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Microscopic cancer

Carsen928's picture
Carsen928
Posts: 8
Joined: Aug 2012

I was diagnosed with stage 4 ovarian cancer in may 2012. It presented itself with several rumors in my chest cavity. They took a biopsy and the markers came back ovarian markers. Took my CA 125 and it was 3200. They did a ct scan and could not see any cancer. Had 4 rounds chemotherapy and rumors in chest cavity were gone. Went in last week for debulking surgery and the doctor said the cancer was not visible to the eye but everything came back positive for cancer. He said the scan and the eye can not detect because it is microscopic. I am reaching out to see if anyone has had the same presentation. My concern is how will I ever know if I'm in remission if the scans always come up clear. I am told the CA 125 is not an indicator. Also if you have had the microscopic cells, what line of chemotherapy did you use? Thank you for reading and appreciate any feedback.

MJensen
Posts: 93
Joined: Oct 2012

Hi,
Yes I have the same issue where the ct scan looks clean but my marker goes up. They have referred to mine as "seeding" or "frosting". When the radiologists reads the ct scan there is no measurable tumor to monitor. It makes it tough. Although the marker isn't an accurate way to measure the cancer it is all we have to go on. My CA 125 is currently over 2000. I was diagnosed in Aug 2010 and they thought I had gone into remission after 6 rounds of Taxol / Carboplatin. It only lasted a couple months before my marker started to rise. Everyone is different so you may go into remission and do very well after you finish treatment. I hope so! ! You seem strong and positive. That is half the battle! Sending positive energy to keep you healthy and strong during your treatment and going forward!!!! Michele

Carsen928's picture
Carsen928
Posts: 8
Joined: Aug 2012

I'm sorry to hear your CA went up after 6 months. I'm not sure if this is a silly question but I want to ask you because it has crossed my mind. If the cancer is microscopic and there are no tumors, what would be the harm if a person didn't undergo treatment ? I read that many people have microscopic cancer and live symptom free. I struggle with having to use a CA number that from what I have read, is not an accurate indicator of positive OVC? Your in my thought and prayers - Carsen

wooh_girl
Posts: 15
Joined: May 2012

My surgeon told me that they got all of the visible cancer, but that I do still have microscopic disease, particularly in my peritoneal fluid. My CA 125 returned to the normal range after surgery. We just do CT scans and monitor my CA 125. I figure that the microscopic cells and I can live together as long as they stay dormant and don't start causing problems. I have the same issue you mention regarding remission - sometimes it's hard to figure out the had vs. have with this.

My tumor was non-invasive, so I didn't do chemo. Do you know what type of ovarian cancer you were diagnosed with?

Carsen928's picture
Carsen928
Posts: 8
Joined: Aug 2012

The report showed stage 4c . I just had my debulking surgery and developed ascites. They drained some fluid from my ab and it came back cancer free however during surgery they removed over 70 lymph nodes and they all came back positive for cancer so I know it's in my lymph system. My CA 125 has bounced around. Started in the 3000 when first diagnosed and the lowest it has been is 650 after 4 rounds of chemotherapy. Next week I will have the results and it will be the first since having surgery and 1 round of chemotherapy.

Carsen928's picture
Carsen928
Posts: 8
Joined: Aug 2012

The report showed stage 4c . I just had my debulking surgery and developed ascites. They drained some fluid from my ab and it came back cancer free however during surgery they removed over 70 lymph nodes and they all came back positive for cancer so I know it's in my lymph system. My CA 125 has bounced around. Started in the 3000 when first diagnosed and the lowest it has been is 650 after 4 rounds of chemotherapy. Next week I will have the results and it will be the first since having surgery and 1 round of chemotherapy.

lulu1010's picture
lulu1010
Posts: 367
Joined: Feb 2011

I am so sorry you are dealing with all this. I know the frustration with the CT's. I was 14 months getting diagnosed. After diagnosis, I have had the cancer return twice and not show up on the CT. The Dr finally told me he will watch CA-125 and I have constipation issues when it comes back with lots of abdominal pain.So we are watching for symptoms and bloodwork.Wishing you the best!

jadav1956
Posts: 95
Joined: May 2011

I was diagnosed with 3c in april 11'. Had 9 rounds of carbo/taxol and taxotere when there was a shortage of taxol..I finished in Dec 11' and my onc gave me a couple of months off. Started back in March of 12' on taxotere and avastin with a ca125 of 22. Started to rise and now is at over 2700. I have a low platelet problem so tried one tx of gemzar in June which knocked my platelets very low. Started with cytoxin in Aug.12' for one month, and then moved on to etoposide for the last two months. Still taking avastin every other week, but just not strong enough. On Nov. 8 we are switching to doxil and avastin. My platelets were 48 about 10 days ago. Having reck next week on cbc and ca125. Praying something works as onc said we might have to start mega doses of steroids to help platelets recover. I have tried something called noni juice which is strong anti-oxidant. Also found something else here in Lex,ky. Tethysis this is a question for you- please check out cba pharm..they are marketing something called bright star that is supposed to help with drug resistant cancer..I think they call cbt 1 on their web site..there is a lot of technical stuff there as well. I did get a bottle and started taking 3 days before a tx, but since tx was cancelled because of platelets I stopped, and will start again next week. You are supposed to take 2 pills 3x a day for 10 days. I am willing to try other things than traditional txs. Onc said it wouldn't hurt. Also found a naturopath that prescribes Iscador injections, thanks to Shawna. I have found you must be your own advocate because drs. only know certain things and standard treatments. I pray for us all every day, and ask the good Lord to bless us with good health. Stay strong.. xoxoxo Jackie

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