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For Claudia and Patricia - notes from my last checkup

daisy366's picture
Posts: 1493
Joined: Mar 2009

Claudia, I didn't get alot of info. Doc in a hurry!! But he is very "science-based". He would not order any treatment unless indicated. He did say there are "lots of treatment options" if recurrence. Small consolation.

Patricia. I didn't ask the lymph node question. Sorry.

I did learn that the CA125 is NOT a reliable marker (at least for me) if it is LOW. But it can be if it is high. I guess the logic is - high says problems. Low means essentially nothing since there could be problems and it's not showing up. Great - so I can no longer really be happy with my low ca125 numbers - it was 11 - up from 10. And since my doc doesn't believe in the routine CTs because of radiation, he is relying on my self-report as his best indicator of recurrence. Reading Fran's advice for us to get scans at least every 6 months - this is scary for me. I will probably ask for a scan next visit - 4 months away.

Again, my crapshoot theory seems to be holding up!! Mary Ann

Songflower's picture
Posts: 631
Joined: Apr 2009

I too am confused about how many followup scans to have. In my mind it seems more logical to have scans and catch recurrance early. But my ObGyn told me the same thing.

She also told me CA 125 increase means it has spread in the peritoneum. So one could have metastasis to other organ parts and still have normal CA 125 in our cancer.

We don't have it easy, do we? I never had followup scans with breast cancer but with UPSC one feels that it might be a good idea in my mind. I think it would be easier for Gyn Onc's to understand this if they had this type of cancer themselve. It is scary. Any Gyn Onc's out there, we would love to hear from you!

I think you can get four scans in your lifetime without worrying about radiation exposure. You don't have to worry with about that with MRI. Talking about all this; I think today I feel like I need a vacation!


lindaprocopio's picture
Posts: 2022
Joined: Oct 2008

I'm curious what the full follow-up will be as this is my first 'routive' 3-month check-up. I had CT-scans every 3 months during my treatment (CT-scans: Nov 08; Feb 09; May 09), and had one in August as a part of my 'post-radiation/treatment' follow-up visits. (I had my last brachy July 1.) For my August 'post-treatment' check-up, they did a CT-scan, a pelvic exam, and took labs that included CA-125 (although they discounted the small rise in my CA-125 as being inflamation from the recent radiation).

So far, scheduled for this first 'routine' 3-month check-up, I have an appointment for labs (including CA-125) Tuesday to be followed by an appointment with my chemo-onc to discuss any symptoms, etc. and any further diagnostic testing. They have also already set an appointment for me December 12th with my radiation oncologist, and he always does internal exams when I see him. I'll let you know if they set me up for another CT-scan andd what they have to say about the 'symptoms' that I have (??). I'm not even sure what to LOOK for, in symptoms! But I did have my pelvis swell up a little after the 11-hour plane ride to Greece and it feels like the scar tissue is thicker now in that area, and my bowels have been watery (sorry. Gross.) for the last couple of weeks, so I will report those 'symptoms' and hope that they are nothing.

(sigh.) UPSC had no real symptoms of any kind for me before it was discovered last year. I sure don't want to only have CT-scans or diagnostic imaging when I have reportable symptoms! I don't even know what 'symtoms' to look for!

daisy366's picture
Posts: 1493
Joined: Mar 2009


What my doc told me - look for any CHANGES that last one week or more in pain, duration, or frequency. So I have not have anything last that long. When I've gotten a twinge or something - I make a mental note and watch it. But more scientific would be to have a "body drawing" (for want of a better term) and mark anything on it and keep this as a log.

Since you have more than one doc, you can compare notes with them - what happens if they differ in recommendations? do they coordinate with each other? Mine is a one person show - he was my chemo/surgery/gyn-onc. I did not have radiation so no rad/doc. Mine did not recommend radiation which I remember you said your new doc told you. This gave me some more consolation that I was not undertreated.

Is this a crapshoot, ladies? I like what Diane said, maybe if the docs had UPSC there would be more research. Where are the female gyn-oncs? My docs practice just added a new male doc. We need to recruit female docs while they are in med school ore better yet - before, I guess. Maybe your granddaughters can think of this as a career.

I hope you get great news at your check ups. Mary Ann

Posts: 109
Joined: Aug 2009


You are in my prays.

Thanks KUmar

Posts: 109
Joined: Aug 2009

you are in my prays

california_artist's picture
Posts: 865
Joined: Jan 2009

Thanks for asking. Thought we might be able to get some up and coming information a new therapy to research. It's always better to have an idea of what help there is out there so we can think when we're not crazy with worry.

Thanks again,


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