Hysterectomy scheduled on 1-3. Went for a second opinion. This gyn oncologist says CA 125 a bad test, and as my cyst is shrinking, not growing, my risk is low. Asked me if anyone gave me any other tests re: ovarian cancer tumor markers. NO, they haven't. Does anyone know of any other tests that are available. Is it common just to rely on rising CA-125. The hysterectomy is recommended also because of my fibroids, age, etc. I am 52 but VERY active, lift weights, run etc.....I am starting to panic about having such an extreme surgery
I had an ultrasound which showed a small complex ovarian cyst. I then had a CAT scan a few weeks later, which indicated that the cyst grew smaller. It is my understanding that cancer doesn't often shrink on its own. My CA 125 elevated to 95. The second opinion guy says there are other blood tests to take. Has anyone had these, or know of them? What was your CA125 and other indicators?
In 2003 my ca-125 was 440. After surgery and 21 chemos it went down to 5. Couple of months later started to rise again. It is now at 52 and I have 2 enlarged lymph nodes and a one and three quarter spot on node behind belly button. Before diagnosis the first time I had bloating, frequent periods, tired, weight loss and constant burping and horrible pain that would subside also itchy feet and hands. Hope this helps...
did you have cysts or tumors or anything that showed up looking like cancer on a cat scan? I have some bloating, irregular periods but I am premenapausal (52) My Ca 125 was last 95 I have a complex cyst that looks like it is shrinking
Hello cip - I'm a great fan of CA125 - it has been dead accurate in my case so far. Ok, it's not 100% accurate in all cases - I don't think most tumour marker tests are - they're all still fairly new. Maybe your doc had a bad experience with it It was invented just down the road from me at Mount Vernon Hospital - north of London, UK and they have revised it and made it better a year or so back. I don't know of any alternative.
The consultants I've been treated by don't rely on it totally - they use all the other diagnostic methods as well before making decisions on surgery or chemo, but they do see elevated CA125s as very significant - mine was 700+ before I had surgery and counts in the thousands are not uncommon. Mine went down to 7 after surgery and chemo but appears to be going up again unfortunately and I do feel more unwell than a few months ago. I can't imagine how women must have felt when the CA125 wasn't available and they had to rely on docs looking at them physically and guessing (experience?!) for a diagnosis. My consultant surgeon said frankly that a laporotomy was the only way to get a full accurate picture. As for a hysterectomy, honestly it was a breeze compared to what I'd imagined. Modern surgery and anaesthesia make recovery so much quicker and I had little or no pain afterwards. OK you have some weeks of not driving etc but it soon goes - make the most of it if can!
Thank you, Pam. I have a call in to another gyn/oncologist re other options, although I do have a hysterectomy scheduled on 1-3. It doesn't sound like a picnic to me - have you had one? No one has told me I am high risk, but my CA 125 is elevated to 95 - one oncologist seems concerned about this, the other says it is a "bad test"
I read (and hear) the CA 125 can also be elevated due to fibroids, endometriosis, and a variety of other conditions. Mine elevated to 95. I have fibroids a and a complex cyst which is shrinking, not growing. Instead of a diagnostic lap, they are suggesting a diagnostic hysterectomy, which seems rather extreme to me under the circumstances. That is why I am trying a second opinion.....
Yes, I have heard about the other reasons for the elevated CA125, but haven't come across them personally. Are they proposing a hysterectomy through a vertical full abdominal incision or a low 'bikini' type one, or a vaginal type (don't know the technical terms!)? Have they said clearly why it's a hysterectomy and not just a diagnostic lap?
Because I have fibroids, I guess, and I am 52, close to menopause anyway, so "why not take everything". I am active, lift weights, run etc and am generally medication, hormone and surgery free. If I have cancer, of course it is a no brainer to me to have surgery. But, no one has told me that, or even taken any further diagnostic steps.I just walked over to the surgeons office (I work in a hospital) and asked him (via note) why no one has done any addtional tumor marker blood work on me and why they can't do lesser surgery (such as peritoneal wash to diagnose) I personally have no idea why...Do you?
No - I'm out of my experience league there. Suspect your first comment ie your age, fibroid problems etc might be the simplest explanation as you said. I appreciate your reluctance to have a full hysterectomy and all major surgery carries risks, but if they do feel it's worth doing you might want to reflect on the thought that once it's over, your problems would probably be over and any future cancer cells wouldn't find a home in that area at least. Sorry, sounds a bit pessismistic there! Good luck
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