Advice please

[Pitchperfec]

Hi there, my mum was diagnosed with HGSOC stage 4 in October 21. She had debulking surgery followed by 6 rounds of carbo/taxol. She recovered well and continued with Avastin infusions every 3 weeks until May this year when her CA125 started to gradually rise. Her CT scan at this time showed NED and they recommended stopping the Avastin. She has had no treatment for the last 3 months and her C125 has continued to rise to 320. After chemo it went down to 16. At diagnosis it was over 4000.

She feels really well and currently has no symptoms other than occasional constipation and is living an active life. She’s 76. Her oncologist’s advice is to watch and wait for symptoms before taking any further action and has left it for my mum to get in touch when anything changes. My question is should she be asking for another scan at this point to check there is no spread of cancer or is it best to just wait as she has been advised to? I know there is an optimum window for treatment but I’m worried we will miss it if she has no symptoms and it will be too late. She had very few symptoms on her initial diagnosis. Thank you x

[Lyndy]

Hello Pitchperfec

I once asked my oncologist when was the best time to treat recurrence and he said ‘ about 3 weeks before you get symptoms’!

It really is a difficult one. Personally I prefer to wait until the last minute, others will tell you they want chemo as soon as a recurrence is detected.

I don’t think that there’s a great deal in it in terms of outcome, unless the symptoms themselves make you ill.

Your Mum should not ignore symptoms…and be aware that GPS are not always good at spotting a general ailment from a cancer symptom.

There’s a lot to be said for a normal active life…I would be tempted to leave her to it xx

[Pitchperfec in reply to Lyndy]

Thank you Lyndy, I really appreciate you taking the time to reply and it’s reassuring to hear that not rushing into treatment doesn’t really change the outcome xx

[Lizzieanne]

I am 78 and on watch and wait for past 18 months. The OC is a recurrence in my lymph nodes. I have a PET scan and blood test every three months. My cancer has always been active but slow progress. I could have chemo if I wanted but want to hold off as long as poss and my oncologist is happy with this. She says if I'm worried at all to get in touch and she will see me. I would ask if your mum could have regular scans.

[Pitchperfec in reply to Lizzieanne]

Thank you Lizzieanne, it sounds like mum’s oncologist has given the same advice as you which is really reassuring xx

[Wirralian in reply to Lizzieanne]

hi Lizzieann, are you in the UK?

[Lizzieanne in reply to Wirralian]

Yes I am

[Irisisme]

Hi Pitchperfec,

Everyone is different but if I were in your Mum’s slippers I’d be expecting another CT scan (with contrast). Only then can she, you, and her oncologist, be certain (symptoms aren’t a good guide).

Iris 🤗

[Summergold2]

see if you can get a pet scan shows way more than ct. I was diagnosed ned with ct scan and felt unwell “knew something was going on along with ca125 increase of only 20”. Pet scan showed it was back. It may be nothing but this disease is quite elusive. Hope it is nothing but deserves more investigation. Good luck

[NewtonEmma1900]

I would push fir a PET scan!

When my ca125 rose after 1st line and debulking surgery my oncologist sent me for a PET scan which showed disease spread, which had not shown on a ct.

[Pitchperfec in reply to NewtonEmma1900]

Hi, thanks for taking the time to reply, I did ask if her next scan would be PET or CT and her oncologist said CT scan. Am I able to insist on a PET scan if being treated by NHS?

Did you have symptoms or just raised CA125 and did they start treatment immediately or wait for symptoms to appear?

My mum is currently feeling very well with no symptoms other than a rising CA125, her oncologist said they aim to leave the time between treatment for as long as possible if there are no symptoms in order to maintain the best quality of life for my mum. We know the disease is active due to the rising CA125 and chemo is the next step but finding the optimum time to start treatment seems to vary depending on who you see. I think we request a scan for now and see what that shows in comparison to her last one 3 months ago and go from there. My mums way of coping with this is to just get on with it and live each day as it comes, she’s been amazing throughout but tends to bury her head in the sand and is not one for advocating for herself. This forum has been a god send for me, I’ve learnt so much and appreciate everyone’s comments and advice xx

[NewtonEmma1900 in reply to Pitchperfec]

I did not have new symptoms but my ca 125 fell to 128 during carbo/ taxol/avastin and then post surgery despite the last 2 doses of chemo rose to 424. The on Avastin alone cycle 3 it rose to 778. I did not have any recurring symptoms but my consultant ordered the PET scan anyway, then as said before I went onto carbo/ caelyx as soon as they could organise it. At 71 I feel very lucky to be fit enough now to get on with life but it’s inevitable that we worry about are nervous of any sign of recurrence. My son and daughter are amazingly supportive. Clearly you are too 🙏 Katy

[Pitchperfec in reply to NewtonEmma1900]

Thank you Katy all the best for feeling fit and well for as long as possible ❤️

[Weaves]

It seems that Oncologists vary with how they monitor & treat following NED. Mine says not to test bloods or have scans unless I have symptoms. For me I’ve decided I’m not happy with this approach & plan to discuss this at my next appointment (I am 4b HGS, my last blood test was Oct 22).

I feel the statement ‘doesn’t change outcomes’ is a bit too generalised imo, as within studies there will usually be a few, where the outcomes are likely to have changed by an intervention, whether it be further surgery or treatment sooner.

For me I want to know where I’m at. I want to know if I’m in reasonable health for booking holidays & making other plans.

I know we all differ, I guess it’s being led by your Mothers wishes that’s important x

[Leniko]

Please push for a PET. My CT showed no tumor growth. The subsequent PET showed growth that I am now treating w radiation.