I've been a lurker since I was diagnosed with colon cancer in Oct '19. I am, even now, not sure about being a participant because I'm not sure I have anything to contribute or to ask. I only want to vent, and then to see if anyone of you can set me straight re my expectations. I apologize for the long post and realize that few will get through it all (I’m sure you have better things to do with your time) but it was good for me to vent (if allowed).
I think I should feel elated with my most recent test results, etc., but all I feel is numb. I have had a lot of drama in the past two years. When I had my emergency surgery, I cried because of my ileostomy but I have never cried, not even to this day, because I was diagnosed with stage iv cancer. I have a practical mindset so all I wanted were the facts and next steps. I’ve cried from frustration when I didn’t get these things, but not because of cancer.
The past few months have been intense for me. I’ve had the trifecta of tests: a colonoscopy, CEA blood test and CT scan all within a month. I was stressed, to say the least. I wanted more clarity than I received, and yet, I’m told I’m NED so I should just “move on”.
My colonoscopy went well – I guess – because my surgeon completed the procedure but didn’t talk with me or schedule a follow-up phone meeting with me. The nurse said I don’t have to see him for another 3 years. I’m confused. My sister had no polyps but he wants to see her in 2 years and yet, I’m the one with cancer, and he told me three years. I just wish I could have spoken with him to understand why, and to ask what he did see during the procedure.
My CEA is 1.8, which is good but I do wonder if it should be even lower since my CEA did rise with cancer, but not into the double digits.
I feel so unhappy with my oncologist. He’s done everything correctly. He’s ordered tests, got me great specialists, even ordered tests that my surgeon should have and didn’t (in order to schedule my ileostomy reversal), and yet, he doesn’t listen to me, and he and I do not see eye to eye on what is important for me to know about my CT scan results.
I am a doctor’s worst nightmare. I look at my actual CT slides and read the report from the radiologists. I have around 9 nodules on my lungs. At times, one radiologist will identify a few as “solid” but I get very little consistency in the reporting. There are times when one radiologist will identify 3 or 4 as “solid” but then the next one will not identify those same nodules, but another set, even though I can still see the previously identified ones on the CT scan. Often the nodules are not sized in the report so I’m left to wonder if they have grown. The reports usually say “no significant change” or “stable”, but then all of a sudden a nodule will appear out of the blue and yet, it’s not sized or identified as new.
This past CT scan showed 4 nodules specifically identified and circled (the other 5 are still there). One is new but not sized. After looking at the CT slides and reading the report I was frustrated and upset and all the pent up stress just got the best of me and I went to my oncologist’s office to see his nurse about asking him to ask the radiologist to size the nodule he circled, and he was in a clinic so he saw me. Immediately he walked in the room and just talked and talked. Inside I wanted to shout “Shut up and listen to me!!!” Eventually, he went quiet and I was able to talk with him about my frustrations. I asked him to ask the radiologist to size the four nodules he specifically circled and to let me know the size. One of the new nodules is at my surgery site so it could be scar tissue but he circled it as a “solid nodule”. Also, my oncologist said he never looks at the actual CT scan but only reads the reports so he actually didn’t know what I was talking about when I kept referencing the circled nodules.
I also talked with him about chemo. I really wanted chemo after my VATS, but he said I didn’t take too well to chemo and he wanted to leave it for when/if I really needed it. I understand, but I can’t help but feel I missed a step in my treatment. Have you had VATS without follow-up chemo?
After meeting with him, I told him I’ll complete the blood test every 3 months but I only want one ct scan in Dec. It’s been 20 months since my last chemo treatment so if he isn’t going to give me chemo then I want it out - I just can’t take being told I’m fine but then looking at the port everyday.
So, after over two years of surgeries, hospital stays, infections, procedures, and tests I will get my port removed in Jan and am determined to live my life as NED (is this the same as remission?) rather than as someone with colon cancer.
If you’ve made it this far in the post, thank you, and I would love to hear your thoughts.