Sluggishly slow CA125 rise over a year. Popped up on a scan after 12 months of sweating.
2 x lesions under 2cms sigmond colon & Liver capsule. 10 microscopic spots.
No surgery, recurrence too diffuse.
6 x carbo + caelyx.
Yesterday
Mid-treatment scan. 3 chemos down 3 to go.
It was good news, great even.
Just the lesion on the liver capasule left and that little bugger has shrunk from 13mm to 6 mm.
The oncologist I saw was a registrar.
And explained in great detail the typical disease path I might be walking.
I am very familiar with the path.
I think every woman on this site is.
I would like to believe there will be other paths I might find myself on.
But she was casually insistent. If I get to remission it won't last long. And the treatment will stop working.
I should be celebrating. The scan shows great results. Better than I dared to hope for. But her words are like tinnitus - they ring and ring in my ears.
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DianaPrince_
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Hi Diane, I totally agree with what you say about the registrars words ringing in your ears, not at all comforting. I completed six rounds of chemo, paclotaxil and carboplatin and I'm now taking Naraparib parp inhibitor. Scan results in July showed no evidence of residual disease. My next scan is in November so the nerves will kick in soon. Do try and look at the positives from your good scan result. I wish you all the very best, Maggie.
Hi, I was wondering how you were getting on. I totally get how you’re feeling, exactly how I imagine I’d feel. I’m not there yet but a good chance I could be walking down your path. There may be another path. Women have recurred and then nothing for a long long time. It’s not set in stone. Focus on the good news. Sending love ❤️
I am sorry the oncologist wasn’t helpful or empathetic.
I am learning that no one really knows what the path will be. There are statistics, numbers or percentages but we are people. Each of us unique so we can beat the odds or follow the familiar path or somewhere in between.
I’m glad all is going well and the treatment is working. Trust your body and be hopeful. Why things can’t go well? Who knows?
Hi , sorry you had to hear and are having to deal with the registrar’s need to go into details. The path we are in reminds me of the yellow brick road , a place where putting one foot in front of the other brings challenges but importantly hope. The results of chemo are so hopeful for you to reach NED again.
Diana it sounds like you’ve responded really well to the chemo so this is great news, and yes you should be celebrating!
I don’t understand why some oncologists insist on giving you future scenarios when in reality they don’t know, they can quote statistics but how do they know what each individuals path will be?
I’m living with my low grade ovarian now and I know I’ll never be free of it, this summer chemo didn’t work for me but I’m now on Avastin and my numbers are dropping. My oncologist has never told me my prognosis and is always positive in that he reminds me there are treatment options left and I’m feeling relatively well. I know I have incurable cancer and what that means but right now I’m focusing on living now, none of us know what lies ahead. Please ignore your gloomy oncologist and focus on the positives, the chemo is working fabulously and hopefully you’ll get many more years NED. There are lots of women on here who have recurred 2 or 3 times and are now having long periods of being disease free, I hope the same for you, and me!
Thank you, Lizz49~yours are the words I needed to read this morning. I had a night filled with Future Fear. I am ready to go out and embrace this glorious fall morning here in southern Oregon. Isn’t it amazing that your words can touch someone on the other side of the planet!
Diana, I celebrate your present good news. And absolutely relate the insecurity that this condition brings to us all - whatever our stage of treatment.
Well I think it fantastic news 🥳🥳🥳🥳 and I think the registrar is a BURK! 🤣🤣🤣everyone is different and she has NO right to mess with a WOMEN'S DETERMINATION 💪👊 I have read loads of comments on here of women who go into reoccurrence then remission and are still doing fine! Katmal is 1 of them going 17yrs now stage 3! Have some PMA fight the thought's and enjoy your celebration of today X ( the registrar is a negative nancy) love and hugs Rhian xx 🤯sorry for the rant 🤣
17 years ago last Friday I was diagnosed 3bHGSOC BRAC2 and told I have a couple of years. Still here despite 2 recurrences, a grade 3 anaphalactic shock from chemo, 3 clinical trials (still on third, Olaparib nearly 11 years) and over 11 years NED. Hold on to hope, don’t give up the fight even when others tell you otherwise xx Kathy xx
Thank you so much! Reading this ladies post gave me the most sickening feeling I’ve had in a long while 🥲I have then gone onto to read all the positive comments, that registrar is trying to justify her/his existence 😟
I really wish they would think about their words and how we hear it. I was once told by a registrar ‘well, with a life limiting disease I would just do what I want’
That was 6 years ago and yes lady, I am doing what I want in spite of you!
Many a conversation with my oncologist about this, and he knows how my head works and what I need to know.
I’m on a trial again now, and last time I heard some absolutely disgusting treatment from a reg to the lady in the next bed…..I REALLY hope she went to PALS about him 🤬 it was so bad, I told the nurse I wouldn’t have him discuss anything with me!! Poor lady
Anyway, your news sounds great 👍🏻 just keep going xx
Hi. I feel the same as you. I finished my third lot of chemo in July and there was a small amount of cancer left. My oncologist said “We’re giving you a break.” She was happy with results but assumed it would keep coming back: “We have loads of treatments available.” While I guess it’s better than no options more treatment sounds dreadful to me. I try not to think about it. I feel fine now. Anyway there are people on here who have one or two recurrences and then don’t have any more. It seems unpredictable.
This oncologist shouldn’t be allowed anywhere near patients - perhaps she should instead consider trying out for the role of Eeyore in an upcoming production of Winnie the Pooh. There clearly ARE other paths you might well find yourself on, as demonstrated by the positive stories shared by many of the fabulous ladies on this site. The fact is that you have responded incredibly well to your current treatment and NED is again within sight. And SHOULD the beast rear its ugly head in the future there are other treatments to try and new ones being developed all the time. I hope you can manage to put this (being polite here) donkey’s comments to one side and celebrate the good news. Sending you heaps of positivity and best wishes. 😘
You should be celebrating you’ve had a great response. How dare that registrar be soo negative! What are you supposed to do with that info that isn’t cut and dried and you are an individual not a statistic!
Please celebrate how well you’ve responded to treatment and look straight forward on the pathway - all the best xx Jen
Unless they or someone they love has been through it, I really don't think oncologists realise the weight of their words. It is fantastic that this treatment has worked so well, absolutely brilliant, and as others have said, there is so much research going on and new options in development, the landscape is changing quickly.
Will going back on to Olaparib or another parp be an option? I'm reading about lots of ladies in the US who are doing well on them longterm. Not sure what the guidance is in the UK, or whether it's being re-evaluated.
Hello luv. Many ladies living with OVCA had had 1-5 or even 7 occurrences & are still here after 10 years. Stay strong, finish treatment & get as fit as possible to fight the next battle…be it in a year, or 5.
Thank you for taking the time to reply. I'm so grateful that there is a place like this, with women like you, where I can share how I feel without, guilt or feeling like a burden, like i'm over reacting and all the other complex feelings that come with having ovarian cancer.
Dear DianaPrince I am on a very similar treatment plan only I am having my first treatment today I pray I hear the results you have midway through I also have had the doom and gloom talk but conversely it was also said that if this shows a response then there might be something else So contradictory messages from the medics I know but I am holding onto the fact all paths are not set in stone You just take heart from those results and let’s see after the six treatments what the something else is going to be Take Care xx
Every time I give a presentation to medical students (Survivors Teaching Students programme, if you're well enough, see if you might be able to get involved), I say DON'T tell patients that it will definitely recur. (a) they don't know that and (b) even if they did, they may be taking away someone's last hope. Hope your registrar is wronger than wrong and you have a good long remission, preferably permanent. Sending hugs!
Great news that chemo is working well and getting rid of the beast hope this continues to NED.
I’m on a similar path being HGS BRACA 2 now stage 4a and on recurrence. Carbo/Taxol worked for me removing to Ned from the liver and area between leaving a very small part of original tumour 7mm left on spleen.
Maintenance of Olaparib next. Olaparib didn't work for me and caused tumour to grow (watched CA125 slowly raise).
Next Carbo/Caelxy which I’ve just finished waiting scan date. Got good results midway Chemo worked to remove new spread towards colon just hope spleen tumour has been removed.
Oncologist is suggesting Hormone inhibitor for maintenance next. Don’t think there’s another option while being Chemo sensitive.
I have asked re trials without success. Says most trials are for when Chemotherapy fails. He hasn’t been telling me prognosis but there is a pathway. I’m 7 years since diagnosis enjoying life one day at a time and feeling well.
Celebrate your good news and only take the positives. Hoping your scan is NED sending hugs and wishes
Hi Diane, I am HGSOC Stage 3c. When I had my first appointment in the spring, I asked about my prognosis and my consultant told me 4-6 years. And that each period of remission after the first would be shorter and shorter. That was pretty stark. My sister and I cried. We went to my parents’ house and cried some more. I’ve got a very young child. I don’t think it’s at all helpful for consultants to paint such a bleak picture, especially when the diagnosis is new and everything is so frightening. But more than that, they simply can’t know. As many have commented here, we are people not statistics. And what people we are! Your results are great. You are doing fantastically. Let that be the thing ringing in your ears. x
Hi DianaPrince, I’m so sorry about your latest experience of negativity from the registrar - that is so counter productive and alarmist! I sense they feel they are doing their job to paint the worse case scenario - to cover themselves - but it’s cruel and counterproductive right now!! I had hypnotherapy throughout my chemo and thoughts, beliefs and the subconscious can play an important part in healing … so seize this massive positive that the tumour has shrunk by half… . It will be gone by the next scan… the chemo is working and the body can heal itself. (Not sure if you would try mantras and visualisations but I did!!) You might also like to read Joyce Walker (a New York journalist) and her book ‘Cured’ …. She was stage 4 ovarian and is still alive now, some 23 years on. She’s quite funny how she writes in a kind of cynical way…. She went through a lot!! I’m convinced there are other paths!! Stay strong! There’s lots of people willing you on here!! xx
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Clear cell scan all clear but still need chemo ?
3rd line treatment in less than 2 years!
My recurrence, would welcome your experiences and suggestions.
Op advice
Scan result-no shrinkage but surgery going ahead!
