My ovarian cancer is currently unstaged but I’m thinking it’s been caught really early and I’m one of the lucky ones?
I had a large mass removed which was pushing against several organs but luckily only the mass needed to be removed - the ovary was as well although it wasn’t found so it’s presumed that the mass had engulfed it.
Prior to surgery my CA125 was over 200 and CA19-9 was over 900. Yesterday my levels are now 12 and 20 respectively.
However my gynaeoncologist is still saying that at this stage he has no idea if there is any further cancer in either my uterus or abdomen, although the surgeon who did the surgery said there wasn’t any present. Although it wasn’t a gynaecologist who performed the surgery so perhaps he wouldn’t know if it was in the uterus? As such chemo may be an option or there is a discussion about taking me back to theatre to have a look at the uterus and abdomen again with the gynaeoncologist.
But I’m thinking, if the bloods have returned to normal levels, is this not an indication that there isn’t any more cancer and that it was likely stage 1?
Hi Glass not full
The levels of CA125 and CA19-9 are now both well within normal range.
The significant drop would suggest that there is no active cancer. This is how things were explained to me.
I would presume that post op pathology was done and I would be asking about that and in particular about whether there was any LVSI present. (minute cancer cells in any blood/lymph vessels) I would also be asking about the grade of the cancer cells. It maybe worth asking your GP to talk through your results- they should have been sent them.
My feeling would be to ask about whether a hysteroscopy could be done with a biopsy of the womb lining. Maybe an ultrasound and if indicated a CT. This would be less invasive than surgery to begin with.
It does sound positive to me but I would, for my own reassurance, ask for some more details/checks to be on the safe side. Mine was stage 1 and contained so removed during surgery, levels dropped right down, but I did still need some follow up treatment due to the grade and LVSI. So the treatment was to essentially mop things up and help prevent recurrence.
Hope this helps.
Jane
A couple of things to think about, and I’m speaking from the point of view of having a recurrence just months after successful treatment, although cervical and not ovarian cancer.
Scans are not able to show everything-microscopic cells do not show up for example-so having an mri which doesn’t show cancer doesn’t mean it’s not there. My mri was clear after treatment, but some cells must have remained and grew again, over a few months. I had no symptoms of a recurrence at all, but it was spotted as something tiny at a visual examination, which could have been scar tissue. A scan would not have picked anything up then because it was so small.
With no symptoms, I would not have known anything about it because I felt perfectly well so I was very lucky. When I had an mri to check this suspicious area, after a few weeks, the cancer was by then 11mm in size so it could be seen on the scan. It turned out to be quite aggressive and grew quickly.Your surgeon has said all the cancer was removed, but he would not have been able to see cancer at a microscopic level, so there can never be a categoric guarantee. None of my team ever use words like “cancer free” for this very reason.
I think I personally would want a gynaecology surgeon involved in any exploratory surgery or womb biopsy, as they are the experts. I’m not saying this to scare you, but based on my own experience I would be wary of assuming everything might be ok without knowing more. I’d also be asking about mop up chemo being potentially required. I think you just need to reassure yourself about everything to move forward.
Sarah xx
It was how it was explained to me but it does sound positive from what you say.
I would have expected LVSI to be mentioned, if they had been present but I would ask whether there could have been any minute cells anywhere that would not be picked up by scan and would not yet show in blood results.
MRI sounds a good next step. Grade 1 sounds positive but as it was rapidly enlarging then I would be asking for reassurance that whether any further investigation or treatment is needed or whether monitoring/checks would be sufficient/
An ultrasound, either internal or abdominal would be able to measure the womb lining thickness and also check for any lumps etc. A hysteroscopy can be done in outpatients and is a small camera where they can have a look, at the same time a biopsy can be done to check for cancer cells. There may be a reason why they want to check surgically (maybe it gives them a chance to remove anything at the time?) but I would be querying whether the MRI and hysteroscopy can be done first.
It may depend on what they mean by taking you back to theatre. Sometimes hysteroscopies can be done under GA or it could be a key hole thing where they can have a quick look.
No harm in asking though
Jane
