Tumor markers elevated, a little worried right now.
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Hi Goldie. No, I am not too concerned with the number, my MO is just concerned that the number increased almost 30 pts and is staying there. So I guess I'll play the game. Since I did not have a marker drawn until after tx, I have no idea if they even work for me. Seems that should have been done if she wanted to follow them, right? My sister's MO does not use TM's . I'm on the fence, but guess I would have a scan anyway d/t this back/hip pain that has been there for months now.
My MO only does the 27.29.
Linnyhopp- agree with Goldie! Monday morning, right? But I totally understand......
Another wonderful weekend here in Ca. Watching the weather news from the East coast is flat out depressing! Hang in there guys!
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I was wondering what tumor markers other oncs go by. Im so confused as I thought none were reliable. If someone coukd chime in I would appreciate it. I have only had the ca27.29 which kept elevating but onc never once said anything so I dont know if I should ask or leave it B I just saw it in my online chart.
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Some oncs use TM's, some don't - mine does but only in conjunction with scans, my TM's have risen lately but only one of the three is slightly above the norm - that said the last scan showed some progression so that's why TM's are only part of the diagnosis - I am about to be scanned again after three months on Faslodex to decide if it's working.
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Thanks for replying. I am about to get my first set of scans yet ct scans . Can these detect it spreading? I asked for a pet scan but was told to many false positives. I have had secere lower rivht back pain,hip going down leg since january. I also have had upper right pain under rib cage since then. I finally told him I need to know what is causing all this pain. Am I getting the right tests? Im so lost. Thanks
Diane
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Happy Saturday! Yes, I know it is probably silly to put off making the call until Monday, but I truly thought I would hear from my MO after he was finished with office hours, as that is when he usually calls. I had my phone all ready and waiting for the call and then...nothing! I probably mentioned that I will have to see a different MO as the one I have been seeing since I was diagnosed has to move due to his father's illness. Its scary to think of changing (and I am not the biggest fan of changes), but I will be seeing a young, female MO that 2 of my friends see. They love her, so that makes me feel better. I actually met her once when one of my friends asked me to go with her to her first appointment. It's interesting that the friend I accompanied was changing from the MO I see because he doesn't believe in tumor markers. However, when I told him at my 3 year appointment that I was a bit nervous, he decided to order the test. I believe it was the ca27-29, but Kaiser (my insurance) has now changed to the 13.15 (?). Sorry to be so wordy, but I guess I needed to say all of this as I am feeling a bit insecure about the doctor change and the tumor marker outcome at this point. I will let you know what I find out on Monday. I have this feeling of doom and need to face whatever the outcome is. By the way, when my MO ordered the Pet Scan last summer, my tumor marker was 42.
DSW1976 ~ I am keeping positive thoughts that your symptoms are totally unrelated to the BC. I am sure the other ladies can help you out with info about having the right tests.
Thanks to all of you for your input. It is truly appreciated. Hugs to all...Linda
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Linny, sorry for changes you have to go through and I hope you like your new onc.
To the other girls, like I have said before, you have to be your own advocate. It was me that kept insisting on labs, and before Obama care, my insurance wouldn't cover scans, as there was nothing to really "prove" I needed them. I had no pain, my scans when I did have them pretty much showed nothing of concern. It was my TM's that were telling the story, as about every 3-6 months they would go up about 20 points. If I had not gotten my lab reports, I'm not so sure my onc would have done anything. And I still have no pain. I would not have known that the cancer had spread, had I not been persistent. I felt perfectly normal and also passed my 5 and 6 year mark. I was not going to stop either, until I hit my 10 years. Told my onc I wanted to continue to see him every 6 months, not yearly.
Just because you have pain, doesn't mean that cancer is spreading. Same goes for if you don't have pain. It is a very sneaky bastard!
Sandy, I hope the Faslodex is working for you. I was on it for awhile and did well with no SE's, but it just didn't work for me. I was really bummed about that, it was such an easy procedure. So now I am on chemo in pill form, Xeloda. Do you have mets?
Linny, praying for a good call tomorrow!
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Moni, glad you got your results back! My markers have been in the 50's!! I have them retested in May, and I have had all the scans! Where do you live in CA? We moved to the South Bay Area 3 years ago! Moved here from Indiana and lived in Pittsburgh for 20 years! Loving this weather!! Hope your scans go well!
Welcome DSW, please let us know how your scans turn out! Scans are pretty good indicators of Cancer spreading, but don't go there yet!!
Linda, let us know, Hon!
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hi, Babydoll, welcome to this wonderful thread and group of ladies!! Wow, you have been through a lot!! Hope everything continues to go well for you!!
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Thank you to all that replied. I am fresh out of chemo as of last monday and tomarrow is first solo herceptin. Is it true that coming off chemo tumors are harder to detect? I really am not going to worry about them till they are over. After b/c diagnosis nothing shocks me. I have an appt w plastic surgeon today to see when swap out surgery is. I just wanted scans before surgery cause if it has spread I wont bother w implants just want expanders out.
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Linnyhopp any word? In your pocket!
Kindergarten- I live in Placerville, foot of the Sierras. Wonderful and beautiful area filled with so much history! But it's really a small, quiet town.
DSW1976- welcome! Sorry you are under all this stress. Wishing you well with the PS. And yes, please let us know how the scans go. Your complaint of pain location sounds very familiar, except mine does not radiate down the leg. That sounds very much like siatica. Had that once before, and never wish to have it again! Either way, I hope you get some answers and some relief. If you don't mind, may I ask what your TM numbers were?
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Hi All ~ Well, here's the scoop for today. I guess since I have to have a new doctor, I am kind of at the "in between stage." I called the info/appointment line and inquired as to which doctor I should speak with since my original MO is leaving the practice next Tuesday. I was told that I should leave a message for the new MO since that's who I will be with as of April 1st. So...I am hoping for a call tomorrow since I am sure the new MO will probably have to go over my records as a new patient for her. This is a kind of crazy situation. I feel like I am in Limbo Land! Please keep me in your pockets...I need to be all snuggly in there while I await "the call."
Thanks everybody and a big hug to all of you! xo
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Oh Linda, that is not right! Can's you ask them to just fax or email you labs. There is no reason why they can not do that!
NONE AT ALL, THEY ARE YOURS!
At least you could look at the numbers.Waiting is the worst, nor is it good for us!
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Dearest Linda, I am so sorry that you are having to wait like this for your results! I agree with Goldie, about e-mailing your results! My Onc does do that! You poor thing, hang in there
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Oh Linda, that is horrible! Is the new MO the one that you saw with your friend? I was in a similar situation as my insurance was going to drop the medical group that I am with, all my dr's! Fortunately they settled at the last minute and we did not lose them. But the stress is terrible.
Waiting with you.
Moni
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Thanks for all of your support as I wait, and wait, and wait. All of the lab results are posted except the tumor markers. That test is never posted and my only thought is that they don't want people freaking out if the number is too high or too low. I have Kaiser, and they are usually very forthcoming in posting lab results...that is unless the test relates to the big, nasty "C." In fact, I was very worried when the choice for insurance became the choice between HMOs. Throughout treatment I was given great care. In fact when one of my counts became very dangerously low (magnesium), the result had come in at 9:30 p.m. and I had a call from a physician on call telling me to go to the emergency room for an infusion because it wasn't safe to wait until the next morning. I can honestly say that I don't believe my old group of doctors would have even been around to see my lab result until sometime the next day. With all that being said, I still feel frustrated with this situation, but I am really quite sure that I will hear from someone tomorrow, whether I want to or not...lol! And yes, Moni, the new MO is the one I saw with my friend. Two teachers from my school have her as a doctor and love her. I hope I will as well. Lastly, thanks for all of your kindness and caring. There is no one who understands the realities and fear that are experienced, unless they have (unfortunately) been in our shoes. You guys are the best! I will check in tomorrow and yes, I am still scared to get the results!
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My oncologists office emails me my labs in a pdf, usually within a day or two of the draw. Still praying that no news is good news Linda.
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WOO HOO! I finally got the info on the 13.5 test and the result was good! Prayers have been answered for sure. I am so grateful to all of you who stayed with me and gave such good advice. I spoke with the assistant to the MO that I will be seeing from now on (unless I don't like her and change...lol). I guess the "passing score" for this particular test is below 30 and I am at 27.5. I hope that's low enough...there I go again, borrowing trouble. Just know that I loved being in your pockets and will be here if ever you need me. Hugs to all!
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Linnyhopp- Whew! So happy for you! Now enjoy your week!
Moni
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Now you can BREATHE! Congrats on those low numbers!
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Thanks so much, Moni and Goldie...I know how blessed I am. I hope you both have a wonderful week as well.
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hooray, Hooray, Linda!!!!
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Kindergarten ~ Thanks so much...I am so happy to be able to know that there won't be anything hanging over my head when my husband has his other knee replacement on April 2nd. I will be able to give him my full, undivided attentions...lucky me, huh? LOL!
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Linda, you sound like a great nurse!! Hope your husband's surgery goes well!!
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Thanks, Kathy. I am praying for lots of patience...lol!
Have a great weekend, everyone.
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Anyone out there?
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Of course! How are you Linda?
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Hi Linda! How are you? How was your husbands surgery? Do hope the recovery is speedy!
Moni
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Hi, Linda, did your husband's surgery go well
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Hi Moni, Goldi & Kindergarten! My husband is doing really well. I guess when you have already had one replaced, it's a lot easier to know what to expect. His doctor told him he is a "rock star" and he keeps reminding me of this fact...men! Thanks for asking, I really appreciate it. I hope you are all doing well. I have this week off to be on call as a nurse, so I am sure I will be kept busy. Take care and let me know how all of you guys are doing. Hugs to everyone!
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Glad that all went well with the Rock Star! I am doing pretty good and holding my own. Treatment is bearable. I don't like it, but it's bearable!
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