Hi everyone. My daughter has recently had a NED scan but CA125 is rising by very small numbers. She is currently on Niraparib 100mg but this may be having an effect on her bone marrow and she has been referred to an Haematologist. She has just received her Consultant letter which says that she may have some residual disease but her CT scan showed NED.
It looks like they want to wait and see.
Is there any other scan available that can detect any residual disease? NHS or private.
Any help and advice would be much appreciated. Thank you so much
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BrandyHorse
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A positron emission tomography (PET) scan is an imaging test that can help reveal the metabolic or biochemical function of your tissues and organs. The PET scan uses a radioactive drug called a tracer to show both typical and atypical metabolic activity. A PET scan can often detect the atypical metabolism of the tracer in diseases before the disease shows up on other imaging tests, such as computerized tomography (CT) and magnetic resonance imaging (MRI).
Just copied and pasted this for your information as it clearly explains what a PET scan is x
In this kind of situation, most oncologists will rescan in three months to see if anything "shows". This also gives over a bit more time to see what the CA125 levels do. Doubling is the most obvious indication of relapse, especially when levels rise above 35. It's difficult to advise here. Would more treatment be immediately available if an additional scan was secured or paid for? If this happened to me, the first thing I would do is request another consultation with my oncologist to get a more detailed understanding of the situation.
Thanks Cheadle. The CA125 levels are rising by 5’s so currently they are 60 whereas they were 50, then dropped to 48 then rose again to 55 and 60. They are keeping a close eye on her. I just want the very best for her. Of course I do. Take care xxxx
Hi, my oncologist tells me that the success rate of chemo for a relapse appears not to be reduced by allowing the cancer to grow for a while. Between my hysterectomy and my first chemo my cancer spread through into my thorax in both lungs, under the diaphragm etc. They thought they had excised everything. I then had chemo and within 3 rounds I was NED. So, when the cancer returned I waited to start chemo and the recurrent tumors have remained widespread but small. Since March last year I have lived a healthy and happy life with a few small tumours in my pleura and lymph nodes. If I was you I would take a 3 month break and eat healthily. Minimal sugar and alcohol. Lots of walks and fun outings. In 3 months if the tumours are growing, fair enough more chemo, but what if they aren't?
Hi dears, I am bit in similar situation. I have no symptoms but my CA went from 12 in March to 106, 2 weeks ago. My CT scan in January showed already small lesions and new scan of last week showed that they are enlarged, biggest being 3 cm in pelvis and even some ascites which got me so so scared. I am exactly 1 year since last chemo was finished and I was on Niraparib since August last year. I have trip planned to US in 2 weeks and my wedding end of August so you can imagine that am stressed out what to do. We planned it so I have already some hair and we hoped for more time before recurrence My oncologist advised to start with tamoxifen and see what happens in September. He has same opinion that applying chemo now would just make me sick and not necessarily help me get rid of tumor cells. Am quite happy with tamoxifen so far, my hear beat is back to normal and no more constipation so am hoping this was my body craving for change in medicine.
It has been major struggle for me too (am 42) but I decided to trust my doctor, be positive, do more meditation, avoid sweets and alcohol and do lot of exercises (is what I did already since diagnosis last year). As I would do if there was no examination at all and I was not aware what is going on in my body. The fear is my enemy and am trying to get rid of it. Is such a beast this cancer. And nobody can tell with certainty what helps and what doesn’t :(. Stay positive and stay healthy and as strong as possible. Both physical and mental. Good luck for you all strong ladies ❤️🙏😘
Hi Brandy, with a trend like that of climbing CA125 over a period and enlarging masses I would definitely not make any suggestions other than what your oncologist tells you to do. The build up to a wedding is a high stress time when you have to fight with your mother and be irritated by your future mother-in-law!!! :). Maybe once the stress subsides and you rest more?? If you are determined to postpone chemo to after the wedding, you could look at the Care Oncology Clinic protocol. They are in Harley street in London. Jane Mclelland adds to their protocol lots of supplements? Do you have time to Google?
I am going through the same thing. Have been on Niraparib 100mg since November and Ca125 is been rising above normal limits. I had a scan in April showed NED and just had another last week which also showed NED. I am in the States and my oncologist is also taking a wait and see approach. They don’t want to start any treatment until it is definitive. He did discuss starting Keytruda once there is a definite reoccurrence. I think that this is a standard approach. Hope all goes well for your daughter.
Keytruda is an immunosuppressant that was originally used for non small cell lung cancer. Over the past few years they’ve had trials using it for many types of cancer and found it to be helpful for different types of cancers, including ovarian. I believe to be a candidate you have to have certain tumor markers. My doctor said I meet the criteria. It doesn’t hurt to ask about it. That’s what is wonderful about this sight, being able to share information. I am leaving next week for London and Paris and intend to fully enjoy myself and stay positive. When I get back I will worry about what’s next. Wishing you and your daughter the best! xxx
Thank you so much Hockeymom52. I have made a note of this drug which is available on the NHS in the UK. I think it is currently being used for cervical but one can only hope it is effective for ovarian in due course. Have a wonderful time in London and Paris and I wish you all the best for the future x
I did check my health records and it was noted that I am TMB positive which is higher than 10 which makes me a candidate for Keytruda. It is a tumor mutational burden. Something to discuss with your daughter’s oncologist. Good luck wishing you all the best! Xx
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My oncologist advised to start with tamoxifen and see what happens in September. He has same opinion that applying chemo now would just make me sick and not necessarily help me get rid of tumor cells. Am quite happy with tamoxifen so far, my hear beat is back to normal and no more constipation so am hoping this was my body craving for change in medicine.
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