Scared and Unsure

Harmony09
Harmony09 Member Posts: 79
in Uterine/Endometrial Cancer #1

I really need to figure out how to proceed. I have Stage IV Grade 3 with serous and clear cell adenocarcinoma. It was in my uterus, cervix, vagina, and wrapped around my bladder with muscle invasion.

I just finished frontline treatment....6 carbo/taxol with full abdominal radiation and 3 brachy treatments. When I was first diagnosed, my CA125 was 87. It went down to 6. I get it drawn monthly. It's been rising, even during the last 2 chemos. It was in the teens, then twenties, and now it's 37. I'm one month after my last chemo, and my PET/CT is supposedly NED. I opted to wait 1 more month, but if it's still rising...I don't want to wait for a tumor! I'm also afraid that I have become platinum resistant, since it was rising during chemo. What would you do?

Comments

  • LisaPizza
    LisaPizza Member Posts: 358 Member
    #2
     I don't know all the details

     I don't know all the details, but j do know they have  number of options besides platins if need be. Waiting sucks!

  • Northwoodsgirl
    Northwoodsgirl Member Posts: 571
    #3
    CA125

    CA125 can raise and fall for many reasons as I understand it. Someone who knows more about it will likely comment and advise soon. It is so nerve racking to watch these lab results but other than CT:PET scans and symptoms we really don’ t have much for indicators that cancer is back. 

    Lori

  • oldbeauty
    oldbeauty Member Posts: 379 Member
    #4
    Options.

    Again, I am sorry that you are being tested this way.  I stopped doing CA 125's bc we all agreed it was not a viable test for me; my numbers never budged from the mid-teens.  I reread an analysis from my first recurrence in 2012 that tested for CA 125 and it was found to be negative for me.  So I decided not to put myself through that additional stress of early warning marker.  I am picking up on your comment that you don't want to wait for a tumor.  Have you had cancerous tissue tested yet for genetic mutations, etc?  I have been treated 3x over the last 12 years and I actually hope that when it recurs again, as I assume it will, I will have the courage to wait for a growth that is capable of sampling so I can get a confirmation biopsy and enough tissue to get the genomic testing done.  But I know I hurried into treatment the 3d time without waiting to see if the lung nodules grew.  It is so frightening to contemplate that the disease is active again.  I would take courage from the PET/CT showing NED, if I could.  Honestly, it sounds to me like you might benefit from consulting a qualified psychologist for help dealing with your emotions and learning strategies that might, perhaps, ease your mind.  I did that in 2012.  It was like going through grief counseling, I think.  The counselor was affiliated with the gyn onc' practice.  If you are in undue distress about your fears and decisions you are facing, please seek qualified help.  Best wishes, Oldbeauty

  • pinky104
    pinky104 Member Posts: 574 Member
    #5
    Question

    I was also a stage IV, grade 3 patient, with UPSC.  My cancer went down to 6 after a few years of being at 7.  But then it went up to 9 in June, 2016 and rose to 14 in Feb., 2017.  I happened to have a hemoccult test given to me by my PCP and then found out one of the three stool smears came out positive for blood.  I was sent for a colonoscopy which found a tumor wrapped around my ascending colon.  I had to have a CT and then a PET scan a couple of days later.  I ended up having emergency surgery the following week so that the cancer wouldn't give me a bowel obstruction. The cancer had been causing numbness in my thigh, but the numbness was blamed on my supposedly wearing my clothes too tight by a neurologist I saw.  It was in my muscle plus my peritoneum and paracolic gutter, and was heading toward my bones. Two weeks after surgery, a CA-125 was done and I was already at 129.  That was just a couple of months after my CA-125 had been at 14.  My CA-125's have always been accurate for me.  How recently were your CT/PET scans done?   This cancer can grow really fast, so unless you know some other reason for your CA-125 to have risen (such as inflammation in your body elsewhere), I would ask for some more testing if I were in your shoes.  I know my GYN/onc. couldn't get all mine out of my muscle without affecting my ability to walk.  He told me he hoped chemo would take care of it, which supposedly it did, but I'm still not convinced as I still have numbness.  I'm not sure what other testing could be done and approved by your insurance if your CT/PET scans were recent.  Have you had a hemoccult test or a colonoscopy done recently?  I know I was being told my CA-125's were in the normal range when I obviously had cancer growing like wild in me, and I had been in remission for 7 years when diagnosed again.   

  • evolo58
    evolo58 Member Posts: 293 Member
    #6
    It doesn't take much to

    It doesn't take much to elevate a CA-125, apparently, from what I've been seeing. Even a benign inflammation can do it. I've been seeing a little increase myself, and admittedly am concerned about it as well. I've read that stress and thyroid issues might not help ... I'm planning to ask my doctor about those when I see her next. I have hypothyroidism (formerly hyper). My endocrinologist nurse expressed concern that my current condition could cause thryoid hormone changes, and requested the doctor perform a basic TSH test, but when I mentioned it to the onco nurse a couple of months ago, she brushed it off and said that the office doesn't do TSH tests. I think it's time for me to be more aggressive about gettting one now, and if you have thyroid issues, you might want to ask about it. 

    Was there ANY sort of inflammation in or near the abdominal area on the CT scan? I know that women with inflamed gall bladders thanks to treatment or other causes wound up alarmed when they found out their CA-125 results. Apparently, the steriods inflamed their gall bladders. Fortunately for many, the swelling went down once the roids wore off.

    If there was no evidence of infection or inflammation anywhere that could explain this rise, that could be a major concern. If it's any consolation, though, I've had women tell me that their CA-125s have gone up for no apparent reason, then went back down for no apparent reason. Let's hope it's that, and once first line is completed, the nunbers go down. I don't know if this is the case, but it has happened.

    When you said wait one more month, what was the follow-up? What was the onco planning to do? Another CA-125? Sorry. I'm still newish at this myself in some ways!

  • LisaPizza
    LisaPizza Member Posts: 358 Member
    #7
    oldbeauty said:

    Options.

    Again, I am sorry that you are being tested this way.  I stopped doing CA 125's bc we all agreed it was not a viable test for me; my numbers never budged from the mid-teens.  I reread an analysis from my first recurrence in 2012 that tested for CA 125 and it was found to be negative for me.  So I decided not to put myself through that additional stress of early warning marker.  I am picking up on your comment that you don't want to wait for a tumor.  Have you had cancerous tissue tested yet for genetic mutations, etc?  I have been treated 3x over the last 12 years and I actually hope that when it recurs again, as I assume it will, I will have the courage to wait for a growth that is capable of sampling so I can get a confirmation biopsy and enough tissue to get the genomic testing done.  But I know I hurried into treatment the 3d time without waiting to see if the lung nodules grew.  It is so frightening to contemplate that the disease is active again.  I would take courage from the PET/CT showing NED, if I could.  Honestly, it sounds to me like you might benefit from consulting a qualified psychologist for help dealing with your emotions and learning strategies that might, perhaps, ease your mind.  I did that in 2012.  It was like going through grief counseling, I think.  The counselor was affiliated with the gyn onc' practice.  If you are in undue distress about your fears and decisions you are facing, please seek qualified help.  Best wishes, Oldbeauty

    Re: the tumor testing, I have read that they store your tissue and can go back and test it later after the fact. Your situation may be different, but I just wanted mention it for those who didn't know. Mine actually hasn't been tested either, I guess because I was going to get standard frontline adjucant chemo regardless  (stage 3a, grade 2, with presumably no residual disease after surgery).

  • pinky104
    pinky104 Member Posts: 574 Member
    #8
    evolo58 said:

    It doesn't take much to

    It doesn't take much to elevate a CA-125, apparently, from what I've been seeing. Even a benign inflammation can do it. I've been seeing a little increase myself, and admittedly am concerned about it as well. I've read that stress and thyroid issues might not help ... I'm planning to ask my doctor about those when I see her next. I have hypothyroidism (formerly hyper). My endocrinologist nurse expressed concern that my current condition could cause thryoid hormone changes, and requested the doctor perform a basic TSH test, but when I mentioned it to the onco nurse a couple of months ago, she brushed it off and said that the office doesn't do TSH tests. I think it's time for me to be more aggressive about gettting one now, and if you have thyroid issues, you might want to ask about it. 

    Was there ANY sort of inflammation in or near the abdominal area on the CT scan? I know that women with inflamed gall bladders thanks to treatment or other causes wound up alarmed when they found out their CA-125 results. Apparently, the steriods inflamed their gall bladders. Fortunately for many, the swelling went down once the roids wore off.

    If there was no evidence of infection or inflammation anywhere that could explain this rise, that could be a major concern. If it's any consolation, though, I've had women tell me that their CA-125s have gone up for no apparent reason, then went back down for no apparent reason. Let's hope it's that, and once first line is completed, the nunbers go down. I don't know if this is the case, but it has happened.

    When you said wait one more month, what was the follow-up? What was the onco planning to do? Another CA-125? Sorry. I'm still newish at this myself in some ways!

    Question for Evolo58

    I also have hypothyroidism and have a history of hyperthyroidism (actually, Graves Disease).  My thyroid hormone levels went up and down for many years, but I think they've actually been more stable since I've had cancer.  I did have a cold throw my CA-125 level off once, probably due to some inflammation in my body.  I'm curious about what kind of treatment you got for your hyperthyroidism.  I started off with pills, then chose to have radio-iodine given to me back in the mid 90's.  I've noticed a few other women on this site were also given radio-iodine over the years, and I have to wonder if there's any connection with it and our cancer.   

  • Jacjac2
    Jacjac2 Member Posts: 44
    edited June 2018 #9
    oldbeauty said:

    Options.

    Again, I am sorry that you are being tested this way.  I stopped doing CA 125's bc we all agreed it was not a viable test for me; my numbers never budged from the mid-teens.  I reread an analysis from my first recurrence in 2012 that tested for CA 125 and it was found to be negative for me.  So I decided not to put myself through that additional stress of early warning marker.  I am picking up on your comment that you don't want to wait for a tumor.  Have you had cancerous tissue tested yet for genetic mutations, etc?  I have been treated 3x over the last 12 years and I actually hope that when it recurs again, as I assume it will, I will have the courage to wait for a growth that is capable of sampling so I can get a confirmation biopsy and enough tissue to get the genomic testing done.  But I know I hurried into treatment the 3d time without waiting to see if the lung nodules grew.  It is so frightening to contemplate that the disease is active again.  I would take courage from the PET/CT showing NED, if I could.  Honestly, it sounds to me like you might benefit from consulting a qualified psychologist for help dealing with your emotions and learning strategies that might, perhaps, ease your mind.  I did that in 2012.  It was like going through grief counseling, I think.  The counselor was affiliated with the gyn onc' practice.  If you are in undue distress about your fears and decisions you are facing, please seek qualified help.  Best wishes, Oldbeauty

    CA 125

    I have been told that CA 125 test are not always viable for uterine cancer.  Mine maintain around the 40 mark.  What continues to blow my mind is that from the first meeting was told it was a slow growing cancer.  So we did the surgery to remove one tumor, only for it to begin growing back immediately after the surgery.  That doesnt sound like slow growing to me.

  • Armywife
    Armywife Member Posts: 451 Member
    #10
    How are you doing, Harmony?

    I understand the anxiety so well.  It's a lot to have thrown at you!  I've only had my CA 125 tested twice  - once right after surgery (14) and once after 5 chemos (15).  My gyn-onc said it's not an accurate marker for me.  I may ask for it again when I go in Sept.  I applaud you for completing all that treatment!  You really had the full deal and came through it.  Give yourself a hug for me!

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