confused

[Beaver54]

Hi ladies

So….. I had my scan results from 23rd December yesterday . I was told by Onc nurse that the cancer was stable ( it is inoperable) My CA125 at diagnosis back in March 23 was 9000 but during chemo treatment there was a steady decline and prior to the scan it stood at 2000. I don’t understand why the scan hasn’t shown shrinkage if my CA125 has dropped considerably.

I did ask the nurse but I didn’t really get an answer other than stable is good.

can anyone shed any light, from their own experiences please.

Thank you

Bev x

[Caleda4]

Hi, Firstly I would ask why your scan results took so long to be conveyed to you. That is a long time. If your Oncologist tells you that you cancer is stable, I would say that is good news, this phrase is often used in oncology. Sometimes the CA125 cannot be a marker on its own as it is unreliable. There are three things: Scan, CA125, and how you feel in yourself, in other words if you think you might have symptoms, the latter can be difficult in itself ,because we all know that you get twinges which sometimes are nothing. My Oncologist said to me if you notice something that is unusual and you have it for at least 3 weeks then it should be looked into. I am in my ninth year now, last chemo was August 2022,and since then I have been on watch and wait, which has been great. I am due for a scan early March, but thankfully so far no symptoms.

I hope things work out for you. If you are not satisfied with what you are being told, look to go for a second opinion. Take care.x

[Beaver54 in reply to Caleda4]

Thank you for your reply caleda4. A bit of a story about the scan results delay. Basically I think I got forgotten about. It wasn’t until I asked the nurse at my last but one infusion, about my scan, that an appointment was made for me. She told me the results were back and sitting on the computer. I was expecting the call to be from my Onc, but it was the nurse. She thought it was a call to ask after my health. Anyway the first question I asked was why the delay in getting my results. She didn’t really have an answer other that the Onc had been off sick with a broken arm and had been working from home. Fortunately I wasn’t too stressed about the scan results , because my CA125 was coming down, but going forward I will be more anxious , knowing that the CA125 isn’t an indication on its own. I’ve never really had symptoms apart from the occasional twinge which i still get now, and weeing a lot, which I’m on medication for anyway. They put that down to menopause. Sorry for lengthy reply, but nothing is ever simple is it?

9 years!! That’s fantastic to hear. I hope your next scan is positive news and you continue to be cancer free. Take care x

I

[Caleda4]

Thank you. I hope in future that you get a better service. If not you can always get in touch with PALS the NHS liason service.Take care,and try to stay positive if you can.x

[Casamimosa]

Good advice from Caleda4. One thing don't ever feel you are nagging about results if your unsure about anything call. We have a text service to CNS that is really useful) things can get overlooked for whatever reason but I have found you must be pro active about your treatments etc to keep on top of your care. It's a full time job sometimes. Take care and hope you get answers and a good plan that works for you. I'm in my 4th year now and been on watch and wait after olaparib stopped working. Had chemo again beginning last year (lymph nodes) but it's back in Lymoh nodes so just had 1st of 6 more rounds different drug this time.. think I've become platinum resistant . Am positive it will keep me going for longer .😍😍

[Beaver54 in reply to Casamimosa]

Thank you Casamimosa for your reply. You are right I’m not pushy enough. I’m learning.

I do hope your new treatment works well for you. Wishing you all the very best xx

[Casamimosa]

You go girl!! I was told at the outset of this no question is a silly question and if you still don't understand the reply to ask again and again until you do and can then come to terms with what you can and need to do to overcome this as best you can. You are precious it's your life and body. Take care

[Leniko]

have you had any radiation in the area? because that can create scar tissue which will probably never go away. Anyway, that’s a big drop in your CA, which is very good news.

[Beaver54 in reply to Leniko]

Thanks for your reply Leniko. No I haven’t had radiation.

We rely so much on CA125 don’t we? X

[Leniko]

I’ve been fortunate that it’s a true indicator for me. When it goes up , I Know something is up. Last time, it was too small to see on a CT. But a PET scan showed my tumor (in psoas muscle , inoperable), had grown. Am now on immunotherapy.