I had surgery in July 09 and was diagnosed with Stage 1C Clear Cell Carcinoma. Just prior to surgery, my CA-125 was 42. I received my first chemo Carbo/Taxol while I was still in the hospital and have had 3 more treatments with 2 to go. Since surgery I have not had an appointment with my Dr except that he stops in during my chemo treatments to see how I'm doing. This troubles me because I have no idea what any of my numbers are and I wonder how you get your lab results. The other concern is that when the Dr visits me in the chemo room I am always so drowsy and groggy from the Benedryl in the pre-meds that I have even missed the visit because I fell asleep. My Dr also said that the CA-125 was not a good indicator for my cancer - have any of you been told that? Is it more conventional to have an appointment with your MD separate from your chemo appointment? I have so benefited from all your wisdom and would like to hear your thoughts.
Sue the Shustar
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Unusual Follow-up?
- By Sue_Shustar
- Posted October 7, 2009 at 11:47 am · 11 replies
- In What, me worry?
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- By jeaniet
- Posted October 7, 2009 at 11:59 am
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Yes, you should be seeing your doc separate from your chemo. Call the office and ask what the protocal is, and set up an appt.
You can ask for copies of your labs results.
My CA 125 is not a monitor for me either, so you need to discuss with your doc how they plan to monitor you.
Given that you were caught early, you don't need to have quite the worry that your CA 125 isn't a monitor for you, as you are more unlikely to recur, but they still need a monitoring plan.
They use another test with me---CA 27-29. It is usually used for BC, but was elevated for me during OC so they use that, plus scans to monitor me.
Jeanie
- By lifeisgrand
- Posted October 7, 2009 at 2:03 pm
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I am sure the protocol is different everywhere and the larger the facility the less likely you'll spend time with your doctor. I saw my gyn/oncologist (surgeon) half way through my chemo with a CT scan and the CA125 and again at the end of my treatments with the same tests. During the chemo, prior to every treatment I was seen by my medical oncologist who reviewed my lab work and examined me. But I was receiving the chemo at a smaller local center a few hours away from the university where I had my surgery.
Being stage I is a good thing but from my understanding having clear cell changes that. It is aggressive and can't be trusted. Also like you said the CA125 is often not a good marker for it.
If I were you, I would just call and request an appointment with the doctor to review your status. Tell them you'd like to do it when you've got a clear head and not undergoing therapy.
- By zircons
- Posted October 7, 2009 at 3:38 pm
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Ask for an appointment with the doctor. Write down all of your questions. When I have chemo, first I get my blood work done, see the doctor for a scheduled appointment so we can talk and she can examine me and then I have the chemo.
- By Patricia123
- Posted October 7, 2009 at 3:57 pm
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I see my gyn onc who did my surgery and is directing chemo once a month. About 30 to 50 percent of recurrences are felt on exam so I go like a clock.
- By Jennali
- Posted October 8, 2009 at 12:45 am
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My current schedule is Taxol once a week, a separate visit with my gyn/onc every three weeks, after one chemo to minimize my traveling. I always have a chemo nurse make me a copy of my labs, as I get a CBC every week, and a CA125 every 4 or 5. You definitely have the right to your labs.
- By FavoriteAunt
- Posted October 8, 2009 at 7:56 am
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Your doctor appointments should not be in the chemo room. I realize each place has a different protocol, but there is no way he can examine you or that you can have a meaningful conversation while hooked up to chemo.
I always see my doctor in an examining room just before I begin the chemo. He'll check me out, we discuss things, he lets me know if that day's CBC counts are good, etc. When I get a CA125 done in the chemo room, I call a few days later to speak to his Phys. Asst. and she tells me the number. Then the next time I see him we dicuss it and what it means.
Some women have been told their CA125 is not a good indicator for them, but that is besides the point. You still need to know what your level is - reliable or not - and get an idea of what's happening.
- By pegart
- Posted October 8, 2009 at 11:58 am
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I always get my lab results from the nurses at chemo. I see my Dr. once a month apart from chemo.
- By cdbart
- Posted October 8, 2009 at 2:59 pm
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C 125 are not always a good indicator of cancer. Mine was never above 18. However even it dropped with chemo to 7 and has remained there.
My doctor say me before chem every time to review the blood work. Tell him or her you are not comfortable discussing your progress and blood work when you are drowsy from medications.
- By MinnieM
- Posted October 8, 2009 at 4:15 pm
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I have to agree with the rest of the ladies. I have my bloodwork, then see my doctor who discusses the results of the bloodwork and always gives me a physcial exam. That would seem to be particularly important if you CA-125 is not a good marker for you. My doctor doesn't routinely schedule CTs, but will if my CA-125 elevates or he feels something in his manual examination.
I also was diagnosed Stage 1c clear cell. Surgery was Feb. 09. It is one of the most agressive types of ovarian cancer; so, you want to stay on top of it as much as possible.
Is your doctor a gyn/onc or just an oncologist?
Please stay in touch. We clear cell gals are fewer in number.
- By Sue_Shustar
- Posted October 9, 2009 at 11:51 am
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I want to say THANK YOU to all who have replied. I am going to make some changes starting this week. I have my 5th chemo next week and plan on getting there early to have time to see my lab reports. Thanks to you, I didn't even know the chemo lab nurses had these records. I will also ask the Doc for a separate appointment and exam since it is about 3 months since surgery. This site truly makes a difference in many lives and certainly has in mine! Blessings on you all!
- By lifeisgrand
- Posted October 9, 2009 at 1:21 pm
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Sue... this isn't related to the topic but I just wanted to say.... I LOVE YOUR PHOTO!
Never in a million years did I ever expect to be balder than my husband.... lol... now that my hair is growing he calls me a show off because his cannot. I have a new respect for bald men. Dang it can get cold without your hair :) But just wanted to say you look beautiful!
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