That Tumor Marker Test

I am writing this Sunday evening.
I sat down to read the comments from the blog and this one from Marcy caught my attention:
Hi I saw your post and was hoping for an update to your blood tests to see what your markers are after chemo. I love your quilting and needlework. I think about you often and hope you are feeling and doing well. Love your blog. Keep up the great work, Jo! Take care of yourself.”

That reminded me…I should probably check yet again to see if there are any results. Nope, none.

If you missed my latest medical run around, you can read about it in THIS POST.

If you’ve been following along with my cancer journey you know that my blood test that normally takes about eight hours to get back if I have it done at Mayo Clinic. I had the blood drawn locally back on March 21st. They sent the blood to a lab in Utah (I’m from Iowa), and told me not to expect the results until March 29th.

Well as I write this, I have checked for results several times a day since March 28th…still no results. It’s March 31st when I’m writing this. UGH.

If I called to check on it, I’m sure I’d get an “it was the holiday weekend” response. It’s okay. I’m not going to let it bother me until Tuesday afternoon. If I haven’t gotten results by then, I’m going to request a new blood draw from early Thursday morning. I will drive to Mayo Clinic and have a new blood draw and the results will be back before my doctor’s appointment on Friday. That’s the plan in my head…we’ll see if I’ll have to instigate it.

There are still no test results and that’s why I haven’t given you an update. I’m so sorry that there are no answers…Trust me, I know it’s annoying. I’ll let you know when I know more. Thanks for all of the concern and well wishes. I really appreciate it…LOTS!

UPDATE:
About two hours after I wrote this, my phone dinged. Everyone had already gone home. It was just me and the dogs.

You might not be able to read it. It says my number 1070. That’s not good.

Sadly this doesn’t come with a lot of answers besides it being just a number. Here are some things to question.
– The first sentence under the number says “Results obtained with different test methods or kits cannot be used interchangeably.”
Okay…no other tests that I’ve taken have come from this lab. They say here on this test, the normal range is 1.3 to 31.8. UGH. At Mayo Clinic, anything over 2 is considered cancer. So what that means?…I don’t know.

-I have never had a test done at this stage after treatment. I have no idea if my number was supposed to plummet or if that happens slowly. The last time I had this done, I wasn’t tested until I was six months out. I took this test at 3 weeks post treatment.

-I was told that the treatment is supposed to still work for some time after the initial treatment…so it still should be working now.

Regardless…this isn’t a good number. It really is posing more questions than answers. UGH.

I ended up writing a note to Mayo Clinic saying:
“Hello…My test result finally came back. We were waiting for the thyroglobulin tumor marker. I had the test done locally not realizing that they would send the sample to Utah to be tested or that it would take over a week. The number is high. 1070. But as I am looking at the result is says, “normal range is between 1.3 and 31.8″. From my past experiences, I don’t believe the test that was done is on the same scale or values as Mayo Clinic uses. I was told in the past that anything over 2 was suspicious and that cancer might be active. I don’t know if this test number will even be helpful being it seems to be on a different scale. I am wondering if I need to have the test redone at the Mayo Clinic so we are comparing results on the same scale. I would be happy to be retested at Mayo Clinic before my Friday appointment. Please let me know if that is what you recommend.”

So…hopefully they will get back to me. I swear, I have the worst experiences with my medical treatment. It’s okay. If someone was going to have it, I’m glad it’s me. I have nurses and smart kiddos to bounce this all off of to see if I’m being ridiculous.

Either way…I’ll know more of Friday, and Friday is only four days away.

29 thoughts on “That Tumor Marker Test”

  1. So sorry that it has taken so long to get your results. I think you have every right to be frustrated.

  2. This has got to be beyond frustrating! We get impatient to hear your results but I can’t imagine how you are able to deal with this so calmly. If only there were some way to harness all this energy to fight this cancer we would lick it in a flash. Keep fighting and know we are all praying for you.

  3. This doesn’t look good, and I’m hoping that Mayo doctors agree that a re-test is in order, and that the number drops, and continues to drop.

  4. So sorry you have to wait so long. On results like these waiting is hard. Hope you get results soon and they are good.

    Praying for you Jo!

  5. I know how frustrating these experiences are from my husband’s lengthy illness prior to his death and my own experiences. His monthly blood tests were needed to determine what changes were needed for dialysis. Lost samples, lost results, not mailing blood samples on time, etc sometimes overwhelm patients in spite of the fact that they get excellent service the other 90% of the time. You are an optimist at heart. Just wrap yourself in your positive outlook and the certain knowledge that your blog readers have you wrapped in well wishes and their hearts.

  6. How frustrating! When the answer you were waiting for isn’t really an answer and just brings more questions. I hope things will look better when you have your appointment Friday.

  7. Martha W in WY

    I can understand your frustration, Jo. You wait and wait and wait some more and in the end have more questions. I’m wondering if you can have your blood drawn at Mayo prior on Thursday. If so, it would be so interesting to compare the two results. You hold such a special place in all our hearts. We are all hoping that this last treatment did work.

  8. This must be so frustrating for you, Jo. Thankfully, you’re not one to just sit back and wait until the hospital sorts it out. We’re all rooting for you and have you in our hearts.

  9. I know you have daughters in the medical profession so please do not take this personally. Having such frustration with lab and other testing LACK of timely answers cannot be good for the patient. It is one thing for the tests/analysis to require a certain amount of time AND letting the patient know as much of this sort of information can and should be considered a big part of their treatment.. This just seems to be another example of a lack of common decency.. I am so sorry you are being subjected to these challenges. It is good that you are receiving such an outpouring of love from your readers. Hope it makes a bit of a difference.

  10. Everyone has said what I wanted to say so I will just tell you that you continue to be in my prayers and thoughts. Hopefully Mayo can give you either more info or do another test or both and then doctor can tell you what it going on.
    Love and prayers

  11. Barbara Firesheets

    Jo, thinking of you and hoping a re-test will be in order, even if it’s just for peace of mind. Your positive outlook is an inspiration to others. You are in my prayers. ❤️❤️❤️

  12. Please INSIST on a retest.
    What a frustrating and aggravating experience.
    I have no earthly idea if this type of testing is newer. What I ran into was newer tests were not standardized so it was practically impossible to interpret for decisions moving forward. I am surprised you ran into this situation at Mayo’s flagship facility. Here’s hoping for better news on Friday.

  13. Oh, Jo, how incredibly difficult to deal with. I am praying that the test disclaimer means they are using different measurements and processes. Am praying Mayo gets back quick and gives you a proper blood test before your dr. appt. Being your own advocate is not for the fainthearted. So sorry, Jo.

  14. Hang in there ! You are so brave and I love how positive you are ! I’m praying for good results by Friday ! !

  15. That is a concerning number. Is it lower than the test you had before this round of treatment? Even so, if a different process was used…ugh. I hope Mayo gets back to you quickly with some advice.

  16. Prayers for continued healing. Prayers for you and your family. Prayers for your good attitude to continue. More and more prayers and love for you daily. You are always in my thoughts and prayers.

  17. So sorry the number was not what you were hoping for. Hopefully your doctor visit on Friday will go well and you will be able to get more information and answers. Continued prayers for your recovery.

  18. My daughter-in-law is a phlebotomist and she says that the test labs have different scales that they measure your results by. I would definitely have Mayo do a blood draw and go with their results. I’ve had different results from different labs in the last few months too. Praying for you.

  19. Thank you for the update, Jo. I am so sad you are going through this. You and your family have been through so much. You have done incredible things in your life since Kramer’s passing. I am praying for you that Friday has some answers that your are looking for. I hope you’ll consider getting that second bloodwork. You have done so much for the quilting community. I hope our well wishes and prayers are comforting you. Sending prayers and love.

  20. How is it possible that I can feel so much love for a lady who I don’t know personally, whose blog I started following years ago just because she is a quilter (so am I) and she reminds me of my aunt? Jo, I hurt for you as you wait for a response and clarification on these test results. The unknowns are so hard. Love to you and prayers for you, dear lady.

  21. Glad you are on top of it!
    If it were me, I would push for a new blood draw on the Thursday. I hope they order it for you.
    Medical issues are a part time job, at least!
    Best wishes from Oregon

  22. Jenni said very eloquently what I have been feeling. You have helped so many through your posts and uplifting attitude. Thank you so much. Sending prayers your way.

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