Hi, my mum had her debulking surgery (complete removal of all cancer) in April and finished her last chemo two weeks ago. She was diagnosed in November 2021 with Stage 3C High Grade Serous.
Her CA125 is normal and was 949 at diagnosis.
We spoke to her oncologist yesterday who said no scan to confirm NED, no bloods or scans going forward, just 3 monthly chats to discuss symptoms.
She is BRCA and HRD negative so he said he wasn't convinced by maintenance.
We are in the UK and are so shocked by this lack of regular bloods etc, please can anyone offer any insight?
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Worrieddaughter95
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I’m really surprised by this.Since finishing frontline i have had my ca 125 checked monthly.I never had a scan after treatment.I have them taken at my gp surgery and they get sent to the oncologist then.Could you ask your surgery if they could take them? I agree with you this does sound very slack and i would insist that you want her bloods checking.
Thanks so much for your reply, my mum has been very down and interpreted it as he's just waiting for her to recur. The 3rd doctor to see my mum initially was the one who diagnosed her and we are wondering if he can help at the GP - he's lovely X
I totally get how your mum must be feeling.It gives us some peace of mind.I would give your gp a call and speak to the doctor you mentioned if possible,explain that your mum is very down because of this and hopefully they will agree to take them for her on a regular basis x good luck x
This is unusual. They usually do a scan after the final cycle of chemo and before starting the maintenance treatment. Did they discuss this with you? She's eligible to have PARP inhibitors and because she's BRCA negative it will most probably be Niraparib/Zejula.
The very good news is that they were able to take all the cancer out.
Please tell your mum not to be upset, there is always a solution around this. If in doubt have a second opinion.
Hi! Her oncologist said there's new evidence to suggest that brca negative ladies do better on a parp further down the line so he likes to reserve them for then. He said he's not convinced they work based on his experience. I've emailed her surgeon and a private gynae onc for their opinions on this... I definitely think she needs a scan so we are going to ask him next week if only for peace of mind. My mum had to ask if she was in remission and instead of celebrating now she just feels lost X
Absolutely, it is a very good idea to insist on a scan and a clearer idea about the future screening plans. This will give you some peace of mind.
As for the PARPs, no one knows how your mum will respond to them. Like anything else with Ovarian Cancer, what works for some may not work for others. I hope you'll get some better advice from her surgeon and from the private oncologist.
"Remission" is a bit of a controversial terminology with Ovarian Cancer. Some oncologists will lecture you about it and will tell you that unlike blood cancers, there's no remission with advanced OC. Instead it is best to use the word "NED".
Meanwhile, your mum should celebrate the very big milestones that she had achieved and cross each bridge one at a time.
I suspect the oncologist is negotiating a route between less regular check ups to ease the burden on clinics and some research which suggested that routine blood tests promote anxiety in patients. The biggest sin I think is that he didn’t ask your Mum what she thought. I would encourage her to contact him again and to say what you have just written…she believes she has just been left to wait for recurrence. He needs to explain his decision and to listen to her point of view IMO x
Hello, I was given the choice re routine bloods or not. It is my understanding that research shows routine bloods promote anxiety . Also that another price of research shows identifying a reoccurrence earlier does not make a difference to outcome . (Unlike early detection for initial diagnosis) Early detection for a reoccurrence does not mean treatment starts straight away as it may be better to wait. Treatment timing for a recurrence is a complex decision between bloods, symptoms, scan (and fluid in belly?)
I rang Ovacome help line re this exact question. They were incredibly helpful. I suggest you and/or your mum ring them and talk it through.
It really helps you formulate your questions/view before contacting your Onc. Sending love xx
I’m in the states so it may be a bit different I finished frontline in October 2021 my type is 3B Endometroid I had a CT scan when I finished which was clear but showed a hernia which I had repaired . My Onc follow up is every 6 months I insisted that I have a blood draw every 3 months my Gyno Oncologist follow ups are also every 6 months I am to call her immediately if any symptoms creep up I was told no further scans would be done unless I have symptoms or CA125 changes.
I’m in the uk and I still have 4 monthly blood tests and a telephone consultation even after 5 years. I was very anxious about a recurrence (and still worry about it) so this suits me fine.
Hi I'm also from the UK and was diagnosed with Stage 3C High Grade Serous in Jan 2020. After my debulking surgery and chemo finished July 2020 I didn't have a follow up scan but I had 3 monthly blood tests for 18 months which then changed to 6 monthly. Only time I had ct scan is if I complained of any type of symptom, or when my Ca125 bloods had risen slightly (74) and i also had abdominal symptoms my oncologist ordered one.
I was diagnosed feb 2021 with stage 3 had full hysterectomy followed by chemo. I am at the moment having 3 monthly checks with blood tests and phone calls. So am surprised your mum not having blood tests. Luckily at moment am OK.Good luck hope you can sort this out for your mum
I haven't heard of this approach before but the bottom line is your Mum is not feeling confident about her oncologist which is not good. I would get some advice as described above and then talk to the oncologist again to see if she can get some better insight into the thinking behind this. All the best and take care Sue xx
Hi. You’ve gotten good responses here but I agree with Sue: your mum needs to have confidence in her oncologist. I get his view on maintenance. I didn’t have maintenance after frontline and I recurred after 9 months. The odds of recurrence within two years are high. I believe it was only rucaparib that had the problem for nonBRCA women, and only under specific circumstances. Please get a second opinion. Xx
I’m in the US, and my diagnosis is the same as your mom’s. I got scans and blood work every 3 months until I had a recurrence. I have been through treatment for the recurrence and I am stable, so now we are to do checkups every 6 months. I am on Avastin and Niraparib, so I have to get blood work every 3 weeks. I am a nurse, so I like having that information, but I’m sure for others it can definitely cause more anxiety. If I were in your Mom’s position I would at least want a post- chemo scan as a baseline for comparison, and bloods and a scan every six months. The good news is that your Mom is about to start feeling so much better as she recovers from the chemo. I hope you both can enjoy this time of no treatment. Maintenance treatment is not as bad as chemo, but it’s no picnic, so you have to cherish every moment that you feel well. It’s my hope for you and your mom to have many many more of those to come!
I had Avastin as maintenance, even though braca negative. Ca125 every month or so and rescan when ca125 started steeper rise ( it started to rise in small increments as soon as chemo stopped) and I had symptoms - about 8/9 months out of last chemo.
I am in the uk and had the same diagnosis, with 5 chemos then debulking in January and 3 x more chemos post op. I was told they had completely resected the cancer, after it had completely responded to chemo but was still given a ct scan after final chemo in april. I have heard that ct scans after treatment are also used as a baseline to inform future treatment plans should there be a recurrence. I asked for a second opinion after first being refused parp inhibitors as i am brca negative. Despite being brca negative the tumour itself can be positive and patients in this category may benefit from parp inhibitors. My second opinion oncologist did recommend niraparib and i started this four weeks ago with a view to being on it 3 years. Bloods are taken weekly initially then four weekly and blood pressure is constant monitored as the medication can increase bp and lower blood counts. With the worry of side effects and the inconvenience of constant hospital trips for monitoring am still in two minds whether to continue with it (it'd be nice to put the cancer behind me and get back to normal!), In any event i was still offered 3 monthly ca125 checks dropping to 6 monthly etc after a period of time.
I hope my recount of my experience helps and your mum, perhaps with the help of a second opinion, can get what she needs to be reassured xx
You're a little star looking out for your Mum, but as my teal sisters will tell you its normalProcedure to wait and see. Because l feel safer to have a regular C.A 125 test my GP does one in between my appointments l always say cancer won't wait. So have a word with them . We all have to be proactive with our care . Your not a pain your Mums precious. And too be honest
If it makes your mum feel safer then its worth it
Lifes precious . And all these telephone consultations don't cut it with me. Things need to get back to normal. Everythings taking far too long have a word with her GP. Sending love ,& hugs SheilaFxxx
I must be very lucky as my oncologist is very good. I found out I had stage 3 ovarian cancer in May 2021 then a Hysterectomy in the June followed by 6 months of chemo. I had a scan three month during chemo and again when I finished. I am contacted every month and have my bloods taken to check CA125. Although the last month they said they would now check me every two months. Which is understandable as there are many women with this terrible disease that they need to concentrate on. But I did feel a bit scared going from one month to two not having my bloods done. So I went to GP and she takes my blood every other month to check the CA125 which keeps my mind at rest. So I understand your Mum feeling down about not having a scan and only being seen every three months! Tell her not to worry and there is always help available as we well know with this wonderful site. I would perhaps ask for a second opinion talk to you GP about it. Take care and well done you for looking out for your Mum. I hope these reply’s have made her feel less anxious.
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