Follow up Protocol

BeamBlossom

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?

Flowergirl

Fearless said:

Beamblossom started a discussion yesterday on that topic Tinazzie but not sure anyone has commented as yet.  NED determination is usually measured by your CA125, at least here in Kingston.  Watching it decline indicates the drugs are working and hopefully by the end you have been steadily in the 0 - 35 range which is what they consider NED.  
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.

Flowergirl said:

and they may use the CT or MRI to confirm no visible disease present. 
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.

Deletedbyrequest

I too am taken aback that there is no type of follow up protocol. I intend to discuss with my family doctor. She might agree to at least order a CA 125 every 4 months . There would be a charge but it’s better than no follow up at all. 

kastoyles

@Cecile21 -I go to Juravinski in Hamilton Ontario. When I finished chemo my followup appointments started every three months with a baseline CT scan one month after chemo and CA125 tests at every appointment. After two years I went to every  four months for a year and I'm now going every six months until the end of five years. I did have a CT scan two years ago for an unrelated issue, but other than that, unless there is something in the CA125 or physical exam that warrants attention, I won't have one (doctor won't order one).

CountryLiving

@Cecile21 I finished my chemo treatment the beginning of March. Had a CT Scan a week later and blood work CA125 included at the 3 month post chemo appt. with my oncologist. I have 3 month follow-up appts for a year I believe then 6 months. I have all my appts at Princess Margaret Hospital in Toronto. Where are you located? With Covid my appts have been via phone. I did however have to go in for the blood work. 

BeamBlossom

Thanks to everyone for your replies. i am being treated at Sunnybrook in Toronto. 

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?   

kastoyles

@BeamBlossom during the physical the doctor is checking for changes in the tissue of vagina and rectum, also any tenderness or swelling in abdomen, lymph nodes etc. I have a CA125 every visit. (except the last followup which was done by phone because of COVID) I'll get the CA125 at my next appt in October. I fill out a questionnaire at each visit, covering many areas which could lead the doctor to investigate further depending on the responses. The doctor also counts on me to be aware of changes in my body - which I think all of us tend to do after a cancer diagnosis. I'm always aware of a new ache or pain - the first thought is cancer! How many of you can relate?

CountryLiving

@BeamBlossom I have only had one follow-up with another scheduled for early September but each time I have blood work done including CA125.

Fearless_Moderator

@kastoyles It's interesting that in the almost four years since I was diagnosed I have had no more than two internal exams. The first was for the benefit of a resident during my initial gyn-onc appointment, the second 2 years later when my CA had shot up to 350 and a visiting gyn-onc (mine had left her practice) did one before setting me up for a CT.  No idea why my original doctor didn't feel it necessary as part of normal surveillance.  As for now, being on a clinical trial I have a CT every two months so I expect that makes a physical internal exam a bit redundant. I'm also followed every month so full blood work and a CA every month along with the CT every two has been a  benefit of the trial.   

BeamBlossom

Thanks for your replies ladies. Kastoyles, I did not know that this was the intent of the pelvic exam, I appreciate this information. I can see how the pelvic exam would be useful if the new tumors were on the vagina or rectum, this is just a small part of the overall pelvis/abdomen area and as I understand it, a recurrence could happen anywhere. It leaves me to wonder how adequate this is as a surveillance tool. 

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.

tdubs17

I too found it strange that there is no CT or CA125 scheduled for followup.  I will be asking for it tho as said before I have never felt any symptoms to begin with either.  Scares me they wait too long before starting treatment on reoccurrence etc.  

Fearless_Moderator

@tdubs17 I do agree with asking to have CA125's during surveillance but there is medical evidence that clearly shows that with a recurrence, starting treatment early as opposed to when the patients starts experiencing discomfort has no effect on longevity. So starting early just means an immediate impact to your quality of life that can often be put off for some time with the same net effect. I know, it sounds crazy but it is what it is.  

kastoyles

@tdubs17 @fearless and @BeamBlossom - with COVID, my last follow up was over the phone and did not get my

CA125 test. My next appointment is scheduled for October 28 - I'm hoping I can get into the clinic this time. It will be a year since my last CA125 and physical exam.  I agree with Beanblossom, we don't always experience symptoms, that's why I feel better having the doctor check things out. I just passed my fourth anniversary since last chemo, one more year of monitoring and I'm on my own...finding that a little scary to think of.

BeamBlossom

@ kastoyles ... that is scary for sure, try to think about the celebratory part, you wouldn’t be spun out on your own if they thought you needed closer monitoring.
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. 

Congrats on getting to 4 yrs! That’s marvellous!! What was your dx? 

clmcinnis

I find it disappointing that the follow up protocol is not the same throughout Ontario. I was told at Juravinski I would have a CT 3 months after finishing chemo which was April 27. Due to Covid my peritoneal port couldn’t be removed (elective surgery) and I finally got a date end of August. Mid August I was getting “menstrual” type cramps so at my Dr appointment I mentioned this when she did an internal. Was then booked for a CT September 9. My cancer had returned after only 4 months. It’s anyone’s guess what may have been discovered had it been done earlier. I’ve already had one chemo and I’m reading a book How To Starve Cancer and will be seeing a naturopath. It’s crunch time. As an aside. My CA 125 marker was 6 on September 9. Not eligible for clinical trials or drugs. 

Fearless_Moderator

@clmcinnis I agree the inconsistency of follow up protocols is very frustrating for all of us. Comparing notes with others just in Ontario I was shocked to find how different the approaches are.  What does seem common following first line treatment is a set of "check ins" every 4 months for most, although that's not even reliable to expect. And that said, CA125's and CTs don't seem to comprise part of that check up.  I can understand a reluctance to scan everyone regularly unless there is some reason that would prompt investigation at that level.  And while I do understand and agree that the CA 125 can be awfully misleading....it is still the only marker we have and at the least a trending could provide evidence of more steps in surveillance.  Somehow I have yet to convince the medical profession of my view on all of this   

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.   

kastoyles

@beanblossom -  I was diagnosed with Stage 1 Clear Cell - the tumour breached and cells likely spilled into my abodomen. Had six rounds of chemo to obliterate the little suckers.. I asked the oncologist about getting a CA125 locally and that may be an option in the future. Until I finish my follow-up sessions, he wants it done at the cancer center.

BeamBlossom

@kastoyles It easiest to get the blood work done at the cancer centre while in treatment for sure. I finished my last chemo on July 3, I hope to have CA125 done with my follow up appointments with my oncologist going forward, but that will be only 3x a year unfortunately. So, for the in between, my GP gave my a “standing requisition” for CA 125 that I can get done anytime. 

kastoyles

@BeamBlossom I had it 3x per year for the first two years, then every 4 months, now every six months. My numbers have been good (up to my last one in Oct 2019)

jiselle16

@BeamBlossom thanks for starting this discussion! I too have wondered about this as well. I finished chemo in December 2016 and afterwards had one CT scan and then regular checkups since then with an internal exam and a CA-125 blood test at each checkup. About a year ago my oncologist recommended that I stop doing the CA-125 test. I was floored. It was never a good marker for me anyways, but this caused a lot of anxiety for me as it least it was some type of marker and some type of reassurance that things were going well. Basically now it's checkups every 6 months with an internal exam, and that's it. Just monitoring for any symptoms, which is kind of ironic as I never had symptoms before I got diagnosed! My oncologist and I had a thorough discussion about my concerns with stopping the blood test and he explained that it's of no benefit to find a reoccurence early. I'm still kind of wrapping my mind around this, as I always thought early detection was key, but it seems to be different when once you are diagnosed. Another frustrating part is that if you get the CA-125 test done outside of a cancer centre, say at your doctor's office, it costs $35. Or at least that is the case in Ontario. I live over an hour away from my cancer centre, so I would usually get the blood test done at the lab at my local doctor's office before my checkup, so the results would be ready by my checkup appointment. But by doing it this way, it would cost me $35 each time. Thankfully my medical benefits through work cover it, but I always found it odd. You would think that once you are diagnosed with cancer, the cost of the test should be covered, no matter where you get it done.

kastoyles

I finished chemo in July of 2016. I just had a f/u with my oncologist this past week. This time it was in-clinic but my appt six months ago was over the phone, so, obviously no physical exam or blood work. I had both this week.  I'm in my last year of f/u with the doctor and the next one will again be over the phone and in Oct 2021, will be my last physical and blood work.

I agree, it's an indicator that there is a problem looming. My CA-125 was below six this time - the lowest it's ever been. It will be another year before I have blood work done to test the CA-125. However, I'd be willing to drive to the cancer center in April to have another test done if necessary, just for peace of mind. My oncologist, and I tend to agree, would rather have the test done at the cancer center with their technicians who deal with these types of test all day, every day.

I also agree, it's  wrong to have to pay for the test after you have been diagnosed with cancer. My husband's plan doesn't pay for it. The cost can be used as a medical expense toward your cancer care along with mileage, parking (if you have to travel to your cancer center), headwear, etc.

There are different protocols for different areas of Canada, and it would seem different centers within each province. I'm in Ontario and my oncologist is at Juravinski in Hamilton.

Fearless_Moderator

@kastoyles I tend to agree with your oncologist that CA125 should be left done at the cancer center where they are more experienced in evaluating the blood work.  However, that can be challenge for those who don't live close to their cancer center or have a GP who may have ordered the test affiliated with the same hospital to which the cancer center is located. I can recall when I first started with KGH that the blood work for the CA`125 was sent to PMH in Toronto for assessment. About  a year later that changed and it's now done at KGH.  That said, I wonder if the local labs actually do the analysis themselves or if they send the blood work off to be analyzed at a cancer center.

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. 
 

jan0927

The only CA125 I’ve ever had to pay for was the initial one pre diagnosis in 2017, ordered by my GP. I’m in Ontario also, it’s ordered every 6 months by my oncologist at the Cancer Center 4 hours away, and drawn at my local hospital. Not sure why this would be inconsistent in the same province... maybe if the order comes from an oncologist/cancer center?

Bluebird

I'm in Alberta and I think my last Ca125 was maybe 4 months after my last chemo.  And CT scan was a year ago.    It's been 2 years since my last chemo and 1 year since my maintenance drug Bevacizamab was completed.  I have an exam every 6 months now.  My oncologist said only if I start having symptoms then I would get another CT.  And I assume then as well that I would only start treatment again if I was symptomatic.  I think it was discussed in the symposium about treatment and scans without symptoms.  I'm fine with that..I think if I'm symptom free, having tests and CT frequently would probably increase my anxiety

BellaDonna1959

We can all request what we want and need - we have more power than you might think.  If one oncologist or GP won't play ball - another will. We are fighting to save our own lives here. Ask for additional referrals and ask around to see who is more proactive about follow-up care and request them.  I know a few survivors who fired their first doctor in cancer care post-surgery because the follow-up care plan wasn't good enough.

Deletedbyrequest

It’s been some time since I’ve commented. Started niraparib in Sept 2020. Currently checking my labs every 2 months which include CA 125 every time . My appointments with my oncologist are by phone every 2 or 3 months . 

It still amazes me that Windsor is not part of the “My Chart” website like so many other Cancer Centres. I was fortunate to have my debulking surgery in London so that I have access to that option. However it does not give me any result from the Windsor Cancer Clinic. So I will have had two CA 125 tests in between my two oncologist’s phone Appointments without finding out what the result is. In Windsor the nurses cannot give the result out ; the doctor only . 

So I wait . Not too happy about this . 

Fearless_Moderator

@Cecile21 I can understand your frustration. It's so ridiculous that there is not one website across all of Ontario through which we can access our information.  For those treated in Toronto there is the UHN website where they can access reports and appointment schedules, but only for for those conducted at UHN hospitals..  Only in the last two years did that website add a capability to access lab reports from any hospital in Ontario so for me, who transfered treatment to KGH that gave me back my access to my own info. Now they've added a new website, at  a cost, out here where you can get your scan reports. Haven't signed up for that one yet.  But it's so inefficient and inconsistent for all of us in Ontario.

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.   

Deletedbyrequest

That is an excellent suggestion! Thank you. It will be interesting at the very least to see how they respond. 

dorisirene

It seems that in Ontario it is not protocol to have regular CT scans as part of the follow up following initial treatment.  Or is that just my hospital?  What happens in other places and other provinces?  I am getting regular CA125 tests, but my CA 125 was never high, so this is not a good marker for me.  I also never had symptoms.  

Strongwoman

@dorisirene
  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?

dorisirene

Thank you.  My frustration is probably more at the disease than anything else!  My CA 125 was 9 at the time of diagnosis, so that isn’t a reliable marker for me.  I never had symptoms- the cancer was found by chance during an unrelated surgery, and only because the doc was being extremely cautious and sent a sample for pathology testing.  I then had a hysterectomy, where it was determined to be stage 3.  So it was pretty advanced with no indications.  I was hoping regular CT scans might provide better insight into what is going on in the future. The oncologist has said she would request a CT scan if I am really anxious, but how often can I play that card?!