My mum last saw her consultant on the 7th Feb to discuss her first scan following the end of her first line treatment.
He said the scan showed strandling and nodules but they couldn't be certain if it was just scaring from her op. Her CA125 was 50. 3 weeks ago her CA125 was 49. She went today and her CA125 has jumped to 63. She does have a pain in her groin but she did pull that a couple of weeks ago and her consultant said a rise can be caused by a number of things not just a recurrence. Her consultant has said it can fluctuate but if it continues to rise they will rescan her.
The thing is they are not seeing her again until the 30th May. My mum was starting to feel a lot better but now she's kind of resigned to the fact the cancer is back (if it ever went away) but is 9 weeks a long time for them to wait until they see her again? They have told her to just carry on with the avastin for now.
I don't know what to say to her to try and make her feel better. I know it's a case of trying to keep her mind off things but it's hard and I'm not sure what to do.
Sorry for the rant
Sarah x
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sjg81
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9 weeks seems like too long to wait, when the last scan was not really definative and her CA-125 is rising.
I would call her CNS and ask to have the scan arranged and moved up to 6 weeks, as that is the usual wait time to check in a recurrence .
I think you need to be very insistent in a gentle way, resorting to begging if need be.
I hope this is nothing, but I always err on the side of caution and never approve of waiting, lest the cancer spreads to the lymph system or inside any organs.
Thank you for replying. It is worrying. She was doing so well and looking forward to a weekend away this weekend (we are still going just under a dark cloud) she's normally so positive so it's hard to see her when she gets a knock back. I think we all had a feeling when her scan came back that and it showed the strandling and nodules that it was looking like a recurrence would happen (even if it's classed as a recurrence if it never went away).
It was her consultants registrar that she saw today and she said to come back in 6 weeks but she then went and spoke to my mums consultant and he said no 9 weeks. She will get her bloods checked again in a 3 weeks for her avastin so she is going to see what it is then and then ask for an earlier appointment because like you said 9 weeks is a long time to wait.
Hi sjg I really feel for your mum, the waiting for any sort of test or results is the pits. On the plus side your mum feels well (or was feeling well) and the CA to be honest is not terribly high - maybe try and get her to focus on that? I always say worrying won't change anything just spoils the present (so much easier said than done I know), maybe try and talk to her about that? If the consultant is sticking to 9 weeks it doesn't sound like he's that concerned? If she is having bloods in 3 weeks then depending on what the CA125 is then it might be working asking for an earlier scan at that time. Also try explaining to the onc how it is affecting your mum, some ppl can wait, others cant. My Onc believes in treating the whole person, not just the cancer. I wish your mum well xx Kathy xx
I am sorry to hear that your Mum hasn’t got the all clear just yet.
If it’s any help my end of treatment scan was not considered clear either- they saw lung nodules but that was 3 years ago now and nothing has happened since.
It seems to me that it is actually quite difficult to interpret a scan that isn’t completely clear.
That’s frustrating for us trying to live with the uncertainty.
I can offer no more really than suggesting that you both get on with life and have some fun if she feels up to it and try to take one day at a time xx
Thank you for replying, all thoughts and input are more than welcome 😊
My mum is actually feeling quite well in herself physically I just think she got knocked for 6 today.
I do tell her about all your experiences and it really does help.
I hope everything continues going well for you and we are off for a weekend away tomorrow so OC can go and do one for a while.
Thank you again Sarah x
Hi Sarah.
When I had my recurrence (after 18 months), my onc wanted to "watch & wait". He said it would make little or no difference if he began chemo now or later; he only had so many weapons in his armoury with which to fight it, so it was better to wait a while: the further away (time-wise) you get from your last chemo, the better your body can take it. I could see this logic but I thought - what if it begins to travel, it'll be harder to treat if it's in several sites. The problem was solved as my onc went away on hol & I therefore saw his partner. A trial had just become available & he asked if I was interested. I was. The cancer HAD already travelled to a breast etc. But the chemo (carbo/caelyx) knocked it off & the trial drug has kept me in remission for around 5.5 years (Avastin). As said, neither the ca125 nor the CT scan (or its technicians) are entirely reliable but the 2 together will be your best shot. I must say tho' that 30th May does seem a long wait.
Get your Mum to check that groin-pain - are there any swellings there?
Try not to panic (easy to say). I found that lying helped - put a smile on the dial & tell everyone you've fine - you can almost believe it!
Sorry there are mixed messages here but I hope you find something of help. Best wishes. Pauline.
My mum is currently having Avastin every 3 weeks (her last one being yesterday) so her bloods will be getting done again in just under 3 weeks. If it's risen again she is going to contact her Onc and ask for an earlier appointment/scan.
She did have a bit of a fall a couple of weeks ago and the groin pain seemed to have started then. When she was at her appointment yesterday she did mention it and they examined it but said it seemed ok so I'm guessing no lumps or swelling that they could tell.
The smile is currently on my dial and we are away for the weekend so making the most of it.
I'm so pleased you are doing so well, long may it continue 😊
Hi Sarah, I think that the fact that they're not going to see your mum until May means they are not unduly worried. It they thought it was something serious they would have had another scan or blood test quicker.
I was told that the CA125 varies daily and isn't always a good indication that anything is wrong.
Try to reassure her that her medic team know what they're doing as they deal with it every day. It's all knew to us but it's not to them. May's not far away now.
I think you'll find she'll be worried, if only slightly, for ever now. It's only natural.
Hi Sarah, I've just arrived home from my holiday in India and am just starting to work my way through my emails so I didn't notice that you hadn't replied.
I had a CT scan this afternoon and will post when I get the results.
My ca125 went up coming Down again on chemotherapy, but was 450. It’s hard not to focus on ca125, but this seems the normal for most of us , big hugs 😘
Thank you for replying. It has creeped up some more now (98) but there seems to be a battle going on with my Mums consultant and her gp. Her consultant is in the mindset that although it's going up, it's not doubling and my mum's thyroid levels are low (she doesn't have one) so her consultant wants her to wait because he said if she gets scanned now she will probably lose her remaining doses of Avastin but her gp is checking every time she gets her bloods took for the avastin and is contacting her consultant demanding that she gets scanned now. It's like the battle of David and Goliath (quite literally if you could see them)...sorry for rambling on 🙈
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