CA 125 continues to rise

Ro10
Ro10 Member Posts: 1,561 Member
I had my lab drawn on Monday. My CA 125 was 77.7. The doctor had told me previously if it was 80 - 100 he would want a repeat CAT scan. He will only begin treatment again if the CAT scan shows something, and they have been negative so far. So the good news is that I don't have to have a CAT scan yet. He had also told me that some people level off between 100 - 200. I hope I am leveling off. It has only been a 22 point increase in 6 weeks. I still have no symptoms of anything, so that is also good. I am waiting for the doctor's office to call me with a plan, but I am hoping to have another lab drawn in 6 weeks. The doctor's wife just had a baby on Monday, so I am not sure when he will be back in the office.

Wishing everyone a Happy and Healthy New Year. I plan on continuing to enjoy each day. In peace and caring.
«13

Comments

  • daisy366
    daisy366 Member Posts: 1,458 Member
    Ro,
    I'm sorry to hear that your numbers are rising. But of course glad you have no symptoms. This CA 125 marker really has me stumped. It's not really reliable when low and not always reliable for all with uterine cancer - so why are the docs using this??? I wish they would come up with another marker.

    I am due for blood work next week and I am requesting the HR6 and HE4 tests plus CR-P in addition to my CA125. I haven't heard back from my nurse. I'm probably upsetting the perverbial apple cart.

    Anyway, back to you. I hope this means nothing, but glad he has a game plan to deal with any more increases. Enjoy your New Year - may it be a turning point toward HEALTH IN 2010 for us all.

    Blessings, Mary Ann
  • lindaprocopio
    lindaprocopio Member Posts: 1,980 Member
    daisy366 said:

    Ro,
    I'm sorry to hear that your numbers are rising. But of course glad you have no symptoms. This CA 125 marker really has me stumped. It's not really reliable when low and not always reliable for all with uterine cancer - so why are the docs using this??? I wish they would come up with another marker.

    I am due for blood work next week and I am requesting the HR6 and HE4 tests plus CR-P in addition to my CA125. I haven't heard back from my nurse. I'm probably upsetting the perverbial apple cart.

    Anyway, back to you. I hope this means nothing, but glad he has a game plan to deal with any more increases. Enjoy your New Year - may it be a turning point toward HEALTH IN 2010 for us all.

    Blessings, Mary Ann

    That's not a SHARP rise, Ro. Try not to worry.
    My CA-125 spiked up from 11 to 155 in a 3 month period. That's the kind of jump that is worrisome. Try not to worry about this gradual rise. ((((Ro)))))
  • DaughterNo1
    DaughterNo1 Member Posts: 14
    daisy366 said:

    Ro,
    I'm sorry to hear that your numbers are rising. But of course glad you have no symptoms. This CA 125 marker really has me stumped. It's not really reliable when low and not always reliable for all with uterine cancer - so why are the docs using this??? I wish they would come up with another marker.

    I am due for blood work next week and I am requesting the HR6 and HE4 tests plus CR-P in addition to my CA125. I haven't heard back from my nurse. I'm probably upsetting the perverbial apple cart.

    Anyway, back to you. I hope this means nothing, but glad he has a game plan to deal with any more increases. Enjoy your New Year - may it be a turning point toward HEALTH IN 2010 for us all.

    Blessings, Mary Ann

    Question about PET scan various things that "light up"
    Last April, I posted my mother's experience on the other UPSC message board (she was diagnosed in 2008, had hysterechtomy, liver tumor and gallbladder removed, PET scan clear in April 2009, had quadruple heart bypass in May, now recovering very well.) My 77 year old mother is an amazing survivor! She had a follow up PET scan last week and everything was clear except a small area where the gall bladder had been. A part was "lit up" so they did a a blood test; Mom's CA125 is 22. Her doctor seemed pleased and said the part that lit up was probably fluid (she had fluid before in other areas) She will have another PET scan in 3 months.

    Has anyone ever had a similar experience? Just because a PET scan "lights up", can it be from other reasons, not just cancer cell activity? Does the low CA125 confirm this?

    I've read about this on-line but it sure makes a difference when I hear comments by people who have had similar experiences.

    Although my mother is the one who has cancer, I get so much strength and inspiration from reading the posts by all these courageous women. And, this helps me to be strong for Mom. Thank you to everyone!
  • daisy366
    daisy366 Member Posts: 1,458 Member

    Question about PET scan various things that "light up"
    Last April, I posted my mother's experience on the other UPSC message board (she was diagnosed in 2008, had hysterechtomy, liver tumor and gallbladder removed, PET scan clear in April 2009, had quadruple heart bypass in May, now recovering very well.) My 77 year old mother is an amazing survivor! She had a follow up PET scan last week and everything was clear except a small area where the gall bladder had been. A part was "lit up" so they did a a blood test; Mom's CA125 is 22. Her doctor seemed pleased and said the part that lit up was probably fluid (she had fluid before in other areas) She will have another PET scan in 3 months.

    Has anyone ever had a similar experience? Just because a PET scan "lights up", can it be from other reasons, not just cancer cell activity? Does the low CA125 confirm this?

    I've read about this on-line but it sure makes a difference when I hear comments by people who have had similar experiences.

    Although my mother is the one who has cancer, I get so much strength and inspiration from reading the posts by all these courageous women. And, this helps me to be strong for Mom. Thank you to everyone!

    PET scans
    Yes, Pet scans can light up if there is inflammation (rapid cell activity) as well as cancer. Maybe other reasons. My original PET taken 1 month post surgery was lit up from head to toe - scared me to death. Next one (after treatment and many irritating contacts with my insurance company,) was negative.

    My doc thinks is was a false positive not "skipping" (my abdominal lymph nodes were clear and it is rare for this to happen with positive nodes elsewhere per doc).

    Hope this answers your question.
  • thank you
    thank you Member Posts: 77

    Question about PET scan various things that "light up"
    Last April, I posted my mother's experience on the other UPSC message board (she was diagnosed in 2008, had hysterechtomy, liver tumor and gallbladder removed, PET scan clear in April 2009, had quadruple heart bypass in May, now recovering very well.) My 77 year old mother is an amazing survivor! She had a follow up PET scan last week and everything was clear except a small area where the gall bladder had been. A part was "lit up" so they did a a blood test; Mom's CA125 is 22. Her doctor seemed pleased and said the part that lit up was probably fluid (she had fluid before in other areas) She will have another PET scan in 3 months.

    Has anyone ever had a similar experience? Just because a PET scan "lights up", can it be from other reasons, not just cancer cell activity? Does the low CA125 confirm this?

    I've read about this on-line but it sure makes a difference when I hear comments by people who have had similar experiences.

    Although my mother is the one who has cancer, I get so much strength and inspiration from reading the posts by all these courageous women. And, this helps me to be strong for Mom. Thank you to everyone!

    My mom's PET lit up and was inflammation
    My mom had an MRI (at 6 month follow up after the end of chemo and radiation) which showed a suspisious lesion in vaginal cuff. She then had a PET scan which lit up. We were scared to death that this is a recurrence. We were given the option of repeating the PET scan in 3 months, but we opted for a second laparoscopy, which showed ONLY inflammation. So, this happens. Your mom is an AMAZING SURVIVOR!! Enjoy!!!
  • deanna14
    deanna14 Member Posts: 732
    thank you said:

    My mom's PET lit up and was inflammation
    My mom had an MRI (at 6 month follow up after the end of chemo and radiation) which showed a suspisious lesion in vaginal cuff. She then had a PET scan which lit up. We were scared to death that this is a recurrence. We were given the option of repeating the PET scan in 3 months, but we opted for a second laparoscopy, which showed ONLY inflammation. So, this happens. Your mom is an AMAZING SURVIVOR!! Enjoy!!!

    I had PET "light up"
    I had a PET scan after finishing chemo and had 2 lymph nodes "light up." After 2 negative biopsies, repeated CT scans,(at 3 month intervals), have shown these lymph nodes have progressively gotten smaller. One of which is still detectable, but essentially back to normal and the other is "almost" back to normal. Of course I still worry if I let myself, but my doctor was confident enough to wait 4 months this time between scans. My CA-125 has never been elevated, so this just is not a reliable marker for me.
    Wow! Your mom is a trooper! She has been through the wringer, bravo to her!! I hope and pray she has an amazing 2010! God bless.
  • DaughterNo1
    DaughterNo1 Member Posts: 14
    deanna14 said:

    I had PET "light up"
    I had a PET scan after finishing chemo and had 2 lymph nodes "light up." After 2 negative biopsies, repeated CT scans,(at 3 month intervals), have shown these lymph nodes have progressively gotten smaller. One of which is still detectable, but essentially back to normal and the other is "almost" back to normal. Of course I still worry if I let myself, but my doctor was confident enough to wait 4 months this time between scans. My CA-125 has never been elevated, so this just is not a reliable marker for me.
    Wow! Your mom is a trooper! She has been through the wringer, bravo to her!! I hope and pray she has an amazing 2010! God bless.

    Thank you
    Thanks for your informative and kind comments. My mother has a follow up PET scan scheduled for April 6th. Her doctor said she thinks that inflammation is causing the PET to light up. I appreciate your input!
  • Cindy Bear
    Cindy Bear Member Posts: 569
    Pet Scan
    FYI_ Pet scan readings. My mother's gyn/oncologist told me that any SUV reading (that's Pet scan measurement)of over 2.7 is malignancy. The SUV= standard uptake volume. That measure how much of the radioactive glucose the cells are taking in, the theory that cancer cells take in more becasue they are more active. Yes inflammation and infection can make areas light up but he stated very very firmly that anything higher than 2.7 is malignancy.
    I hope this info. helps you.
  • Ro10
    Ro10 Member Posts: 1,561 Member

    Pet Scan
    FYI_ Pet scan readings. My mother's gyn/oncologist told me that any SUV reading (that's Pet scan measurement)of over 2.7 is malignancy. The SUV= standard uptake volume. That measure how much of the radioactive glucose the cells are taking in, the theory that cancer cells take in more becasue they are more active. Yes inflammation and infection can make areas light up but he stated very very firmly that anything higher than 2.7 is malignancy.
    I hope this info. helps you.

    Had lab today
    My CA 125 is now up to 119. It was 77.7 6 weeks ago. So I will have another CAT scan done on Monday the 15th. I will see the doctor again on the 22nd and he will review the findings. He said if the CAT scan shows something, he may want to biopsy the findings. I guess that will determine where it is. He will then discuss the treatment plan. Otherwise if the CAT scan is negative than we will continue to observe. That is what I am hoping for.....just more observation. The physical exam was good, with no abnormalities noted. I am feeling good and feel like I am back to where I was pre-surgery. I am thankful that I do not have any long term side effects from the chemo or radiation like so many have discussed. So 2 more weeks to enjoy each day. In peace and caring.
  • A1pena
    A1pena Member Posts: 92
    Ro10 said:

    Had lab today
    My CA 125 is now up to 119. It was 77.7 6 weeks ago. So I will have another CAT scan done on Monday the 15th. I will see the doctor again on the 22nd and he will review the findings. He said if the CAT scan shows something, he may want to biopsy the findings. I guess that will determine where it is. He will then discuss the treatment plan. Otherwise if the CAT scan is negative than we will continue to observe. That is what I am hoping for.....just more observation. The physical exam was good, with no abnormalities noted. I am feeling good and feel like I am back to where I was pre-surgery. I am thankful that I do not have any long term side effects from the chemo or radiation like so many have discussed. So 2 more weeks to enjoy each day. In peace and caring.

    in my thoughts!
    I'm so sorry to hear about the rise in your numbers- I'll be thinking and praying for you!

    hugs,

    Amanda
  • lindaprocopio
    lindaprocopio Member Posts: 1,980 Member
    A1pena said:

    in my thoughts!
    I'm so sorry to hear about the rise in your numbers- I'll be thinking and praying for you!

    hugs,

    Amanda

    ((((Ro)))) We'll be CT Scan buddies Monday as I'm also scanning.
    I'll be thinking of you Monday as you get your CT-scan, as I'll be having a PET/CT scan Monday, too. We can hold virtual hands through cyber space, just as we will be holding our breaths simultaneously awaiting our results. Scan days are so HUGE; so much hangs on what happens, what they see and what they think we should do about it. I never pray for a clear scan; instead I pray for an accurate one that leads to the right decision. But in my heart I am yearning for NED, still hoping for that long-shot miracle, fingers-and-toes crossed for luck!

    This will be my first combo PET/CT done on the same machine back-to-back, a 3-hour procedure including the 1-hour 'quiet time' for the PET contrast. Last time I just originally had a CT-scan, and the results of that triggered a separate PET scan. Anyone have any insight for me on what to expect from a combo CT/PET? Because one of the nodes they suspect is cancerous is in my armpit, I will have to keep my arms above my head for the entire time. Last time I had my 1st PET (November 2009), even with it just being a PET-scan alone without the CT part, my hands went numb and I had to sleep with a heating pad the following 3 nights because my shoulders ached so bad for days. Does anyone know the actual time I will be immobilized in the machine for the combo PET/CT?
  • california_artist
    california_artist Member Posts: 816 Member

    ((((Ro)))) We'll be CT Scan buddies Monday as I'm also scanning.
    I'll be thinking of you Monday as you get your CT-scan, as I'll be having a PET/CT scan Monday, too. We can hold virtual hands through cyber space, just as we will be holding our breaths simultaneously awaiting our results. Scan days are so HUGE; so much hangs on what happens, what they see and what they think we should do about it. I never pray for a clear scan; instead I pray for an accurate one that leads to the right decision. But in my heart I am yearning for NED, still hoping for that long-shot miracle, fingers-and-toes crossed for luck!

    This will be my first combo PET/CT done on the same machine back-to-back, a 3-hour procedure including the 1-hour 'quiet time' for the PET contrast. Last time I just originally had a CT-scan, and the results of that triggered a separate PET scan. Anyone have any insight for me on what to expect from a combo CT/PET? Because one of the nodes they suspect is cancerous is in my armpit, I will have to keep my arms above my head for the entire time. Last time I had my 1st PET (November 2009), even with it just being a PET-scan alone without the CT part, my hands went numb and I had to sleep with a heating pad the following 3 nights because my shoulders ached so bad for days. Does anyone know the actual time I will be immobilized in the machine for the combo PET/CT?

    linda
    For comfort, before you get started through the tube, ask for as many pillows as you need to make yourself fell comfortable. Seems like tube time is 30-forty minutes, maybe even less. The PET/CT combo subjects you to much much less radiation than the CT would by itself.

    Wish they would give Roberta the PET/CT combo too.

    claudia
  • california_artist
    california_artist Member Posts: 816 Member
    Ro10 said:

    Had lab today
    My CA 125 is now up to 119. It was 77.7 6 weeks ago. So I will have another CAT scan done on Monday the 15th. I will see the doctor again on the 22nd and he will review the findings. He said if the CAT scan shows something, he may want to biopsy the findings. I guess that will determine where it is. He will then discuss the treatment plan. Otherwise if the CAT scan is negative than we will continue to observe. That is what I am hoping for.....just more observation. The physical exam was good, with no abnormalities noted. I am feeling good and feel like I am back to where I was pre-surgery. I am thankful that I do not have any long term side effects from the chemo or radiation like so many have discussed. So 2 more weeks to enjoy each day. In peace and caring.

    Roberta
    I am very saddend to hear that your numbers continue to climb. Ocassionaly, the elevated CA-125 can be due to other causes. Wishes that that will be so in your case.

    Warm thoughts,

    Claudia
  • fuzzytrouble
    fuzzytrouble Member Posts: 212
    Ro10 said:

    Had lab today
    My CA 125 is now up to 119. It was 77.7 6 weeks ago. So I will have another CAT scan done on Monday the 15th. I will see the doctor again on the 22nd and he will review the findings. He said if the CAT scan shows something, he may want to biopsy the findings. I guess that will determine where it is. He will then discuss the treatment plan. Otherwise if the CAT scan is negative than we will continue to observe. That is what I am hoping for.....just more observation. The physical exam was good, with no abnormalities noted. I am feeling good and feel like I am back to where I was pre-surgery. I am thankful that I do not have any long term side effects from the chemo or radiation like so many have discussed. So 2 more weeks to enjoy each day. In peace and caring.

    Numbers
    Here's hoping that it's just a something else that caused the rise in your numbers.
    Hugs to you.
  • Ro10
    Ro10 Member Posts: 1,561 Member

    ((((Ro)))) We'll be CT Scan buddies Monday as I'm also scanning.
    I'll be thinking of you Monday as you get your CT-scan, as I'll be having a PET/CT scan Monday, too. We can hold virtual hands through cyber space, just as we will be holding our breaths simultaneously awaiting our results. Scan days are so HUGE; so much hangs on what happens, what they see and what they think we should do about it. I never pray for a clear scan; instead I pray for an accurate one that leads to the right decision. But in my heart I am yearning for NED, still hoping for that long-shot miracle, fingers-and-toes crossed for luck!

    This will be my first combo PET/CT done on the same machine back-to-back, a 3-hour procedure including the 1-hour 'quiet time' for the PET contrast. Last time I just originally had a CT-scan, and the results of that triggered a separate PET scan. Anyone have any insight for me on what to expect from a combo CT/PET? Because one of the nodes they suspect is cancerous is in my armpit, I will have to keep my arms above my head for the entire time. Last time I had my 1st PET (November 2009), even with it just being a PET-scan alone without the CT part, my hands went numb and I had to sleep with a heating pad the following 3 nights because my shoulders ached so bad for days. Does anyone know the actual time I will be immobilized in the machine for the combo PET/CT?

    Linda I will be thinking of you Monday, too
    I will think of the virtual hand holding on Monday. Maybe you could ask for pillows to rest you arms on to get you comfortable, and warm blankets too. It did not bother me to keep my hands above my head. Many times I sleep like that.

    I am not sure about the PET/CT scan combo time frame as I have never had one. I would not think it would be much longer than the PET scan though, but I sure don't know.

    Hoping you get good results and those nodes have shrunk or even better disappeared. I too hope for a miracle for you. In peace and caring.
  • daisy366
    daisy366 Member Posts: 1,458 Member

    Numbers
    Here's hoping that it's just a something else that caused the rise in your numbers.
    Hugs to you.

    ro and linda
    Ro - I am also sorry to hear of the rising numbers. I hate this cancer stuff!!!!

    Linda, scan will take about 30 min- I was given earphones and music to pass the time. Bring your own just in case.

    My thoughts and prayers are with you both of you. Mary Ann
  • deanna14
    deanna14 Member Posts: 732
    Ro10 said:

    Had lab today
    My CA 125 is now up to 119. It was 77.7 6 weeks ago. So I will have another CAT scan done on Monday the 15th. I will see the doctor again on the 22nd and he will review the findings. He said if the CAT scan shows something, he may want to biopsy the findings. I guess that will determine where it is. He will then discuss the treatment plan. Otherwise if the CAT scan is negative than we will continue to observe. That is what I am hoping for.....just more observation. The physical exam was good, with no abnormalities noted. I am feeling good and feel like I am back to where I was pre-surgery. I am thankful that I do not have any long term side effects from the chemo or radiation like so many have discussed. So 2 more weeks to enjoy each day. In peace and caring.

    Thoughts and prayers with Ro and Linda!!
    Ro, sorry to hear your CA is rising, hopefully it is for benign reasons and observation will be the recommendation! Your positive attitude is an inspiration.

    Linda, I have been sitting here trying to remember the differences in the CT and the PET/CT. The mind is a wonderful machine, as I can't remember... lol. I do remember that they started an IV. There was some reason that the port could not be used for the PET portion of the exam, but I can't remember what it was. I don't recall that the actual time on the exam table took much more time. Sorry I am not much help.

    You will both be in my thoughts and prayers...
  • Ro10
    Ro10 Member Posts: 1,561 Member
    deanna14 said:

    Thoughts and prayers with Ro and Linda!!
    Ro, sorry to hear your CA is rising, hopefully it is for benign reasons and observation will be the recommendation! Your positive attitude is an inspiration.

    Linda, I have been sitting here trying to remember the differences in the CT and the PET/CT. The mind is a wonderful machine, as I can't remember... lol. I do remember that they started an IV. There was some reason that the port could not be used for the PET portion of the exam, but I can't remember what it was. I don't recall that the actual time on the exam table took much more time. Sorry I am not much help.

    You will both be in my thoughts and prayers...

    Port not able to be used for PET scans
    Deanna I was told that the solution for the PET scan is too thick to give through the port. I guess they use a thick glucose solution. Hope all is well with you Deanna.
  • kkstef
    kkstef Member Posts: 688 Member
    Ro10 said:

    Linda I will be thinking of you Monday, too
    I will think of the virtual hand holding on Monday. Maybe you could ask for pillows to rest you arms on to get you comfortable, and warm blankets too. It did not bother me to keep my hands above my head. Many times I sleep like that.

    I am not sure about the PET/CT scan combo time frame as I have never had one. I would not think it would be much longer than the PET scan though, but I sure don't know.

    Hoping you get good results and those nodes have shrunk or even better disappeared. I too hope for a miracle for you. In peace and caring.

    Ro and Linda....you are in my thoughts!
    I am appreciate the anxiety that you both are experiencing as your approach your scans tomorrow. We are all hoping for LOTS OF VERY GOOD NEWS for both of you! There are so many of us that are wishing you both the very best!!

    Karen
  • Ro10
    Ro10 Member Posts: 1,561 Member
    Ro10 said:

    Port not able to be used for PET scans
    Deanna I was told that the solution for the PET scan is too thick to give through the port. I guess they use a thick glucose solution. Hope all is well with you Deanna.

    Asked about port not able to be used for PET scans,
    Today I asked the radiology RN why a port cannot be used for the PET scan. She said they use such a small amount of contrast for the PET scan and they are afraid the contrast will stay in the port and not be distributed throughout the body like it will if it is injected into the vein. That would affect the results if the contrast stayed in the port.

    The lab person is the one who told me the glucose solution was too thick for the port.

    I only had the CAT scan and had to drink the Barium drinks. I had to drink 450 ml at 8:00, 9:30 and 11:00. I did not think I was going to be able to keep it down. I don't know if it was the consistency or what, but I did not like it. I had banana flavor. It did not really taste like banana, but did smell like banana. They give you the barium drink to start at home, other wise you need to go to the radiology department 2 hours ahead of time and drink the contrast there. I will opt to do that the next time, rather than drink that barium stuff again.

    Won't get my results until next Tuesday when I go see the doctor again.

    Linda hope your PET/CT went well and you get good results. In peace and caring.