Rising CA 125 negative PET scans

Hi
l'm Lucky and live in the uk. l have had Cancer 4 times
My first cancer was breast cancer with axillary node involvement. l had a radical mastectomy followed by six courses of chemo and 28 years later l'm still here.
My second cancer was Ovarian cancer stage 3C in 2002. l had the usual operation where 'everything was removed' followed by six courses of chemo and my CA 125 remained at 14 for four and a half years. lt then started to rise and reached 169 but l still had no visible evidence on Ct scans. The Oncologist treated just the marker level in the end commenced me on four courses of Carbo platin chemo as l had responded well to this the first time round. The marker dropped to 20 and remained there for 13 months and then the same pattern started again. l am now monitoring the marker by monthly bood tests and it has now risen to 97. l have had CT - PET scans and again no visible evidence of recurring disease can be seen. l have had a Laparoscopy with biopies which were also negative. So at the moment l am playing the awful waiting game. The Oncologists believes the cancer is small and is situated in between the layers of my bowel but he want s to see it on a scan before treatment this time.
He has told me when the marker reaches 160 he will treat me with chemo again but if something is seen on PET scan l will need a major bowel operaton.
l understand this but l can't get it off my mind and find it very stressful. When l read some of the letters on this site l feel very guilty as a lot of ladies have suffered so much and here's me waiting for things to happen.
Has anyone else experienced the same?

By zircons
Posted October 26, 2008 at 5:16 pm
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I am new at the this too. I had primary peritoneal cancer stage IIIC in June 2006. After surgery and carbo and taxol my CA 125 was between 16 and 22. The last visit it was 33 (which is still considered normal) and have to go for another CA125 the end of November to see what's what. It is a waiting game. We never know when something is going to happen. I feel great right now.

By verlinda
Posted October 27, 2008 at 4:14 am
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Dear Lucky,

Yes, in America, too, anything above 35 is cause for concern. I'm so sorry you're having to go through this. What a strong woman you must be!

Are you seeing a gynecological oncologist? It sounds as though your oncologist is trying to spare your body from the side effects of chemo as long as possible, but I'd be scared, too.

Have you had a colonoscopy? It wouldn't rule out cancer between the layers of your colon, but it would let you know if there's anything inside the colon.

You're in my prayers; let us know what happens.

Blessings,
Verlinda

By Hope47
Posted October 27, 2008 at 10:19 am
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I too am going through the same thing you are going through. My CA125 is 869 as of last week. I am sure it has jumped up higher since then. It was 35 in July and went to 574 on Oct 15 then to 869 on Oct 22. My cat scan shows no soft tissue mass and my chest xrays are good. They see fluid building up above my bowel. That is it and my ca125 is that high. My doctor is reviewing my cat scan with a radiologist on Tuesday to determine whats action he wants to take. It is alittle frustrating that they don't see anything. I am scared that they cannot see something on the cat scan and it is going to be overlooked. He said something is happening it is just odd with those high numbers that they don't see a mass anywhere. That is why he is taking my cat scan and reviewing it piece by piece with a radiologist. I go on Wed to see what they want to do with me. So hang in there you are not alone in this crazy battle. I should mention I was Stage IVB. I found out I had cancer 2006 and went into remission last year in Oct.

By Susan5
Posted October 27, 2008 at 10:39 am
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Hey Lucky:
I like all the rest of us hate for any of us to be recurring -this monster needs a cure!!
I was 3C Jan06; finished the IP/IV cisplatin/taxol Jun06 and have had ca125s in the 6s & 7s till May. It's rising but rising slowly; last test 2wks ago was 65....
My docs seem to want to treat it when it reaches 100 to 150 (last cat scan was Sep25th and was clear) regardless of whether the next scan shows something or not... you're so right! watching the ca125 rise is very frustrating and scary -it's been 5mos
How do they know it's between the layers of your bowl
Was there a test that showed that -or is this their educated guess?? Also, I've done some reading about the ca125 and from all I've read, it appears that 35 is the top number for 1st time diagnosis; was part of a study using young college women w/o any diagnosis; 20 seems to be the real number for those of us who have already been dx and been treated and are watching the ca125 for a relapse....
keep us intuned to how and what you're doing....
Please let me know about the bowl thing...
susan

By Luckyx4
Posted October 27, 2008 at 4:19 pm
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Hi Sue
Yes it's as you suggested it was the Oncologists educated guess. He drew his conclusion from the fact that the surgeon found my cancerous ovary was lying next to the bowel when it was removed at operation. The surgeon said it hadn't penetrated my bowel but there were a few spots on the surface so he scrapped them off!!!! What is a mystery to me though Sue, is that when l had the Laparoscopy a month ago specifically to look at that area there was nothing visable and biopsies were negative.
lt's never been suggeated that l have a Colonoscopy. ls that better than a PET scan? l was hoping a PET scan would show if l'd got cancer of the bowel as l am really scared about anything pushed up my bottom. l had a serious riding accident, years ago now, but l damaged my anal sphincter and l have only a little control in that area hence being scared of being messed about with. The other thing on the PET scan it showed l've got Diverticular in the Sigmoid colon. My research shows this can affect the marker but neither the Surgeon or the Oncologist place any significance on this.
What do you think?
Thanks
Lucky xx

By Luckyx4
Posted October 28, 2008 at 3:45 pm
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Hi Chelle
Yes l've had a combination scan which consists of a high resolution CT scan and PET scan. Both showed no evidence of recurring disease although at that time my CA 125 was 90
What problems are you having?
Lucky

By chelle64
Posted November 20, 2008 at 10:22 am
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Hi Lucky,
If I have replied to you already please forgive me. I was DX in 10-07 with 111c. I finished IP-IV chemo last Mar. I had my IP port removed and laporoscopy last April. All biopsies were negative. My ca125 at that time was 55. It went to 39,36,30,39,69 and last Monday was 142. My onc. thinks that my normal is around 50. Here is the kicker- I had a clear ct 90 days ago and a Clear pet 60 days ago. I am going for a ct again today. My onc. said he will do a pet next no matter what the results of the ct. If ct and pet are negative he said we will do laporoscopy. He did say if numbers continue to rise and all is negative, he would treat the numbers.
When is your next ca 125? Are you having any symotoms? Are your bowel movements any different? Did you say your dr would treat the numbers?
So far, it sounds like we are two of a kind.

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