Tumor Marker - Talk Me Down Please

CherylAnn

Hi,

I am so glad I found this forum (wish I found 4 years ago!)

My mom was dx 4 years ago at 70 years old. Lobular, 2-3 cm, setinel nodes were negative. She had radiation and has been on Arimidex ever since. She feels great and looks great. She goes to the doctor every 6 months for blood work and exam and this time her ca 27-29 elevated to 41.  She is always 36.  The doctor says 95% sure it is nothing but still sending her for body scan. This really has caused her a great amount of anxiety and I really appreciated reading the outcome of some of the women here who were also in this situation.  I have tried to research this but don't come up with much info. I did learn that there could be  a 10% - 20% difference just from the lab.  Any informaton or reassurance would be greatly appreciated.

Thanks

BCWarrior

I never realized that so many women become anxious about their tumor markers. Maybe my experience can help some of you relax. I'll give you a brief history of my battle but let me preface it by saying this . . . I rarely pay any attention to my tumor marker. I say "rarely" because I only pay attention if there is a sudden and significant increase in the numbers. Then I know that "something's probably cookin" and my onc sends me off for a CT. For me and my doc, the tumor marker is simply a tool that's used to monitor what may or may not be going on. They're a long way from being totally reliable. I've been told that anything below 38 is normal for everyone.

I was originally dx'd in Jan. 1998 with DCIS. Had 37 rad treatments, 4 rounds of AC and finally 4 rounds of Taxotere. Was on tamoxifen for 5 years. In the middle of all that, I also had a bilateral mastectomy with tram flap reconstruction. No nipples though. Didn't see the point. After all, who's going to benefit from them? Certainly not me (if you know what I mean) since nerve endings are dead. Getting tattoos instead. Almost made it to the 8-year mark when I had a pleural effusion. PET showed numerous hot spots in bones and left lung pleura. Tumor marker was 880. Had a thorocoscopy and pleuradesis for the lung. After 4 weeks on Femara, marker was down to 330. It continued to go down and got as low as 33. Over a couple years, it slowly increased to the 90s. Doc said he was only concerned about a sudden large increase in the numbers. Also been on tamoxifen again, faslodex and Xeloda. Started Xeloda when the marker jumped from 90s to 227. CT showed a lymph node in chest wall. Marker went down to the 60s but started creeping up again. My CT last week showed another affected lymph node and marker of 207. The Xeloda turned my hands into something akin to raw hamburger meat, constant blistering, cracking and bleeding. Been off the stuff for over a month and hands are still not healed. Doc told me Xeloda couldn't possibly be the cause or they would have been healed by now. My initial thought was to put a good squeeze on the cahones but instead, my silent response was . . . "bullshit". Now he wants me on Gemzar. I'd appreciate hearing from anyone who has had experience with this chemo. I'm doing my own research and will eventually come up with something that I feel is right for me. 

Anyway gang, try not to dwell on the tumor marker thing. I wish you all good health, peace and harmony. Keep up the fight.

bonnieandcleo

hey you seem to be having a tough time ...I havnt had chemo had BC since 1984 with reacur in 2005 all going resonabley except tumous markers are up CA 153  to 35.9 which scares me ...going to oncol today but I wanted to wish you well..

suemaute

My last diagnosis was in 2005 and it was considered contained as was the first and I went thru chemo and radiation...lupron to shut ovaries down and that last all of two years was on Arimidex then femara and period came back and have been off all meds...I recently developed a pinched nerve in my back and went to onc because I was nervous it was related to my history...I got the blood work back and my tumor markers are elevated...my CEA is 4.4 and my CA 27.29 is 50...it was 40 5 months ago....I"M FREAKING OUT....I have not been diagnosed with METS, but I'm scheduled for bone and CT scans in two days...I found all of this out on my 43rd birthday....i have four kids that I need to see grow up and start families of their own...this markers have me over the edge!!!!

Oopher1

I know this is easier said than done but try not to stress.  Tumor markers are just one part of the puzzle when it comes to cancer and not all oncologists have faith in those numbers.  Some won't even do them as they cause unnecessary stress on the patient....Other things like inflammation, coffee, wine, breast disease(such as cysts) and certain medications can make them go up.  I will put you in my rosary/prayers that your scans come back negative. Hugs to you.

1.1 cm tumor/Stage1/Grade 3/lumpectomies, no node involvement....chemo/mammosite/herceptin

Risto32

I read through many of your posts and I would like to add my, well my wife's experiences with the tumor markers. My wife was diagnosed with stage 3 breast cancer at age 31 in Feb 2007. At that time her CA 27.29 was 55 and after a bilateral mastectomy, reconstructive surgery, chemotherapy, and radiation her marker dropped into the 20's and sometimes it dropped into the teens. However in October of 2008 her cancer returned in her hip and at that time her marker was still in the "normal" range. She received radiation and now takes Xeloda, which causes her hands to turn reddish in color and become really dry and crack. It also has caused her feet to do the same thing however instead of turning red she is losing toenails. From the research I have done this is a common side effect. We know this for a fact cause she recently had her tubes tied and was off of the Xeloda for 3 weeks and in that time her hands returned to normal as did her feet. Since her October diagnosis she has had two PET scans and both have been clear. Now in the past two months her marker has slowly creeped up. It went into the 30's and then it hit 41, then 51, and last night we found out it has hit 71. My wife has been having serious back pain for some time (painfull enough that she is taking vicodin) and has had a MRI, CT, and X-Rays, all of which have come back clear. She is now scheduled for a Bone Scan and a PET scan to see what is going on. Although I am sure it is scary to hear that the marker can be in the "normal" range and you could still be diagnosed, I think the more important point is the inaccuarcy of the test. Yes my wife and I both stress out over every test (to the point that we both take xanax), but we both always say we should not focus on the negatives and should instead focus on the positives.

I would like to add as a husband of a survivor who is constantly struggling with this horrible disease I am constantly amazed at the strength and courage of my beautiful wife. I hate the fact that it took her diagnosis to bring us closer together (you never realize what you have until you could possibly lose it) but it has changed our lives in such positive ways I can not begin to explain. It has also introduced us to other amazing people (through the 3-day walks and at her treatment center). I pray that we find a cure soon so that my daughter always has her mommie and that I will always have my best friend.

Chelee

I'm going through the same thing here...meaning I am really stressed out about elevated tumor markers.  I have an aggressive form of bc...Her2/neu...had 5 positive nodes.  DX in Dec. 05 & have been NED.  But my tumor markers were always very stable...usual 15 and 18 for the first 2 yrs.  (Had them done every 3 months.)  Then over the last yr & 1/2 they started creeping up from 15, 18, 20, 23, 25, & now 46.  YIKES.  I am so scared.

I just saw my onc this last Monday and since my markers were 46 that day & the reference range is 38 she ordered a PET/CT for me.  She says NOT to worry...yet followed that up by telling me there are all kinds of new chemo drugs for my type of breast cancer.  (Gee thanks.)  Now I am really scared.

So as mentioned...they were 46 last monday...and she had me go to the lab & have then ran again that day...I called and in one wk now they went from 46 to 53.  (There going up faster now there ever before!

How many here has had this happen and it ended up being nothing...or caused by an benign condition?  I wouldn't of worried much but since mine were always so stable...its really worries me how they slowly have climbed up and I've not added any new medications, supplements, etc.  I heard inflammation can cause an elevation.  Has any of you had then rise slowly over time and it turned out to be nothing?

Chelee

Chelee

If anyone that posted in this thread about their own HIGH tumor markers and were waiting on results of their scans....please feel free to update us all and let us know if you got the all clear and your tumor markers were just a fluke so to speak. 

Chelee

radiant

For me, last year, slight, slight changes in my CEA (1-2 pts continually going up) over 3 month period = over 5cm recurrence. So, for me, rising CEA is a real concern. I'd be concerned over rising TM's.

 - Kim

Chelee

Kim,  Thanks for the reply.  Believe me...I've been REAL CONCERNED over these rising markers.  I haven't been this concerned or scared since I was first dx!  I am terrified.  Especially since I've been bringing this issue up to my onc for a yr now.  She kept saying unless they doubled she wasn't that concerned.  (Well I am!)  Plus I've complained of scapula pain and my lungs NOT feeling right.  I am freaking out & I'm not ashamed to admit it.  My TM'ers were always 15 & 18...then exactly 4 months after I finished Herceptin they started slowly creeping up. 

I am SO SORRY to hear about your recurrance.  That sucks!  I'm Her2/neu so I'm afraid of a big recurrance like you had.  My onc let mine go without ordering a PET/CT till they hit over the refererance range of 38.  They hit 46 before she decided it was time to check.  I WANTED them checked at 20.  She pisses me off. 

How are you doing now Kim...are you doing ok?  Where was your recurrance...did you kick cancers butt?  I pray your alright and they found the right combo for you to get you back to NED. 

Chelee

abbyglp

Well,  about 3 months ago I twisted my ankle ( I thought anyway) the swelling and pain were unbearable, and it hurt so much that I did not pay any attention to the fact that my sinus headaches were getting worse. Well in the meantime my doc is drawing TM's and they are rising I mean really rising in the 100's, So she sends me for scans and on the bone scan she was surprised to see that there was healing and my CT was clean..... So my theory on these tumor marker tests is that there are to many B9 reasons for them to go up, and do not worry about them until the results of the scans come in.. My ankle might have a stress fracture and pulled tendon I find this out tomorrow with a MRI and I am on an antibiotic now for my ear and sinus infection. I get my TM's drawn about every 3 weeks so I will let you all know if all this other stuff I have going on is the real result of my rising TM's. We should keep a list of all out current ailments other than cancer see when we have a flare up in out blood work and how it all conects. They are very stressfull and I do understand why some oncs do not tell there pt the results of them. Hugs

Chelee

Hi Abbyglp,  Sorry to hear about your ankle...thats got to be painful.  Ouch!  My right ankle, foot and lower leg has been swelling up and hurting me for a while now.  Wasn't sure why?  Thought maybe it was the way I was sitting?  But my worse nightmare came true...I got my PET/CT done Monday the 21st and my onc called me Tues the 22nd to tell me the news is not good and to come in.  (Ankle swelling is from my femur that has cancer in it.)

So my markers were going up for a reason...I do have recurrance.  (Damn fricking cancer...I hate you!)  The PET/CT shows recurrance in chest wall, right axilla, right femur and right lilum (Butt).  But after getting home I read the scan myself and she is wrong about the chest wall...it says STABLE and most likely from post surgical changes.  (I've had a big seroma in that spot for 3 yrs...its hard as a rock now.)  The scan shows NO increased uptake/activity.  So why she told me that and scared me more then she should have is in-excusable!!!  I realize the cancer is still back...but I don't need her telling me its in places that its NOT. 

I am offical stage IV now too...also Her2/neu 3+++ like you.  So I'm suppose to start Herceptin Monday and Zometa.  I do the Herceptin going till I get my second opinions.  I was hoping and praying my markers were up for all kinds of B9 reasons...but doesn't look like it.  I'm so depressed...I don't want to do this again...but all you guys so get IT.

Chelee

helena67

I am sorry Chelee. I was hoping you would have gotten better news than that. Hopefully the Herceptin will kick in soon and you will be NED. Do you feel comfortable with your Onc - I have the feeling from your posts that communication could be better. I hope that gets better or that you find someone you like better and you have full confidence and trust in. That is very important I think - no need for unnecessary extra stress on top of all of this! Maybe you should also get a second opinion for peace of mind - maybe there are some great studies out there that you could consider participating in...

Helena.

mmm5

Chelee

I am sorry about your news, but getting back on Herceptin is great! I know many that keep NED by staying on the big H.

Can I ask you about your femur? Do you have pain in your femur? I have had for awhile but put it down to the drugs as it comes and gos. I feel sore all over too my feet and ankles are not swollen just sore all the time and have a hard time standing after sitting.

abbyglp

Chelee, sorry you got the bad news, but doing the herceptin and zometa is a breeze and a great start to kicking some cancer cells down. What else does she have in line for you. I have been on taxetere and like I  said in the earlier post I have had healing of bones from it. It is strong and the SE are doable, I would suggest nipping it in the bud with those 3 they are a great combo and you will be ned before you no it. Hugs abby

Fidelia

hi Chelee - on the recurrence thing - my former onc only once did CA15.3 - pronounced me in remission and then promptly ignored 2 really suspicious lumps in my back - they were skin mets - more seriously I had spine and skull and scapula mets and was almost unable to walk as the skull mets were so advanced they were pressing on my brain causing disorientation - but the onc was still NOT worried - I changed the onc started on zoumeta and femara after it was OBVIOUS tamoxifen was NOT working after 6 years and inaduqaute monitoring - also on zoladex to shut off ovaries - washup - CA 15.3 went from 186 down to 16 in a year - but now sadly rising - after the new onc for no apparent reason decided I didn't need zoladex any more - back on zoladex and praying for those markers to go downwards - recurrence is the pits - in my two experiences it has been terrifying and swift but both times been lucky to respond to hormonals - just not sure how long one's luck and nerves can hold!

helena67

Hi Fidelia,

I read some of your posts. I was wondering if you could go to a large city hospital, for example in Sydney, for at least a second opinion? I am sure the breast cancer care should be up to date there?

I don't know how difficult or easy that would be - I have never been to Australia so I am not familiar at all with the health care system. Best wishes

Helena

jezza

Hi Fidelia

I am sending you a PM. I am from Australia.

Sorry that you're having such a hard time.

Hugs

jezza

Anonymous

Chelle:  I am sorry to read about your recent news.  I am still trying to wrap my stage 4 diagnosis around my head.  Good and bad days.  My tumor markers CA15-3 and CEA were the first indication I had mets.  Almost made it to 4 years.  I am er/pr negative and her2+.  My current treatment is Xeloda and Tykerb.  I have been blessed as I am not getting the side effects that others have had.  Just difficult sometimes to deal with all the emotional stuff.  Sending hugs and prayers to you.

PINKRIBBONANGEL

I hate tumor markers.I was always a basket case waiting wondering. I have a new Ono she also does research at IU Med Center in Indianapolis and she does not believe in tm. Because they are not accurate. Did you know that you can have a cut finger and that can throw off your tm. So try to remember that went waiting for your results. I just read an article about how important it is to eat foods high in antioxidant's. It was researched by 2 physicians that both had cancer. They traveled the world to find the food richest in antioxidant's, tell you how to fix it, how often to eat it, how much to eat, and what type of cancer it's good for. Prevention magazine.com.

To everyone reading this blog remember this is your body and only you know your body if you don't feel right, if something feels wrong trust yourself. Call your doctor and tell them you want a pet scan, a chest x-ray, MRI, explain that you have to have something done, that you are a nervous wreck. Any good compassionate physician will do the test. Remember this is your body, your paying the bills, and unless the doctor is planning on dieing for you they will test. Speak up ladies. I think many times doctors just don't know what it's like to be on the others side, the terror filled side.

bonbon47

Now that I've read BCWarrior's story I have to admit I now feel like at least I have a fighting chance.  My CA 27-29 marker from a blood test last wk. is at 217 and needless to say I am very upset.  Original diag. of Stage 2 was in May 2000, went through a mastectomy w/ 14 nodes taken and only one BIG one was cancerous. Had 5 months of AC and Taxotere and was cancer free in Jan. '01.  5 years of Tamoxifen and had good tumor markers (between 35-39) through April 2008.

In 2006 I lost my job and have not been able to find an other permanent job and not too many temp jobs even through agencies.  So due to unemployment I have no medical coverage and had to be very prudent as to which doctor/tests I could afford to pay for.  Now I am faced with this high result and am not only concerned, but ticked off because it's back, but at least now I know I still have a chance of,hopefully, being her and in good enough shape to see and spend some quality time with my first grandchild, a girl, due end of April.

pdiddysmom

I know what you mean exactly!  Try to take a breath... I think it's our new job to worry about EVERYTHING! ( if only someone paid me to worry...I'm so good at it now, lol) My grandma used to say the things you worry about never seem to hurt you , bit's the things you never pay attention to that bite you in the butt!  A little ativan never hurtas teh worrying either!!!!!!!!!!!! Prayers your way

MaddyMason

Jumping in rather late here- hope people are still reading this thread. Anyway, I'm sure I have the strangest case ever- and talk about worry and anxiety! My story is long, but as briefly as possible, I am 63, dx in Aug '07, Lobular, ER+ Her2Neu-, 5 nodes involved, with immediate PET scan showing lesion at T-11 on my spine. So talk about shock- Stage IV on Day One! Markers were very slightly elevated- couple points, one was normal. Radiation to spot on spine, Arimidex, lumpectomy, no chest wall radiation, no chemo. Six months later markers climbing alarmingly, onc. switched me to Faslodex. Developed sudden and severe Polymyalgia Rheumatic (PMR), an autoimmune disease of extreme inflammatory pain. Took 6 months to get a diagnosis- docs kept telling me it was more cancer.

In April '08, PET scan showed 6 new lesions on my spine, by then, my markers were in the 400's! Started on Zometa, Xeloda, Avastin, and switched back and forth among Arimidex, Femara, Aromasin, and Faslodex. PET scan in July '08 showed "diffuse hypermetabolic uptake throughtout my entire skeleton!" I now had cancer in virtually every bone in my body, and the treatments weren't working. CA 15-3 and CA 27-29 were up to almost 500 and 900, respectively. I finallly got diagnosed with PMR, and at that point elected to discontinue most of the mainstream treatments (which were making me worse) and continue with an alternative doctor and my open minded onc. I got 100 grams IV vitamin C drips twice a week, a huge fistful of other supplements, clean diet, plus 50 mg. per day chemo drug oral Cytoxan and large doses of Prednisone to get the inflammation down. In 10 months my inflammatory blood markers had returned to normal (from being the highest my rheumatologist had ever seen) and my cancer markers came down to 139 and 300.

Finally, in May of '09 I went to a new radiation oncologist who was concerned that my previous 3 PET scans had shown so much widespread bone mets. He ordered a bone scan, and to everyone's shock and delight, absolutely NOTHING showed up! So here I now sit, 2 years out from a dx of "cancer in every bone in my body" to nothing at all in my bones. It is unclear if there was all that cancer in my bones and it went away, or if it was never there in the first place.

I still struggle with the PMR if my dose of Prednisone gets too low. Then I have to raise the dose for a while to get it under control. Last August I fell down 5 steps off the porch and very badly broke my wrist- hospitalized 4 days, surgery to implant external fixator to pin bones back together. The surgeon assured me there was absolutely no abnormal pathology evident in my bones or joints at all (at least in my arm!) not even any arthritis, much less cancer. During the winter I had a PMR flare-up, and cancer markers went up to about 400's. Now, latest blood work from last week shows they are coming back down again, but they still hover from about 200 to almost 400. My onc. and my rad. onc. think it is inflammation causing this, as I have had no evidence of disease for over 2 years.

So, yes, I do worry about those astronomically high marker numbers, but it is what it is, and my onc. says I'm doing very well, stop worrying about it, and just keep on doing whatever I'm doing!

So what do those markers mean? Who knows. I laugh when I hear people worry about numbers going up 5 or 6 points when I have numbers in the 400's!

Love to All

Maddy

Oopher1

Thanks Maddy for your post.  It makes me feel better.  I too have a problem with my tumor markers going up and down and staying higher than the norm.  I have scans done and they always have come back clear of any metastasis.....I too have alot of inflammation with the arthritis in my knees(at one point I could hardly walk without having tears in my eyes, as they hurt so bad)...... I also have MS and a seroma in my breast since have the mammosite placed for radiaiton...... ...inflammation can really throw off the results.

Glad that you are doing well now.  That is most important.

Ruth Ann

DX;  2/07 IDC Stage 1, 1.1cm, no nodes involved erpr+ HER2+ 

Pat634

My Onco sets the 'normal" line for CA 27.29 at 40 and mine bounce between 35.5 and 46.5. Every other visit they go up and then back to below his normal line. Coming close to my two year mark (Oct 1st) so getting a little anxious because I have labs, bilateral mammo and onco coming up all within the next 3 weeks plus I have been extremely stressed about an unrelated matter for just over a month and now everything is out of whack (glucose levels are through the roof, bp up, etc). I still have my chemoport that has to be maintained on top of everything else.

Chelee

As you probably already know tumor markers aren't always reliable.  That's why alot of onc's don't like to use them.  However for some of us they prove to be a really good tool to use.  They work well on me.  If your markers are bouncing up and then going back down...I wouldn't be as concerned.  It's when you see a gradual increase and keep going up that would worry me. 

Lots of things can make your markers jump around...but seriously...when they go up and don't go back down is when I would get concerned  You have alot going on right now so it's understandable why your feeling anxious right now...I would be too!  I think once you have your mammo behind you and get the all clear...that alone will help.  And hopefully knowing if they go up and down is usually nothing to be of concern will help you.  Hang in  there...I know it's not easy.

Chelee

NormaJean65

I usually lurk but I am going to jump in here for once.  After reading everyone's post once again I want you all to know that my heart aches terribly for all of you going through high TMs and reocurrances. 

My first CA27.29 was prior to surgery & chemo at a reading of 31.  Three months after finishing my chemo combos but still on Herceptin my CA27.29 read 40.  Panic set in & onco doc didn't have any suggestions as to why but "don't worry, I would be very, very, VERY surprised if there were anything to be concerned about".  Okay, that is when I started searching for some answers thus finding these forums helped a tremendous amount.

I now know it was't enough to go into a tailspin BUT I have decided two things & told the onoc doc that I don't intend to go back to "Chemoland" and I don't want to know what my CEA or CA 27.29 is.............period.  I will take a copy home in a seal envelope with me.  Let me know when the score gets high enough to be a crisis.  Until then I want to live in peace & calm and enjoy each day, especially with my grandson.  It is in God's Hands and has been all along.

Some of you will probably think this stance or attitude is crazy but it works for me.  In fact next Thursday the 2nd I have an appt. for the CEA (which has always been good) and CA27.29 blood draw.  At the time it was done I had been nursing a sprained or pulled muscle in my back (this same area flares up about once a yr for 30 yrs.) thus inflammation present so I don't expect that the numbers have improved but I won't know.  I hate BC and the roller-coaster rided it puts everyone of us on.  I have enough anxiety in my daily life w/o the TMs driving me over the edge.

Hoping everyone has a great Memorial Day weekend and be thankful for the ones who fight to keep us free.

Catherinea

I just want to say thanks to all you wonderful ladies out there, for sharing your stories.  Like many others I live in a state of heightened anxiety especially around onc appt. time and dread the delivery of tumor marker numbers!  It's so reassuring to read your responses to this post and has made me worry less about a slight rise in my marker numbers!  Good luck to you all and many thanks!

Catherine 

calamtykel

I want to thank Norma Jean - my tumor marker results were due in to today and I was supposed to call about them.  I have decided I am not going to; at least right now.  I have now read enough on these boards and on the internet to know that many things can throw markers.  If it goes up and continues to go up, then I want to know about it, but not until then....................

I've been a wreck since Tuesday and I really don't think I can do this every three months!  I'm finding many women on these boards NEVER have their tumor markers done because their doctors say they are unreliable - in fact, I also read that the American Cancer Society recommends against have them regularly checked.  My doctor explained it was "just a tool" as part of a bigger picture, but I think we as survivors are so used to going zero to 60 over every little thing, it can cause us a huge amount of stress. 

Jwatrlily

I too am in the category of the CA 27-29 causing high anxiety.  As a matter of fact last Thursday when I had to go in to my Onc. for a checkup and get my recent CA 27-29 results, my blood pressure was 156 over 84 and for months it has been consistently running about 110 over 64, only occasionally varying a point or two higher.  As a matter of fact it has been so low that my PCP took me off my bp meds the end of April.  So, we all stress about the CA-27-29.  My first one was 19 and this past week it was 14.  Onc. Dr. says anything below 35 is considered normal and he too said it wasn't a perfect test but a baseline to start from.  Wish they could design a test that would be more accurate as sitting here waiting for something to happen with recurrence or mets is what is horrible.  Especially for me because I'm Triple Negative and have a 10 to 15% higher risk of it coming back over regular/hormone positive breast cancer.  I try every day to leave it in God's hands and not over stress and think about it to much.  I do a ton of praying, not just for myself but all people suffering from breast cancer.  I was the first and only woman in my immediate family to be diagnosed with breast cancer (other then a first cousin).  I will be 60 years old next month.

Hugs ladies,

Juanita