Tumor Marker blood tests are creeping up...going CRAZY

Imagine

Please someone out there let me know if this has happened to you and what was the outcome. I have been dealing with this since March 19. I went for my regular check up on March 6 and my CA 15-3 was slightly elevated at 32.1 ( the range is 0-25) My MO sent me for all the scans CT and bone. All came back OK except there were intrapulmonary lymph nodes in the right area between top and bottom lobes. This would have been an incidental finding in someone without prior BC history, but because I have a history of IDC in 2007 Stage 2A, estrogen and progestrone positive grade 2, They are repeating the CT Scan next month to see if there are changes. I have no symptoms. The CA 15-3 was repeated last Tuesday and is elevated this time to 36. I know those are not big numbers my mine have always run in the 10-20 range. I am losing sleep over the anxiety of waiting to find out if there is something going on. I have read where if it is going up they do look for finding it somewhere, it has been 12 years since my original DX and I feel like a time bomb. Any advise or comments would greatly be appreciated. Thank you.

BevJen

Hi, there. My MO uses the CA27-29 test rather than CA15-3. In May 2018, my markers began going up. I had a CT plus a nuclear full body skeletal scan. Nothing. Next visit to the MO was in October. Markers were up again. Again, we scanned, same tests. Nothing. Then I asked for a PET/CT. Nothing. I saw her in January again. No scans, no tumor markers taken. All other blood work was absolutely fine. No symptoms at any time. Doc said that something could be "brewing" -- no further insight. I did find some articles that said that markers can rise 4-9 months before anything shows up. Just had 6 month scans again -- PET/CT & diagnostic CT showed some kind of a wrinkle in my liver. Also thought that might be bone mets developing. Had a full body nuclear bone scan -- no bone mets. Had an MRI of my abdomen -- bingo. 5-6 spots. Had a biopsy earlier this week; awaiting results, but suspect liver metastases. So it was a full year for me with rising TMs. I am 16 years out from my original ILC diagnosis, and 13 years out from a single site metastasis to my cervix, with no other issues all along. So it can happen.

You may have better luck than me in getting a second opinion. My second opinion said -- don't worry. Maybe it's nothing. Had I known that an MRI of the abdomen would be so much more precise re my liver, I would have insisted on it. But how would I have known that? You might ask your doc for a nuclear bone scan (to check for bone mets) and an abdominal MRI to look for mets now. I would have done that months ago if I had realized it might make a difference.

Good luck.

Bev

Imagine

Hi BevJen

Thanks for the response. I had the nuclear bone scan same day of the CT of the Chest and full abdomen. I will ask about the MRI of the abdomen. They did the full CT of the abdomen and saw the lung nodes I mentioned in first post but nothing else. I am 12 years out. Where you Estrogen +. It seems you never get out of the woods.

vlnrph

CA 27.29 and 15-3 are just two ways of looking at the same thing. The lab at my clinic recently changed from one to the other and provide a mathematical conversion factor so both can be compared.

It would be interesting to know how dramatic the jumps in Bevjen's numbers were. Since tumor markers are notoriously unreliable to predict or even assess metastatic disease and are only useful taken in context to evaluate trends, many doctors don't bother with them unless they know that they are helpful in any given patient.

Also, an MRI is sensitive but not specific. Meaning that it sees lots of things however further analysis like biopsy is required to get a definitive diagnosis. Along with PET scans, they are some of the most expensive imaging modalities out there and almost always need prior authorization from insurance so be sure that is obtained or you could be facing an enormous bill...

BevJen

My TM jumps were unusual for me. I've had tumor markers taken since my single site metastasis to my cervix in 2006 because my onc uses them regularly (she's not a scanner). They jumped around a little bit, with one time when they were definitely out of bounds (realized later that I had a slight fever when that sample was taken and then they went back to normal.) Then, in May 2018, they were at mid to high 50s, then jumped to 95ish in October, then in January 2019 (the last time I've had them taken) they were at 181 -- so roughly doubling each of those times. That's when I went into panic mode. Tried to figure out what had changed. Strangely, the biggest change for me was that, after not really ever exercising in my life, I had started doing pretty vigorous aqua fit classes about 3 times a week and started upping my steps. So much for living the healthy life!

I am estrogen + and progesterone +, HER 2 -. When I had the liver biopsy they took an additional sample to send to Foundation One if the biopsy shows that the spots in the liver are malignant, so, of course, that could have changed now.

Re: the lungs -- I just remembered that the last scans that I had had prior to this round, in about 2007/2008, had shown something called "shotty" (?) spots or something like that on my lungs. This threw my docs into a panic that I had lung mets. After several scans, the consensus was that what they saw was some type of artifact from earlier surgery, and that was the end of that. I hope that for you. It at least gave me peace of mind from 2008 until 2018.

As I said, I'm still waiting for the liver biopsy results. So I don't have a definitive diagnosis yet. Again, though, I was in a place prior to this round of testing where I really just wanted answers because that's the only way I could get a change in treatment (still just on letrozole since 2006). I understand your frustration in trying to get answers, because you are exactly where I've been for the last year -- as you describe it, a "time bomb." I think I described it bo my doc as a "sitting duck." Good luck!

Imagine

bevjen

My MO said that doubling every 3 months is what happens sometimes. But because I am going up very slowly they just don’t know. M readings were 9/18-23.5 still within the 0-25 range for CA 15-3. Then 3/19 - 32.1 over the range and that is when they did all the scans. Then they retest the marker on 5/31- they went to 36. Not going in the right direction. I will have the CT of the chest redone mid June 3 months from the last one which show the intrapulmoary perifissural lymph nodes to see what’s going on there. I’m hoping for you the biopsy is benign. All the waiting is just so a anxiety proding for all of us who have had this disease😳

Leydi

My MO won't scan immediately when tumor markers increase as he says that if you scan too early, the scans won't show anything and then the doctor and patient are falsely reassured. So, after having consistently hovered around 12, when my CA15-3 showed an increase at the next 3-month check, we just kept an eye on it as it was still well within the normal range. When the next 3-month check showed another increase, but still within normal range, we started checking monthly. Each month showed another increase and even when it got a bit above normal, my MO held off on scanning. Then, it jumped 3x in value in a single month and he ordered a PET scan. Yep, mets were identified.

It was about 9 months between the first increase in CA-15 and the scan.

Imagine

Leydi, I’m confused...My CaA15-3 has gone between 10 to 20 for 12 years and it was never a problem. The normal range is 0-30 according to my Doc. It has been since sept 2018 that it was at high normal of 23.8. After six month checkup was 32.1 then last week 35. After 3 months. They only scanned when it went up above the range. I am not falsely reassured because i had scans after it was elevated above the range. It is not going in the right direction as it is increasing so I will get follow up CT in june

Leydi

Barteeellis - I probably worded that poorly. I didn't mean to imply that you, personally, would be falsely reassured by a negative scan. I was just trying to report how my MO justified not scanning yet when I was asking about it with my increasing tumor markers. Your values still look pretty low, just above the normal range. I got a scan when mine jumped from around 40 to 114 in one month after a slower increase over several months prior to that.

Imagine

no worries! We are all on here because we share a concern for our health and I need to have this community as I go through this process. It helps to get all opinions. Where were your Mets and why is your treatments

Leydi

I have mets in several bone locations and in the peritoneum (lining around abdominal organs). That latter location is not really common but is more typical with the ILC that I have. My current treatment is fulvestrant, ribociclib, and denosumab.

I need to figure out how to update my profile one of these days!

Imagine

I am so frightened

Imagine

bevjen

When will you hear on the biopsy? Waiting is so hard. Wishing you all the best

BevJen

Thanks for your kind thoughts.

My doc's office told me that I would not hear about the biopsy until I meet with my oncologist, which is set for a week from Wednesday. However, I have had great success just going to the hospital's imaging center and getting hard copies of my other reports, so I'm going to try that with the pathology report. My onc kind of embargoes reports on the patient portal, so that's the only way I'll get it sooner.

You are right, it is VERY hard to wait. And then again, I have seen people whose docs really understand that and try to communicate results to their patients as soon as possible. My doc is not like that, unfortunately.

In the meantime, I have become a researcher of local treatments for liver metastasis, including both Y90 and laparoscopic surgery with ablation to mets. I've been living on PubMed and oncology journals. I think I've already convinced myself that it's mets, but I'm not going to sit by with this. I've already reached out to the doc at Northwestern who wrote up the use of radiological intervention in breast cancer metastases and have also reached out to two other docs whose names I have gotten from BCO folks at Georgetown and at U Penn, so I've got all three on speed dial as soon as I know definitely what's going on. I'm pretty sure my onc is NOT going to want to go in this direction, but she could prove me wrong -- we'll see.

Try to stay calm. If you are too stressed out, you can always contact your onc and see if he/she will move up the scan because you are anxious -- or at least you can go in and talk to the doc some more.

One day at a time....

Imagine

Thanks so much for your reply. I am also a researcher and am spending lots of time trying to look up how to treat it. You have to be proactive, plus it keeps me thinking somehow I have control! Haha. Could you possibly send me a link to the info you have? My Onc wants to wait until at least 3 months from the last CT to check any new or worsening nodes. Thanks again.

BevJen

Basically I have been looking at the sites of the top cancer centers on the east coast, where I live, and looking at liver-specific topics, since that's my issue. You could do the same with lung mets. Ive also found some interesting stuff in looking at treatments for primary liver cancer, since some of that info is applicable. also, if you google very specific terms you will likely come up with professional articles that you may find useful. I think you can actually search PubMed directly, but I've found a lot without doing that. The interesting thing to me is that you can figure out hospital affiliations on most publications, either through a direct link in the article or in the footnotes, and that has also led me to some info.

Hope this helps.

Bev

KBeee

Hoping the repeat scans are stable. Waiting is horrible. Sorry you're dealing with this.

Les123

I’m scared to death to. I am triple negative IDC went through chemotherapy and unilateral and Clear margins no lymph nodes. My tumor marker after 2 1/2 years has risen to 47.7. I did it PET/CAT scan last week and here are the results. My new oncologist doesn't seem too worried. I am scared to death. I am new to Denver with a new oncologist who just doesn't seem to think any of this matters. Any advice?

Report on scan:

A metabolically active 13 mm short axis subcarinal lymph node is present on series 3 image 90 maximum SUV 3.1. This is new relative tothe prior study. There is mild left hilar uptake without CT correlate,maximum SUV 3.1. Otherwise, no additional metabolically activethoracic adenopathy is seen. Nodal metastatic disease cannot bedefinitively excluded. No additional PET/CT evidence for FDG-avid recurrent or metastatic disease.

BevJen

Hi, there. If it was me, I would push your MO to see if there is any other kind of imaging that you can do to check out further what's going on -- that sentence about nodal metastatic disease would have me concerned. If there's no imaging, then ask her how that lymph node can be checked out. If she still declines to act, I'd ask her why she doesn't want to follow up more. If nothing else, this will give you more peace of mind. Good luck!

Imagine

I think Pet Scans have a lot of false positives, but I would insist on further testing. All of these tests, and Tumor Markers are so frightening, I’m beginning to wonder if I should of ever had Tumor Markers routinely done as many things can cause elevations. All the scans etc are so anxiety producing and then it is hurry up and wait for something to show up. I’m 12 years out and it is come home to me like it was day1 of the original DX.

Les123

Would an MRI be any different? This was the pet scan and CAT scan and one. The risk of doing a biopsy on a lymph node that is non-specific they will not do. Because it's not confirmed that it is metastatic it just showing activity. My doctor seems to think lymph nodes could show activity from bad cold and coughing, high elevation and stress.

BevJen

I just remembered that years ago, I had a suspicious lymph node show up on a CT scan, I believe. I was sent to get a sonogram of the node. I think it was on a high powered sonogram. They could not find the suspicious lymph node, and that was the end of it. Never showed up again, and never got an explanation. Perhaps ask your doc about that?

ElaineTherese

Les123,

Yes, an MRI gives the radiologist a different view than a PET/CT scan. I had *something* light up on my left femoral neck in three PET scans. But, when MO did an MRI, there was nothing there. So, it was considered to be a false positive.

Les123

I asked if I could have an MRI and this is what the doctor said…

“There is no indication to do an MRI after your PET scan. MRI shows anatomy, clear pictures of structure and organs. It does not reflect any activity, so would not be providing any helpful information in this instance.“

topdubu

Mine popped from 41.7 on 10/24/18 to 61.9 on 2/26 and 61.2 on 4/30 and now 97.2 on 7/3. Probably not such good news but scans on 7/30 will tell the tale. We'll see said the blind man.

Les123

Just checking in with you to see how your pet scan went? My tumor markers went down to 32 and my second Pet scan came back all clear.

Imagine

Just got the results from my latest CA 15-3, since end of May they have jumped to 65 from 36, I will be getting scanned again soon. I hope I have something conclusive to go with instead of waiting for the ball to drop. The markers have been steadily going up since last Sept. I am trying very hard to stay positive but this cannot be good, it must be brewing and growing somewhere. Thanks for listening. Stage 4 is so frightening but I am a strong minded person and will do whatever I can to deal with all of this. I’m on the COC protocol from Jane Mccellans book but it didn’t help with the tumor markers. We will see...

trinigirl50

Barteellis

I am sorry to hear about TMs going up. Good luck with scans. Are you on any meds right now? Can they put you back on anti hormonal immediately?

I hope all scans are clear for cancer and they find a different reason for TMs rising.

KBeee

Keep us posted. Hoping they find a benign reason for the rise.

Imagine

Thanks, I am going to ask about the liquid biopsy through foundation one, I understand it is very accurate and can pinpoint what treatments like AI, etc work best for my situation. Also my oncologist called and is ordering a CT Scan of my whole abdomen, chest and lungs again, He ordered it STATas I have been dealing with the possibility of recurrence for over 8 months now. I’m very tired of thinking of the what ifs and just need to accept the reality of what is now.

trinigirl50

Barteellis

I think doing the genomic testing is a great idea. Waiting around is painful and makes you feel worse. Being proactive is the way to go. Very good luck to you.