Tumor Markers (how reliable)

[tessibop2002]

I have been staying steady at 6.4 (cea) I had a Pet scan Feb 8th and it showed my cancer is stable with some improvement, then my tumor marker shot up to 11, then 14, then they took my blood today but i wont know until tomorrow if it went any higher, but if it does hes gonna send me for a cat scan, I dont understand how i can have such a good pet scan but have my tumor marker rising at the same time, has anyone else ever had this problem?? And how reliable are these tumor markers, I know everyone has different marker test, mine is just called cea, i have the breast cancer in my lymph nodes in my neck and on my chest wall. I was so happy with such a good pet scan and now these numbers rising are freaking me out.

[Aelgersma]

I'm so happy to hear your tumor marker is so low but that freaks me out. Mine is so high it almost seems unbelievable. The whole thing is just scary. Prayers to you as well!

[tessibop2002 in reply to Aelgersma]

there not low, for each type of cancer there is a different tumor marker, like if your cancer is in your bones its a totally different tumor marker, for my cancer in my lymph nodes it is high and keeps getting higher'

[Aelgersma in reply to tessibop2002]

Mine is breast cancer which is now in my bones and my liver is full. In November, tumor marker was 3446. It is down since harsh chemo but still very high. I start a new treatment mid month so feeling nervous.

[tessibop2002 in reply to Aelgersma]

Im always nervous, this whole cancer thing has made me into a bundle of nerves, I hope your new treatment works well for you, my doctor plans on changing my treatment too if my number goes any higher, I will pray for you and everyone one of us that has to go through this, I pray they find a cure very soon too!

[Kathleen1999 in reply to Aelgersma]

I have not had a CEA level done in years...only CA27-29. Foryaers it stayed in the forties and fifties...now it's up around 80. My CA-27-29 was at 60 when I was diagnosed as stage IV.

By the way I decided on my own to stop drinking five years ago...glad that I did from what I recently heard on world news regarding not drinking if you have breast cancer.

[Hidden]

YOur CEA marker is still quite low but the changes are scary, aren't they. I have already said on this site - mine continues to rise gradually - currently was 95 from starting around 50 - and am on Xeloda. The puzzle is that my CA125 marker continues to go down and my CT scan and nuclear bone scan are both clear barring the small lesion on my liver which is shrinking at each scan! my oncologist is keeping on Xeloda and seems to feel the CEA is not as reliable as she might like - it also reacts to various inflammatory problems I gather. Chin up and keep brave.

[tessibop2002 in reply to Hidden]

Thank you, thats what i wanted to hear, that the cea isn't reliable, because i couldn't understand how my pet scans keep showing improvement and say my cancer is stable yes my cea keeps going up, thanks for your input!

[Kathleen1999 in reply to tessibop2002]

I have also heard from my oncologist that the CA27-29 isn't that reliable either. She said that she would not put me back on Xeloda unless she saw something on my Pet/ bone scan or my other CT scans.

[Joan37 in reply to Hidden]

If you have only a small liver met perhaps you can have it surgically removed, radiated, or ablated with an interventional radiology procedure. Here's a 6-minute video explaining the latter. The person in the video is an interventional radiologist at Memorial Sloan Kettering Cancer Center. I had a single lung met in 2008 and it was removed via radiofrequency ablation (RFA).

mskcc.org/cancer-care/docto...

[Hidden in reply to Joan37]

Thanks so much for the information. I want to discuss this with my oncologist (who is a radio therapy oncologist??) I live in South Africa, however so am not sure what is available in that line and, more to the point perhaps, what the medical aid scheme allows. There is a great deal of info on the net which I am trying to follow up with my oncologist but as we have not yet reached the stage of having Ibrance on the formulary I wonder sometimes how far behind we are getting. Still, I am happy with her treatment at present and with her approach. Perhaps she will have more information as she does keep herself pretty well informed.

[Joan37 in reply to Hidden]

In the US we have medical oncologists (chemotherapy and also systemic targeted treatments like Herceptin, aromatase inhibitors, etc.), radiation oncologists (irradiation for early stage breast cancer) and of course surgeons. An interventional radiologist is a person who went to medical school for radiology decided to specialize in interventional radiology (IR). These are the people who place venous catheters, etc., for example. But they can do much more than that by using CT scans, MRIs, ultrasound to then make a tiny incision in the body to ablate tumors using heat (including microwave ablation), cold and electrical currents, without using radiation. In many instances these procedures can be repeated because there is no upper limit as in a dose of radiation.

In 2007, I had a single lung tumor removed via surgery. It was breast cancer, not lung cancer. I'm HER2+ and went on Herceptin. A year later the tumor recurred in the same area of the lung and I had it ablated with RFA and continued on Herceptin. I have not had any tumors in the lung since then. I also had a brain met in 2008. It was removed via surgery and I received five dosages of targeted radiation (IMRT) to the tumor cavity, and I haven't had a brain met since then. I continue on Herceptin.

These local IR procedures do not work for everyone. However, I wanted to try them and my medical oncologist agreed. However, in the US they are not considered standard of care. But clinical trials are underway to determine whether they would be beneficial in metastatic breast cancer when added to systemic therapy.

I hope Ibrance becomes available soon. It would give you another option.

[Hidden in reply to Joan37]

Great information. thanks for that. I am not sure where we are at with interventional radiography but have heard mention several times lately. It would be great to have more access to so much that is commented on in USA but we do have some pretty good medical people here - mostly our problem is whether our equivalent of your FDA gets round to assessing new things! I was initially diagnosed Oct 2013 with oestrogen positive tumour (no lymph gland problems), had a R mastectomy and 6 weeks of targeted radiation to ensure no problems with glands around the chest. After 3 months on Tamoxifen the liver met was found - so tiny they battled to get a biopsy but it was also ER+ and was changed to Letrozole which has worked well till October last year. My markers increased and routine scan showed the liver met was up from 4mm dia to 40mm. Was immediately put on Xeloda (medical aid declined affinitor I think it was) 2000mg 2 weeks on and 1 off and when the CEA went up though the CA125 and liver met were down we increased to 2500mg. This has now been the pattern - CEA up and CA125 down every 6 weeks so had a nuclear bone scan and another CT and all clear except the liver met now down to about 12mm. Luckily I have avoided the hand foot syndrome to date and have few problems with the Xeloda apart from being a bit tired so we continue to see what happens.

[Joan37 in reply to Hidden]

Thanks for your reply, Izzy. I'm sure South Africa has excellent medical care. The problem in the US is that even though our care is excellent we pay a tremendous amount of money for it, which is unlike much of the Western World, where the government takes care of that. Has South Africa approved Affinitor? Unlike Ibrance, which is a CDK4/6 inhibitor, it is an mTOR inhibitor taken with Aromasin (an aromatase inhibitor). Both of the targeted drugs are designed to boost aromatase inhibitors. Perhaps if you have only one tumor in the liver you could check out local procedures.

[Hidden in reply to Joan37]

Thanks for your input. Yes we do have affinitor. My oncologist first requested that with aromasin but it is hugely expensive I believe and my medical plan declined it so we went with Xeloda. I have since seen the latest formulary and it seems that Affinitor is now on the Core+ approval list so, should it become necessary to change, I shall take the listing in to my oncologist and suggest they fight with the medical aid (who probably hate me as I fight very fiercely - when they get ridiculous and allocate my cancer scans to general benefits for example) I suppose at 72 I can now be the consumer from hell

[Mimidonna in reply to Hidden]

My moms dr says the scans are more reliable than the markers. My mom has lived with metastatic Breast cancer since 1983. It was ER positive at that time and treated with radiation and hormonal chemotherapy. She actually went into remission and stayed there for 28 years before it came back. Now it is triple negative and she has been treated with 4 different chemos and radiation. She has lived 4 years since this recent recurrence and is still fighting. Never give up! To God be the glory for his healing mercies and daily sustenance! It's not over till He says it's over!!!

[Jac-genova in reply to Mimidonna]

Can my mom speak with yours?

[Ninfa1956]

My doctor always goes by my pet scan results. My tumor markers ho up couple points and then down and then up. But my pet scans are showing no new sign of cancer and I am happy with that. The only other thing I could say to you is trust your doctor because I trust mine and put your faith in God's hand good luck

[tessibop2002 in reply to Ninfa1956]

Thanks, I do trust my doctor, I think he just wants to be on the safe side, and boy do I have faith in God, just hard not to worry some times, thanks for your input, much appreciated!

[Halfpint2]

My markers show I'm cancer free because I don't have the proteins that accurately create markers. Yet I have Mets to my lungs. My tumors responded very well to taxotere and are stable. I go back and forth on the freak out roller coaster.

[Joan37]

My tumor markers have never been reliable. For some of us they work very well, indicating that something is going on even though a scan doesn't show anything -- yet. But that's not the case with me. I've had them all: CEA, CA-125, CA27-29, CA15-3). I understand that most oncologist will not change treatment until they actually see something on a scan.

[Kats3 in reply to Joan37]

Joan,

I always thought that CA-125 was a tumor marker indicator for Ovarian Cancer. Am I wrong? I usually have the CA15-3 test for my breast cancer. I had the CA 27-29 only once when I saw a consulting doctor in another town. She said that the kind of BC tumor marker used is totally up to the preference of the doctor. But I've never had a CA-125.

This consulting Oncologist from Dana Farber also told me that she looks First, at how the patient looks and how the patient is functioning on a daily basis, (is there pain anywhere?)etc. Second, she looks at any scans that were done, and lastly, she looks at the tumor marker number. She says that tumor markers don't tell the whole story. I believe her.

My tumor marker numbers were in the high 4,000's 2 years ago when I was on Faslodex. Ibrance was just coming out around then, but I was put on Xeloda and am still on it. My tumor markers went down immediately when I got switched. They're going up lately and my dosage of Xeloda was increased last month. Hopefully I can stay on it longer as it agrees with me. If not, Affinator and Aromasin are next on the agenda.

My latest CT scan shows stable bone- only disease. I hope it stays that way!

I agree with most on this site that we live an anxiety-filled life if we dwell on our BC. It's hard not to do.

I am trying my hardest to put my life and future in God's hands. Praying certainly helps with anxiety. It is powerful. We need to do anything and everything to bring PEACE into our lives.

God Bless all of you! I keep you in my prayers every day. Kats3

[Joan37 in reply to Kats3]

Good question about CA125. When I had stage 2 in 2003 an oncologist told me that it's also a general marker. And I was also getting CA27-29 at the same time. That is the only marker that my current oncologist has been using, and I've never had CA125 since becoming metastatic in 2007.

Yes, it's difficult to live one day at a time. I try to set short goals, such as Easter coming up soon for me, which means additional family fun. We go to my brother's house, and I'm already planning what I'm going to bring as my contribution. My sister-in-law makes a great brunch buffet.

I too pray and always ask for breast cancer to be cured. Ask and you shall receive.

[Partia]

I have always heard that tumor marker tests are not very reliable so I wouldn't worry about it too much. Best wishes.

[Joan37]

My oncologist looks for a pattern. Nothing can be told from just one tumor marker. They look for a pattern of either continuing to rise or continuing go down. Just like they are not reliable for me I've heard many woman say that they work very well for them. Each of us is different.

[tessibop2002 in reply to Joan37]

but mine went from 6.4 to 11, to 14 to now 15, there sending me for a cat and bone scan tuesday, im a nervous wreck

[Joan37 in reply to tessibop2002]

I don't blame you. It's the roller coaster ride that we're on. I felt the same way about my brain met. After the surgery and targeted radiation the brain MRIs kept getting more and more enhanced, until the radiology report read that they couldn't rule out regrowth. I was terrified that the met was potentially growing back. Then after awhile the MRIs went back to normal. I'm hopeful that the increase in your marker turns out to be nothing.

[tessibop2002 in reply to Joan37]

Wow, your story is amazing and thanks for the words of encouragement!

[Kats3 in reply to tessibop2002]

tessibop2002,

Don't be a wreck. To me, those numbers are still very low. Isn't normal 0-38? But that range is for someone without BC.

I'd take your numbers in a heartbeat!! Wishing you well.

Kats3

[tessibop2002 in reply to Kats3]

no, CEA normal numbers are 0.0-4.7 and mine were staying at 6.4, then jumped to 11 then to 14.5 now 15.5, i go for cat and bone scan tuesday

[Kats2]

I'll be sending you positive thoughts and energy on Tuesday tessibop2002! Let us know how you make out. Kats2

[tessibop2002]

Thanks, I go for tests tomorrow, so nervous

[Ibelong]

From what I understand from my oncologist is that tumor markers can change but it doesn't necessarily mean your cancer is progressing or for that matter regressing. It's an unreliable test that can only be confirmed or disproved with further testing.

Personally my tumor markers are being looked at monthly right now and have been up and down. I have no symptoms of progression, which is also a bit unreliable. As I have veterbrae mets that are asymptomatic. They got there and grew without a peep as far as symptoms are concerned. I have heard many stories of women like me who were asymptomatic then diagnosed metastatic de novo. But, now adays they wait for symptoms and tumor markers with correlating labs before further study such as scans.

For now I am on Ibrance, letrozole and xgeva injections. With monthly meeting with my oncologist. He has indicated a scan would be prudent 6 months after my last scan. I had a break from this cancer for 7.5 years before my recurrence. Coming May ninth will be my diagnosis 10 yr anniversary. I consider myself very lucky!

[Kats2]

Ibelong,

Yes, you ARE very lucky! And you're right about the "no symptoms" scenario. I was the same way. I wish that screening tests would be done BEFORE surgery to see what the whole body shows! I just know that my bone mets were there many years before my lumpectomy was done. I had aches and pains in my back and hip but it was considered arthritis. Now scans show extensive bone mets.

Let me know how you do with the Ibrance and Letrozole. I may be on those soon. Kats2

[Ibelong in reply to Kats2]

Hello again so far so good. Coming to a happy balance of side effects. Still very tired and easily catch colds and get headaches a lot. But doing good.

I will have my scans in July. I will keep you posted. Crossing my fingers it has taken hold of and is in control of my mets.

[ArizonaGramma]

Yes, happened to me. Although my antigens never went to a normal (they were in the hundreds every time I went for blood draws) they did shoot up in October of 2017 and Went to 900 something. So you can read up that the tumor markers can be high without ever having evidence of cancer, but when they do a dramatic upshot, there is a reason. They just have to find it. CT scans for me showed no tumors, but it was in the bone this time and showing up as lesions (spots) believed to be from previous treatments, but it was cancer again becoming active. Your numbers are really low to normal and you are not in a bad place.