Rising CA125, Fear and Anxiety

[SophiaMariaA]

Like many of us, I am in a "strange" place - not quite cancer free, though no evidence of disease, but with a rising CA125 after a period of stability. (My CA125 was as low as 10 - from 2056 at diagnosis (3C) , 639 after surgery and consistent progress during chemo and the months that followed.)

A little more than a year ago, it began to rise in small increments (CA125 of 10, 12, 14, 17, 21, 28, etc.) and whilst still in the normal range, a continual increase and a concerning pattern - to me as well as to my Oncology team. In the last three months it has risen to 57 and has doubled its prior level in one leap (not a good sign). Along the way, when suspicions were high and other reasons for a rising CA125 ruled out, I had been tested for other markers (CA19-9 of 74, 2X the limit) and visible signs (CT/PET). No radiological confirmation of cancer recurrence.

Normally, this would be where one would exhale, audibly, and maybe even celebrate! Certainly one would imagine I am relieved. But like many facing the same situation, I am not relieved. My anxiety worsens.

Instead, I feel much like a porcupine who finds herself trapped in a balloon factory, afraid to move for fear of a balloon falling, landing on a quill, and loudly popping - exposing me to the cancer that lies lurking in the shadows, exposing me to the dangers of what comes next. Every new abdominal pain or back ache is a falling balloon. Every bout of exhaustion another balloon. Each new lump or bump yet another balloon and every blood test a potential “Pop!”

I would very much like to run from this balloon factory – through the doors and into the sunlight without ever looking back – but I cannot run. The best I can do is to make my way, so very slowly, three months at a time, little by little until I can once again roam free or until I am told that it is definitely back and thus treatable.

All I can do is wait and make the most of my time while trapped in the balloon factory. While I wait, I think of the others in the same situation and though I am saddened at the thought, I take some comfort in knowing I do not wait alone.

Wishing you all peace and comfort.

Sophia

[Lyndy]

You express it so well SophiaMariaAand the reality is that you can be in that limbo for many months or even years. I think this is what people on the outside struggle to understand...it never goes away, there isn’t ever a time when you say ‘that’s done then’. Thanks for sharing xx

[Mammi]

Sophia, Thankyou you put so beautifully how so many of us feel .I am only 18mths into this journey but already having completed treatment & now on 3monthly watch & wait , Most talk as though I am cancer free & I feel nobody want to hear those inner thoughts that we all have.Quite a lonely disease isn’t it & that’s why this forum is so important .Big hugs Dee X

[Tillymint61 in reply to Mammi]

I am glad to hear that you too acknowledge that you feel people think you are ok and through 'it' I thought it was just me! I'm still having 3 weekly treatment but not the big stuff like all day chemo and the debulking surgery! But people seem surprised when it comes up in conversation that I say I don't finish treatment until October!! Thank you for posting.Good luck.x

[Eriksendi]

This is so true and really resonates with me as, I’m sure, with many of us. Outwardly I get on with my life and try to enjoy whatever time I have left. It’s now 4 years since my initial diagnosis and all my family think I’m cured -, I wish. It is definitely a lonely place at times x x

[Tillymint61 in reply to Eriksendi]

It is isn't it. Maybe not so much when you hear in this group something you can relate to that someone else is experiencing the same as yourself. Xxx

[Wasginger090658]

Good morning Sophia,I was diagnosed with stage OC in October 2017 and my treatment mirrors yours. And I have exactly the same problem as you with the rising CA125 and am currently on an 18 "weekly" programme of paclataxol and it is the forth time the disease has returned. At my last video consultation with my amazing consultant the numbers had dropped from 2554 to 741 and I still hadn't reached half way with the treatment. I dont want to be complacent but can't deny that the treatment appears to be doing its job.

All of us ladies with OC know that the disease can only be managed and that is what I focus on, I wont be held to ransom by the disease, like all of us I have a life to live, I know the fear, we all do but dont give in to it, stand tall and stride forward, trust your team but stay alert.

I have no intention whatsoever of rolling over for this thing that has invaded my body and my life, I say to my family and my loved ones that when it starts running again I can still run faster, the treatment is tough but keep you eye on the PRIZE that being living your life. I don't very often comment as there are so many ladies with much more knowledge than me and I read every day the help and advice they give and I am grateful. But on the occasions when I do comment I refer to a poem called The Oak Tree, please look it up and read it, it is my "go to" when I need a little reassurance. I wish you well Sophia, stay strong, pop all of those balloons they are hindering you. God bless. Xxx

[Mammi in reply to Wasginger090658]

I have The Oak Tree in a frame beside my bed, it’s my strength booster when feeling a bit low !! Dee X

[Wasginger090658 in reply to Mammi]

Hello Mammi, so happy to hear you have the poem close to you, it certainly does help to boost my strength. X

[Tillymint61 in reply to Wasginger090658]

'My body has cancer my spirit doesn't' can't remeber where I read it but it is a mantra Iam trying to live by and it does help me on the dark days.x

[LesleyGB]

Hi - you have really hit the nail on the head! This waiting game is so difficult which our friends, family and colleagues don't usually understand, I told a friend that I find this period more difficult than when I was have chemo, and she couldn't understand it at all! I never tell my family how I feel because they wouldn't understand. I feel it is like waiting for the results for results of tests for a serious illness that never come!

Best wishes

Lesley

[Euphori]

So many people here and yourself have expressed what I can't seem to put into words. I was diagnosed 3 days before Christmas 2019 stage 3 c oc I have done 6 chemo last year from Jan and debulking in June last year. CA125 was 16 now 35. Had a CT scan Easter Sunday. Tell app with oncologist tomorrow. Thank you all for putting into words all my inner feelings ❤️

[Ceilidhmom]

Thank you for this post. It resonates with me. I’m currently in the situation where the ca125 just rose a bit. It’s excruciating trying to deal with it. I’m not a novice dealing with cancer as I had breast cancer in 1989 and breast ( different type) and ovarian in 2016. First recurrence in Nov2019. This is by far the hardest one to deal with. Your words explained it exactly. I wish all of us some peace of mind and healthy outcomes.

[SASSY196]

Sophia, your picture is a very powerful metaphor and your observations so true. Living with uncertainty is very hard. Wishing you the best, Sara xxx

[Pianoplayer731021]

Hi, just thinking of you and wishing you all the best. Sending a hug, Donna xx USA

[Cumbrianlass5]

You voice all our fears so wonderfully well. It is never out of our minds, no matter what a brave face you show to family, friends and the world in general. My C125 figures are also climbing in spite of being on niraparib and it is horribly scary. Sending all positive thoughts to you for a long, long trouble free times ahead x

[Bluebaby1]

Well said SophiaMaria! Only women going through what we are really understand the fear and knowledge that this beast never goes away and it is always with us. 🦋❣️

[Tillymint61]

What a perfect analogy. I'm with you in the balloon factory! Going with your analogy this factory has got doors that open onto 'breakout' rooms. Whilst I too can't leave the factory I know I need respite from these feelings as there is still a long way to go.Will try to take a look in behind those doors! I have wondered wether my recent spike in 125 had anything to do with inflammation from the covid jab. No science behind my thought just a thought bubble of ??? It's hard not too but try not to hang too much on the 125 readings. Look at your 4 figure number. There are other things that cause it to rise . I have had a series of water infections which when cleared showed a lowering of 125 by about 15. Was still at 75 last time. Wishing you peace and positivity. Thanks for your very eloquent post. Totally relatable x