Elevated Tumor Markers

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Hi Everyone.  I'm new to the group.  I've been clean for almost 8 years with perfect panels except my vitamin D has been consistently a little bit low.  I just went for my 6 month check up, assuming everything is fine (like always).  Prior to the bloodwork, I had  a mammogram on both breasts (perfect) and a visit with my breast specialst who said my boobs were great! :-)  Met with my oncologist 2 days later and had bloodwork done.  She called 2 days ago (8 days after the bloodwork) to tell me she was ordering a PET scan due to the fact that my tumor marker is at 57.  Apparently she's been monitoring this all along and it has been in the acceptable range every single test since the beginning.  I don't know what my other marker levels were before, but it's 57 now. 

I'm 41 years old and have been fighting tooth and nail to get back to some semblance of a normal life since Valentines Day 2007 when I was diagnosed.  I decided 10 months ago to move to Florida and live at the beach.  If not now, when?  I've been working 2 full time jobs, 16 hours a day for the last year to pay off all debt, get my house in shape to rent out and save a pile of money so there would be no worries when I relocate to live my life-long dream of palm trees and sand.  Of course, now this happens.  She didn't want to repeat bloodwork.  Of course, my share of this (due to my crappo insurance) is $1152 due when I arrive on Monday.  I asked about alternatives, she said it would be just as expensive (CT on all areas, etc.)  I owe this woman my life and I trust her completely.  She's doing this because moving day is December 30, and she asked if I had reoccurrence, would that change my decision to go?  Well, OF COURSE IT WOULD!  I would have to stay in the terrible job I have with the crappo insurance to make sure I could cover the medical bills.

She did say that these tests give a lot of false positives.  But she doesn't even want to wait a couple of weeks.  She called on Wednesday and the test is scheduled for my first day off, Monday.  I've been reading the posts on boards here of people going through the same thing.  I can't tell whether to convince myself that the cancer has returned or that it's an anomaly and nothing to worry about.  There are a lot of crying jags happening and I can't tell my loved ones because I don't want to scare them.  I've seen everything on these boards from "my doctor doesn't use these tests because they are notoriously unreliable" to "it was nothing and the marker came right back down" to "I was a 10 year survivor and the elevated marker (numbers lower than mine) proved to be spinal cancer".

I guess I'm just hoping there are more people out there who have been through this recently who can give a little more information and share some more stories that resemble mine.  Any information would be greatly appreciated.

Comments

  • bevin
    bevin Member Posts: 1,902
    edited October 2014

    I dont have any experience with what you are going through but wanted to send support for a good scan. I know others will be along soon who can offer some insight.  Hope you are well, keep us posted.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2014

    Stacy, Welcome to the site.So sorry for the reason you are here. It sounds like you have a great doctor that's right on top of it. I have no experience with elevated tumor markers, but wanted to offer my support, and bump this to the top of the active threads. Hopefully someone will come along with the same experience. Like you, I've read that test can have false/positives. I'm sending good thoughts that is the case for you. Gentle hugs!!

  • april485
    april485 Member Posts: 3,257
    edited October 2014

    Stacy, my understanding of tumor markers is limited but 57 is still on the lower side although obviously elevated for your normal. I have read that tumor markers can rise from lots of thing like an infection in your body somewhere (sinus for example) so please don't go "there" until you have your PET scan.  I think your MO is good to be cautious and order the test in case something is amiss, but please know that often people come back after posting this exact same thing and say "false alarm, all is well" so please have lots of HOPE until you can't. The Pet scan will give you information so hold on until the results are in. Hugs and know that I am hoping for white sand beaches and palm trees for your future!

  • lmcclure4477
    lmcclure4477 Member Posts: 180
    edited November 2014

    Hi Stacey,

    Just wondering how your scan turned out? My last tumor marker test was at 41 and dr wants me to retest in 4 weeks. Have you heard anything about your scan?

  • StacyLew
    StacyLew Member Posts: 2
    edited December 2014


    Thanks to everyone for checking in.  The news was bad, of course.  I've had a reoccurrence of breast cancer.  The strange thing is, it's not in my breasts, tissue, organs, etc.  It's in the lymph nodes in the center of my chest.  Which of course are inoperable.  In order to confirm the diagnosis the PET scan showed, I had a bronchoscopy.  The Pulmonologist went down my wind pipe and through my lung to biopsy the largest lymph node which is about the size of a golf ball.  Really not terribly unpleasant, no after-effects.  It's the same diagnosis as before, Invasive Ductal Carcinoma.  Apparently, if there's reoccurrence, there's a 90% chance of the same cancer.  That was the good news.  I'm still ER, PR+, HER2NU -.  The best fix for me was an ovariectomy.  They removed both ovaries and fallopian tubes.  Incredibly painful and unpleasant with the recovery time of about 14 days to feel almost normal.  So, the dream of ever becoming a mom is now over.  Of course, at 41 years old and a 2-timer with breast cancer, logic would dictate that trying to get pregnant would be idiotic and selfish.  I pride myself on not being either. 

    I'm being put on a Letrozole, which is standard for anyone in my situation. I'm also starting a clinical trial next week called Mona Lisa.  This is the second round for the drug currently called LEE 011.  They've had great success in several types of cancer, but particularly breast cancer.  If I respond to the treatment, there will be no need for chemo or radiation.  At this point, that's now what I'm hoping for with all my heart.  I did 6 rounds of hard-core chemo the first time and it very nearly killed me.  Also, the beauty of the clinical trial is that I won't go broke paying for medical bills.

    As I stated before, my oncologist is amazing.  I'm so glad she looks at that marker.  I guess I'm kind of surprised at how many doctors don't. 

    So, the dream of palm trees and sand is put on hold indefinitely.  I've cut back on work slightly, down to about 58 hours a week.  I took 3 weeks off to try and get back to normal.  I'm feeling a lot better now.  The doc put me back on Effexor which is kind of a miracle drug.  Fixes my brain, almost completely eliminates the hot flashes and is an appetite suppressant.  Which will be helpful since I'm now menopausal.

    Again, thank you to everyone who checked in.  Updates to follow.

  • keepthefaith
    keepthefaith Member Posts: 2,156
    edited December 2014

    Stacey, I just ran across your post and wanted to send good wishes your way:). Your MO sounds awesome! Good luck with the trial:)

  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2014

    Aww Stacy, I was hoping that wouldn't be the case. So very sorry about the lost dream of getting pregnant. I just hate this disease.

    I'm very happy you were able to get into a trial. I'm hoping so much that you won't have to have chemo and radiation again!!

    It's comforting knowing you have such a good MO.

    Sending good thoughts your way. Please keep us updated on your progress!! Warm hugs!!

  • Karensusan
    Karensusan Member Posts: 15
    edited January 2015

    Tumor Markers aren't always reliable so many Dr.'s don't do it. Dr.'s often look at trends and not just one jump. Mine got up to around where you are at and scan showed activity for me in abdominal lymph and liver. For some people like you and me they prove to be accurate and when they are it is useful to know if Chemo is working and when it is time for another scan. Don't worry if your markers went up with treatment they usually do and can mean chemo is working and dead Cancer cells are floating around waiting to exit the body. Hope your new treatment works

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2015

    Thinking of you Stacy. Hope the clinical trial is going well for you!!

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