My Ovacome
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Getting Scared

6/29/18 update - my number increased to 51.2 on 6/12 and my oncologist put me on Armidex which is supposed to slow down the production of cancer cells. On 6/24 I became ill with fever, aches, cold and cough and saw the doctor again. They said it’s just a bad cold but did my blood work while I was there. My CA125 is now 100.6. This is higher then when I was first diagnosed. I am going for another PET scan on 7/12/18 and even more scared. I’m trying to convince myself that the number jumped that much because I’m sick but that doesn’t change the fact that it’s still increasing.

I was diagnosed with ovarian cancer Stage 2C in November 2016 at the age of 65. I had a complete hysterectomy and followed with Chemo for 5 months. At the time of my diagnosis my CA125 was only 94. After the surgery it was 40 and during chemo and up until November 2017 it was between 10 and 11. In November it rose to 15, then February to 21, March to 25. My oncologist wanted to keep an eye on it so on May 15th it went to 39.4. CT scans come out clear but a follow up CA125 test on May 27th had a result of 45.3. I’m really scared but trying to remain calm. Just looking for some positive thoughts. Also I should say that prior to being diagnosed I had no symptoms and felt well. I still have no symptoms and feel well.

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CA125 is not an infallible sign. It goes up and down for various reasons apparently. Have you got a MacMillan nurse you can talk to? They are often the best people to go to when you're worried.

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Thank you for your reply. I’m in the US and I’m not familiar with a “MacMillan” nurse. I’ve looked at the other things that might cause a rise in my CA125 level but none of those pertain to me.

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Sorry, didn't realise you were outside the UK. Here we get assigned a specialist cancer nurse who we can call. I hoe you find an answer, but if the scan is clear that is a very good sign.

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Thank you for your encouragement.

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You could have some inflammation in the pelvic area or dental area which is causing a slight rise. It may be some cell growth too small for the scan. I would ask if they are just comparing to previous scans or looking for new sites.

I had a very slow climb when I recurred last year, which was my second recurrence. It still fluctuates but really is not a good guide for level of change, if any.

When I recurred in 2015 my CA level doubled at each reading so showed fast growth yet nothing on the scan. I was referred for a pet ct which is more accurate.

Personally I wouldn’t start worrying just yet as it may start to fall. The oncologist may suggest some anti inflammatory meds first

LA xx

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Thank you for your response. I had both a CT scan and PET scan and neither showed anything yet but I still can’t help but feel something is going on inside. They told me not to panic but I can’t stop worrying.

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My CA125 is around 400 at the moment. I was diagnosed with 3c in August 2016, had 3 rounds of Carbo/taxol, sub optimal debulking (meaning they couldn’t remove all tumours safely so they stitched me back up and decided chemo would be my best bet). Three more rounds of Carbo/taxol then 18 doses of Avastin. My CA125 only ever went down to around 30 and in August of last year started to creep back up. However, I have three monthly scans, none of which have shown any disease progression. I see my team every four weeks when they examine me and we chat about how well I’m feeling. So far I have a little abdominal discomfort (mostly sorted out by a visit to the bathroom!) but loads of energy - I know I’m lucky, but I haven’t really changed my lifestyle. I expect to have more chemo eventually, but the longer I stay without it, the better it will work I hope.

A registrar at my last appointment told me that I may have gastritis which I know can influence a CA125 reading. In my experience a rising CA 125 reading doesn’t mean I’m recurring; I know we’re all different, but I hope my story and continuing good health will temper your anxiety. Always ask your medical team if you are worried.

Best wishes to you, Ali x

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Hearing everyone’s story always helps. Thank you for sharing and I hope you continue to feel well.

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Hi there. You have 3 things here: CA125, CT scan & PET scan. Let's take them one at a time. My onc doesn't trust CA125, says it's notoriously unreliable, also we are all different & what may apply to the majority may not apply to the minority. We learn gradually what to expect from our own CA125 & usually end up knowing more about our own than our onc. So let's conclude in your case that it may be unreliable. Next is the CT scan. In my experience these are unreliable due to being mis-read and also because I believe growing tumours can take a time until they are visible. Now PET scans as far as I know and in my own experience are the best we can get. They are in colour and therefore clearer than CT scans. If your PET scan shows clear, then I think it's a good reason to believe it.

We none of us asked for this damn disease. I've been on its treadmill for 6.5 years. I'm doing well. Diagnosed 3C, I'm in my 2nd remission & feel fit as a fiddle. Treatments have improved vastly since I began. Best wishes. Pauline.

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How wonderful for you that you’re doing well! Your response made me teary eyed. This is a very scary journey we are all in and I so appreciate your encouraging post. My oncologist said I shouldn’t get upset by these numbers but I just don’t like that it keeps going up. I have 3 grandchildren ages 3, 2 and 1 and I want to see them grow up. Wishing you many more years of wellness.

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