A scary day: tumor markers and scan results
Picking up the phone can be hazardous to your mental health!
Not to scare all of you with the title, but for me, this was indeed a scary day.
I was heading out the door, all dressed up and ready to go to a networking function, when I received a call from my doctor at the Block Center for Integrative Cancer Treatment. He told me, with alarm in his voice, that my tumor markers were off the charts. Usually counts should be no more than 38; mine was almost 1,800! They took a lot of blood when I went Friday and unbeknown-st to me, they did a tumor marker test. They didn’t do it the previous time I visited their Chicago center, and my oncologists here never do tumor markers.
Needless to say, I was a wreck! I did some Internet searches on tumor markers and that helped. But then I just sat down and had a good cry and had a begging fit with God. I released the problem to God and admitted my powerlessness. Then I picked up a spiritual book that helped me in the past. As if an angel came to my rescue, I received an email from my fabulous cancer/life coach Flo Singer about a payment matter. I responded with the news. I immediately received a call from her.
Flo gets it. She’s a 10 year survivor of stage IV rectal cancer, and has shown no evidence of disease since she completed treatment back then. You might remember the post I did about Flo. On our call, Flo talked me down so I was calm and helped me strategize how I was going to handle the situation and take better care of myself than I have been. She even made me laugh with her bawdy humor. I decided one way to take care of myself: get the facts. I called the PET scan place, which is located only about a mile from my house, and asked if I could get my scan results a day earlier than they promised. (I’ve been picking up my scans myself rather than wait for the doctor) They complied.
I had visions of my body being eaten up by tumors. Thank God that wasn’t the case. There might be a slight progression on one of my spots, but nothing new to worry about. Of course I need Dr. Sledge to explain it to me when we go to Indy on Friday. I mean, how can the average person understand all the medical mumbo jumbo they put in these reports?
So this just may mean I need to change treatments. We already discussed what we’d do if the Xeloda stopped working. I’m going to see if they can do a biopsy to see if the cancer has changed (which sometimes happens once breast cancer metastasizes). That way, we’ll have more info to go on. If it hasn’t changed and I’m still ER/PR positive, I might see if I can get on a clinical trial that is testing a drug that reverses hormone medication resistance.
Knowing that death is not imminent, I was able to take my beloved daughter to Michael’s to buy beads (her new hobby), take a walk with my husband, and finally eat a decent meal. This stress totally and remarkably killed my appetite!
I thank all of you for your prayers and positive vibes. You know who you are. And I’ll let you know more after my visit with the doctor on Friday.
I’d be curious if any of you have had experience with tumor markers blowing off the roof like mine did. I still don’t understand the discrepancy. Please comment and share your experience!
Marie Petrides says:
AMEN…..Thank You God. Tami I coudnt stop of thinking of you today. I found myself in front of a church praying for you. I am so sorry you had such a scare…..Take care
tamilb says:
Thanks so much Marie! I really, really appreciate it. You don’t know how much!
nancy olivares says:
my tumor markers have slightly been going up since chemo stopped…last report 132….my doctor said these can change a lot with different things….they are watching them….get another check in feb….it does scare you but was told if you feel good then do not worry…….our cancer has a tendency to try and feed on those hormones, i am taking armidex right now….
tamilb says:
Good to know Nancy. Thanks!
Kathy Jo in Cincinnati says:
You’re in my thoughts and prayers. The world needs more TAMI. That’s all I can say.
michelle m says:
I have goosebumps reading your post because almost the exact same thing happened to me this past summer. For my personal experience, it meant evidence of a tumor growing but others were shrinking. They tweaked me from Xeloda to a combo with Folsadex and Dasatinib which apparently isn’t done too often. I recentlyjust started my 43 round of infusions and the markers have come down but doing Xgeva now. Sometimes, my docs tell me my elevated tumor markers are in relation to the level of pain/arthritis I get from also having Lupus. It can indicate other things besides the growth of tumors and activity of cancer. I know that’s not comforting but in my case I am still here and I chose to believe that the high counts, my last was 1300 doesn’t mean it’s gone other places (and it has not) – Sending you deep breaths, positive energy and lots of love!
Chris says:
Dear Tami… I know where your at…but you certainly turned to the right source. The word of God is sharper then any two edged sword. It was no co-incidence that your friend called you. I believe that was a God-incidence. He is faithful and hears our prayers. Never the less I certainly get where you are. By the way have you read this really great book called “From Incurable to Incredable”. It has some really good thongs in there and it doesn’t matter what the Dr’s. Say Amen?
.
My daughter also got some not good news today about her cancer…it’s the most aggressive kind of ocular melanoma.. Tomorrow her body scans…then my oncologist appt and then my total CT body scans.
We all hold on to HIM right?
Yvonne Ortega says:
Oh Tami, I’m praying for you. Fear can overwhelm us and destroy our peace. Please take good care of yourself and keep us posted. Don’t forget to laugh. I find something like DVDs of Mr. Bean help a lot.
Love & Prayers,
Yvonne
Joan Vann says:
Dear Tami,
Every blessing and prayers to you and yours. We are thinking of you with love and kindest thoughts, Joan
tamilb says:
Of course, I’ll hold your daughter in prayer, Chris. And yes, I need to read my own book again!
tamilb says:
You are such an inspiration to me, Yvonne. Yes, laughter is priceless. That’s why I love my coach Flo. She has amazing empathy and a great sense of humor.
tamilb says:
Thanks for sharing Michelle. That really helps. And thanks Joan for your prayers.
Heidi Parales says:
Tami,
This is scary, and I am glad there isn’t much change. I know nothing about tumor markers–at least you have something that helps with monitoring. I have nothing to watch except occasional scans. Keep breathing. You’re still very much alive. Am praying for you. Keep your mind fixed on the good and let the emotions be what they are.
Darlene Gant says:
I have been praying since the request came in .. tumor markers are tricky … I go by the CEA (when you have mets) .. was it CEA, CA15-3 or 27.29? And one time they gave me someone else’s results with another cancer and tumor markers that were not the above. Check it out with another lab and a “do-over” – I am hoping your Onc will do this for you and I would do a CEA and CA15-3 (just my humble opinion).
Change is imminent for us gals at a stage 4; staying ahead of the curve with a quality of life is where it is at right? Love and Light, Darlene
Darlene Gant says:
btw, found out today that there are now 3 tumors in the liver … not a great day here either. And I DO EXPECT FOR 2012 TO BE FABULOUS FOR ALL OF US!!!!!
Blessings,
Darlene
Justin says:
Hey Tami! You’re in my families prayers!
Michelle says:
Tami,
I’m glad you had the support of friends and family today to calm you. I’m sorry you had to experience such stressful news and I hope that your doctor gives you a great plan of attack when you see him in Indy. Stay your positive self!! I’ll be praying for you!
Kathy says:
Tami, you have been in my prayers. I am so relieved for you! My doctor does not check tumor markers. He says they are not reliable. His partner does check tumor markers, so I don’t know what is the correct thing to do. I personally believe that we have to pray, rely on God to get us through the scary times, and see sunshine even on these cloudy, rainy days!! Hard to do sometimes, but we have to hang in there!
Lisa says:
Hi Tami, I am so sorry for your difficult week. I will continue to pray for your health and wellness, especially in light of this new situation.
Linda says:
So glad you have only a small progression. Scanxiety is powerfully negative. You did the right thing, God sends us just what we need. I hope Dr Sledge can find a reason for the scary marker jump. Eat well, sleep well and bathe in the love of your family and friends. xx
Debby says:
Tami, there is a reason some docs go by “markers” and others don’t. Actually I don’t think ASCO recommends using them. Anyway, no doc or clinic should drop that on you without explanation. Shame on them. You need to talk to a doc in Chicago and Randy. Even if he doesn’t go by them he should have some reason as to why the elevation. Please talk to the experts. That’s what they get the big bucks for.
The ups and downs of this disease are horrible. The fact that you are able to share your trials with all of us is such a blessing. Please hang in there and GET SOME PROFESSIONAL ANSWERS.
Positive thoughts…
Debby
tamilb says:
Yes, thanks Debby. I have calls into both doctors. Unfortunately my appointment for Friday got cancelled. I demanded a call back.
Sam Elliston says:
Tami,
I am so sorry that you have had such a tough week, and it’s only wednesday. And now the appointment on Friday is postponed?
It sounds as though the others on this list are knowledgable nad have had good suggestions. It feels unconscionable that a Doctor would just say, “Hey, here are your numbers and they are very high,” without inviting dialogue and suggesitons.
then it turns out that some Doctors don’t look at those numbers and others do – ? – hard to know how to react.
You are a child of God and we are all connected. You are in my thoughts and prayers, as is the doctor who dropped the information on you in such an unkind way.
I think the person who suggested you read your book again was right on target
Love, Sam
Linda says:
Hi Tami:
I read your post with such interest; I have been following my own tumor markers very closely, and in my case they have been helpful, along with the scans. I just completed my
second cyber-knife treatment for diseasee on my spine. The first time I did that, the markers dropped to normal levels.
I have to wait 3 mos now to do anymore markers or scans.
Best of luck to you; I appreciate your posts and all you are doing!
Dana Carpenter says:
Hi Tami,
I just checked back on your blog to see how you are and I found out about your tumor markers going up. I hungrily kept reading and was very relieved about your scans.
I hope you are doing well… I don’t understand much about tumor markers, but I understand anxiety. Sounds like you have a bunch of prayer warriors already, but I’ll be another one for you until we get this under control again!
Dana
Susan says:
Hi Tami,
I don’t know if your on any kind of naturalpathic supplements that help fight your cancer, but if you are some of them will make your tumor markers rise as it breaks down the cancer that you have. It is sometimes a sign of your meds working. Some of the supplements that I am on are known to do that. Last year my scans were all clean and now my lymph nodes are a bit swollen under my arm. My Naturalpathic Dr. says it’s just my medicine working getting whatever microscopic cells that were left behind that didn’t show up on the scans. I am on Cantron, Blood root, Protandim, Collostrum, VitD3 and Probiotic. I had to omit the rest of my supplements because they interfere with Cantron. But yes I was told my node swelling under my arm is a good sign that the Cantron is working and possible higher tumor marker levels would be normal and not a bad thing. I had Inflammatory Breast Cancer Stage 3b. Doing well and trying to remember that my swollen lymph nodes are a good thing! Thinking the same for you. All good!
Susan
tamilb says:
Thanks so much Susan! That would be wonderful if that were the case! I’m taking a whole bunch of supplements, so hopefully that explains some things.
I’m so glad you are doing well and am holding the vision that you’ll continue to do well.