Hello Everyone, just stopping by to say hello. I was diagnosed with stage 3C high grade serous ovarian cancer way back in September 2007. I remember searching online to see if I could find any long term survivors of this cancer and now I am that person.
So I’m just posting here today in the hope that I can help to give someone hope.
I had a recurrence in 2010 and another in 2018. I’ve had surgery and chemotherapy with every recurrence.
I’ve had the same chemotherapy drugs every time - Carboplatin and Taxol (Paclitaxel).
So please don’t give up hope as you embark on or as you continue along this journey with ovarian cancer.
Be well. Be happy.
Written by
TealSista
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thank you! We all need to know there are long term survivors! I was diagnosed 3B in Sept 2015. Carbo/taxol and one small recurrence in 2020 in an inguinal node. Radiation took care of that.
My oncologist stated that he’s treating it like a chronic illness not a terminal one and I see him every 6 months now.
thankyou so much for posting this message. I was diagnosed with Stage 4 grade a high grade serous ovarian cancer in August 2021. I was given 6 to 18 months. Debulking surgery and chemo followed, and am now in Niraparib and in remission! I do worry about recurrence ….so your post is very uplifting and reassuring. It’s good to know that there are long term survivors like yourself. Positivity is the way…thankyou again. Xxx
Hi there K, I don’t take any supplements. I walk a few miles most days. Follow a healthy diet - fish, chicken, beef, vegetables, potatoes and rice - all natural foods. I also treat myself to a glass of fizz and some dessert at least once a week because life is to be enjoyed.
Thank you so much for sharing this wonderful story! Do you mind if I ask which hospital/health trust you are with and where you received surgery? Many thanks and I hope you stay well for many, many more years to come !xx
Thank you for sharing this. It gives me hope to push back my dark thoughts when they creep in. It's also good to know that a recurrence can have a good outcome. Best wishes x
It was really good to read this 1st thing this morning as I've been awake in the night worried about the future! 💝 it was a bad night but hope is what we all need X thank youX and congratulations x
Hi Newbery You're not alone. I had a terrible night last night, couldn't sleep and very tearful. Worrying aboutnext scan, future etc etc. I get really upset a d stressed but then next day I get my positive head back on tell myself not to give in, but I guess we all go through this. X
My first was 2012 a month after my dad got a terminal diagnosis, the second was 2013 , a month after he died. I’ve been NED since a scan in August 2013 albeit I have, since that time, been on a trial for Olaparib.
Please accept my condolences on your Dad. Like me you clearly notice the timing of what happens in our lives. Your brain says coincidence but your heart says otherwise.
I’m impressed that you’ve been on Olaparib for 10 years almost. How’s that been?
Thank you. It’s been fine. Like with my other treatments I continued to work full time. Until I was made redundant Xmas eve 2021. I’ve gained a lot of weight but hey ho I’m here lol. I no longer work, deciding to retire early at 63. We got another dog so I walk a lot with him and enjoy life. How are you doing?
Hope you feel better soon. I am thankful for every day and love nothing better than taking the dog for a walk and enjoying being outside even if its snowing or rainibg, grateful to be here.
I’m at 5 yrs tomorrow 3c and malignant ascites at diagnoses ,,olaparib for 2 years after debunking and chemo .No reoccurrence but I always feel like the grim reaper is behind me anyway ,I am lost wondering what symptoms I’m even looking for ,do you mind sharing symptoms of reoccurrence?
Hi Clara. Unfortunately I can’t. I’ve never had any symptoms either at diagnosis or recurrence. Originally I was diagnosed off the back of investigation for an unusual bleed. Both recurrences were detected after my CA125 rose above 37. I totally get the feeling of the grim reaper but I try not to think about it and live, especially after I was given 2 years at diagnosis but still here in my 16th year. Worry about it just spoils what you have now xx
Just what I needed to hear this morning so thank you for sharing! Hope is what we all need and your story reinforces the belief that there is hope for all of us. Wishing you well for many more years in remission xx
Hi tealsista, what a lovely story to start the morning with, I was having dark thoughts yesterday but today you have helped me back to positive thinking. Thank you soo much ♥xx.
Thank you for your lovely message of hope and resilience. It's just what we all need to hear sone positive good news to carrying on fighting this insidious disease. Wishing you all the very best and many many years of NED.x
Hi, thank you for sharing, you have given so many people hope and positivity today and lifted my spirits. I am on my third recurrence for the same diagnosis since 2016, then 2019 and again in March 2022, still on chemotherapy and will remain on Avastin again after chemo, which I was on for 2 years previously. Are you on any maintenance treatment? Keep well and continue what you are doing …. Mags
Hi, I am in Ireland, all countries seem to offer different treatments, Niraparib unfortunately is discontinued in Ireland for recurrence which my oncologist was going to try this time. Where are you based… Mags
I'm based in London, UK. Currently on Olaparib and Avastin following first line chemo which ended last April. I was told avastin won't be offered again though. Annoying how places differ isn't it?
Basically I was told I could just have olaparib on its own or with Avastin but if i declined Avastin it wouldn't be offered again down the line. I wouldn't be able to 'save it' for later recurrences if you know what I mean.
Absolutely, it’s so wrong that funding issues come before what is best for us. You may be lucky and not have a recurrence 🤞people on Olaparid seem to do really well…Best of luck, Mags
My goodness I needed to read this today. Stage 3C endometrial, spread to one ovary and maybe a lymph node. Yesterday I was signing consent for my internal radiotherapy and the consultant said about long term side effects in 10-15 years “if you live that long” and it’s really sent me into a bit of a slump. Thank you for posting 🥰
so grateful for your post. A dose of positivity certainly helps during this journey ❤️. Thanks for your thoughtfulness. If I may ask, what was your age during initial diagnosis?
so happy to see your news. I am always very positive but sometimes think it’s not going to be great ! I am 3 yrs in with the same diagnosis so I’m hoping to keep going for a few years yet . Love to all and let’s all keep positive 😊🙏
oh wow! Thank you for sharing your story. It gives the rest of us hope. I’m on my 4th type of chemo in 3 years following my laparotomy in 2019. So far , every time it rears its ugly head there’s something to stop it or at the very least slow it down. Metastatic cancer is a worry and in the dark moments in the dead of night it’s comforting to know there is hope. I’m on my week “off” and will return to my weekly chemo with a spring in my step! 💕
Thank you for your testimony. It gives hope and good wibes. I have HGSOC 3c too, but not very lucky with a remission periods. I's been 3,5 years from diagnosis and yesterday I started the 4-th round of chemo as me cancer progresses. Lucky for you. Sending love from Switzerland.
I too have an uplifting story for you. I was diagnosed in April 2006 almost 17 years ago. I had just experienced the birth of my first two grandchildren. I had felt unwell for a long time and being a nurse I did delve into seeing what it was with no success or support. I found a lump under my clavicle which was the first positive thing I had to tell the doctor. You can imagine my frustration. After a biopsy of the mass and a CT I was diagnosed with stage 4 high-grade serous carcinoma. I had five carbotaxil followed by Major debuking surgery. I then had three more treatments. My CA 125 was 4,000. It never returned to normal. Once when it was increased I tried a trial drug with bad outcome. I then tried doxel but was removed because of side effects.The years followed. I quit my job which I loved because I was given one to two years life expectancy. I was able to get a new oncologist which was a wonderful man. For 14 years he looked after me until retirement. My levels continue to rise and fluctuate. Usually between 200 and 300.
Last year my doctor retired which devastated me so I moved to a different hospital and have a new team. In that time my ca-125 level rose to 1,000. I was put on four more carbotaxle treatments. After my CA was 11. Has never been that low. I am now on Niraparib and seems to be working although my CA 25 shows the small increase. I try not to worry about that but I do. I have had a few nodes that have always shown on CT scans and have never gone away so I would say I have never been Ned
The only thing I can think of that I did was take turmeric. I no longer take it because I was advised that it is hard on your platelets. So I wouldn't recommend doing this without doctors consent.
On a very happy note my two grand babies are going to be 17 and I never thought I would see that. I also have three more grandchildren.
I hope this helps some of you.
Remember life is not measured by the number of breaths you take but rather about the moments that take your breath away. Concentrate on those
What an absolutely beautiful story; warms my heart and so happy for you! In the 14 years you were with the good doctor, were you on any treatment or only periodic screening tests?
Hello there. I’ve never had any treatment for ovarian cancer apart from surgery & chemotherapy (Taxol & Carboplatin). I’ve never had Avastin or any of the Parp Inhibitors like Olaparib, Niraparib etc. I don’t take supplements or follow any special diet. So far so good. I walk a lot - several miles a day.
I had regular CT scans and blood work. and visits. I had a node in my neck which was the original place of diagnosis that moved up and down and at one point was the size of a golf ball. I was offered radiation but my doctor felt it was a systemic disease at that point and it was a good place to be able to do further biopsy if necessary. When I went last year to my new oncologist they did do a biopsy. The reason for that was my CA 125 was a thousand. I think they questioned the diagnosis of high grade serous carcinoma because of my survival time.
Thank you for that. I’m never going to be NED and have nodes etc. My CA 125 was 4000 this time last year and now fluctuates between mid 300s and 500. My treatment this week has been deferred. I have trouble getting my blood back up to scratch for more chemo. Your story really helps me to feel positive. 🥰
Wonderful!!!! I was diagnosed with stage 4b oc, had chemo and op, now on Niraparib but my ca125 levels are rising 608 today! I'm worried sick, so your post has gave me some hope....
Thanks for reply, it's so good to be able to talk to someone in same position... I had No idea I had oc, it was by chance I found out, so be told I had oc stage 4b was a bolt out of the blue, (November 2021) had 5 chemos then in June 2022 had debulking op, followed by 2 more chemos, last one August 2022, put on Niraparib my ca125 was in the 800 but after 3rd week came down got to 500 but been creeping up and today it's at 608, needless to say totally gutted, nurse more or less saying they are not sure why as last scan (January) showed nothing suspicious, however, it's easy for them to say but it's me who can't sleep for wondering what the heck is it keep going up for. I put a brave strong positive face on to family and friends but oh my word it's a heavy load to bear.
Sure. 2008 diagnosed w stage 1C clear cell. Total hysterectomy and Carbo/taxol. In remission for 6 years. CA125 went up in 2014 (be vigilant sisters, don’t stop at 5 years clear!) developed tumor on psoas muscle of my back. Radiation and chemo. Avastin for maintenance. Clear till 2019. Tumor showed activity. More Carbo/Gemzar. Avastin for maintenance. Good till Nov 22, CA 125 rising and tumor activity via CT Scan. On Gemzar/Avastin now to hopefully knock it back and go on a maintenance drug again. It’s been a journey but I keep on fighting! 💪👍🏻
it was fate that brought me here .I am 5 yrs 3c ovarian without reoccurrence.I’m in US oncology just told me I no longer need following. They are extremely overwhelmed because of the lockdowns ,I get the feeling I’m being dismissed because of that .I have to advocate for myself now .
well, my ca125 doubled from 9 to 18 after 5 years…. So I was still on follow up list when they found a recurrence on my bladder on MRI. By then ca125 was 40. Maybe they can do a blood test every 4 months?
It's wonderful to hear you are 5 years with no recurrence. It annoys me that doctor is dismissing you. This stage is no joke. Advocate for yourself. Tell them you want to be sure you stay in remission. Even your PCP can order labs to check your CA125. Have you had genetic testing? I'm almost 3 years since diagnosis. Blood work and doctor's every 3 months. I'm also in US. They talk to me like I'll be seeing them forever. Which is fine with me.
Thank you so much for posting this really good and encouraging news. It's really uplifting to read your story. I'm on my second recurrence and like you ,third time on carbol/taxol. Response is very good so your post has given me hope. Hope is what we need most on this roller coaster!. Again thanks and continued good health .
Thank you TealSista It really helps to know there are people out there many years after diagnosis and who have also successfully navigated recurrences!
Thank you so much for sharing your wonderful message of hope! It’s clear that even with recurrences we can live a long and happy life, especially now with so many more treatment options available to us. Love this post!!
You are officially my favour person of the day so far!! Just off for chemo on my second recurrence feeling a bit down, but you have cheered me right up! Thank you xx
I guess that’s why I hopped on today .Five years tomorrow from diagnosis ovarian 3c with malignant ascites (3-6mo ) life expectancy. So happy to hear others in my Wolfpack 😉,it’s hard to find a club .
What a fantastic uplifting story- thanks for sharing. I was diagnosed in 2016 with one recurrence in 2019. Been on olaparib for 3 years now with no apparent side effects. All good so far. I have monthly bloods and 6 monthly scans.
What a lovely post! Well done you. Thank you for sharing your story, so encouraging. I'm thankful for every day, and intend to make the most of every one I have. Still full-time in teaching, hoping to finish in the next 18 months, and look for some remote work so the daily pace is a bit kinder. All the best TealSista, I think you have given hope to a lot of people here xx
I was diagnosed with “advanced stage 3” (as it was termed) in 1995 (27 years ago). I’ve had two “issues” since in my bladder but thought to be unconnected with the ovarian diagnosis. I had 6 treatments of carboplatin. At the time taxol seemed to be under review. I cannot walk far now but that’s totally unrelated. All in all I feel very fortunate.
Really great to here you have done so well. I was treated for 3C ovarian cancer 6 years ago after being treated for bowel cancer and had similar treatment as you and major op at Christies. Now on yearly checks so will be on tenterhooks in April for first yearly check. Nice to hear such positive outcomes such as yours so long may it continue. xx
I can't even explain how grateful I am to you for posting this. My Mum has had a scan booked because of a rise in her CA125 and was feeling really defeatist about it, but this post from you genuinely turned her whole mood around. Congrats on your amazing story, and thank you so much for helping my family when we needed it most x
Ahr thank you so very much for your post!!!! I have oc 4b, I've searched high and low for a good ending never found one, however, you have gave me the hope I was looking forward to!!! Well done on your wellness! Long may it continue! And I hope I follow in your wonderful footsteps!!!!Xxx
Hi LouLou, I think we all have those feelings at some point in our journey with ovarian cancer. I hope you have a counsellor or someone who you can share these feelings with. You can also call the Ovacome helpline.
Thank you for your reply. I’m really sorry to hear how terrified you are feeling at the moment. As TealSista mentions above, the Ovacome support team are hear for you if you would ever like to talk things through. You can send us a message here on the forum, email us via support@ovacome.org.uk or call our support line on 0800 008 7054. We’re here for you Monday – Friday, 10am – 5pm.
I wondered whether you have had an opportunity to talk to your CNS, oncologist, or GP about how worried you are. They should be able to provide you with information about local services and may be able to refer you to specialist psycho-oncology support. We are here to help you plan or prepare for any future appointments if you think this could be useful?
In addition, I wanted to let you know that Macmillan are currently offering 6 free counselling sessions people with cancer. We have had some really positive feedback from our members about this service. There is more information, with the option to self-refer through this page on the Macmillan website: macmillan.org.uk/cancer-inf... .
Ovacome realise that ovarian cancer and its treatment can have a range of emotional, as well as physical, effects. We have several resources designed to help our members look after their mental health that can be found here on our website: ovacome.org.uk/looking-afte... .
Alongside this, our Staying Connected program consists of mix of support groups, workshops and events for people affected by ovarian cancer, including regular yoga & relaxation sessions, crafting, and creative writing. These are designed to support wellbeing, with more information about the program available here: ovacome.org.uk/Pages/Events.... You would be really welcome to join us.
I hope this information is useful. Please don’t hesitate to get in touch if there’s anything we can support you with.
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I’m still here!
I’m still here. Been given some hope. 
Very good CA125 result, over 5 years since last dose of chemotherapy
A 5 year survivor ……..
