Newbie Cancer Recurrence Scare 3 Years Out CA125 & HE4 Blood Tests

ChrysalisMoon Member Posts: 4

Hi all!

I'm new here. I had a DaVinci assisted total hysterectomy, with bilateral salpingo oopherectomy & 16 lymph nodes removed 3 years ago, at the age of 44. Diagnosis was grade 1 & Stage 1A. I moved cross-country not long after surgery (to be closer to family), so the last time I saw my lovely GYN ONC was 5 weeks post op. It took a very long time to get my medical records copied and then the local cancer center refused to follow me, saying that I was at a very low risk for recurrence. They told my GP to refer me to a regular gyn for follow-up. Which she did, but I never followed through with things.

Fast forward three years. I was experiencing some pain & swelling in my right leg, so went to see my GP, worried about the possibility of lymphadema. She was concerned it might actually be a blood clot, so she sent me for a d-dimer blood test. It came back very high, so she then sent me for an ultrasound of my leg & a chest CT scan, neither of which found anything. However, they wanted me to stay on the blood thinner (xarelto) for the meantime, until it can be conclusively ruled out. The other possible cause for a high d-dimer reading is active cancer. While on the blood thinner, I started to experience some vaginal bleeding & pain. The pain has been getting worse. It might be caused by the medication, but I'm not bleeding from anywhere else, so I am worried about the possibility of a recurrence. My GP referred me for a pelvic CT scan and I have an appointment in 6 weeks. She wants me to get the scan before I see the gynecologist.

I have to get some blood work in the meantime, so was thinking about asking her to do the CA125 (only had that done once, before surgery). I was also doing some research when I came across the HE4 test and read in one article: "When combined CA125 and/or HE4 were elevated in 23 of 26 (88%) of patients with recurrent disease. Furthermore we demonstrate HE4 is elevated in 80% of patients with recurrent EAC and that a HE4 level above 70 pmol/L was associated with a sensitivity of 81%, a specificity of 64% and a negative predictive value of 90% when assessing for recurrent disease.
HE4 is elevated in 81% of patients with recurrent endometrioid EAC and is significantly superior than CA125 as a predictor of recurrent disease. " ( I see my GP Tuesday and want to ask her about it.


Has anybody here ever had the HE4 test done? Has anybody similar symptoms (bleeding & pain) as signs of a recurrence?


TIA ((((( hugs & prayers ))))) for everyone.


  • Tethys41
    Tethys41 Member Posts: 1,382 Member

    I can't speak to your symptoms, but I have had a number of HE4 tests done.  I discovered this test 6 years ago and my medical oncologist was willing to order it periodically.  I have one done each year.  My understanding of it, when used in conjuction with the CA-125, is that the HE4 will start to rise before the CA-125 rises, if a recurrance is brewing. 

    I wish you luck with your situation.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,386 Member
    Well I learned something new

    Well I learned something new - again!  HE4 - I didn't know.

    TIA, I'm sorry but I am having a problem with why everyone sounds to be taking such a laissez faire attitude with your health. 

  • Editgrl
    Editgrl Member Posts: 903 Member
    I don't understand

    Have you had an exam since the bleeding started?  It seems to me you would be referred to an ob/gyn with your history even before a scan.  What was your CA-125 prior to surgery?  It is not always a good indicator...  mine was 8 prior to surgery, went down to 6 during chemo, now at 7.  I have heard of HE-4 but have not had that test myself.  However, I think it would be a good idea to ask for it.

  • Kvdyson
    Kvdyson Member Posts: 790 Member
    6 weeks seems like a long time to wait

    Hi Tia , 6 weeks seems like a long time to wait for a pelvic CT scan (or maybe I'm mis-reading that timeline?) given your history and symptoms. Are you able to move that up sooner? Kim

  • BabyCoach
    BabyCoach Member Posts: 95
    edited June 2016 #6
    6 weeks?

    really? Stomp your feet and move up that scan!

  • ChrysalisMoon
    ChrysalisMoon Member Posts: 4
    edited June 2016 #7
    Thanks, I see my GP Tuesday

    Thanks for the responses. I made an appointment with my GP for this Tuesday to discuss things with her. I do not know what my CA125 was the one time I had it done, I will try and find out. My GP did a quick cursory exam, but couldn't see anything. I have a history of childhood sexual abuse, so prefer only being examined when my life is quite possibly in peril, nothing short of this will motivate me to subject myself to that. I believe she thought it would only take them 2-3 weeks to schedule me, so maybe she can push for an earlier date, given I'm still bleeding & experiencing pain. However, I'm in Canada and there are always long lists/waits for everything, so I might simply have to tough it out.

  • Sandy3185
    Sandy3185 Member Posts: 229 Member
    So sorry!

    So sorry to hear about your monsterous childhood experience. The scars from this abuse do last a lifetime. you must allow yourself to escape the shackles of your experience and get the help you need. I hope I don't sound too dramatic but the experiences of our childhood are knit into the fiber of our being. I hope your doctor is able to get your scan moved up. Love and hugs, Sandy

  • Kikig
    Kikig Member Posts: 3
    So sorry

    I was thinking the same thing as everyone else.... call everyday and be a pain to get your test moved up if you can.  

  • BabyCoach
    BabyCoach Member Posts: 95

    what's happening? You have been on my mind. Have you been able to have that scan yet? Holding you in my heart until I hear. 

    Mary Ann

  • MAbound
    MAbound Member Posts: 1,168 Member
    HE4 test vs. CA-125

    This thread motivated me to ask my gyn-oncologist/surgeon why he does the CA-125 and not the HE4 test and here's what he told me:  

    He likened it to the controversy about testing men with a blood test for prostate cancer. Too many false positives lead to unnecessary invasive testing or treatment because of it's high sensitivity to not only the presence of cancer cells but any inflamation from other causes in the body. It can be an indicator, but he feels it's one that presents more problems, like making already anxious patients more so, than it helps. Endometrial cancer tends to metatisize to the lungs (hence why they check the para-arotic lymph nodes as well as the pelvic ones for radical hysterectomies) and having a lung biopsy is a bigger deal than getting endometrial tissue sample, so I can see his point.

  • DrienneB
    DrienneB Member Posts: 182
    edited August 2016 #12
    Bleeding and Pain

    Hi TIA,

    I don't know anything about HE4, and am interested in all the info. that you and others have provided about that. It's brand new to me.

    I also have blood and pain and it is a little more than 3 years since my total hysterectomy, etc. for Stage3/Grade3 uterine cancer. My gynecologist has biopsied the blood in my vagina, and it is not cancerous. It is granular and believed to be from ruptured surgical scars. Three months ago, a bloody polyp appeared in my vagina. It was also biopsied and showed no cancer cells. Since the blood is continuing, I will ask him about it when I see him next week. I am also very prone to infections in that area now as it is often irritated.

    However, I don't think these things described above, alone, would cause pain. I have pain in my groin every other day and pain in my pubic area almost every time I lie down. There is also mind-numbing pain every time I urinate when I get a vag. infection, which is now OFTEN. (This is probably common.) But my own pain probably comes from severe nerve damage as a result of chemo combined with widespread lymphedema (feet up to middle of ribcage). And I don't think either of these thing apply to you.

    Hope this helps a little. I would encourage you to get a good exam by your gynecologist, as difficult as it might be. Wshing you all the best,