Hi I was diagnosed with ovarian cancer in July. I had a mass removed in September, and had my first meeting with my oncologist in October.
He gave me the devastating news that my cancer is treatable but not curable. To say it came like a sledgehammer to the back of both my husband and my necks is an understatement.
We had thought it would be a course of chemotherapy then get on with our lives.
I had my second chemotherapy of 6 last Monday. I must admit it wasn’t as bad as I’d expected. Though I don’t know what I’d expected really.
I have a wonderful husband daughter, 2 beautiful grandchildren, and a very big support network of family and friends who I am so lucky to have. Though at times I feel so alone, as I don’t know anyone else that has incurable ovarian cancer that I can talk to.
I hope there is someone out there to talk to.
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Manyin52
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Hello, so sorry you have joined our club and believe me your not on your own now you have joined this sight.
I know how you feel as I was diognosed in March 2016 with stage 4 ovarian cancer.
I finished my last chemo in September 2016 and I’m just getting on with my life and enjoying every minuet. I know it’s a cancer that can come back to 95% of us at stage 4. But I’m very positive and hope in in the 5% that don’t get it back. I’m sure lots of ladies on here will reply to you post. Keep positive love xx
Thank you so much for your reply annr5h x I only came across this website from looking at an article in a magazine my sister bought me today x how lucky was that x I couldn’t wait to post on here x
Just to be able to talk and hopefully help others in the same situation (once I learn more about this rotten disease) will be a big step forward for me x
I’m usually a cheerful person ready to make people laugh but it seems empty laughter at the moment x
I know but you’ll get your sence of humour back, just don’t let this disease get the better of you. You sound like me I love to make people laught too. Take care and remember your not on your own. Love Ann x
Hi you have come to a wonderful forum here the ladies are very helpful .it's good to have agood circle of friends and family around you for surport,but theycan't all ways know what to say when you ask question.ladie on here wìll try.take care.shortie38
Hi Shortie love your name thought I was the only one called that x all my family apart from my 7 yr old granddaughter are taller than me and they take great pleasure in a calling me shortie x
Remember that diabetes is also treatable but not curable. Likewise high blood pressure and arthritis are treatable but not curable.
A lot of us have long periods without treatment, some of shorter periods, and then go back onto treatment again.
I'm guessing you're having carbo / taxol. The side effects may get a little worse as time goes on but I don't think anyone gets all the side effects listed.
Most of us on this site will have had that particular combination, and have a wealth of knowledge how to deal with any minor side effects that may start to bother you.
Welcome to the family we’re a very friendly bunch here and very happy to answer any questions you may have based on our own experiences either going through cancer or supporting someone with cancer the ovacome team will always be around to guide you too. You’re very lucky to have a huge support network as that is key to recovery most ladies on here are treatable and not cureable my special person was diagnosed stage 3c nearly 3 years ago and at that time was told to celebrate her birthday early she’s reoccurred twice since initial diagnosis (recently finished 3rd line treatment) but is still here and doing well. Don’t make any appointments with Dr Google he’s way out of date and is only useful to find us here 😉. You have had a huge shock so it all takes time to get through these things always ask questions if you’re not sure about anything and if you’re not happy with your Onc speak to your CNS (Cancer Nurse Specialist) it sounds so far like your team are on the ball which is always a good thing. Keep us updated and good luck with your teal journey xxx
Hi I have been told 2-3 years cannot be cured!! Came as a shock to say the least. That was about 6 months ago so I suppose it is now 1.5 -2.5 years. I would love to talk to someone in the same situation. I see people say if you want to pm me which I assume means private message then please do.
Hi Marion & Anthea. Just to say that my OC is stage 3C. I've been told it's treatable but not curable. I've been told it's terminal. I was told I had around 2 years before the next return. I am just coming up to 6 years since diagnosis. I've had a recurrence in that time but I'm fit & well. I get on with life. I'm on a trial drug & I never forget I have OC and I'm closely monitored with regular appointments at the hospital but if you saw me in the street, you'd never know I have this cancer. You learn to live with it & get over it & get on with it. Best wishes. Pauline.
Hi, You have found a site with very helpful ladies for advice and encouragement when ever you need us. When I was diagnosed my family were told I would not see the year out, it's not always been easy I'm on my 5th line of treatment, 3 years on I'm still here at the moment doing fine.
In the the years I've been on this site I have corresponded with some amazing strong ladies and this has help me a lot at times.
Now you have found us keep in touch take care Lorraine xx
I believe that is the standard chat that we all get at diagnosis, as this disease has a habit of recurrence no matter what stage it is discovered, and it depends what age we are , what health we have, what stage at diagnosis, what type of ovarian cancer we have, and how positive we can be, and what we do about it after! Just remember you are an individual and not a statistic. You can improve your odds and quality of life by eating well, exercising, even if it’s just short walks, and joining your local cancer support group. Friends and relatives are great but it’s so good to talk to others that have faced similar fears and have learned coping mechanisms. Embrace the changes, go with the flow, rest when you need it, cry when you need to, but find the things that make you joyous and do them every day and before you know it you will be through treatment and will have coped.!
When treatment is over it’s often the hardest time, you feel alone so please make contact with cancer support before then, as they really help.
I was stage2a epethialial, at diagnosed Jan 2015, had the standard treatment, and apart from dealing with ongoing side effects of tingling and numbness in hands and feet am Ned at the moment. I walk most days as this helps and am doing well. I wish you all the best with your journey, but know that incurable but treatable applied to almost all of us at the beginning, it’s a shock to hear, but life can go on 😀
Hi there...sorry you find yourself in this situation. I can completely relate to how you feel, I completely assumed that when the surgeon said he's removed all my cancer that I would be fine and the chemo was just to make sure the odd cells that might not be visible were zapped! It was a terrible shock to be told I was incurable at the age of 43 with 2 children. I am so pleased you have a good support network around you as that will definitely be a great help to you. This site is great too for advice and support off people that understand what it's like to live with Oc as well as many positive stories to give us all hope. Good luck with the rest of your chemo. Best wishes, Jo xx
Hello, i’m so sorry you find yourself here but you will find support and solace on this site. I well remember the horrendous shock of finding out my diagnosis and although initially given a 25% chance of cure it recurred and was from then on incurable 9 months after treatment. That was over 2 years ago. Not going to lie, it’s not easy and you will need all that support from family and friends and support groups, counselling can also be helpful to help you come to terms with this huge change in your life. There will be downs but also many ups and the good times are that much more precious. I wish you well with the rest of chemo and hope for a long remission for you. I hope the laughter will come back into your life. Hugs,
I made my mind up to not ask the ‘how long have I got’ question and have refused to look at statistics (although it’s difficult to avoid the fact that a Cancer diagnosis is not the best news). None of us are statistics and no doctor can tell us with any certainty when our time is up. I did research how the statistics are compiled, and the article I read said that even if a cancer patient has a fatal accident, that will be included in the statistic.
It was either Mark Twain or Benjamin Disraeli who said "There are three kinds of lies: lies, damned lies, and statistics.”
As the others have said, it’s not easy and the language the professionals use can be scary, but they are there to support you too. You have to get used to a new normal, but there is a life after diagnosis.
Hope all goes well and that you continue to read and post in this forum when you need support and when you feel you can give it too.
Hi I think you will find a lot of ladies here who know EXACTLY how you are feeling. Take heart that it is treatable, in fact I have just had my 10 year 'anniversary' from diagnosis, currently working full time and in remission (despite two recurrences). Best advice I can give is not to google, you will just find a lot of out of date statistics and you are not a statistic , you are you. Take your good days (of which there will be plenty I am sure) and enjoy life, enjoy your family, try and forget all the c**p this disease throws at you. Life is here and now, no point in worrying about tomorrow, worrying only spoils today end of sermon lol . I hope your chemo goes ok. Big hug xx Kathy xx p.s. do you know what stage you are?
Hi Kathy Thank you for your reply x I am stage 4. Chemo isn’t as bad as I thought it would be, leg pains for 2-4 days then I am pain free, if a bit tired most of the time x
CONGRATULATIONS on your 10 year anniversary may you have many more xx
We were all new on here once and I know everyone who posts feels a strong connection to the others who DO know how you feel. The shock of diagnosis and what the docs tell you is devastating but then you read stories, comments and then you can hear some news that makes you soar. (Kahy (Kat-mal) and others makes me soar. 10 years and doing well!) If you don't know, you will read and hear "NED" alot and although we all wish he was our steady, it means "No Evidence Of Disease" and people get reports or their oncs say "NED" and we all rejoice. This can happen after treatment, all during remission or CURE and NED is a very nice thing to have! I was dx Stage IV and it seemed grim at the time (it was "everywhere") and at the end of treatment (with surgery in the middle) I was NED. Never thought I could achieve remission. Good luck on your journey and please keep us posted with your physical (and mental) ups and downs should you have them. I love these ladies--not only for the support only they can give, but with information and experiences that equip me to better understand and to speak with more knowledge to my oncology team. Appreciating life more than I did before is another benefit--nothing taken for granted anymore. oxox
Hi thanks for you reply x this site is an inspiration to me. In the few days I’ve been here I already feel a part of the family. I am so pleased you are NED and hope you continue to stay that way.
Welcome to the group. I remember well the shock and numbness of the initial diagnosis and my GP saying it can be suppressed but not cured. However new treatments are coming on all the time. This is a wonderful group and you are definately not alone.
Hi I was diagnosed January 2013 stage 3c and the sledgehammer was a pretty accurate description. When you know absolutely nothing about this disease and then learn you have it is extremely dibilitating but I am here to say that as you venture through this you will become more educated and that is powerful. I am on my fourth chemo treatment for recurrance and this January I will hit the 5 year mark but I have no intentions of being a statistic. After my initial surgery and chemo i was 2 1/2 years in remission! What I find comforting is that I have a very supportive husband and group of friends including the ones on this sight. These ladies are a wealth of information! Overtime I have learned not to live by the CA125 number, it is a marker for the gyn/onc but not me. Your brain is a powerful muscle so use it to keep you positive. The biggest thing I can say is you know your body the best, pay attention to it, feed it, love it, take care of yourself and learn what works best for you. This is a disease that can be lived with. It's not easy but it is doable so keep living, laughing and loving! Best wishes and prayers for you and your family.
Hi, your words are such an inspiration to me x at the minute the CA125 is a number that is always at the back of my mind. I don’t know what it was at the first blood test and said to my friend today that I did want to find out what it was . I have now decided that it’s not going to be the guide to my life so I will not go looking for the numbers x
Hi Manyin,sorry to hear your news.I was diagnosed in Sept 2014,advanced stage 4,incurable and inoperable.Devastating news but,I'm still here and having a quality of life.Your Onc was right,it is treatable and manageable,I had 6 chemo,10 Avastin,6 more chemo and on Olaparib since Jan 2015.
I'm not saying it's an easy journey but it's a manageable journey and it's made all the easier with having a supportive group around you.Alliw yourself time to understand the diagnosis also it's very important that you find things to do that relax you .I find watching comedies on TV is a brilliant form of therapy.xx
Hi Annie stories like yours give me so much hope. I am to have 6 sessions of chemo and Avastin which I’m told I will continue when the chemo has finished.
This is my opinion. I was given no hope, no cure, one year. It's been three years and I'm doing well. I hate that they give us gloom and doom prognosis. Yes, there is not cure today but who knows what tomorrow will bring. I prefer to think things will progress and I have faith that whatever happens, I'm going to get as much pleasure out each day that I can. My best friend has no cancer was doing fine and had a heart attack last week. So who's to say how much time any of us have. I know women who have survived this disease, so who's to say we won't be one of them. Prayers for you.
Hello, glad you've joined our group. I am three years on from diagnosis and have had set backs. I'm still doing O.K. and generally happy. This site has been a lifeline for me as there is much information from all the ladies who are in the same boat. I make notes and always have a lot to say to oncologist at every visit. Surprisingly we have have a lot of laughs here as well.
Hi K thanks for your reply to my post x it is of heartwarming to see how many people are living longer lives x
Love Marion
Hello and welcome to this forum. As the previous replies have said, this is great place to share and to get advice and support.
It's so understandable to us how you feel, but I was planning my funeral in 2015 after being told by the surgeon " you do realise that you're not cured" and I'm still here 2.5 years later!
You will find that these posters are a godsend! New myself here, I may be off, but if you share your stage, it might help those more experienced with this to help you.
Not curable is a relative term, I think. As another posted a little differently, by the time we have done a few courses of chemo over the years, someone may have discovered a cure! Then we will be posting as cured and former cancer patients!
Hi Judy and thank you for your reply. I am at stage 4.
Just coming on here today and reading replies to my post has helped no end. It is sad to know there are so many of us out there but also a big boost to read people’s stories of how they have taken control of their lives and not let the diagnosis get the upper hand xx
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end of sermon lol . I hope your chemo goes ok. Big hug xx Kathy xx p.s. do you know what stage you are?
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