Obsessed with tumor marker number?

KristinSchwick · 08-17-2012, 06:41 PM

So I am trying really really hard not to view my tumor marker number (Ca27.29) as a survival statistic or something, but I know if it goes up again I'm going to freak out (again).

Anyone out there feel just great (aka stable to mild progression) and have elevated (not normal) tumor markers.

I feel amazing, I jog, I bike, and do all the house hold chores including taking care of a 2 year old boy. BUT........ my tumor marker makes me sweat bullets and keeps me on edge.

My therapist reminds me to judge "my health" on how I feel physically and not rely on "a number", my oncologist says the same damn thing. I can't let it go- though. Any advice out there?

Love to all fighting!

Debbie L. · 08-18-2012, 06:43 AM

Hi again, Kristin (I replied to the AI thread just now). Maybe we're the only ones up this morning.

First of all, I don't know this from my personal experience, but from that of friends. There are many ways to live with advanced breast cancer -- many "styles".

Some women (and men) are most comfortable with lots of MD visits, lots of tests and scans -- they feel they are staying on top of things that way, and will catch progression quickly, change treatment early-on, and keep progression under control.

Other women feel that frequent MD visits, tests and scans only keep them in a heightened state of anxiety, without offering any real survival benefit to them. They also often use the analogy of a toolbox of treatments available to them. They say that they don't want to use up their tools any faster than they absolutely have to -- that staying on the current treatment until they are sure it is failing them will give them more time overall. They are comfortable waiting for symptoms of progression (and they do check them out when they appear, they don't ignore symptoms).

And then of course, there's most people, who take more of a middle-of-the-road approach.

No one approach is the right one for all. It's more of a style preference, and sometimes people will have to shop around for an oncologist whose style is a good match, to make this personalized thing work best. So your job is to decide what works best for you. Maybe you'll decide that you don't want to do tumor markers, or maybe you'll decide that you're more comfortable with some information on the table -- your choice, your decision.

The other thing that can help somewhat with test anxiety (at least it did for me), is to remind yourself that the future is uncertain (for everyone, but cancer heightens that awareness). I would say to myself "my lifetime might be shorter than I thought -- do I want to waste even one precious moment of it fretting about something I cannot change?". Sometimes that would be enough to snap me out of the obsessing (not always, but often enough and with practice I got better at it).

Thinking of you, sending love and good thoughts,
Debbie Laxague

Mtngrl · 08-18-2012, 08:18 AM

Dear Kristin,

As usual, Debbie has wise and beautifully expressed thoughts on the subject. The question of a mismatch between how one feels and what the cancer is doing, and that of how vigilant one should be, comes up fairly often in my in-person Stage IV cancer support group. It's tough.

For whatever reason, my cancer doesn't throw off tumor markers. From what others tell me, it seems advisable not to put too much stock in the numbers. As Debbie says, maybe you'd even rather not have them measured.

My challenge lately is to see "stable" as equivalent to "well." It's analogous to the way I learned to deal with growing older. I'm 58, and I remember when I thought people that age were ancient (and decrepit, feeble, maybe even senile). I decided to quit thinking that way. How old would I feel if I didn't know how old I am? Honestly, about 30. With cancer, I ask myself how I would rate my health if I didn't know I had it. I would say it's excellent.

If I stayed this way indefinitely I'd be satisfied with that. The nice thing about being "stable" but not quite NED is I'm not losing ground. The news in May that my cancer had progressed was quite upsetting and depressing. The next two scans showed stability. I'm learning to think of it as good news.

One more analogy: I remember my economics teacher in high school asking us if a business HAD to make a profit. We said yes, but he then challenged us to think that through. If the business can meet all its expenses and keep doing what it does, then that's good enough. Profit is nice, but equilibrium is perfectly acceptable.

Through all this, I realize that if I let fear paralyze me then, in a very real sense, I'm dying of cancer. I choose, instead, to live with it.

Mary Anne in TX · 08-18-2012, 10:05 AM

Kristin, tumor markers are accurate for some and wacky for others. My track record showed them to be accurate for me, but not by the exact number. Maybe if you just looked at the range of numbers, 10 - 20 pts. or something, it would make you see if differently. The lowest mine ever got was about 26 or 27 I think. It was 31 last time and 37 the time before. But we had tracked it for so many years that my onc. and I both thought it was good to have my port removed. I'm believing like a "it's gone for now" person. I think a bunch of things make it fluctuate. It's just a tool. Think of all the people on this site who have a test that looks like the cancer is back and it turns out to be something else. Give yourself a week more to worry about it and then get on with having some fun! Plan something you really enjoy. ma

hutchibk · 08-18-2012, 10:13 AM

Elevation after one lab is not to be worried about. They can jump around.

As I was told, if 3 readings keep inching (or jumping) up up up, then I would start looking for the cause.

I, personally, have been very sensitive to TMs, so a 15.3 or 27.29 (similar TMs) are very very meaningful for me, even though I have NEVER had any symptoms and have felt great. I hover in 'under normal' ranges, too, even when they have inched up over three consecutive labs. Because of that, we have found spots really early (especially brain spots without any symptoms) and been able to treat them successfully when they are small. I am kinda lucky that way.

All that said, NOT everyone is sensitive at all to TMs. A lot of folks have them bounce around and rise and fall over more than 3 labs, and they have nothing at all going on. A lot of folks don't have lab readings tell them anything.

Best wishes! (JMHO, I would push for them for at least 3 labs - about 1 or 6 weeks apart - and if they have continued to inch up, I have scans, PETs and brain MRIs done...)

BonnieR · 08-18-2012, 12:03 PM

You have received some great advice here. Mntgrl and Debbie espressed what I was thinking . It occurred to me, that if the TMs upset you so, why not just have the doctor know the results. let him tell you if there is need for concern.
I think the biggest issue is quality of life and not letting this obsession take time away from living and enjoying the day at hand. We are giving the cancer even more power by allowing it to take over our thoughts and emotions. It is a hard assignment but try to remember that we can only be thinking of one thing at a time, make it something good and joyful. Stay in the NOW. Keep the faith.

StephN · 08-18-2012, 12:13 PM

Dear KS -

In studying your signature, it looks like you have had bone mets only.

My expereience with so many women on this site is that the tumor markers are not normally sensitive to bone mets or nodes only involvement. It seems that those with organ mets are the most sensitive.

This is just a generality from years of reading these boards. But I think you can look this up and find the same info elsewhere.

Thus, if you do not have other mets besides bone, I am curious as to your high marker.

This is another reason I would think that a HER2 Serum Elisa would make sense for you.

Brain mets are usually sensitive to CEA, which not many people use either.

Perhaps there is another type of circulating tumor cell test that would put to rest what is going on in your blood.

chrisy · 08-18-2012, 10:39 PM

Lots of perfect answers. For me, mostly markers have not been meaningfully accurate. So we did not track them. The main one that ever worked was 19.9 not even a bc marker ( but made some sense as I had liver involvement),,, lasT summer there were a lot of changes so we began tracking them, and the seem to have followed what was going on since December. I've had a bit of bouncing around tho.

I have scans on Tuesday, and as my onc says the proof is in the pudding. She agreed to run occasional markers as long as I promised not to needlessly freak out about them.

It's different for everyone of course. I like Debbie L and mnt girls advice.
Wise women

Ellie F · 08-19-2012, 03:02 AM

Here in England we don't get markers done for bc. We also routinely don't get pet scans unless specific circumstances or trials. So we rely on ct scans at 6 monthly intervals mainly.i often wonder if this is good and my brilliant onc did my markers once because I pestered so much! His view though is that they don't work for everyone and create MUCH anxiety.
Ellie

Jackie07 · 08-19-2012, 09:26 PM

Kristin,

There's a Chinese saying describing how a person would be 'scared by ropes made of straw for at least 10 years after experiencing a snake bite'.

We have all been bitten by the snake (aka. cancer), so it's natural for us to be obsessed with...

Looking at your signature, I saw that

"May 2012: ovaries out, markers stable but elevated."

Based on everything I've learned (remembered) from the Board about 'markers', a surgical procedure is one of the reported factors that could elevate the number. It seems logical to me that the elevation of your marker could have been caused by the surgery in May. It's going to take quite a while for our body to heal, tissues to mend...

Try to focus on the part that says 'the markers are stable'... I'm sending you good vibes.

Rolepaul · 08-20-2012, 08:23 AM

Long time ago, in a land far away (okay 27 years ago in San Diego California) I used to work on the Cancer Diagnostic tests, among other things, for a company that no longer exists. I can tell you that eachbatch of chemicals was compared versus a "Standard" however there was significant variation on the lower end values ( the ones not blazing hot), just due to how the product is made. You might see a 9 one time and a 15 the next with the same sample. You need to worry about a trend that increases steadily over an extended period of time 6 months to 24 months, or that goes from 27 to 140. Other wise, from a development team member, do not worry about the results of the tests. The doctors might not be aware of these variations, but they should be. Newer testswill be better, but that is not the case presently.

KristinSchwick · 08-20-2012, 10:40 AM

Rolepaul, Jackie and others. Thanks for all your responses! I was looking for someone to say that tumor markers are not worth putting all my eggs in. I freak out when the markers just increase a few points- and I'm trying to let thinking go.

We did take a step forward and moved tumor markers to every 6 weeks instead of every 3, and I'm not interested in further testing to "know" more. I wish I could know less without being completely ignorant.

Rolepaul · 08-20-2012, 10:59 AM

Think of markers as like the tachometer on your car. Going 35 mph and seeing 1200 rpm on the engine or seeing 1600 rpm on the engine can just be whether you are going uphill or downhill. Seeing 3500 on the engine, or slowly watching the revs climb over time for the same speed on the same hill, might mean the clutch is going out. The markers should be viewed the same way. Going from 25.5 to 41 in four months for the CA 25.5 got a bunch of momentum for additional testing for Nina in 2009. What I want to say is that each marker has its own variability. You, or your healthcare team, needs to know what is normal variation. I can call the maker of the test and ask, but I know whom to ask and what to ask. That is not fair to expect that of very many of the people on this forum. If you want to know about the tests, the literature is there, but it makes reading the Old English version of a dictionary easy. I say that the more testing and trending that goes on, the earlier you might catch an issue but the more afraid you will be.
If you are worried, the internet can make you knowledgeable. But if you can interpret the data and apply it to your particular situation, then you become smart. Data without meaning is useless. If you do not understand, ask your doctor to explain it. If he does not understand, ask another doctor. If nobody helps you get a warm and fuzzy (or terrifies you) then you need to work harder to contact the test developer, the test manufacturer, or maybe even a pharmaceutical ro device company technical support person. Many of them love to help patients that want to know more.