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second post treatment Dr. Visit Confused???

kanary01's picture
kanary01
Posts: 21
Joined: Jun 2009

Had my 2nd post treatment Dr. Visit. After reading on this forum about Dr. doing scans at 6 mos etc. I am wondering if that is the norm or not. He does a pap and goes by the C-125. I asked him if the C-125 was a good marker for me since it was never taken before surgery. The first I ever had was after the first Chemo and it was 6 since then it is always 4 or 5. I had an MRI after surgery last May and that was it. I was diagnosed after surgery with 3A stage 2 Endo cancer becasue the cancer was not expected and the intial path report showed no cancer no nodes were taken. So I was treated as if I were 3C. I had 6 cycles of Chemo, 28 pelvic rads, 26 abdomen rads and 6 internal rads..Now that I am 6 mos out of treatment I thought the Dr would be able to tell me something like when do they know if the treatment helped at all? All he tells me is I will see him every 3 mos for 2 years and he will do a pap. He would only do a scan if I have problems or my C-125 goes up??? Every problem I have is always atributed to radiation or Chemo so how do I know what is or isn't normal??

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

hi kanary,

from what i can gather, most doctors don't do routine ct/pet scans unless your ca 125 spikes, then they look at trends, and/or if you have an abnormal pap, or you complain of symptoms. if i were you, i'd let people know on this forum what symptoms specifically you are having, so those of us who have had chemo and/or radiation can let you know if we've experienced these symptoms as well. i am guessing that if your doctor is not having you do any more tests, etc., that everything is looking ok, and that you're doing fine. most doctors won't tell you if your treatment "worked" or not, because of the precarious nature of cancer. all they'll say is how you're doing right now. if you would feel better, why not get a second opinion?? you have a right to feel satisfied with the responses of your doctor, who does not sound very communicative, even if they're not definitive answers.

do try this forum though. my guess is that many of us have experienced similar symptoms as you are having, and they may well be from the chemo and radiation, since your ca 125 is so low, and your paps apparently normal.

sisterhood,
maggie

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

my doc told me that I would be the best indicator of my health - and he was right, in fact!!

He said to call him if there was any change in intensity, frequency, or duration that lasted more than one week.

I found a lump in my neck in March which turned out to be a recurrence in a lymph node. CA125 also elevated some too. At first doc discounted it but ordered biopsy/removal and path showed positive for my uterine cancer.

So, take note of CHANGES. It is very hard not to think everything is cancer. Still dealing with that anxiety myself,

Hang in there. Enjoy life in the meantime. Blessings, Mary Ann

jazzy1's picture
jazzy1
Posts: 1385
Joined: Mar 2010

I completed treatments last July and oncol told me he'd be doing following ups every 3 months for 2 years. He was to do cat-scans every three months, but since all the news about the high level of radiation from cat scans, we'll do them every 6 months. Now if my CA125 goes up on the appt that I don't have the scan, then he'll do the scan. Mine also does the physical part at exam.

Doc told me since before treatment started to today, he can follow my CA 125 as a great marker. Some people it doesn't work!! I don't know if my doc is right with his way of monitoring me or your doc, just different ways.

I'm uterine 3C and had 25 lymph nodes removed and found cancer in 1 pelvic node only.

I'm a proponent of listening to signals from my body. We know our bodies better than anyone. In my case I had a little spotting from vaginal area on and off for 6 months. I just figured it was perimenopause and slugged it off. But...deep down inside me I had a feeling something wasn't right. Well I should have followed the initial gut and gone to my OB, but figured I would wait until my yearly appt in December. Wonder if I had gone at first what the outcome could have been? Possibly cancer didn't move to lymph node as just confined to 2 small tumors in my uterus and then wouldn't have needed chemo/radiation.

You've gotten some good advice from a few of us....

Best to you,
Jan

cathyK's picture
cathyK
Posts: 93
Joined: Jul 2009

I like you did not have a CA 125 before surgery, my former doctor said it is not a good marker of ANY gyn cancers,
my new doctor said that is not true, and she was sad to see that he does this regularly , so now she is saying it may or may not be a good marker, my CA 125 has been 10 to 20 post chemo, and I also will be getting pap every 3 months for 1 year then every 4 months for another year, and so on to 5 years.
cathy

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