosis was not very good. She is now months away from being in the 17% that survives beyond the 5year period. She is holding up well. She is the least favorable candidate to be in that 17% but she is now a front winner. Cheers.

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