Can't stop worrying about my mom..

[ssjmichael]

HI all, I've posted here before, but not recently. My mom (Norma) was diagnosed with Stage IV Ovarian cancer July 2015, discovered through a pleural effusion in both lungs. She went through Chemo, and then Avastin a couple months later. She was deemed NED with a CA-125 of 3 (Feb. 2016). She's had many scans since, and they've all been clear, but her numbers started creeping up slowly, and now more rapidly.

Six weeks ago it went up 97, but now I just got the call that it's now at 1,068. This is terrifying to me. I always knew that a recurrence was likely with her being Stage IV, but she's been doing so well for nearly 2 years since her chemo, that I was hoping it would be longer, as I'm sure everyone else here does as well.

One thing to note is that she does have an umbilical hernia that has been getting bigger, and she will have surgery next week to repair it. The NP, and her oncologist had attributed the rise in her CA-125 to the hernia before, but that was when it was just around 60-100. Now that it's over 1,000 I think it's very likely a recurrence.

I just got that news of that high number, so it's all still very shocking, and hard to process. My mom is strong (stronger than me for sure), and she's always positive. I just hope I can keep it together, whatever may come.

Thanks,

Michael

[Lyndy]

Hi Michael

I am so sorry to hear about your Mum and of course you are worried..it’s only natural. However the Docs tend to talk about recurrent disease as ‘ chronic ‘ ie. manageable over a period of time. So even if it is back they will have a plan to treat and get your Mum back to where she was.

In some ways this disease is harder on family members than it is for the patient because all you can do is watch and hope...so don’t bottle it up, you may need some proper support for you..however your Mum reacts. Sending hugs. L xx

[Hidden]

I havechronic disease which is managed well by my Onc and of course myself. For now try not to get too stressed. You can live with oc for quite some years. I wish your Mum good results

[lorraine71-Australia]

Hi Micheal, We all worry when our 125 goes up I was diagnosed 3 years ago and in that time have seen my 125 go down to 38 then over the different treatment jump to 1300 it now is 57, The reason I telling you this is there are options and she did well for the last 2 years so

hopefully she will again if she needs to.

I understand your worry my youngest daughter worries for both of us.

I hope all goes well and I'm sure you will be there with support if she needs you.

Take care Lorraine xx

[Suzanne333]

Hi Michael.

I’m stage 3c. I recurred eight months after first line. My CT scans always look clear. They go by my CA125 rising. I asked for a PET scan as this shows more. It showed revurrence in my lymph nodes in my abdomen and my peritoneum. I’m on second line now. Taxol and carbo again but carbo was stopped as I had an anaphylactic shock with it. I’m doing ok though. Still working and feeling very well.

This is a chronic disease like the other ladies say. My consultant already talks to me about third line treatment. I’m just hoping I get a longer remission than last time.

Hugs to your mum. Xxx

[Solange]

Hello Michael, I'm so sorry you have this worry with your Mom. I can well understanding how hearing that high number must have been so frightening for you - and your Mom. I just want to send you a big hug and wish you the strength and courage to help her through this horrible disease. I'm sure you'll cope. She's very lucky to have a caring son and she'll be feeling anxious for you. I hope her hernia op. goes well next week and that she can soon start some more treatment. I think we find it all the more shocking to have bad news about recurrence when we have been doing well for a good while.

Hope you're feeling better and less shocked now. Love to you both,

Solange xX😊 Xx

[Nicky100]

Hi Michael

I’m so sorry you are so worried about your mum. I saw my mum go through it too before I got it, so I understand the worry.

Even though it might not be for you, have you spoken to Macmillan Counsellor? They can be incredibly helpful and will give you dobronevto talk to and share your worries with, away from a family environment and they are also specialised in cancer.

I wish you all the best, Nicky

[ssjmichael]

Thank you all for the lovely replies. I've spoken with her NP again, as well as the hernia surgeon, and they decided it's best she hold off on doing the hernia surgery for a little while, because if there is a recurrence, the long healing time of the surgery may delay any chemo that may be needed, and they want her immune system to be in good shape, etc... The hernia is visible on my mom's belly, but she has no symptoms whatsoever from it as of now.

They already put in an order for a new CT scan as well, which my mom will get done on Tuesday. This is probably her 6th or so CT and/or PET scan in the last year or two. That scanxiety feeling never goes away I guess, but with the numbers being so high, I'm at least a little bit more prepared if there is bad news, compared to if her CA-125 was very low, and something showed up.

Thank you again, and I will keep people here updated. I will also take the advice given and look into finding various support outlets like a counselor. I actually suffer from social anxiety, which has gotten a bit worse in the last year, so any sort of counseling should benefit my mom, and I.