Advice Please - UPDATE

[N-A-58]

Hi ladies.

I posted a week or so ago about my mum being offered a scan and whether she should take it.

Well she did and we got the results today.

Her ca125 has risen from 19 in March to 27 today. She did have her final Covid jab on the 28th April but the oncologist dismissed it having anything to do with it going up.

The scan also revealed some concerning areas.....

I will try and attach the scan if I can;

The onc said it basically is coming back and to be prepared for more chemo.

I just keep crying. I can’t believe this is happening all over again. I know the chances of it coming back are high and having had nearly 2 years out from chemo is good. I just hoped my mum wouldn’t be a statistic.

My mum feels well in herself which is great and I’m hoping for a miracle that the bits on the scan are small infection sites and the bloods come back down in time.

I wanted to post and let you know the outcome as I know a few other ladies are having small rises in their bloods and want to know the outcome.

[Cumbrianlass5]

The covid jab sent my CA125 up too. Many other ladies on this site also said this. Try to be positive and do not let your mother see you are upset. Your job is to keep her cheerful and looking forwards. Don't let your upset and stress put her into a downwards spiral.Your mum's level of 27 is still well within the normal range. If another bout of chemo keeps her well and happy for another two years, or hopefully many years more, then it is wonderful. Your mum is not a statistic, she is your mum. Cherish every day you have with her and enjoy your time together. Best wishes x

[N-A-58 in reply to Cumbrianlass5]

Thanks for your message. I am curious, what happened to your numbers please? Did it drop back down?

I cry when I’m alone, my mum is a very strong person and I am to the world, but I breakdown in my own home/car.

It’s a good way to look at it, thank you. We hope for another long remission.

I hope you are well xx

[Cumbrianlass5 in reply to N-A-58]

I don't know whether they will fall or not. Only have bloods done monthly. They have risen twice. Had my second jab last Wednesday and have next bloods a week tomorrow. Hoping to heck they have not gone up further. My next scan is not until the end of June. It feels a long time to be in limbo.Ah, I understand you crying when you are alone, in the car etc. We all have to release our sadness and anger at this b.....d disease. It is cruel. But here is hoping and praying for a long remission for your dear mum. Best wishes x

[N-A-58 in reply to Cumbrianlass5]

It really does feel like loving in limbo.

I hope everything with the scan is ok next month. Take care x

[Cumbrianlass5 in reply to N-A-58]

Thank you. All best wishes x

[Eriksendi]

My ca 125 shot up from 11 to 29 due to inflammation but then dropped back down. I’m not medically trained but I can’t see any particularly worrying comments on the scan result. Stay strong all may be well x.

[N-A-58 in reply to Eriksendi]

Thank you. I really hope it’s nothing. I hope you continue to stay well. You’re doing amazingly!! Your message has lifted me a little. So thank you so much xx

[Eriksendi]

I hope all is well. Please keep us updated ❤️❤️

[Realistic]

My CA115 went up after my first injection that was Feb had more blood tests in April and it hadgone down again. I haven't had another blood test after my second jab but no doubt it went up again but 27 is still well within normal. Try not to worry your doing a fantastic job of supporting your Mum. She seems to do doing well , she will worry about your anxiety and that

In itself can make you both ill. Be positive and keep doing what doing your incredible

Sending love & hugs from a very wet Saddleworth SheilaFxxx

[N-A-58 in reply to Realistic]

Thank you Sheila for your message.

I hope it’s something like the jab.

Take care xx

[RoseMS]

Hi, I’m unclear about what part of the scan relates to the Onc saying the OC is returning, perhaps its summarised in the comment area which isn't shown. Please try not to worry, mum seems to be in good hands. Is your mum on a PARP or any maintenance at present? I had ‘stranding’ on one scan, it wasnt mentioned on the next, sometimes Ive been told it depends on the interpreter of the scan too.

[N-A-58 in reply to RoseMS]

Hi, she referred to the nodule so think that part. Plus the bloods increased by 8points. They have done this over the last year, 15,18,17,18,16,18,17,19,27 so an upward trend. I think that all together makes them believe it’s coming back.

No, just did front line chemo. Parps weren’t offered them. She is brca negative though but I think she would get offered one next time if chemo works.

Thank you for your message. Take xx

[N-A-58 in reply to N-A-58]

I couldn’t get the second page to load up, it only allowed one at a time but I’ll try and summarise the next page;

Subtle somewhat non specific changes in the areas mentioned.

Keep under review or offer an mri scan.

[Jacky5]

Did the Dr say he thought it was coming back after seeing the result of the scan or before?

I thought the same as Eriksandi about the scan report.

Wishing you and mum all the best...its really hard to stay strong I know. You will be a great comfort to her .

Liz. X

[N-A-58 in reply to Jacky5]

She didn’t even realise the scan had been done. She looked at the scan and the bloods and said you’ve had 2 years clear, it’s coming back, be prepared for more chemo.

Having read all these messages, I think the bloods need to be repeated again in a month or so and then go from there.

Thanks liz for your message. Take care xx

[Sashay2020]

Like your mother, I have a loving daughter. I do hope you are taking time to have fun with your friends (as much as Covid will allow). I worry about my daughter who I know is feeling anxious, although she hides it fairly well. She stayed with me for six months following my debulking surgery and during chemo. But now she is off to visit a friend in another state for a month. I am so relieved because I wanted her to go off and have fun and hopefully not think about me too much. My daughter also went camping for a long weekend with friends (she’s vaccinated). I do hope you will find ways to take a break from the worry and enjoy life. Im very glad my daughter has found ways to take a break. I expect your dear mother wants the same for you. Best wishes from Louisiana,

Sashay

[N-A-58 in reply to Sashay2020]

Thank you sashay for your message. Covid has played a huge part in our life’s the last year but I have my daughter, she is 2.5, and the sunshine in our lives.

I don’t let my mum see how I’m really feeling, I think it might scare her. We are under no illusion about cancer but sometimes knowing less is better for the mind. Take care xx

[SASSY196]

I echo Sashay. I really want my daughter and rest of immediate family to try to carry on with their lives, to have fun and keep moving forward. Having oc is like living in limbo but it is our lives so we need to try and enjoy it. I also really want my children and husband to share their feelings with me, I don't want them to protect me from these feeling because I want to support them and be there for them as long as I can, as I always have.You know your mum and situation best so it may not be right for you but I guess what I am saying is don't be frightened to tell your mum how you feel and how worried and frightened you are. She may want to comfort you as much as you want to comfort her and do try to have fun and live fully as I am sure it is what she wants for you . Sara

[N-A-58 in reply to SASSY196]

Thank you for your message.

We are trying to have that motto for life. No one knows how long they have left, so trying to live in the moment. Take care xx

[thejoannabell]

I am by no means a radiologist, but I am a nurse, and there’s nothing on the part of the report that I can see that seems concerning. CA-125 numbers fluctuate for many reasons and are only one indicator.

When I finished my first 6 rounds and debulking, my doctors in Atlanta said my ct showed there was residual disease and I needed 3 more rounds of chemo. I was also being followed at MDACC, and when their radiologist reviewed it, he found NED. They had a second radiologist confirm NED. So maybe you could look into a second opinion?

I know it’s so hard to stay positive when you are waiting for news; I wish you peace and strength!

[N-A-58 in reply to thejoannabell]

Thank you for your message. It was my brother with my mum yesterday and basically she said once she saw the scan and that the bloods have increased, it’s coming back, you’ve had 2 years clear, get ready for more chemo.

I wish you peace abs strength too! Take care xx

[delia2]

Hi. I don’t see anything in the scan report that looks like a recurrence. The possible chest infection could cause the rise in ca 125. It’s odd that she might have a chest infection yet feels fine. I wouldn’t panic at this point. I had one recurrence; the chemo wasn’t that bad and I’ve been on Olaparib since for just over a year. Hang in there. Xx

[N-A-58 in reply to delia2]

Thank you for your message. It’s encouraging that a few ladies have said something similar. It wasn’t my mums ‘normal’ onc. She was matter of fact but not horrible. I think we need to repeat the bloods in a month to see if the rise was because of the Covid jab, chest infection or ear infection my mum had.

Glad to hear you’re going well on the olapraib. Take care xx

[stparker54]

From a cancer standpoint, I don't think the report is all that bad. However, while it says the inflammation in your mother's does not appear to be Covid, it cannot be excluded as a possibility. Has your mother been tested for Covid?

[N-A-58 in reply to stparker54]

She hasn’t no. I know one in three don’t have symptoms but I would be so surprised. Do you think we should do a test? We have some at home so I think it might be worth it.

[stparker54 in reply to N-A-58]

Yes, test your mother for Covid.

[Irisisme]

Hi N-A-58,

The CA125 is merely an indicator and is not an accurate test for OC. The scan report really doesn’t seem bad. It would be a good idea if you can get your Mums oncologist to explain the significance more fully. Meanwhile, try not to think of the worst-case scenario as often it isn’t as bad as you expect.

I wish you both the very best of luck - and send hugs,

Iris 🍀🤗🍀🤗

[N-A-58 in reply to Irisisme]

Thank you Iris for your message. I don’t think we can get hold of an onc now until we have an agreed appointment but I will ring the CNS nurse and ask her to explain. Take care xx

[Tillymint61]

So sorry to hear your worries and concerns for your Mum. I don't know if it helps to re read the results you have attached and pick out what it says 'wasn't found and think about them alongside your Mum's general health and well being. We all desperately don't want to hear there are any negative changes but I have had to take the positives from very similar letter of feedback from my last ct scan. On first hearing I couldn't make any sense of it and was distraught however after going back over the detail I was able to pick out a lot of positives which I also see in relation to your Mum. No signs of anything in the major organs. No ascites. No sign of metastatic disease.(spread) It sounds like your Mum has had 1st line treatment which is also a positive as it means there are further options still available.They will keep a closer eye on everything now I would imagine and nothing will be as full onwith future chemo as what she went through initially post diagnosis. Stay strong but this forum is a great place to off load as you have. My oncologist told me at the start of all this statistics mean nothing as we are individuals with unique responses to treatments etc I take that as the best reassurance I can have. Sendingyou a big hug.xx

[N-A-58 in reply to Tillymint61]

Thank you for your message. You are so right and I should be looking at the positives. What a wonderful attitude you have in regards to look at things. Xx

[Tillymint61 in reply to N-A-58]

It takes practice and sometimes a fresh pair of eyes and ears to help along the way.x

[N-A-58]

I just want to thank all you ladies for your advice, encourage and relies. This forum is so invaluable in the horrible ovarian cancer world we find ourselves in. It really means a lot to me that you not only took the time to read but to reply too! Thank you again. I will update when we know. Stay safe and take care xx