Hello

Just finding my feet on the forum and thought I'd introduce myself. Hello all Smile

I'm a Mum of three, my youngest is16,  I work full time,and write a blog of my journey. I am  also studying for a degree in Psychology.

I was diagnosed in 2012 with a cyst on my ovary which I was convinced by my surgeon looked like a simple cyst. The journey started post surgery. I had one chemo dose and then declined. My CA125 has been very low, tested every three months, my oncologist moved me to six monthly appointments and clearly jinxed me as then my CA125 came back as 47 in May 2015. He was unconcerned because all examinations had been negative. I had a CT scan which returned with no  evidence of disease. Another CA125 in July 2015 returned a reading of 102. The CT scan was analysed again and still no sign of recurrence. I have another CT scan in September to confirm. However everything seems to point to the fact that something is not good.

If anyone else has had raised levels without recurrence I'd love to know. It was only 34 at diagnosis.

LA

Comments

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member
    Raised Levels

    Hi Lily,

    I am very new into the cancer world. Hysterectomy was done 6 weeks tomorrow and have had 2 chemo treatments. (One per Week.)

    Prior to my surgery, my CA125 was only 21.5. That means it was within normal ranges even with my tumor in place.  My Oncologist did another test 4 weeks post surgery and it had jumped to 80. He said he wasn't concerned since my initial PET and CT scans, and the pathology post my surgery showed no spread.  My point being, the numbers can go up for many reasons and according to my doctor, this is a marker/tool only.

    I don't know if this will help you with the answers you are seeking. But wanted to share what I have experienced so far.

    Good luck and you have come to the right place for questions and support.

    Cindi

    ps: So far, weekly chemo treatments have had minimal impacts on me.  I don't know if they will get worse over time but I'll celebrate all of my good days. This is only day 2 post my 2nd treatment so time will tell as I go along.  My blood counts were slightly down after the first treatment. Hopefully they stay high enough to continue on this path.

  • Abbycat2
    Abbycat2 Member Posts: 644 Member

    Raised Levels

    Hi Lily,

    I am very new into the cancer world. Hysterectomy was done 6 weeks tomorrow and have had 2 chemo treatments. (One per Week.)

    Prior to my surgery, my CA125 was only 21.5. That means it was within normal ranges even with my tumor in place.  My Oncologist did another test 4 weeks post surgery and it had jumped to 80. He said he wasn't concerned since my initial PET and CT scans, and the pathology post my surgery showed no spread.  My point being, the numbers can go up for many reasons and according to my doctor, this is a marker/tool only.

    I don't know if this will help you with the answers you are seeking. But wanted to share what I have experienced so far.

    Good luck and you have come to the right place for questions and support.

    Cindi

    ps: So far, weekly chemo treatments have had minimal impacts on me.  I don't know if they will get worse over time but I'll celebrate all of my good days. This is only day 2 post my 2nd treatment so time will tell as I go along.  My blood counts were slightly down after the first treatment. Hopefully they stay high enough to continue on this path.

    Hi, Lily Ann and welcome.

    it is always best to meet under more favorable circumstances. It sounds like you had a cyst but it is not clear to me if you had cancer or not. Were you diagnosed with uterine cancer? If so, what is your stage and grade? Mine is stage 3a, grade 3. So far I have no evidence of disease.

    Warm Wishes,

    Cathy

  • Lily_Anne
    Lily_Anne Member Posts: 39
    Abbycat2 said:

    Hi, Lily Ann and welcome.

    it is always best to meet under more favorable circumstances. It sounds like you had a cyst but it is not clear to me if you had cancer or not. Were you diagnosed with uterine cancer? If so, what is your stage and grade? Mine is stage 3a, grade 3. So far I have no evidence of disease.

    Warm Wishes,

    Cathy

    Stage 1C with grade 3 clear

    Stage 1C Ovarian Cancer with grade 3 clear cell and grade 1 serous cells were identified in my cyst, so the hysterectomy was a precaution. I regret choosing to lose my cervix but can hardly request it's put back, but that does bug me even after three years. Considered a cancer patient and having mini meltdown. It's no evidence of disease but now am worried about next scan because of the big jump in a short space of time. My consultant is normally Mr Cool, so now he has freaked me out by putting me back with a specialist cancer nurse.

    LA xx

  • AWK
    AWK Member Posts: 364 Member
    Lily_Anne said:

    Stage 1C with grade 3 clear

    Stage 1C Ovarian Cancer with grade 3 clear cell and grade 1 serous cells were identified in my cyst, so the hysterectomy was a precaution. I regret choosing to lose my cervix but can hardly request it's put back, but that does bug me even after three years. Considered a cancer patient and having mini meltdown. It's no evidence of disease but now am worried about next scan because of the big jump in a short space of time. My consultant is normally Mr Cool, so now he has freaked me out by putting me back with a specialist cancer nurse.

    LA xx

    Hang tough

    I was Dx with Stage IIIC UPSC and an automatic Grade 3 in April of 2013.  Other opinions had Stage IVB due to difference of opinions related to the furthest met.  Either way my treatment plan wouldn't change.  I know the days until these visits are very stressful.  My view is I am always happy when they "pull in the troops" as that means I am getting the best possible care.  Over reactions are better than under reactions although it is very hard on us as patients.  For me CA125 has always bounced along, up and down and isn't a great indicator.  Hang tough and I am keeping you in my prayers.  Anne

  • Abbycat2
    Abbycat2 Member Posts: 644 Member
    AWK said:

    Hang tough

    I was Dx with Stage IIIC UPSC and an automatic Grade 3 in April of 2013.  Other opinions had Stage IVB due to difference of opinions related to the furthest met.  Either way my treatment plan wouldn't change.  I know the days until these visits are very stressful.  My view is I am always happy when they "pull in the troops" as that means I am getting the best possible care.  Over reactions are better than under reactions although it is very hard on us as patients.  For me CA125 has always bounced along, up and down and isn't a great indicator.  Hang tough and I am keeping you in my prayers.  Anne

    I understand, L A

    This CA experience is incredibly stressful - more so as a mind game. I am at that point in my journey- UPSC stage 3a almost 2 years out from my hysterectomy-that when I "forget" about my cancer- I feel blessed. I will not be surprised if I reoccur; I expect it with this killer. So I try to make every moment of every day matter. Really, all each living human being has is this moment of this day. Nothing is promised for tomorrow. I don't waste my time with childish, frivolous, or mentally ill drama that often accompanies Bipolar D/O or Borderline Personality D/O. I spent most of my career working with the mentally ill, both as clients and- sadly- as fellow employees. Even now. I have infinite patience with the mentally ill patients but far less so with fellow employees. 

    Cancer has taught me a few invaluable lessons!

    Wishing you all the best!

    Cathy

  • pinky104
    pinky104 Member Posts: 574 Member
    Lily_Anne

    I haven't had raised levels without a recurrence.  I just want to let you know that I had stage IVB UPSC five years ago, and at the time of diagnosis, my CA 125 was only 94.  So many people have much higher numbers with lesser stages of this cancer.  Mine had spread to both ovaries, the omentum, and the small intestine, so I don't know why my number was so low.  I do know that the CA 125 is sometimes a good indicator of cancer and sometimes not.   I was originally found to have a big polyp, which my GYN thought would be benign.  In fact, I'd previously had a benign one ten years before, which had been removed..  But I had a D&C and UPSC was found, so I was quickly referred to a GYN/Onc in another city.  He ordered a CT scan, which was definitely positive, so positive it scared me.  It described a "cake-like formation" in my omentum which sounded like layer upon layer of cancer.

    You might want to get a CT scan done elsewhere as a double-check.  The CT's are only as good as the people who read them.  My sister, a nurse, once worked for a doctor who had a partner reading his mammograms.  The partner was a drunk and missed a woman's diagnosis of cancer.  He may not have even read the report.  By the time the cancer was found, it was too late for the woman.  I wouldn't want something like that happening to you with your CT scan results. 

    On the other hand, sometimes other conditions in our bodies can skew the results of lab tests.  I'm not sure if that can happen with CA 125's or not.  Inflammation in the body can sometimes throw off results, so don't panic yet.  I think you are probably right in sensing that something is going on.  Trust your intuition and keep checking on it.

     

         

  • molimoli
    molimoli Member Posts: 514

    Raised Levels

    Hi Lily,

    I am very new into the cancer world. Hysterectomy was done 6 weeks tomorrow and have had 2 chemo treatments. (One per Week.)

    Prior to my surgery, my CA125 was only 21.5. That means it was within normal ranges even with my tumor in place.  My Oncologist did another test 4 weeks post surgery and it had jumped to 80. He said he wasn't concerned since my initial PET and CT scans, and the pathology post my surgery showed no spread.  My point being, the numbers can go up for many reasons and according to my doctor, this is a marker/tool only.

    I don't know if this will help you with the answers you are seeking. But wanted to share what I have experienced so far.

    Good luck and you have come to the right place for questions and support.

    Cindi

    ps: So far, weekly chemo treatments have had minimal impacts on me.  I don't know if they will get worse over time but I'll celebrate all of my good days. This is only day 2 post my 2nd treatment so time will tell as I go along.  My blood counts were slightly down after the first treatment. Hopefully they stay high enough to continue on this path.

    I wish you continued manageability with that ole Chemo.

    Good to hear you are managing Chemo, know that we are with you all the way  up the mountain. ( notice I didn't say anything about valleys ,WE ARE NOT DOING VALLEYS) UP and out of cancer's way is my today's wish for you. More than Nuff love Cindi, we gained when you happened by with your can do bubbly spirit, despite pained body.

     

     

    PS:We'll do the valleys if it comes , don't worry..No warrior will be alone on the battle field,  just not jinxing by sending welcome card to valleys.

     Moli.