Tumor markers elevated, a little worried right now.
Comments
-
Kindergarten ~ Sorry I am so late in telling you how wonderful it is that your markers were normal. That had to be the best present ever! I hope your holidays were wonderful. With my husband recovering from knee replacement, the holidays, and work...I have been busy! I will be seeing my MO 2 weeks from today. If he asks me if I want my levels checked (because he doesn't typically check markers), I am unsure what my decision will be. I hate always looking over my shoulder. However, in the here and now I have enjoyed all the wonderful things that have come my way and that is the most important thing I have learned. Hugs to you and I hope you read this sooner than I read your post!
To all of you on this topic...I hope all is well and you are loving your lives!
0 -
Happy New Year, Linnyhopp, thank you for your post and kind words! I know your dilemma in deciding whether you should have your tumor markers tested! My onc usually just does it and never asks me if want them tested or not😀 I really like her, so I don't protest! I don't like to know the results! Good luck in your decision!! Hope your DH keeps feeling better!! Happy New Year to Everyone Here!!
0 -
Hi Ladies, I just came across this thread today and I am so glad! I see a couple of familiar names. My tumor markers are checked every three months, and although they are still in the reference range they are very slowly creeping up. I get my results online automatically (unless there is a problem) so I keep telling myself that if they are posted and there is no call from the MO then all is well. I have found much reassurance from reading your posts about roller coaster results.
Kindergarten, you mention having an onc in Pittsburgh....just curious who it is/was? I am in the Pittsburgh area and all my cancer docs are through UPMC.
Hope to have more conversations with you ladies!
Martha
0 -
hi, Martha!!! Yes, I did all of my treatment in Pittsburgh at Magee Women's Hospital! Dr. Briugsky was my oncologist! Such a wonderful doctor!! Welcome, Welcome😃
0 -
Hi RohdyMMM ~ Welcome! This isn't a real active thread, but it seems like when one of us needs to discuss this issue, another great member responds. I agree with you that no news is good news!
Hi Kindergarten ~ I had my onc appointment yesterday and of course, he mentioned the dreaded testing of the tumor markers. At first he asked me if I wanted to have the test, but as the conversation went on, I knew he was just asking me as a formality. I asked him if he felt it was needed at this time, or would it be OK to wait until my next 6 month appointment. He indicated that he would like me to have the test to make sure the markers hadn't gone higher. Of course, at the mention of that possible issue, I immediately broke out into a sweat, which was embarrassing because the next thing on the agenda was the physical exam! He tried to tell me not to over-react, but I had to talk myself down from that reaction. I asked my husband what he thought when I called him after the appointment, and of course he said the same thing as the onc and also added that I can't go to the negative thoughts unless there is a problem. Easy for them to say, right? Anyway I have had some kind of a virus the past week and a half, so I have made the decision that I won't have the lab test until I feel completely well. Oh, the onc said that if there is a rise in the tumor markers, I would have a CT scan and a bone scan. He said the CT scan gives a clearer image than the PET scan. So in my mind I am thinking...why the hell didn't you do a CT scan instead of a PET scan last August!!!??? I am sure that is a protocol that is used to save money, but I am hoping i am wrong about that situation.
So here I am, a bundle of nerves and afraid to get the results of the lab tests when I get them done. Did I ever say that I HATE CANCER? Well, I certainly do. I hope all is well with you and your family. and want to say thank you, up front, for reading this. Take care and hope to hear from you soon.
Hugs to both of you...Linda
0 -
Linda, so sorry you are going through this. Some docs don't do TM's, some don't do scans, as they can all show false positives. But it was the TM's that showed cancer in me again and then the biopsy to confirm. The tests don't prevent anything, only help to confirm. So if you don't have them and you wait, you could be waiting longer to get treated if does turn out that there are mets.
My TM's are continuing to rise, I've been on Faslodex and Xgeva, so now I have to do chemo in the form of a pill, which is Xeloda along with the Xgeva.
Just make sure you are comfortable with your decision. My TM's went from 60 to 120 in 6 months. Good luck!
0 -
Dear Linda, I am so sorry that you are going through this anxiety and worry! Yes, I hate cancer and what it does to you physically and emotionally! I agree with Goldie, it is better just to get them done, even though they can be a source of stress!! And Goldie, I pray you continue to do well on Xeloda. My friend is doing well on this pill.
0 -
My onc does TM's every three months because I am stage 4 and my TMs are always dead on - some people's are not - mine started to rise in the fall and I stayed off treatment (my choice) until two weeks ago - I am now on Faslodex - oh yes, I have CT scan every three months as well and of course it did show some new activity in my lungs and pleural cavity as well as the skin mets I can see on my breast. In Canada it is very rare to have PET scans and I understand from many ladies on the US threads now that insurance companies are not authorizing PET's anymore (they are very, very expensive and CT scan seems to do a better measuring job) - I don't sweat the results of anything anymore (I take more Ativan in the week or 10 days of scanxiety) I just try to treat myself with say, a new book, or favourite restaurant meal or binge watching TV for that period, whatever works!
0 -
Goldie ~ Thanks for your good wishes and the info you shared regarding your experience. My onc had originally told me that he didn't do the tumor markers because of false positives. When I saw him for my 2 year check up I happened to mention that I had been anxious up until 2 years as from what I have read, the cancer tends to typically come back more often during that time span. I totally understand that the nasty crap can come back at any time...unfortunately. He said that since I was worrying about it, he would put in a request to have my TM's checked. The result was 38 which is a bit higher than normal. I have to say it freaked me out when he called to tell me he would be ordering the PET scan. Fast forward to this week and I have already written what he recommended. I hate this. I swear all of this stuff seems to take years off of your life just from the worry. I fear that my numbers may have risen...sometimes it feels like "when" instead of "it." I hate to be ignorant, but did your cancer recur in your breast, or is has it traveled elsewhere in your body? As Kindergarten wrote...I hope the meds continue to work well for you.
Kindergarten ~ Yes, here we go again. I know that you can understand where I am coming from and I appreciate your encouragement. I know I will have to go get the blood work done, or my husband will put me in the car and drag me into the lab to have them! I hope you are still having fun with those grandchildren. Take care and, of course, I will keep you posted because I just have to have a place to express how I am feeling and people who post on this thread have had the same experience and are so understanding. We are very lucky to have this website with so many wonderful people. I feel blessed to know that there are so many kind and empathetic friends on each of the threads I have used.
0 -
Dear Linda, try not to worry, I know that is easier said than done! If you are not having any symptoms, I am sure things are probably just fine!! Treat yourself to something nice as Sandy suggested, and please keep,us posted!! Prayers for comfort and peace!
0 -
Good morning girls! Well the meds (Faslodex) are NOT working for me, which is why I have to change over the Xeloda, which is a type of chemo. I have not started it yet. Linda, I'm glad your friend is doing well on it, I hope I do too. It's the SE's that have me concerned. "The" cancer (I refuse to say "my" cancer) has traveled to my bones, currently in my right hip and my spine at the base of my neck. I was almost 6 years cancer free.
Kathy, there isn't always symptoms. I can't tell you how good I feel! I feel as normal as any 56 year old women, with just the few natural aches or pains that we all get with age. And because I feel so good, I just hate the fact that this chemo will drag me down. I sat watching tv last night contemplating if I want to do this. You know the quality of life vs. quantity.
Sandy, as you can tell I am stage IV as well. I just can't bring myself to change it on my profile. While on the Fasolodex, I was doing monthly labs and scans every 3 months, bone and CT with and without contrast. NOW I have to do labs every 3 weeks and see the onc every 6 weeks. What kind of life is that??? I feel like I'm constantly getting slapped in the face by this wretched disease. Wishing you the best. Well....wishing all of you the best!
0 -
Goldie - if you'll notice I don't have anything on my profile - that's because a few years ago I was "getting too much help" because my profile is a little different than others and it became a burden - hence, no profile but I do on occasion mention my stage 4 - I've been 4 for over two years now and like you I am fine with my quality of life - I refused treatment from the end of June till the third week in January because I was pretty stable and my tm's were low and actually continue to be lower than most but still rising and the scans show some progression so I'm on Faslodex right now and hopefully for a long time to come but we all know that we have no guarantees - the onc had originally told me back in the fall that she was thinking of Halaven (have no idea why she switched "thinking") and that certainly set me back on my heels because, like you, I fear the loss of energy and the never ending appointments - I am quite a bit older than you (69) so if it bothers me this much I can only guess how much it is bothering you - BUT keep your chin up for now and see if the se's aren't too bad and maybe get you to stable - keep in touch either through this thread or PM me - sending hugs, S.
0 -
Sandy, sorry you have had to eliminate your profile because of people trying to "help". I have not had that happen to me, and if it did, I would just totally ignore those people and not even give them the time of day. There are several gals on these boards that like to tell others what they should and shouldn't do, where as they should just mind their own business! I found the Faslodex very easy to deal with and didn't notice any SE's at all, which is why I'm bummed it is not working. I'm hoping I don't have too many SE's from the Xeloda, and if I do, I may quit, I don't know. The never ending appointments and treatment is VERY bothersome, I just have to keep reminding myself that so far I have been given 7 additional years to live thus far and there are women MUCH younger than me that are dealing with this, with small children yet, some even pregnant and some very young that don't make it.
My onc had told me a year ago, that I could just come in yearly for check ups. I told him I would just prefer to stay on 6 months with labs, of course he had no problem with that. Had I not insisted on that, I would not know that I have mets, no signs what so ever.
Linda, I hope you are able to enjoy your weekend without too much worry.
0 -
Goldie, you are so right, not having symptoms may not mean an all clear, so it is best to be checked by your onc!! I am ten years out but because my tumor markers have been all over the place, I am checked every 3 or 4 months!!! I hope the Xeloda works well for you!
Linda, hope everything works out well for you too!
0 -
oh, Sandy, it is my friend, Carolyn who is taking Xeloda! She is doing well on it and not any side effects so far!! Again, I hope it works well for you!!
0 -
Hi, Linda!! I have been thinking about you, did you have your bloodwork done
0 -
I was wondering too how she was doing, checking to see if she has even logged into BCO. Her last login was Feb 3rd. I assume you don't have any contact info on her?
Hoping to hear from you soon Linda and with good news.
0 -
Hi Everyone! Sorry that I have been so delinquent in not visiting lately. I decided that I would wait until after my husband's birthday (which was this week) to have my blood tests and chose to just try to forget about cancer for a short time. Well, you all know how that goes. So, now that we have had a great time celebrating my husband's birthday, I am going to have to get in to the lab pretty soon. I am sorry that I have been gone so long and will definitely let all of you know when I finally get up the nerve to go and then have the results. Did I ever tell you guys that I hate cancer? Well, I also loath and detest it, too!
Kindergarten, Sandy & Goldie ~ Thanks so much for your care and concern. I love knowing that there are women "out there" who know exactly how we can feel about this crazy journey. I am glad you are all doing well and I hope and pray that we all stay that way. Take care and again, know that I am so grateful for friends like all of you! "Talk" to you soon...love and hugs...Linda
0 -
Linda, thanks for popping in. I totally understand about waiting to have things done. I had to start chemo, and my husbands daughter was getting married. I told my onc that I wanted to wait until after the wedding to start. I have only tomorrow left, then I get a week off. I think I may be having an allergic reaction to the Xeloda. I have red blotches on my chest. My forehead, nose and above my upper lip are all dry and peely, blotchy and a tad sore.
Like you Linda, I detest it too. Like they say, the gift that keeps on giving!
Wishing you all clean/good reports. Happy Birthday to your DH.
Lori
0 -
Hi, Linda, hope you had a wonderful birthday celebration with your hubby! Much more important than thinking about blood tests! But so glad you will go and please just let us know how it all goes!!
Lori, so sorry that you had an allergic reaction to Xeloda!! Hope you are feeling better soon! Enjoy the wedding!!!! So glad that you can have a little break from the Chemo!
Hugs and Blessings to you all here!!
0 -
Hi Everyone! Thanks for the encouragement...I love all of you for the support you send my way. So, here's the scoop on my journey to getting the blood tests. I have an appointment with my rheumatologist next week, just a check up for my immune system issues, and I am going to ask her to check my SED rate which indicates whether or not a person has inflammation in their system. I figure I may as well do it ALL at one time and even my DH agreed and he's usually the one pushing me to get stuff done. I will probably do the blood work at the end of next week and I will definitely keep you posted. By the way, my DH and I had a great time on his birthday. We went to Balboa Park and saw a very cool IMAX movie at the Reuben Fleet science center and then went to the Italian restaurant he picked out. It was absolutely beautiful outside so we enjoyed the sunshine as well.
Goldie ~ I hope your blotches are not connected to the Xeloda. It's bad enough to have to take it and to have a bad reactions kind of stinks. Keep us posted as to whether you have to change the drug. Another gift from good ol' cancer....yuck!
Kindergarten ~ Thanks for your good wishes and encouragement, I totally appreciate everything. I hope you are enjoying our great weather today. We really needed that rain we had yesterday. I am sure you are glad you moved to California and avoided the awful winter everyone else seems to be experiencing.
Take care everyone and know that I am sending you cyber hugs!
0 -
Hi Goldie, your post resonated with me as we began with a similar diagnosis and are of a similar age. I am due to see my Onco next week for my 6 monthly check up and had bloods taken the other day in preparation for this ( and my Onco does get CA-15-3 levels checked). I guess I always worry just before these check ups, but I can't help but think that with 10/25 nodes involved at the time I was initially diagnosed, it's just a matter of time before the cancer comes back? I have seen posts by women with far less nodal involvement than me who have had a recurrence. I feel part of this awful waiting game. You said you had no symptoms to indicate recurrence and this is what worries me. I have the normal aches and pains for a 55 year old woman but a sore right collar bone (clavicle?) has had me worried of late. I have never asked what the CA-15-3 levels are before, but will do so on this visit. After reading a lot of posts I can't help thinking I am not as enquiring with my Onco as I should be. I generally accept that all is ok unless he tells me otherwise. I have no regular scans or anything as he doesn't seem to believe in that unless symptomatic. I am still on Tamoxifen ( just past 5 years) and will probably continue with Tamoxifen for 10 years as, even though I am now post menopausal, I tolerate it well and recent studies have shown it to be as good as Aromatose Inhibitors in keeping cancer at bay. I just wish I could stop worrying!!!
0 -
Hi, Magpiemumma!! Welcome but sorry that you are experiencing the worry of this crazy disease!! So normal and understandable!! There are lovely ladies here who will support and encourage you!! You are5 years out and taking tamoxifen, you are doing everything you can!! I am in my tenth year of taking aromasin!!! Just take one day at a time!!! Have a great weekend!!!
0 -
Hello, I am sort of new to all this testing etc., I was diagnosed in Oct. '14. There are so many threads to read through, so I thought I'd ask. What is a tumor marker test. None of my drs have mentioned that.
0 -
Hi Stacie -my doctor does a blood test to check CA15-3 levels. This test, I believe, gives an indication of possible tumour growth. I think each type of cancer has different tumour marker blood tests. The CA15-3 level should be below 38 to be in normal range . I've never asked what my levels are but will on my next check up, cheers , Judy
0 -
Welcome, Stacie...sorry you have to join us, but glad you are here. You will find tremendous support and lots of information from the great women on this thread. Magpiemumma, that's a great definition of a tumor marker level test.
As I have posted before, I have been waiting to have the tumor marker tests for various reasons...one of them being fear. Well, a new wrinkle is in my future. My MO called me Friday to tell me that he was moving from San Diego to Los Angeles to care for his aging father. I thought it was very nice of him to take the time to let me know and not just get a form letter as I have with other doctors. However, during our conversation, I mentioned that I hadn't had the blood tests he ordered and mentioned that I was nervous about it. So, he said he would cancel them because he didn't want to have me go through unnecessary stress. I was honestly taken back. He did add that it's the standard of care to keep track of the markers. WTH? I told him that I probably would do them and not to cancel them. I would love to have any and all of your opinions on this. So now I will be seeing another doctor (at the same office). A teacher friend of mine changed to a woman MO and seems to like her a lot, When I mentioned that I had met her when my friend asked me to go with her to an appointment, he was very nice and said he would make sure I could see her if I wanted. So here I am....a new MO at my next appointment in July and pondering the tumor marker thing. Sorry to be whining, but at this point I am feeling more than a little confused. However, I do feel better knowing that all of you can understand how this might feel. I don't think anyone who hasn't been through this crap can understand how it affects someone. Woe is me! LOL!
0 -
HI there, My MO does them and I like getting them. I don't feel they add stress, for me, they give me peace of mind; and to my MO, their office feels markers are just one more tool in the kitty to monitor. That being said, I like getting scans too. I'd rather deal with the known than the unknown. Good luck. I hope you remain well.0 -
Bevin, I totally agree with you. My scans last time showed stable, but tumor markers continued to rise. Which made my onc change my treatment. Markers went down!
Linda, I say get them done.
0 -
Hi, Linda, I so agree with the other ladies, get them done for peace of mind! Lots of love and hugs!!
0 -
Hi Everyone ~ Thanks for giving me the kick in the butt I need. I will schedule the tests for next week. I know that it's in my best interest to have them done, but I was so blind-sided when I last had them checked and they were higher that I want to pretend I am an ostrich! I have come to the realization that if there is something going on, it would need to be treated sooner rather than later. I wish we could all get off this wild merry-go-round ride we never wanted to go on in the first place. I will keep you posted. Thanks again...hugs & more hugs from me to all of you!
0
