Follow up Protocol

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?


  • 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.

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

    CountryLiving & Kastoyles 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?   
  • kastoyleskastoyles ✭✭
    edited August 3
    @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?
  • @BeamBlossom I have only had one follow-up with another scheduled for early September but each time I have blood work done including CA125.
  • @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.   
  • 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.
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