5 Years since diagnosis with 3C high grade serous

5 Years since diagnosis with 3C high grade serous

I read with interest one other lady who recently celebrated her fifth year since diagnosis and no reoccurrence. It appears she was 2c but I wanted to give hope to many of us who have 3c and higher. My oncologist is very pleased that I have made 5 years as he had doubts I would even make three as my spread was very quick with reoccurrence after 9 months. I am still here I have minimal disease and have responded to all my chemos. I am about to start on a new drug trial and beyond that I hope to see out another Christmas. I met another lady at the clinic (newly diagnosed) the other day. I tried to give her hope that I had made 5 years and I could see her doing the same. I was wondering if trying to give each other support is helpful or not. Did I do the right thing by stopping to talk and telling her my story? Anyway I am going to celebrate my 5 years and beyond. Love to you all. Sharon

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  • Hi Sharon

    Wonderful news. I for one am very grateful to ladies like you-you give hope that we can lives with ov even if we are 3/4.

    Keep well and share you good news.

    Xx

  • Thanks so much. I am always concerned that I may be sticking my nose into other people’s business. It is gratifying to hear that I am giving some help. X

  • I wish I had met somebody like you when I was first diagnosed, I think that to be able to chat with other people who have been in the scary place you’re at is such an encouragement and can show that there is light at the end of the tunnel for many of us.

    Celebrate in style lovely, you’ve earned it, continue to keep well 🥂I raise a glass to you, cheers love ❤️Xx Jane

  • Thanks for that. I wanted to be encouraging and not dwell on the negative. I will see her again hopefully and feel more empowered to talk to her again.

  • Oh yes! Yes! Keep the good stories coming xx

  • I will keep writing if I feel I can help everyone here. Thanks Sharon

  • Good for you 🥂 love this sort of news.

    A lady I know with 3C has just had her five year all clear and discharged from clinic.

    Long may your good news continue

    LA xx

  • I hope you are feeling better. I will keep checking in here and watch your progress. Keep us informed. Thanks so much for your encouragement.

  • That’s great news, Sharon! I would love to have spoken to another lady with OC when I was first diagnosed. I still know very few in real life, although I’ve met a few of the lovely ladies on here 😊

    My story is similar to yours, in that I was stage 3, recurrence after 10months...I’m just finishing second line chemo this month and hoping for a bit more remission this time (fingers crossed Avastin works for me 🤞🤞). It’s almost 2 years since I was diagnosed, which is unbelievable given how poorly I was back in 2016.

    Vicki x

  • I am so glad for you. Fingers crossed for a long remission. Thanks.

  • Great and encouraging news!! It is unfortunate that most doctors predict a grim outlook when you are late stage as I am, whilst I know I will never have the all clear, I am hopeful that the bugger will be kept under control. So I was told five years at the most! Coming up to four now so remain hopeful, keep in posting good vibes , we all need them to show that there should be no generalisation in this disease and we are all individuals, and good news always makes us feel more positive and hopeful!!

    Much love to all Jackie O xx

  • Thanks. Your words are so encouraging. Love to you Sharon

  • Lovely to hear your news... I think the diagnosis and treatment can be so very isolating (it can take a while to find support and groups such as this) so reaching out to someone with the intent of giving hope is a lovely thing. Very best wishes, Sx

  • I agree finding support is really hard. There are so many breast cancer groups but not much for ovarian cancer. Thanks for your kind thoughts.

  • Good god yes you did the right thing. We need positive stories. I sat waiting for my op not knowing if it was cancer or not and had some woman in the bed opposite insist on telling me her story of being diagnosed following the same op and it being too late so she only had 9 months to live! My blood pressure was so high they nearly cancelled the op! If I'd spoken to you instead I'd have felt it wasn't necessarily the end!

    I've taken a positive from this post if yours so please don't hold back!

    Em

    X

  • If I can make one person feel good for spreading my story then all this horrible journey has been worth it. I must say some people are incredibly thoughtless. I can relate to someone insisting on telling their storiy . I had a tradesman in my house one day who had to tell me about his mother in law. He proceeded to regale me with her stomach cancer horror story and finished with the line “ the Cancer ate through her stomach and she died”. Gee thanks for that. I wished I had told him to shut up.

  • Hi Sharon, I certainly think you did the right thing . I'm here now in my 11th year despite a prognosis of a couple of years, two recurrences and currently on my third trial drug with NED. I sometimes hesitate to put down this information but I hope it helps someone realise that there is hope. In fact my mum was stage 3 and never had a recurrence. My dad (obvs not OC lol) had lung cancer, had an op no chemo and then had over 30 years before a recurrence! Go figure. xx Kathy xx Lovely pic btw!

  • I have always admired you and your story has given me hope all these last 5 years. Thanks for your kind thoughts.

  • Wow! That's really good to know. It's always always good to hear from someone who has made the five-year mark, especially someone who has recurred.

    Thanks for letting us know, it's really encouraging.

    You have a well-deserved celebration.

    🍾🎉🍾🎉🍷🍷

  • Thank you. Your thoughts are appreciated.

  • Yes Sharon . Great to hear and gives us hope . Am stage 4 just finished first line and year of Avastin and keeping everything crossed but it is great to hear stories from those who have had a recurrence and are beating the odds. I wish I had met someone when I was first diagnosed, took me a while to find this forum and it is such a scary lonely place despite having friends and family .

    Keep spreading the word . Have you thought about telling your story on the Ovarian Cancer Action site , will give hope to so many .

    My story link below ovarian.org.uk/news-and-blo...

    Love and best wishes Kim x💜

  • Thank you I will consider that . Thanks for your kind reply.

  • I am stage 3c. Diagnosed March 2013. Unfortunately recurred last year. Had surgery where one lesion was removed. Undergoing chemotherapy at the moment but ca125 levels are back within the normal range. I would have loved to speak to you five years ago as I was sure I would not be here at that stage for long.

  • You also have nearly made your 5 years. It seems medical help is slowly getting a bit better. Thanks

  • You absolutely did do the right thing. Congratulations on reaching 5 years. Hope you will get many more to come x

  • Thanks for that.

  • What a fantastic positive post and how great is that and long maybthevremission continue. I am so pleased for you and your LOVED ones . We need to hear these kind of stories it gives hope and isn,t that a powerul thing. I you don,t mind me asking what treatment have you had. Love Chris

  • I really credit my longer life to the first treatment. I had IP chemo and I believe it has increased my chance. I have had 2 operations initial debunking, a folllow up one to get a tumor. I had taxol then cisplatin first. After reoccurrence I had Caelyx. This chemo has really worked for me. I have had gemzar which didn’t work. Then I recently had Caelyx once again it has worked. I have had really good counseling and I think it has been a key factor in keeping me well. Hope that helps . Thanks. Sharon

  • I have read so much about IP chemo changing the odds, does anyone know why it’s not offered more in the uk?

  • Gee, I really wasn’t aware that is not as common in the uk as it is here in Australia. I know it is a challenge for any Cancer patient as it is quite confronting when you first start chemo. I believe it has been a reason my life has been extended.

  • I had IP at Hopkins where the treatment was first developed. Not everyone OC patient can get IP. Its my understanding that to be eligible for it, the cancer has to be contained in the abdomen. If the disease has spread to organs outside of the abdomen, then the more traditional treatments are used. Also, IP is done at cancer centers. The chances of surviving OC greatly increase if you are treated at a cancer center like Hopkins where they utilize the latest, treatments.

  • Hi, I was treated at the freeman, north east centre for cancer care which is a fantastic centre. IP was never discussed although I think I will ask why when I see my oncologist next. I often just wonder why it’s so hard to discover stuff at the time you most need it. You don’t know the right questions to ask until ages after they would make a difference the majority of the time. X

  • That is interesting to hear thanks .

  • Thank s for that information. It is interesting how different countries are treating this disease.

  • Congratulations on reaching 5 years. Such a positive and uplifting post.

    Wishing you many more years showing this beast who is boss. I hope you are going to celebrate this milestone. Xx

  • Thank you. I am trying to make this earth a better place. I want to spread positivity. Thanks for your kind thoughts.

  • If I take myself back to that diagnosis time, I'd have had welcomed your story then and I still do now! Thank you.

    I recurred within 3 months of finishing my treatment, it's very scary. So thank you and long may your treatment continue to work xxx

  • Thank you. It is a really scary time. X

  • Hi Sharon, Thanks for posting, it’s so encouraging to read of ladies who are doing well after recurrence. All the best for a long, healthy future xx

  • Thanks to you. It is a milestone. X

  • Hello,

    You have just made my day! Thank you.

    I’m in bed early after two days of work feeling shattered and a bit down following a few familiar tummy pains. I was diagnosed like you 3c in June 2015, no recurrence so far but an awful experience with adhesions in June 2016.

    I’ve been fine but quite suddenly feel a bit off and I’m worried. I am scared stiff of a recurrence, your message has just lifted a huge weight. Fabulous to hear!

    XxX

  • I hope you are feeling a bit better. You poor thing. It is a horrible scary time. Each time you feel ill you mind goes back and conjures up scenarios. Try to relax. If you need to vent on this site we are all here and are listening. X

  • I’m in the exact same boat OC3C. 14month remission. Last Ct nov 23rd NED and ca125 6.7 as of last Thursday. But I am having tummy issues cramping and I really worried

    Called Dr they don’t seem too concerned because of my ct scan an ca125 6.7.

    I hope there right. I am scheduled for A CT scan Feb31st. But that feels like a long way away. I get them every 3 months because I’m in a study. I’m so glad I found this sight as I have been feeling so alone all this time.

    I wouldn’t wish this on anyone but I’m just glad to connect as the anxiety and worry is such a hard thing to manage.

    Wishing you the best

  • I understand this anxiety so very well. I went to a counselor who has helped me through this. It really is a monkey on your back. Much love Sharon

  • Thank you for your reply !

  • Connecting on here is a real help, I try not to talk about it to friends. Let me know how you get on, i’m Going for a ca125 today which have been normal too so we will see. Take care. X

  • Yes sometimes people just don’t understand. I guess only your teal sisters know what you are going through. X

  • Dear Sharon, of course you did the right thing!! It gives hope when we are in a dark place and we all get them sometimes. I'm stage 4 so I love to read uplifting stories, it gladdens me. Good luck and many more years of good health, joanie,leeds

  • Thanks so much. X

  • This is great news and definitely important to share. It was posts like this that gave me hope when I was first diagnosed, not the oncologist.

  • Lovely to hear from you. Hope you are well. Thanks for your kind thoughts.

  • Absolutely fantastic, you did the right thing, how uplifting xx

  • Thanks so much. I glad everyone thinks I did the right thing. X

  • What a really positive happy post. You look amazing too. This has given me so much hope. I was diagnosed in September 2016 with 3 high grade serous and at the time I was told that I had 4 and a half months if I did nothing but years if I had chemo and surgery. The number of years was always vague. Seeing you at the 5 year stage is amazing. You did the right thing by talking to the other lady. I wish I had met you when I was first diagnosed. You are truly inspirational. Sending lots of love xxx

  • Thank you. You are an inspiration to me. I will wrap my arms around all the love and good wishes sent my way. It really is a difficult time when you are first diagnosed. I found talking with my counselor has always helped me when I have found myself down. This website has helped me throughout and also has given me a voice. I have listened and be inspired by other women on here. Thanks so much for your kind thoughts.

  • Thank you so much xxxx

  • All the best to you xx

  • Thanks so much. X

  • Thank you xxx

  • hi Sharon. love to read positive post keep spreading the news take care Lorraine xx

  • Thanks Lorraine. Let us know how your trial goes. Sharon

  • Thank you, it has given me hope as well. I'm only one year along the path... So far, so good. I think it's really important for us to reach out to our peers. My oncologist is doom and gloom but has no concept of what it's like being INSIDE the body he's talking about. Sharing our experiences and symptoms "lightens the load". I have lunch every month with a friend who's a breast cancer survivor and we both just "Get it" in a way that people who haven't been on the journey do not. In the same way that a dear neighbour of mine who went on his own cancer journey 30 years ago always drops by, usually magically when I'm at my lowest. :-)

  • Gee, it is nice to get your perspective. We are all so different but united by this terrible disease.

  • Hi Sharon brilliant news... absolutely brill that you shared it with us xx

  • Thanks so much. It is a great milestone. X

  • I think it gives hope,when your going through the worst time in your life,we need more positive talk instead of all the negatives xx

  • Yes it is so easy to slip into a negative frame of mind. I am always telling my husband to let me know when I venture into the dark side. As we jokingly refer to it. X

  • Hi Sharon .. you've just made my day. I have 3c diagnosed jan 2016 had weekly chemo for 7months big usual op and was given ned in aug . However at present suspect back again awaiting doc app next week to confirm.. im on trail icon88.thats not a negative because like most of us have recurrences however you have made me feel better as i can see a opportunity and hope for a few more years. Keep it up and thank you😁x

  • My pleasure. This is more than we bargained for. Yes it is a challenge but we can still retain ourselves and fight to be positive and give each other support. Lots of love. Sharon

  • That's brilliant news Sharon! I love hearing good news like this xx

  • Thanks so much. X

  • What a lovely photo and a lovely post Sharon. I think it is ALWAYS good to hear good news, particularly for those who are newly diagnosed.

    It took me over two years to find anyone else at my hospital with Ovarian Cancer but i did go to an open day in York (with a group of ladies from this forum) and met an lady in her late 70's/80's (??), who had been having treatment on and off for 10 years. That definitely gave me a backup plan for IF i recurred. :-). When I did recur 16 months after 1st line, although it was scary, that lady was my inspiration. I had another recurrence a year after finishing 2nd line and finished 3rd line in July 2016. I've been on Olaparib since then, with a recent clear scan, and i'm feeling great and have just passed the 5 year marker too!

    I'm also happy to say i'm flying out to visit my daughter in the Dolomites tomorrow, for two weeks of mountain therapy, with a little visit to Venice thrown in for good measure. :-)

    Lots of love

    Liz

  • Thank you so much. My understanding is that Olaparib is the drug I will be starting in the next two weeks. I am really interested to hear you are doing so well on it. We can both celebrate our 5 years together. X

  • Yay double 5 year celebration!! I really hope you do as well as I have on olaparib. Are you BRCA positive? My ca125 has been increasing slowly for the last 7 months but this is still the longest spell I've been off chemo, which is fab. I know I'm likely to be back on chemo soon but I have felt so well on olaparib and hopefully I have a few more months before something shows on a scan!! In the meantime I'm making the most of it. ☺. X

  • Hi again. No I am brac negative. I think that is why they are doing the trial. My oncologist believes that there is an genetic link because of the way I have responded to different chemos. I think because not all genes have identified that in the future my genetic gene will be identified. I hope I do as well as you. 😃

  • That's great. I know there are lots of women who are BRCA negative who could potentially respond well to the Parps (but access is limited to trials in the UK at the moment) so this trial will hopefullybe helping them as well as you. X

  • Great news to read! I’m aiming to get to at least 83.... why not huh?! z

  • Why stop at 83 . LOL. 😃👍

  • Oh Sharon, I, for one, loved to hear your news. I was diagnosed in October 2015, and have had one recurrence. Just finished my second line of chemo in November. Stories like yours give us hope. Keep smiling and stay in touch with us. Sue xxx

  • I intend to be here for as long as possible. Thank you so much. X

  • Sharon good on you and congratulations on your courage and kindness in sharing your story. My beautiful mum who I love dearly is stage 3c and is now 4 years and 5 different chemos down. It’s hard going for her but she is here and she has so much joy in her life. We are eternally grateful for having her and having her in good shape!

    Keep doing what you are doing. All of you ladies are a total inspiration and have helped me and my family learn and cope with what we need to face.

    Much love

    Emma

  • I am hoping that by putting myself out there that it does give some reassurance that this horrible disease can be fought. I really hope you mum is okay. Doing Chemo is really tough. Give your Mum an extra hug for me. Thanks for your kind thoughts. X

  • Hi Sharon, I'm so pleased for you. I constantly tell people that I'm approaching my five years with stage 3C. (I do get a bit fed up with the professionals telling me I'm so lucky as so many don't make it. I think it's supposed to make me feel good but it has the opposite effect.Perhaps I should tell them). Anyway, I am very lucky.

    It's good to hear there are others out there. I haven't even had a recurrence which makes me doubly lucky. Are you worried at all what will happen after the five years? I ask because I am. My consultant said they say good luck and goodbye. What if it comes back? I doubt I'd even know until it was too late.

    I'd like to hear your opinion.

    All the very best to you and here's to many more years of Christmas's to us all.

    Best wishes, Zena x

  • Congratulations on no reoccurrence. I guess you will feel a little left out once you finish your five years. It is a funny time when you finish a treatment and then you are on a watch and wait. You will be free of all this interference in your life and you can go and fly high again. I think if you are feeling anxious and that will be understandable go and speak to a counselor. I have had one the whole time and she has helped me through the anxiety . Also you are the one who knows your body the best. Be extra vigilant and trust your instincts. I am so glad for you. If you every need a someone to talk to PM me. Lots of love Sharon.

  • Thanks so much Sharon, will do. xxx

  • Hi Zena Is it possible to ask your GP for CA125 blood tests every 6months or so just to keep an eye on things.. I,m just coming up to 12 months and sweat on my 3monthly bloods. Well done you!!

  • Hi I am not sure if you are addressing this to me or not. I am sure if you ask for more regular bloods most GP’s would oblige. If you have a great GP he would do it without a worry. Good luck Sharon

  • Thanks, I have a thyroid check every year I'll ask if he'll add that one to it. I know a lot can happen in twelve months but even a yearly check would put my mind at rest.

    Best wishes to you and good luck for future good results. xx

  • Wonderful post and photo, hurrah! I hope you see more than one more Christmas. All love Nicola

  • Me too. Thanks for your kind thoughts. X

  • Yes it is so helpful to hear your story. It definitely gives hope to others. I was diagnosed 3 c in October and the medical team have avoided discussing prognosis. When I pursued this I was told I had a 50% chance of making it past 5 years. The most frightening thing about the diagnosis at this stage is the unknown and hearing from someone at the same stage who has made it to 5 years or beyond gives encouragement and hope. It would be great to have access to women diagnosed in the advanced stages of oc who have made it to 5 years and beyond for newly diagnosed patients to contact.

  • I agree. I was never told much. I was not given a lot of reassurance. Don’t get me wrong my oncologist is really wonderful but I guess they see so many people succumb to this disease. My oncologist is always so happy to see me now. It is like he is celebrating his accomplishments. It would be really helpful for other patients to talk to newly diagnosed so I guess this site sort of does that in a way. A word of warning. I met an incredible woman when I was first diagnosed and felt so much for her. She lived a good distance away from me but I wanted to catch up with her. Before I had the chance she passed away. I knew when I met her she wasn’t well but I was heartbroken when I heard the news. My point is sometimes knowing people who are fighting this disease can be confronting. Lots of love Sharon.

  • Having just been given the ‘all clear’ I pray for 5 yrs & I am always grateful to talk to someone who has been through the process none of us are naive & everyone has their good & bad stories. You should celebrate I will celebrate for you we all have to grasp life & live it xx

  • Yes. We must celebrate what we have and live in the moment. Thanks so much for your support. X

  • Hi Sharon- you most definitely give us all hope!!!! Please keep on this site and keep us posted on your continued success, When newly diagnosed it is really hard to be optimistic with all the bad statistics out there. Maybe it was too soon for her to take it all in so early on her journey, but I am sure it helped her.

    My onc said that 85% occur within 18 months. WOW!!! I am at 15 months and worry everyday. I feel like I am a ticking time bomb sometimes, but I am a very optimistic person and I think mind over matter really has kept me going.

    Love to All, Carol

  • Hi Carol, I guess feeling like a ticking time bomb pretty much sums up this disease. I am sure we all feel like that from time to time. You are in good company with all the ladies here. I am inspired by some of the insightful words that I have read from this forum. I have had a wonderful counselor that is my go to, when I am feeling it all becoming too much. My anxiety can get out of control occasionally. I suggest getting someone to talk to if you haven’t already got one. Much love. You sound like you might be lucky with such a long remission. Fingers crossed for you. Sharon

  • Wonderfully hope giving for others! I'm sure you did the right thing, Sharon.😊 Love, Solange

  • Thanks Solange. Your words have often inspired me. X

  • Dip into the forum now and again and read your wonderful post. Just wanted to add my own experience to try and encourage others. I was diagnosed 3c had debulking and finished chemo in Dec 2011 ...... I know I am very lucky as I have not had any recurrence....so I am now just over 6 years in remission. To say I feel blessed would be an understatement. I no longer have any hospital appointments as I told them after 5 years I wanted to get on with my life so they let me go. During the last 5 years I went for 3 monthly then 6 monthly then latterly yearly check ups. I made the decision at the start not to have my Ca125 taken after my nurse told me they would only treat symptons and how would I feel if my Ca125 started rising so it made sense to me not to have that worry. I never feel completely free of OC any twinge and I immediately turn my mind to it but Im still here enjoying life and I try and take nothing for granted. Wishing you lots more years of remission and heres to spreading positive news xx

  • Wow what a lucky girl you are. My oncologist also told me about a lady who was in the same position as me and never reoccurred. You guys are an inspiration to me. Thanks for sharing. X

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