Tumor Markers

Options
mary625
mary625 Member Posts: 1,056
edited July 2015 in Stage III Breast Cancer

For those who get tumor markers done by your MO, would you travel just to get them or are they not all that valuable?

· Share on FacebookShare on Twitter
«1

Comments

  • hopefour
    hopefour Member Posts: 459
    edited January 2015

    I had to fight to have my hometown MO do my tumor markers. I also go to MD Anderson once a year for a check up and they don't do any tumor markers or even any blood work on me. Only had blood work at my first one year check up. Crazy I still go to MDA as its a trip for me, but I went there for my treatment plan.

    It is my understanding though that many MOs don't do tumor markers as they believe them to be unreliable. Yes, I would travel to have them done...thats just me...they may be unreliable for many, but maybe they'll we reliable for me....I don't know as I am NED and my tumor markers are steady...time will tell.

    · Share on FacebookShare on Twitter
  • peacestrength
    peacestrength Member Posts: 690
    edited January 2015

    I would travel if my local MO did not do tumor makers...I don't care if they are unreliable, like hope four said, they may work for me. I'm thankful to have over a years worth of tracking them. I pushed for my local MO to do tumor markers every 3 months along with CBC, BMP and vitamin D...this is what I have chosen for me...everyone is different in how they feel about follow up.

    · Share on FacebookShare on Twitter
  • sbelizabeth
    sbelizabeth Member Posts: 2,889
    edited January 2015

    My first visit to a breast surgeon, before my lumpectomy, included blood work with tumor markers.  My MO believes in tracking them too, so I've had them drawn at least every three months since I was diagnosed three years ago.

    I know they're not always reliable, but I have three years of trending and hope very much they stay in the normal range and that it truly means I'm NED.  I'd like to think of them as the canary in the mineshaft...that they would give us an early heads up if something's brewing. 

    Would I travel to get them drawn?  I would have a serious discussion with my MO or look for one more in tune with my opinion before I flew anywhere, but I probably would tolerate some travel for them.

    · Share on FacebookShare on Twitter
  • karen1956
    karen1956 Member Posts: 6,503
    edited January 2015

    My oncologist does tumor markers, but I don't think I would travel if he didn't do them. I have all my labs but the only ones I don't have are before bilat mastectomy....so I don't know what my tumor markers were at time of diagnosis....to me that would be important...but my numbers have been stable, so I'm not worried at this point.

    · Share on FacebookShare on Twitter
  • sheila888
    sheila888 Member Posts: 25,634
    edited January 2015

    I still see my MO every 6 months

    Since he does TM test I'll be going to him indefinitely

    If he didn't do it...Most probably would see him once a year or at this point when it's necessary

    TM test gives me some type of peace of mind

    Hugs to my sisters

    Sheila ♥

    · Share on FacebookShare on Twitter
  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited January 2015

    I am only high risker for breast cancer, but had ovarian cancer. Although my tumor was low malignant potential, my TMS were high at diagnosis & fell to normal after surgery. I go to a NCI designated cancer center University Medical center & they have drawn TMs on me quarterly for first two years & will continue semi-annually for an additional three years

    · Share on FacebookShare on Twitter
  • kathleen1966
    kathleen1966 Member Posts: 793
    edited January 2015

    I would not travel for a tumor marker test. I get them as well and the test does nothing but cause me stress. Soo much so that I skipped my last one. To each his own though, clearly some women need the test for peace of mind. Perhaps you could just get them every six months..

    · Share on FacebookShare on Twitter
  • mary625
    mary625 Member Posts: 1,056
    edited January 2015

    Thanks for all your help. I have been seeing an onc when I go to visit my son who has been giving me TM blood tests, as well as Zometa. I finally accomplished getting Zometa from local onc. I was still planning to see the onc when I visit my son, but then I got a call and letter that she's on medical leave indefinitely. I can be assigned to another onc. I feel the same way as many of you do--it's worth doing and a choice that I want to make for my treatment, if possible.

    · Share on FacebookShare on Twitter
  • babs6287
    babs6287 Member Posts: 2,021
    edited February 2015

    I have my Tumor markers done at every visit with my MO-thank god I do! They have been consistently low for the past 2+ years- until 2 weeks ago when they tested high. Since both markers were up, my MO had me do a PET/CT (which did not light up but showed a few enlarged lymph nodes) That was followed by a biopsy of two of the enlarged lymph nodes-one on my rt, cancer fee side, and one on my left, cancer side. The rt came back benign and the left didn't- I have breast cancer again. I really don't know what I'm dealing with-all of the testing is not complete but I do know I'll be back on chemo again, might need another surgery and ??? about radiation. So scared!!!!!. The one thing of good news is that the lymph nodes in question are very small and that's a thank you to the blood tests. I had no symptoms and both my BS and MO saw me within the last month and nothing else was awry.

    So, I would recommend traveling to do the cancer markers

    Babs

    · Share on FacebookShare on Twitter
  • Momine
    Momine Member Posts: 7,859
    edited February 2015

    Babs, I am so sorry you are dealing with this, but I hear you on the tumor markers. My doc does them. He explained that they are unreliable and all the rest, but his feeling is that it is one more tool, even if it isn't perfect. I tend to agree with him.

    Also, the standard opinion is that it doesn't matter if you catch mets early, so TMs are just an unnecessary expense. I have mulled that one over many times, and it simply doesn't make sense to me. I think it may have made sense 10 or 20 years ago, when treatments were limited. But now, with more meds available, it seems to me that the sooner you can slow it down, the better. With a local recurrence, there is obviously all the more reason to catch it early.

    · Share on FacebookShare on Twitter
  • clariceak
    clariceak Member Posts: 752
    edited February 2015

    It doesn't make sense to me either. Perhaps the overall survival time isn't that much longer if you catch it early, but I imagine the quality of life may be better. If you have bone mets, you might be put on bone strengtheners like Zometa to avoid numerous fractures. Brain mets or liver mets have a possibility of be treated with surgery if there are only a few spots. The list goes on.

    Tumor markers aren't accurate for everyone, but if they are, an upward trend can be cause for further testing long before symptoms and associated damage appear.

    · Share on FacebookShare on Twitter
  • fredntan
    fredntan Member Posts: 1,821
    edited February 2015

    Yes If I hadnt traveled to arlington texas for scans and markers i would be up shit creek now. we caught the bone mets early. I was NED in 6 months still am. its also possible to travel free with corporate angels if you live near big hub-DC to DFW. MO;s suck on east coast


    · Share on FacebookShare on Twitter
  • Momine
    Momine Member Posts: 7,859
    edited February 2015

    Fredntan, haven't seen you around in a while, so I am thrilled to read that you are NED.

    · Share on FacebookShare on Twitter
  • MemaGrandma
    MemaGrandma Member Posts: 5
    edited February 2015

    tumor markers will scare you if elevating, but like others say catching something early is a God send. My markers have been elevating, now 58 at last test. My PET/CT scan was clear. Even though I am confused regarding the elevated tumor marker, I am pleased with the PET/CT results. Which should I have the most confidence in

    · Share on FacebookShare on Twitter
  • mary625
    mary625 Member Posts: 1,056
    edited February 2015

    I'm going to get them in early March in Seattle. I live in Washington, DC and can't get them here even though Stage IIIC. And I get to see my son too

    · Share on FacebookShare on Twitter
  • Momine
    Momine Member Posts: 7,859
    edited February 2015

    Mary625, what do you mean you can't get them in DC? I find that so odd. I live in Greece, and I can walk in off the street and have them done at any number of convenient blood labs in the area. I can give the order for the test myself. I do not need a doctor's note (except to make the insurance pay). Each of the TM tests cost around 50 euros here. My insurance does not cover more than 600 bucks worth of testing annually, so sometimes I end up paying myself. But there is no problem about getting it done.

    · Share on FacebookShare on Twitter
  • mary625
    mary625 Member Posts: 1,056
    edited February 2015

    No way in the US can you get any lab testing done without a doctor's order that I know of. If anyone else knows different please speak up

    · Share on FacebookShare on Twitter
  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited February 2015

    you absolutely can order any lab you want. You just go to labcorp or a similarwebsite, Order & pay for what you want & go get it drawn at a lab.

    · Share on FacebookShare on Twitter
  • Momine
    Momine Member Posts: 7,859
    edited February 2015

    Mary625, I bet Melissa is right, and if it holds, it could save you some hassle. Here I have only run into the techs asking what I want the test for. For example, my mom was visiting and got a bad cold. She is very prone to getting pneumonias, so I wanted to make sure she was not walking around with pneumonia. I took her down to my local lab and asked for a chest X-ray. The tech came out to ask why I wanted it, and I explained. It simply was so that she could take the right views for my purpose. It took 10 minutes and 35 bucks to rule out pneumonia and give my mom peace of mind for the rest of her visit.

    · Share on FacebookShare on Twitter
  • babs6287
    babs6287 Member Posts: 2,021
    edited February 2015

    To get insurance to pay, a doctor must write the prescription for the tests . If you're willing to pay for the tests, then you can just get it done and pay for it.

    Babs

    · Share on FacebookShare on Twitter
  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited February 2015

    Babs has a good point. I was considering having my tumor markers for ovarian cancer (which had been reliable for me) drawn directly this way because I could no longer afford a twice-yearly gynecology-oncology appointment follow-up at about $1000.00 apiece because of high deductible & out of pocket insurance costs. I have a very low recurrence percentage odds, and my f/u appointments consist of verynlittle beyond "how are you feeling" and markers & general labs.

    · Share on FacebookShare on Twitter
  • Momine
    Momine Member Posts: 7,859
    edited February 2015

    Melissa, wow! That is really expensive.

    I checked labcorp, and here is the page for the CA-125: CA-125

    Here is CA-15-3: CA 15-3

    I can't find the prices though. You may have to contact them.

    · Share on FacebookShare on Twitter
  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited February 2015

    I've looked. They do CA-125, CEA & CA-19-9 on me. I can have them done for a couple hundred dollars.

    Oncology here is billed as outpatient hospital plus facility fees. Silly me to think I could just pay the higher copay for a specialist office visit, huh? God forbid they should pick up the ultrasound wand or something, or actually do a pelvic exam...

    · Share on FacebookShare on Twitter
  • Momine
    Momine Member Posts: 7,859
    edited February 2015

    Yes, I forgot the CEA. I get the CEA, CA 125 and CA 15-3.

    · Share on FacebookShare on Twitter
  • mary625
    mary625 Member Posts: 1,056
    edited February 2015

    Interesting. I'm sitting here with my sister, a former doctor, who says "no way, no how" can you get a blood test without a doctor's order. I will call next week after the holiday weekend (it's a 3-day weekend here the U.S.) and findout.

    · Share on FacebookShare on Twitter
  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited February 2015

    https://www.directlabs.com/mobile/HowItWorks/tabid...


    · Share on FacebookShare on Twitter
  • Momine
    Momine Member Posts: 7,859
    edited February 2015

    Mary625, with all due respect to your sister, you really can. It is just that insurance won't pay if you don't have a doctor's order.

    · Share on FacebookShare on Twitter
  • mary625
    mary625 Member Posts: 1,056
    edited February 2015

    Definitely bookmarking that page! Thanks. Also wanting to get Vit D and C-reactive protein more frequently than doctors order.

    · Share on FacebookShare on Twitter
  • fredntan
    fredntan Member Posts: 1,821
    edited February 2015

    whats c reactive protein?


    · Share on FacebookShare on Twitter
  • dutchiris
    dutchiris Member Posts: 855
    edited February 2015

    The closest lab they have is 120 miles from me. I am pretty certain the hospitals in my town won't draw blood without a physicians order but I'll ask a lab tech tomorrow.

    · Share on FacebookShare on Twitter

Categories