I recently dignossed with stage 1c3 ovarian cancer, doctor said it's not spread much, what they found out that, the cancer tumor was in left ovary, and some cancer cell found in peritoneal fluid. I had done with my first chemo with carboplatin and taxol.
My CA125 was 353 prior to hysterectomy and post it reduced to 18.6.
Now I will have my second chemo soon.
I need to know if I can be cured, also doctor has not recommended to be CA125 test prior to 2nd chemo, is it normal? If yes then when should he we monitor if chemo is responding to the treatment?
Thanks.
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Abhinavranvakas
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Hello sorry you find yourself on herewith the rest of us. But it’s not all doom and gloom! I was diagnosed stage 1c2 in June 2016. I had full hysterectomy and six rounds of carboplatin only. I didn’t have repeat blood tests between for Ca125. In my case my Ca at diagnosis was 13! It is now 8. It’s not 100% reliable so try not to worry about that too much. I now have 6 monthly check ups and have remained well. Just really look after yourself, try to eat well, drink lots of water and rest. Let us know how you get on, good luck.
Yes, I had stage 3c clear cell diagnosis April 2014, 5 yrs later no reoccurring disease. CA 125 a 4-7 range. You can get there too. Stay positive.❤❤Liz
My doctors have said they don't like doing the blood tests because it causes stress to the patient. They prefer to assume all is well unless I have symptoms. I disagree with this approach - for me personally I need to know what's happening and the blood test is all I have to judge on. I know it's not always accurate and I understand their reasons, but I'm afraid I have insisted I have the blood test every 3 months. As you say - how else do you know what's working. I think it's arrogant of the medics to presume we don't have plans to make or alternatives to try. I told them I either get the blood test from them or I'll pay for it myself. So far they've agreed I can have it. You are at a good stage to hope for a cure - but it you want more monitoring or you want more information off the doctors, don't be afraid to ask for it xx
Hi, welcome to our lovely gang, I’m sorry you’ve had to join us but you’ll find such wonderful support here and we all know exactly how you feel.
I was diagnosed 1c3 clear cell in 2014, I too had a radical surgery which was followed by carboplatin/ taxol chemo. My CA125 was checked regularly but I was part of a drugs trial so it’s a different protocol. Your CA125 reading post op is brilliant and well within the ‘normal’ range. I am in the U.K. and I think you’re in the USA? Do correct me if I’m wrong. Regimes do differ from country to country, in fact they differ from county to county here and I’m sure they do from state to state there? If you’re at all worried ask your oncologist for some clarification.
I think of myself as ‘ probably cured’ or as cured as is possible as clear cell cancer can be a little blighter and raise its ugly head at any time, but we tend to call it NED (no evidence of disease) rather than cured.
I hope the rest of your treatment goes well, is successful and that your side effects are minimal and that you are as well as you possibly can be. Take care ❤️Xx Jane
I apologize in advance for possibly offending forum members. I've battled this disease long enough to have acquired a profound sense of urgency and am no longer able to be diplomatic.
Abhina and Lynn6156, YES! absolutely advocate for yourself because NO ONE ELSE WILL, including doctors. At diagnosis with stage 3C HGE my CA 125 was nearly 800. After front line primary chemo of carbo/taxol and before surgery CA 125 dropped to 98. After surgery it was 99, After IP of carbo/cisplatin followed by 18 weeks of carbo/taxol it was about 9 and I was NED/in remission for about 20 months, getting CA 125 done every three months. First reoccurence my CA 125 jumped from 9 to 54 in five months (I skipped a 3 mo blood check) with no symptoms. Immediately started second line treatment of carbo/caelyx and NED for about 9 months. Second recurrence CA went from 9 to 48 in three months and three weeks later was 448 with no symptoms. Had a CT/PT scan and sure enough more tumors were clearly visible. The point I'm making is that "watch and wait" ought be called "watch and metastasize further, making it harder to kill" or "Watch me die as my options become fewer." My doctor has not recommended waiting because the cancer will keep growing exponentially and getting deeper into my body. I'm working hard to keep it from spreading to my lungs.
Another thought: not treating in a timely fashion could possibly hasten patient demise. That patient then no longer costs insurance companies money. So, if I die, I'm saving the insurance company money. There's no incentive for health insurance companies to keep treating late stage ovarian cancer patients. That is what health care rationing is all about. Again, I apologize for offending anyone with my bluntness. I send my deepest respect and love to every single one of you (us).
Your post here is absolutely spot-on regarding after care and remission. I asked my doctor how I would know if the cancer comes back. The answer was, you will let us know when. What?!?!?!? In my case, they stopped doing CAT scans when I was 4 1/2 years with NED and let me go nine months without any bloodwork or exam. (My guess: insurance companies are dictating the protocol for treatment.) Of course, that is when two new peritoneal nodules decided to appear. I am so furious to say the least. Here I am going through all of this again.
Imdunn, my heart aches for you. A dead patient costs less than treating a patient. "Watch and wait" = "without intervention you'll surely cost less to treat and die faster".🤯😥
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