Should I be concerned or am I borrowing trouble?

Pat51
Pat51 Member Posts: 130
in Uterine/Endometrial Cancer #1
I have UPSC. I have recently had my one year CT scan. This is the first CT since being diagnosed and finishing treatment, which my oncologist reluctantly agreed to. My CA125 at the time of diagnosis was only 22.1, after surgery it went to 84 and then, during chemo, quickly came down to single digits, where it had remained. During brachy therapy radiation it went up to 11.5. My last blood test, 3 months ago, showed CA125 at 7.1, which I was happy with. My CT scans this week, came back with no evidence of disease, for which I am VERY grateful. However, the blood work showed that my CA125 had jumped up to 16.3. Although, this number is still in the normal range, I feel that it is high for me. I have had some pinching/discomfort in my right side for the last couple of the months. I mentioned this to my doctor and he said that the CT reports did not mention detecting anything in that area. I asked if this discomfort could be the reason for the raise of the CA125, but did not receive a definite answer. He said that he would not worry about the CA125 until it got to a number in the hundreds!! I will be worried long before then! He pretty much blew off my concerns. While I am thrilled with the good scan results, I cannot shake the feeling that there is something going on to cause the rise of my CA135 numbers. I feel guilty even asking for an opinion here because I know that there are many others that are in a much worse place medically than I am. Should I go with the good scan results and forget about the CA125 or should I be concerned about the rising number indicating something?

Has anyone had similar test results to mine? I feel like I am whining about nothing but still would like to know what others with this disease think. I know that many of the ladies on this site are much more knowledgeable than I am concerning test results and UPSC, therefore I would appreciate and welcome any and all opinions.

Note: This is the same doctor and hospital that recently misread a couple of scans on a relative of mine. After several complaints to the doctor about pain in the ribs and finally insisting that it be checked, they found that there was a tumor on/near his rib that grew and crack the rib. This tumor went unnoticed on at least two scans. Perhaps this is what is influencing my apprehension.


Thanks,
Pat

Comments

  • Tresia23
    Tresia23 Member Posts: 77
    #2
    Monitoring CA125
    Hi Pat, I sympathise with your anxiety and you are definitely not whining about nothing. This place is for everyone and we all care about each other equally no matter what stage you are in your cancer journey. You are doing what we all do which is to be our own best advocate. I have never had elevated ca125 but many of the ladies on this board have more expertise in this area than I do. While you are waiting for responses to your post why not do a search on the board using ca125 as your search term. Also have a look at cancer.org column on the side of this page in 'Cancer information' where there is quite a bit of info on ca125. When a doctor fails to diagnose correctly it does affect our confidence in him/her. Good diagnostic skills are a quality that some seem to have in abundance while others will just take the standard view. I think it requires real curiosity and perseverance and they do not always have the time. I remember someone posting on here that her oncologist said symptoms that last for more than two weeks are worth investigating, so you were quite right to ask his opinion on what it might be. Thinking of you, Georgia
  • daisy366
    daisy366 Member Posts: 1,458 Member
    #3
    Tresia23 said:

    Monitoring CA125
    Hi Pat, I sympathise with your anxiety and you are definitely not whining about nothing. This place is for everyone and we all care about each other equally no matter what stage you are in your cancer journey. You are doing what we all do which is to be our own best advocate. I have never had elevated ca125 but many of the ladies on this board have more expertise in this area than I do. While you are waiting for responses to your post why not do a search on the board using ca125 as your search term. Also have a look at cancer.org column on the side of this page in 'Cancer information' where there is quite a bit of info on ca125. When a doctor fails to diagnose correctly it does affect our confidence in him/her. Good diagnostic skills are a quality that some seem to have in abundance while others will just take the standard view. I think it requires real curiosity and perseverance and they do not always have the time. I remember someone posting on here that her oncologist said symptoms that last for more than two weeks are worth investigating, so you were quite right to ask his opinion on what it might be. Thinking of you, Georgia

    Pat,
    I am a UPSC sister looking at a second recurrence. Here's my 2 cents. I see several red flags.

    First Red flag: oncologist "reluctantly agreed" to CT scan after tx. What? This has been routine for me with my doctor recommending, not me insisting. I was in surveillance after last tx and doing well, CA125 in normal range and my doc said he recommends scan (I get PET/CTs) annually. Voila, it showed up some mets in lymph system.

    It's the doctor's JOB to treat us and give best care.

    second red flag: My scans have been interpreted by the radiologist, not my oncologist. Are you getting copies of these reports? I do not always but I will from now one because I see a pattern in my past results. Twice after finishing treatment, the scan talked of "areas to watch". Both times, these were next area where I got mets. This time I am going to talk to doc about doing more chemo with goal to wipe it out and not leave anything there.

    third red flag: doctor brushing you off. I don't know what else he/she could do to investigate your pains but he/she should at least express some concern and agree to watch carefully.

    fourth red flag: and your concerns. Have you thought about a second opinion? No harm in this - it's done all the time. You need peace of mind and confidence in your treatment team. Your doc is the head of this team.

    I'm not expert in CA125. My doc looks at trends and gets concerned when it doubles from one test to another. This last time my Ca125 was within normal range (26) but scan showed mets in lymph system which doc wants to treat. Last time ca125 was near 100 before he recommended treating. There may be other reasons for elevation which your research would explain.

    If it was me, I would get another opinion and definitely start collecting copies of all your reports for your info and to take with you to another doc.

    Hugs and prayers, Mary Ann
  • Pat51
    Pat51 Member Posts: 130
    #4
    daisy366 said:

    Pat,
    I am a UPSC sister looking at a second recurrence. Here's my 2 cents. I see several red flags.

    First Red flag: oncologist "reluctantly agreed" to CT scan after tx. What? This has been routine for me with my doctor recommending, not me insisting. I was in surveillance after last tx and doing well, CA125 in normal range and my doc said he recommends scan (I get PET/CTs) annually. Voila, it showed up some mets in lymph system.

    It's the doctor's JOB to treat us and give best care.

    second red flag: My scans have been interpreted by the radiologist, not my oncologist. Are you getting copies of these reports? I do not always but I will from now one because I see a pattern in my past results. Twice after finishing treatment, the scan talked of "areas to watch". Both times, these were next area where I got mets. This time I am going to talk to doc about doing more chemo with goal to wipe it out and not leave anything there.

    third red flag: doctor brushing you off. I don't know what else he/she could do to investigate your pains but he/she should at least express some concern and agree to watch carefully.

    fourth red flag: and your concerns. Have you thought about a second opinion? No harm in this - it's done all the time. You need peace of mind and confidence in your treatment team. Your doc is the head of this team.

    I'm not expert in CA125. My doc looks at trends and gets concerned when it doubles from one test to another. This last time my Ca125 was within normal range (26) but scan showed mets in lymph system which doc wants to treat. Last time ca125 was near 100 before he recommended treating. There may be other reasons for elevation which your research would explain.

    If it was me, I would get another opinion and definitely start collecting copies of all your reports for your info and to take with you to another doc.

    Hugs and prayers, Mary Ann

    Thanks for your replies
    I do have concerns with my oncologist, but he is part of a large oncology group that is the only one in the area. They do not seem to know a lot about UPSC. They travel out to various locations in our area. I have not been able to find a GYN/ONC. After finding this board, it seemed that he recommended the same treatment as others here were prescribed so I stayed with him. However, now I am concerned about the rising CA125 and what the pinching means. My doctor did not want me to have a CT, but I insisted after 1 year. He wanted to go by symptoms....What symptoms? I had virtually no symptoms when I was diagnosed.

    My scans were read by a radiologist. I did get a copy of the scan report and also got a copy of the scans on a disk in case I wanted to go for another opinion. I figured that my insurance paid for the scans, I should be able to have a copy on a disk to prevent any more hassle.

    I just wanted the opinions of others with this disease, to know whether or not I was being parinoid about my situation. It means a great deal to me to receive the opinions of others on this board.

    My GYN seems to be a more caring doctor and I think that I will try to get an appointment to get his opinion. Maybe he will rerun my CA125 or point me in the right direction for another opinion.

    Thanks again

    Pat
  • daisy366
    daisy366 Member Posts: 1,458 Member
    #5
    Pat51 said:

    Thanks for your replies
    I do have concerns with my oncologist, but he is part of a large oncology group that is the only one in the area. They do not seem to know a lot about UPSC. They travel out to various locations in our area. I have not been able to find a GYN/ONC. After finding this board, it seemed that he recommended the same treatment as others here were prescribed so I stayed with him. However, now I am concerned about the rising CA125 and what the pinching means. My doctor did not want me to have a CT, but I insisted after 1 year. He wanted to go by symptoms....What symptoms? I had virtually no symptoms when I was diagnosed.

    My scans were read by a radiologist. I did get a copy of the scan report and also got a copy of the scans on a disk in case I wanted to go for another opinion. I figured that my insurance paid for the scans, I should be able to have a copy on a disk to prevent any more hassle.

    I just wanted the opinions of others with this disease, to know whether or not I was being parinoid about my situation. It means a great deal to me to receive the opinions of others on this board.

    My GYN seems to be a more caring doctor and I think that I will try to get an appointment to get his opinion. Maybe he will rerun my CA125 or point me in the right direction for another opinion.

    Thanks again

    Pat

    GYN/ONC
    Pat,

    I definitely would look for gynecologic oncologist. UPSC is rare and most oncologists don't treat this. Perhaps you could consult with gyn-onc and get prescribed treatment from him/her and your local doc would monitor.

    You could look at national database for gyn-oncologists and see where the closest practice is near you. Does your gyn have a recommendation for a gyn-onc?

    I agree with you about symptoms. I and many others here had no symptoms. However, my gyn-onc told me that I would be best indicator of recurrence (small consolation) and indeed I brought first symptom to his attention (enlarged supraclavicular lymph node) in 2010.

    I say, follow your gut. Keep us posted. Mary Ann
  • bonniep
    bonniep Member Posts: 36
    #6
    I agree with daisy366
    In December, 2011, I had pain in my neck, shoulder & arm & it looked like my jugular vein was sticking out. I wanted my ONC to know just to get his opinion & he had me come in. He sent me immediately for a CT scan of my head, neck & lungs. He said my CA125 which was up to 29 from 17 was not a marker for me because it had never been above that number even when I had originally been diagnosed in 2010 with USPC. I do think the CA125 is an important number and told him so he did another CA125 'for me'. It was up to 79 and the CT scan reflected an enlarged supraclavicular lymph node. I also had 'new' small nodules on my left & right lung lobes and several other very small spots. I do my final round of chemo on Monday so I am praying the taxol/carbo has worked. Daisy366 I think I read you had surgery to remove your mass - did you do chemo, too and did you have any additional spots? How are you doing?
    I am grateful for my onc/gyn. He does listen to me and never makes me feel like my questions or concerns are silly. I've learned a lot from the women on this website and actually communicate better with my doctor since I know to ask questions about about some of the treatments, experiences others have had.
  • I Will Survive
    I Will Survive Member Posts: 27
    #7
    bonniep said:

    I agree with daisy366
    In December, 2011, I had pain in my neck, shoulder & arm & it looked like my jugular vein was sticking out. I wanted my ONC to know just to get his opinion & he had me come in. He sent me immediately for a CT scan of my head, neck & lungs. He said my CA125 which was up to 29 from 17 was not a marker for me because it had never been above that number even when I had originally been diagnosed in 2010 with USPC. I do think the CA125 is an important number and told him so he did another CA125 'for me'. It was up to 79 and the CT scan reflected an enlarged supraclavicular lymph node. I also had 'new' small nodules on my left & right lung lobes and several other very small spots. I do my final round of chemo on Monday so I am praying the taxol/carbo has worked. Daisy366 I think I read you had surgery to remove your mass - did you do chemo, too and did you have any additional spots? How are you doing?
    I am grateful for my onc/gyn. He does listen to me and never makes me feel like my questions or concerns are silly. I've learned a lot from the women on this website and actually communicate better with my doctor since I know to ask questions about about some of the treatments, experiences others have had.

    chemo/oncology nurses
    I get so much help from these gals - so I would advise anyone to take advantage of this valuable resource. They are truly angels in disguise. When I needed a certain kind of physical therapy, one of them called the PT places for me to see if they offered this machine. Every time I get my port flushed I have a consultation where I can get all my questions answered. I am constantly amazed by their breadth of knowledge and their kindness.

    Hannah
  • daisy366
    daisy366 Member Posts: 1,458 Member
    #8
    I Will Survive said:

    chemo/oncology nurses
    I get so much help from these gals - so I would advise anyone to take advantage of this valuable resource. They are truly angels in disguise. When I needed a certain kind of physical therapy, one of them called the PT places for me to see if they offered this machine. Every time I get my port flushed I have a consultation where I can get all my questions answered. I am constantly amazed by their breadth of knowledge and their kindness.

    Hannah

    Bonnie
    Re: your questions. I found enlarged lymph nodes in April 2010. PET/CT was done followed by biopsy which confirmed UPSC. We agreed to watch for awhile and during that time I was a poster child for plant-based anti-cancer diet. My ca125 continued to rise and in Sept doc and I agreed to start a synergistic 7-week combination of weekly chemo (carboplatin)and daily tomo (low-dose) radiation.

    Result: clean scans in that area till now. However I am dealing with another flare-up in para aortic and pelvic lymph nodes. I will consult with my doc on Wed. to discuss treatment.

    Best to you. Mary Ann (daisy366)
  • willbesurvivor
    willbesurvivor Member Posts: 48
    #9
    daisy366 said:

    Bonnie
    Re: your questions. I found enlarged lymph nodes in April 2010. PET/CT was done followed by biopsy which confirmed UPSC. We agreed to watch for awhile and during that time I was a poster child for plant-based anti-cancer diet. My ca125 continued to rise and in Sept doc and I agreed to start a synergistic 7-week combination of weekly chemo (carboplatin)and daily tomo (low-dose) radiation.

    Result: clean scans in that area till now. However I am dealing with another flare-up in para aortic and pelvic lymph nodes. I will consult with my doc on Wed. to discuss treatment.

    Best to you. Mary Ann (daisy366)

    Hi Pat,
    Are you able to get
    Hi Pat,

    Are you able to get a combined CAT/PET scan? I know most oncologists get concerned when CA125 doubles as it is often a bad sign so perhaps the combined scan will be able to give you better results.

    Tali
  • Pat51
    Pat51 Member Posts: 130
    #10
    willbesurvivor said:

    Hi Pat,
    Are you able to get
    Hi Pat,

    Are you able to get a combined CAT/PET scan? I know most oncologists get concerned when CA125 doubles as it is often a bad sign so perhaps the combined scan will be able to give you better results.

    Tali

    Tali
    I am not able to get a PET scan done. Most insurance companies will not approve that test for uterine cancer. My oncologist did not even want to do a CT until I insisted. Even though the CA125 is still in the normal range, I am concerned because of the big jump (doubled)in 3 months which it has not done before.

    Pat
  • willbesurvivor
    willbesurvivor Member Posts: 48
    #11
    Pat51 said:

    Tali
    I am not able to get a PET scan done. Most insurance companies will not approve that test for uterine cancer. My oncologist did not even want to do a CT until I insisted. Even though the CA125 is still in the normal range, I am concerned because of the big jump (doubled)in 3 months which it has not done before.

    Pat

    That is unfortunate that you
    That is unfortunate that you are not able to get a PET/CT, I think they are much more accurate when there isn't much cancer.

    It is good that it is within normal range, it could just be inflamation. Perhaps get another test in a month or so??

    My mum's doubled and was just over the normal limit of 35 (39) and had spread to a number of lymph nodes around the body. They said a CT scan wouldn't have picked it up.

    However, I am sure this is not the case for you. Sending positive thoughts your way.

    Tali

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