Yesterday, I went to see my onc. for the results of my Pet Scan. He said that he is pretty sure that the cancer is gone because my CA125 has been at 5.9 for the past two months, BUT the Pet scan showed a small tumor about 3 cm. at the top of my vagina. He's not sure how long it has been there. It might have been there since I had my debulking surgery back in Feb., which is when my cancer was discovered. I wil need to have either surgey or radiation treatment. I think I would rather have the surgery
He is referring me to an gyn/onc surgeon. I will be talking to him as soon as my insurance gives me the authorization. Has anyone else been through anything like this? What questions should I ask the surgeon? I was hoping for better news but I know I will get through this, just another obsticle to conquer.
The best of luck to everyone, I always pray that we all beat this terrible disease once and for all.
Love, Esther
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PET Scan Results
- By esther3kids
- Posted September 20, 2009 at 1:08 am · 20 replies
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20 replies
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- By Patricia123
- Posted September 20, 2009 at 5:28 am
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Have your markers, Ca 125, been good in the past. I mean were they high initially? Or have they always been low?
- By momanderson920
- Posted September 20, 2009 at 9:25 am
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I am sorry to hear of your news but pray that which ever course you take it will put you in remission for a long long time if not indefinitely.
- By GEPI
- Posted September 20, 2009 at 10:36 am
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Hello
I finished chemo with a low CA (17) and a clear CT scan but soon afterwards the CA rose to 50s and the PET scan showed recurrence. 2 months later and further CA rise to 81 and the CT now showed recurrence. In between both the doctor in Greece and second oponion (incl. surgeon) in the UK said that radiation or surgery was not recommended as it was likely that micoscopicall the cancer was elsewhere -as it turned out it was the case. It was also a difficult to operate location. So I am back on chemo. BUT each case is different.
Regards
GEPI
- By lifeisgrand
- Posted September 20, 2009 at 2:39 pm
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Hang in there Esther! Was this your first PET scan? I have only had CT scans so I don't know how they present things differently or whether they show things earlier? It is discouraging to just finish up and think everything is going just fine and then have something like this. I hate this disease. You'll be in my prayers.
- By verlinda
- Posted September 20, 2009 at 4:00 pm
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Esther,
If they can do a laparoscopy, I'm with you; I'd rather have the surgery than put my body through radiation/additional chemo.
Some oncologists, including gyn/oncs absolutely do NOT believe in additional debulking surgery. One of the ladies in a regional support group insisted on it and has lived several more years, thanks to her insistence. So, if you need a second opinion after the gyn/onc, ask for a referral to someone who believes in additional debulking. No sense in seeing someone with the same mindset.
- By Laurel-J
- Posted September 20, 2009 at 5:32 pm
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Hi Esther!
I've had several PET scans, and one showed an are that "lit up" or so they say. That meant it was an area of rapidly dividing cells......... which ended up being scar tissue. The PET/CT has been found to be better than either if they were done one at a time. Both scans are effective, but the fused scan seems to render the most reliable results. My recurrence was performed by a gyn/onc.......... umm, and that was in '03. I wanted additional debulking, then chemo. I've never had radiation. I wish you the very best in during this time of stress. I think of this as a chronic disease! I'm Stage III-C and just celebrated 10 yrs. of survival.
Laurel
- By youngmom
- Posted September 20, 2009 at 5:46 pm
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After I had my initial surgery, but right before the start of chemo, my gyn oncologisy disovered a small nodule at the top of my vagina. He didn't want to delay chemo so I began chemo, but then halfway through I had the nodulem removed using the LEEP. It was outpatient surgery and was very easy. Ask your gyn opncologist about the LEEP. I also wanted you to know that before the LEEP procedure, my ca-125 was 7. Was told that if it was isolated to the vagina, there may not be reflected in CA-125.
- By esther3kids
- Posted September 21, 2009 at 12:43 am
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Dear Patricia123,
When I was first diagnosed my CA125 was about 530, then after the surgery it dropped to about 30, (not sure exactly) then when I started my chemo treatments it dropped even lower to 25, then 17 and 15. After my 6th treatment it was at 5.9 and has been there since.
Thanks to everyone else for your help and suggestions, I always know where to go for answers.
- By esther3kids
- Posted September 21, 2009 at 12:43 am
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Dear Patricia123,
When I was first diagnosed my CA125 was about 530, then after the surgery it dropped to about 30, (not sure exactly) then when I started my chemo treatments it dropped even lower to 25, then 17 and 15. After my 6th treatment it was at 5.9 and has been there since.
Thanks to everyone else for your help and suggestions, I always know where to go for answers.
- By esther3kids
- Posted September 21, 2009 at 12:43 am
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Dear Patricia123,
When I was first diagnosed my CA125 was about 530, then after the surgery it dropped to about 30, (not sure exactly) then when I started my chemo treatments it dropped even lower to 25, then 17 and 15. After my 6th treatment it was at 5.9 and has been there since.
Thanks to everyone else for your help and suggestions, I always know where to go for answers.
- By esther3kids
- Posted September 21, 2009 at 12:59 am
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Sorry Patricia I don't know why that was posted three times. My computer went crazy!
Note to Lifeisgrand: Yes this was my first PET scan. I first had a CT scan, but my onc. wasn't sure if the CT scan was showing a tumor or scar tissue. The PET scan confirmed that it is a tumor. But at least it's small and hopefully it wil be a simple surgery.
You're in my prayers too! I always pray for everyone on this site.
- By lifeisgrand
- Posted October 8, 2009 at 12:15 pm
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Heh Esther... just wondering if you got followup on this yet. Hope you're doing well.
- By esther3kids
- Posted October 9, 2009 at 6:31 pm
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Hello lifeisgrand,
I went to see the gyn/onc and he gave me a full exam. (know what I mean?) Anyway, he said he couldn't feel the tumor. He said it is probably really small. So he wants to do another CT scan at thier facility and maybe also a biopsy. I'm waiting for my insurance to give me the o.k. to proceed. So that's what's happening right now. I'm just waiting.
Hope you're feeling good.
- By lifeisgrand
- Posted October 9, 2009 at 6:37 pm
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Oh yeah... I know what you mean. Been there, done that :). I hope it turns out to be nothing. That's what we'll hope for.
- By esther3kids
- Posted October 10, 2009 at 12:15 am
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Thanks,
This is such a scary cancer we have, like right now I don't know what to think about this little tumor I have. Is it cancer or not? I just can't wait to get this over with. I just want to know how this will be treated. I really hope I'm done with chemo, my hair is starting to come back and I'm anxious to see what it's going to be like.
What were the results of your CT scan? I wish you well.
Esther
- By lifeisgrand
- Posted October 10, 2009 at 12:39 am
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Waiting sucks. And it seems all we do is wait.
- By momanderson920
- Posted October 10, 2009 at 7:22 pm
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Is there any way it could be surgically removed instead of chemo? If it is small and at the top of the vagina it seems like they might be able to get that without doing a real invasive surgery. If it has not spread and is contained, I wonder if that is an option. I am not real clear on how accurate the PET is if an area is inflamed since my surgical incision showed up with high activity and that was from the surgery.
- By jeaniet
- Posted October 11, 2009 at 12:30 am
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momanderson----yes, the scar/incision/inflammation would light up on a PET/CT, but the lighting up isn't the part to look at of the scan. The SUV is what is important. The SUV is the uptake of the radioactive sugar, which in cancer would result in much higher numbers than just an incision or other inflammation. My Onc told me that an SUV over 5 is worrisome. Under 5 and it is some kind of inflammatory thing going on, like the big bad zit on my back. My lymph nodes were between 15-20 on the SUV.
Jeanie
- By esther3kids
- Posted October 12, 2009 at 12:19 am
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momanderson,
My doctor that's been treating me had told me that he thought that surgery would be the best way to treat it. But this new doctor that I saw is an onc/gyn and he says that he is not to sure about doing surgery until he knows for sure what it is. If it is cancerous he thinks that I may need more chemo because he seems to think that the tumor was resistant to the chemo I had before.
He wants me to do a ct scan at their facility, and go from there. If needed, I will then do a biopsy. Depending on the results.
I feel healthy and full of energy and my blood work is in normal range, still low numbers, CA125 is 5.9. I'm no doctor but it seems to me like the cancer is gone.
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