I have just finished all my chemo treatments and today had a discussion about follow up with my oncologist, I am shocked to hear that followup does not include CA125 blood work or CT scans, it will only include a physical exam, it will be up to me to monitor myself for physical symptoms that might indicate a re-occurrance of the cancer. Is this typical? Has anyone else been told this is how their followup monitoring will be managed?
As for a post treatment plan (they call it surveillance), at least here in Ontario there really isn't any standard. It's one area you have to advocate to get the followup you feel you need.
You should also ask for or receive a transitional appointment (moving from treatment to followups) which outlines your future care. And yes, every province and situation for the person is different.
And yes, it is most important to advocate to get the followup you feel you need.
CountryLiving & Kastoyles ...do all of your followup appointments include the CA125 ?
I can't figure out how a physical exam is of any use to detecting a re-occurrence of the cancer, wouldn't new tumors have to be incredibly large to be detected by a physical exam?
My gyni/onc did also mention self monitoring of symptoms going forward, this is quite frightening to me. as I had no symptoms with my original diagnosis. I did experience some a few weeks later, but by then there were 4 large tumors. I would hope that there would be intervention next time before the cancer gets that well established.
Fearless: wow, you are getting a lot fo surveillance! I'm sure you can be confident that anything new will be caught very early with CT scans every two months. Unfortunately, my doc did not mention any clinical trails during my transition appointment.
you can ask you GP for a requisition for the CA125 blood test, we have to pay $35 for it to be done as it is not covered.
But you are right. It is important to be your own advocate and push to get what you feel is necessary, not just for your physical being but also your emotional state. I believe OCC will be launching a survey soon and all of these issues should come out loud and clear.
On another note though, I can only imagine how terrifying it was to find out about recurrence so quickly following your first line treatment. Cripes I was a year and half and it still terrified me. And now, when I think about it I wonder if the recurrence was there much earlier but went undiagnosed. Perhaps, perspective-wise you have been lucky that the recurrence has been caught so early. I do know of several women who had very quick recurrence and then have remained stable ever since. So don't assume anything, don't give up hope. We are all so so so different in our response to the disease and to the treatments.
And also, while you say there are no clinical trials that match up with your circumstance right now...that is also ever changing. Had my recurrence been caught a month before it was I would have told the same. The PARP inhibitor that I take was only being tested on women who were BRCA postive and I"m not. But happenstance was the launch of a new trial to determine if the drug might have some positive impact on a woman who doesn't have the BRCA mutation but in the core of her original tumour has an HRD mutation...which it turned out I did. So, almost two years later, my recurrence is not gone, but is not growing and it's stable. And I can live with that.
So hang in gal. Like they say, it's not over until the fat lady sings and since I managed to gain far more weight than anyone could imagine when I was on chemo...I'm not planning to do any singing anytime soon. Stay in touch and let us know how you are and what we can do to support you....anytime.
Regardless, I would say the assumption is that if your GP is ordering the CA125 it's considered the same as a man getting a PSA. They don't distinguish if done outside a cancer center whether you are survivor or not and like the CA125, the PSA has a cost attached. Whether or not covered by private insurance, if not, it's still tax deductible though.
All of that said, the 'rules' (at least in Ontario where I am also) can be awfully confusing sometimes.
You do have a legal right to copies of all reports on your health. If the nurses are not allowed to provide your CA125 results, then I'd suggest asking (and if that doesn't work, then demanding) that you receive a copy of every set of blood work results as they are produced...either as an email attachment or by mail or, at the least available for you to pick up. This is one of those times where advocating for your own needs, whether physical or emotional, is needed.
Glad to hear you are still getting uour blood tests. It is my understanding that even if levels of CA125 are being tested they can sometimes not be a true measure of disease indicators. So I do understand your concern. What they do look at are trends in the measurement of CA125 to see if they are consistently trending upward, downward or stable. I also believe the normal range is anything under 36. For some, CT scansay be recommended if the trend is changing and /or every 3, 6 months type of thing. Every case is different so I am generalizing. Basically your Oncologist would be best to ask and if you want to know the reasoning behind it, just ask. Say something like "help me understand why we do/don't do "X"? See what they say or ask what they are looking for as "markers" going forward
Does that help?