Hi

Good luck with the scan on Monday. It may well be that your new normal is now in the 30s due to arthritis. They won't know that until your next couple tumour marker tests. As I said before, mine was 20s for 2 years and then I got bursitis and it went up to 40s, it settled back to high 30s. I have ongoing arthritis (made worse by Femara) and when it flares up my markers go up. Right now they are in 40s. After 2 CT scans and 2 Bone scans, a gazillion tumour marker tests, done over the last 2/3 years, I will not do any more scans unless my tumour markers jump into the 50s. And I am only going to do the TM test once a year.

If you have a clear scan on Monday then instead of worrying, just try to let it go.

BTW if you are taking Biotin, that can mess with the tests.

Hope all goes well on Monday.

Bateelis,

Having just gone through this with CA 27-29 over the course of a year (having my TMs tested every three months, feeling great, and then markers going up) I would take this seriously. It IS possible that other things could be making your TMs rise. I thought that was the case with me, because I have extensive arthritis all over my body and I was 15 years from my original diagnosis (and 12 years from a single site metastasis). However, eventually (after a year of rising markers) metastasis finally showed up on my scans. I am not telling you this to scare you, but only to let you know that this is possible. With the CA 27-29, I scoured as many journals as I could find. What I saw with that one is that if it stays below a 100 reading, then it's likely not metastasis, but if it goes higher, there's a probability that it is metastasis. Perhaps you could search for the same thing with the CA 15-3 and see what you can find. And yes, the scans really suck. There's no other way to say it.

Barteeellis,

Oh, I was not saying that you were not taking this seriously. Poor choice of words, and I'm sorry about that! My onc did tumor marker tests for me from 2006 (single site metastasis) until present, but I think it's generally that they use them only in situations with already established metastasis because they can be unreliable. I am of the same school as you -- thinking that it's better to find out sooner rather than later. But it seems that most oncologists do not believe in this because of the old mantra that metastatic cancer is not curable (thus it doesn't matter). Over the past year, I've had this argument multiple times but to no avail because of the ASCO stance.

My MO only does tumor marker tests on those with metastasis. I have mixed feelings on it, but know it is ASCO guidelines.

Hi Barteeelis

Hope all.is well. I know you did scan on Monday.

Thinking of you, may you hear good news today. Keep us posted.

So if possible, think of that as good news. Nothing really showing up on scan, and only small elevations in tumour markers over relatively short period. It may well be nothing and your markers may well have gone up due to your arthritis in foot. Why not think positive? As a Stage 4 colleague said somewhere on these boards, why waste time worrying? There will be plenty time to worry later if it does show up. "Worry does not empty tomorrow of its sorrow. It empties today of its strength."

Words I do my best to live by.

Good luck.

bareteelis,

Although I am thrilled to be doing, relatively, well after 8 years, I do not claim to know why. I will not attribute it to finding the met early simply because studies do not bear that out. At this point, I’m simply a good anecdote, but not evidence of anything. Early on, when I was having PET scans every 3-4 months, my anxiety was usually quite high. Then we moved to every 6 months and now I am on annual PET scans, unless I experience any symptoms. I am much happier and relaxed! Again , this sounds counterintuitive, but it has allowed me to get to a point where my life is somewhat normal . No stress, no false positives, no excessive radiation exposure , no anxious waiting. In the end , everyone needs to do what they are comfortable with.

Trinigirl,

I was not the person who posted that comment, but in a way, I understand what that person means. I have been living with stage IV longer than many. I got to a point where being hyper-vigilant, demanding every test/scan as often as possible all the while watching what I ate and actively fighting progression took up most of my time. There was only one little problem... while I was doing that, I had little time for enjoying life! And if enjoying life isn't the point, I don't know what is. Mere survival is very different from living. Now I know that some would consider this a passive approach (I am not a warrior, fighter etc!) but I do follow my mo's recommendations, take my meds faithfully and call my mo if concerns arise. I still eat, mostly, well but enjoy whatever I want in moderation. I no longer swallow handfuls of supplements or worry that every little thing I do might cause progression. I am much happier to live and enjoy each day than I was spending the bulk of my time trying to outwit bc. If things go south tomorrow, I am at peace knowing that I lived each day exactly as I wanted to. Again too passive for many, especially if you don't already have mets, but I can honestly say this has made me much happier than the hyper-vigilant monitoring and throwing everything at it approach.

Exbrnxgrl. Did you ever consider that maybe you have had 8 good yrs cause your cancer is Grade 1? That is a slower growing, less aggressive cancer. As is mine. I think if I had your doctor it wouldn't be for long. I would be looking for a dr that would be interested in managing it and not just offering palliative care. Yes, my interpretation. I know that is the attitude of some and to say the jury is out whether or not early discovery of mets extends your life or not is simply not acceptable to me. I expect my dr to do more in managing my life. Sometimes these drugs we take actually eliminates some of those mets. We all take them with that in mind. Otherwise why see the doctor. Just more to think about.

GAILMARY

so sorry Exbrnxgrl. I did say it was my interpretation. Like you said. It IS depressing. And scary when people you know have similar disease and they have passed. I took it as pretty negative comments that you took from your doctor. I think you are doing better than relatively well. I'm excited for you. It gives me hope. You also said you were hyper vigilant at first and threw everything it. Again I'm thinking your doctor must not have been too encouraging.

My doctor said even though it would be considered palliative care he would do everything he could for me. I have 30 yrs. (after checking my age he ammended that to 25). I was wrong to assume your doctor wasn't as supportive. I think that was the point. It wasn't just you. And I shouldnt have addressed it to you I see lots of posts here about doctors that have poor attitude. I wonder if they stay current. Maybe they have seen so many die that they dont have alot of faith.

Gailmary

Both my mo and ro were always encouraging, from day one to the present. I am not sure how/why you interpreted that differently. They never gave me any “expiration" date and my ro went so far as to say I would live a long time! In none of my posts have I ever mentioned a negative word about my care team, as I have nothing but praise for them.

I said that I modified my diet (no sugar, alcohol, lots of juicing) initially, and I was quite miserable. The phrase “throw everything at it" generally refers to aggressive conventional tx. I actually went less aggressive, choosing AI's over chemo when I was presented with both as viable options. I hope this clears up some of the misconceptions you had about my tx and helps you understand that I am an intelligent and informed patient.

As to tumor markers, every mo has their POV, which in itself should tell you that it is not a reliable test for many folks.

* Complete disclosure: I changed mo's very early on, even before any tx plan (save for rads to met) was in place. He was the dept. chair and very knowledgeable but spoke to me as if I might be slightly dim. There are few things that turn me off quite so much as assuming that I am not informed and intelligent. My dear ro set up the initial appt. with the woman who has been my mo since then. As I said, I adore her!

I'll chime in, in ref to "did your markers go up over normal when they DX you with Mets" - mine didn't. I was stage IV de novo with a 2.1 cm mass in my breast and bone mets. Normal tumor markers, then and now. My doc still does them about every other month, just in case they go way up, I guess then we'll know something is definitely going wrong

exbrnexgrl,

Your post and comments have helped me tremendously! I am close to 3 yrs post diagnosis of stage 1, aggression level 2, node negative, Ondx score 28 left sided b/c. My MO does blood markers every 6 months and called to have me repeat CEA for mild rise (2.1 tp 3.0) since last test. I have been a basket case! I if treating before symptoms increased survival it would be worth it but I feel it just lengthens time living with the knowledge that you are stage 4 and the sadness. Not to mention if it is a false positive you go through the whole "what if" senareo for 6weeks for nothing. I want to tell him not to test anymore so I can live with the feeling that I am healthy until I have actual symptoms. I was so depressed for 2 weeks I had to work my way back to the healthy thinking I developed to deal with my initial diagnosis. I wake up everyday and give thanks for the day and my properly functioning body rather than feeling terror at the possibility of cancer's return.

Nikki