Hello ladies I am more frightened than disappointed. I was diagnosed with stage 4a ovarian cancer in late 2018 it had spread to the peritoneum. I had chemo and debunking surgery in 2019 followed by avastin for 12 months. Recent PET scan shows that the cancer has reoccurred in three places in peritoneum. I have an appointment with the oncologist next week to discuss the PET scan results and my greatest fear is that she will not offer me treatment because the cancer has reoccured so soon after the last treatments . Chemo ended 14 months ago and avastin ended 3 months ago. I feel well and I lead a full and active life. I am 58 years old. Has anyone had similar experiences?
Kind regards
Duskygem
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Duskygem
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Hi, given you completed chemo 14 months ago id be very surprised if you werent offered treatment. My understanding is that usually you would be considered platinum resistant if you recurred within 6 months of completing chemo. I do hope you get the treatment you need. Big hug, Kathy xx
I had 2nd line only 6 moths after my 1st had finished. There is no need to cause yourself undue stress now as there are so many options still open to you.
That being said, it is so very hard not to fret during the waiting period. Do try to do some activities to distract you. It may sound trite but distractions do help. I paint others may have other ways to counter-act the ‘wait and worry’ - it’s always the waiting that’s worse.
Thank you Irisisme you have had a difficult time by the sound of it. I am relieved to hear that there are a range of treatment options for me. Hope you can be well and stay safe x
Hello Duskygem - I was stage 4 at diagnosis, after Carbo/Taxol and debulking surgery, I recurred after 6 months on watch and wait. I have had carbo/caelyx / carbo/gemcitibine / Niraparib and currently weekly taxol. My team say my cancer is not curable but it is treatable, possibly for many years to come, stay positive. Merry christmas x
Thanks Lyn, your message was a great comfort. At stage 4 I am aware of the outcomes and it is good to know that I can be treated for years to come. Fingers crossed for all of us x
Hi Dusky, I'm in the same situation my CA125 started going up about 3 months ago and I still haven't finished my front line Avastin, the last dose is in the beginning of February. I went to see my Oncologist about 4 weeks ago and she agreed with my thoughts that it wasn't a recurrence but the original disease. She said I could go back on chemo straight away (I finished chemo at the beginning of May and you need 6 months break to be Platinum sensitive) but she recommended finishing the Avastin which is working but not completely and then start chemo again which is what I am doing. Hope this helps. Sue xx
Thank you Sue, maybe mine is the original disease too, I had not thought about it that way. I have a telephone consultation with my oncologistOn Wednesday so I will clarify that point. I started avastin four weeks after chemo so surprised to hear that you need six months in order to be platinum sensitive. Sorry your ca125 level has risen. Sending you thanks for your reply and we’ll wishes for your health
Hi Inna, I'm okay better than I was and currently on weekly Taxol. I'm hoping for a Clinical Trial after the Taxol. Recurrence is when the disease has become active again and needs to be treated. Hope this helps. Sue
Thanx Sue. I know what is recurrence I was asking what is the difference between recurrence and original disease. I sort of understand it and Tillymint explained a bit more .Thanx to you all lovely people )) xx
As I understand it if after chemo or debulking or both there is no evidence of disease on a scan coupled with normal .ca 125 marker in your blood and you are symptom free. I personally was diagnosed with stage 4C and advised at the beginning that it isn't possible at the moment to 'cure ' such an advanced cancer but it is possible to control it, which may mean getting it to a point were it doesn't show on scan and you live symptom free for as long as possible. So I suppose as long as it's in the same area of your body if it turns up again it is the original back again. CT scans only pick up stuff over a certain size. I personally haven't yet had a ' no evidence of disease scan ' since diagnosis in 2019 so I haven't called my need for further treatments a 'reoccurance' but I am hoping now I have just started a maintenance regime I will soon get that scan showing that.
Hi Tilly. Thanx for answering. So if cancer show up in any new part of body its called recurrence, but if its grows in the same part where it been found at the diagnose and operation then its "original " or " secondary " ? Am same as you Tilly 4C/ Been diagnosed exactly a year ago. But non of oncologists and my team ever told me its incurable but only treatable and controlled. May be because I wasn't asking such specific questions? )) I remember my consultant when I met her once and only time told me that "you now go to 6 chemo after the op and we will hope the cancer never come back. But unfortunately IT's got nasty habit to come back, so after chemo you go on Niraparib to maintain it and gave a a chance " . Mine was in the ovary and spread to diaphragm and zap a tiny bit5mm on liver because it was very close. Before the op they saw am stage 2 only and we surprised to find 5sm tumour or diaphragm/ And am surprised now why they haven't seen whole 5sm on CT scan ? Its should be very visible, no ? Am on Niraparib since mid October but had breaks and delays, so restarted it exactly 2 month ago today. My CA125 was 19 yesterday, in December it was 18. Do you think 18-19 is OK? I was calling them yesterday because I have weird nagging pain in my right " ovary ". And there is no ovary the now. Its keep coming and going but / At this very moment when am writing its sort of like throbbing and dont feel nice )) They said took paracetamol and will speak to the oncologist but with marker 19 they don't wont to expose me to CT radiation so often.....
Please remeber I am only speaking from my experience and I am not an expert. As I understand it 'Recurrences' are the original 'type' of cancer being evident again. Not necessarilly new.'Secondary ' is when the same type of cancer cells are found elsewhere in the body. Either at time of diagnosis or latee(for example if they where to find cancer in my lungs now it would be secondary ovarian cancer. Again as I understand it, that's because the nasty cells mutate in the same way as the original cancer)
I think I sense the pain you are feeling has made you start worrying, Your body continues healing and scar tissues form which can be painful for a long time.
You CA125 is low. ( Some have 4 figure readings!) You can have a CA125 reading for other reasons too. So please don't worry about a reading of 18 or 19.
Regarding them finding 5mm on your liver when they operated that you didn't know about. It is below the threshold for a ct scan to show. I was told prior to operation they may find areas that hadn't shown on scan. Chemo after operation is to kill off any microscopic cells not visible on scans or to surgeon's when operating.
I was only told by my oncologist I was not curable because I directly asked if I was, she did not offer it up . I needed to know not everyone wants to know. That was my diagnosis not everyone is the same.
Make sure you keep your bowels moving as that can cause pain in the are you are describing as can water infections. Maybe get your per checked too.
Thanx Tilly. No I was talking about 5cm tumor on my diaphragm they haven't spotted on CT prior to operation ! 5mm was on the liver next to diaphragm I though 5 cm is big enough to be shown on the scans. Am not worried about CA125 - marker 19 They said its low. Am just thinking 19 means its still something present or active? why not zero then ? I wander what is normal marker for people without cancer at all ? ))
Normal is 0 to 35. Ask your oncologist or nurse if anyone ever gets a zero reading. They only use your 125 result alongside other information scan results and symptoms. I understand your worry if you are feeling that a 5cm growth scan was missed as that would seem to be large enough to show on a scan. Maybe also ask why 5cm didn't show and see what answer you get. Once diagnosed I don't think we are ever free from worry but some concerns can be answered by your team. Good Luck with your outcomes.
Thank you Ruebacelle, I’m sorry that you have had so much chemo. I feel reassured that there is every chance that I will get treatment. Stay safe and well.
Hi Duskygem, always remember you can ask for a second opinion on NHS if your team isn't willing to, or hasn't the skill within it, to operate again. When my oncologist said my recurrence of Stage 3c 15 months after completing carbo/taxol was 'too dangerous' for another operation, my GP supported a second opinion, because I was feeling so well. That was 7 years ago. Ovacome support helpline as well as searching on here or for their information sheet on second opinions maybe useful.
Stay safe and well, as other say too. This way you give the medics the best possible platform for their skills. x
Thank you bluepeterella In my heart of hearts I know my prognosis is not great but I am such a busy and active person and I have felt so well throughout that I am shocked that the cancer is still playing up.. I am pleased to hear that there are other treatment options for me and long may we both get through this xxx
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