MIDDLE-AGED WOMEN 40-60ish

MimiL55

DianaRose-the pictures are lovely-thanks for posting them! Looks like you got a keeper for sure!

Eph-never been on a cruise, not sure if that is my thing or not, but DH and I are heading to Key West for some much needed R&R next month-getting excited about going.

Mac-never apologize for feeling good-that is the ultimate goal here so yay for you! Still working on feeling good here, but making progress.

Have a wonderful day and keep smiling girls!

barbe1958

Hmm, may have been wrong on the grade one part of my comment above. Someone told me that the oncotype is for ALL stage one breast cancers. Nice to know that some gals won't go through chemo for nothing. The neat thing is that "when" I recur, Tamoxifen will be my fist line of defense!! I won't get into the harder chemos until organs are involved. Here's hoping.....

elimar86861

Yep, it is a decision making tool for all Stage Is of ALL grades.  Now Stage IIs and DCIS can get the test, as they found test results to be accurate for those groups as well.  Women with just a few positive nodes (I think it is 3 or less) supposedly get accurate Oncotyping now also.  

Anyway, Barbe, I'm going to translate that "when" into an "IF," and hope no recurrence ever makes you have to discover the wonders of Tamox. 

Eph3_12

yeah, me too.

Dianarose

just got my tumor marker results. After I had the dam ovaries out it was 58. Three months after taking Aromasin it went down to 37. Now it has been 6 months and it is 31. I am glad it is going down, but wish it were zero. Has anyone ever had zero? Also oncologist wants to do another ct scan. I don't want one. One scan is equal to the  same radiation of having 200 x-rays. He said it is just routine to do one every year. Anyone have an opinion on this? Maybe I am just plain sick of tests.

Momine

Diana, my doc said that the normal range for the TMs is set where most of the bell curve (5th -95th percentile) falls. However, some patients will have TMs slightly outside the normal range every time, even without any active cancer. So, the aim is not 0, the aim is stable at whatever number is your normal.

As for the scans, I dunno. I used to be all about the scans, but 2-3 years later I totally see your point of view. 

elimar86861

Dianarose, You ask the question of us ladies (who you know aren't doctors) so I will answer you as one who also tries to get out of having so many CT scans.  I know that a CT is way more accurate to show what is going on with your innards BUT since it seems that your TMs are showing a decreasing pattern that implies the Aromasin is working, maybe your doc would let you pass on the CT for the time being.  Sometimes it seems like the docs get on that "every year" kick when, in reality, there is room for a more flexible schedule if they look at you as an individual.  Of course, if the TMs ever show a rise, you know there will be no getting around a scan at that point.  

I hear you about getting sick of testing.  

[Note:  The above is coming from a person who got a CT last Sept. and my MO wants me to have one in March.  That's not going to happen.  I'm supposed to have them every six mos. for at least two years.  That would be four over two years time.  I said no to that.  Too much radiation.  I will submit to at least two, maybe three, over that time, and wish there was a way to get out of more of them; however, I don't have the antigen that allows them to follow me with a TM, so the CT is the main tool for monitoring me.  My CTs are "eyes to thighs" and the betting pool is wide open as to which organ will go cance-y next, courtesy of all the darn radiation.]

Dianarose

thanks Momine and Elimar. I value your opinion as you understand. Doctors just get so routine that they forget we have a mind of our own never mind an opinion.  El, I

I don't blame you for not wanting that many scans. Four scans is like having 800 x-rays.  Sounds crazy when it is put that way.

Momine, will my normal be at whatever number it tend to be stable at?

Momine

Diana, I am far from being any expert, and I don't know how TMs typically behave in a stage IV situation, but the basic idea is that you are aiming for a stable level of TMs, same old is good, upswings are bad. The exact number of "same old" is not that important. 

NativeMainer

Dianarose--most
tumor markers do not read at zero even when there is no cancer.Momine is right, it's the trend that is
important.And I agree with you about
the CT scan and the x-ray exposure.My
Med Onc told me that there is no statistical advantage to getting scans, any
recurrence or distant mets would be found about the same size based on
symptoms, and there is no statistical advantage (length of life) in starting to
treat a recurrence a few weeks sooner based on a scan finding rather than
waiting to see if a symptom develops.Now, I am stage 2, very different from you, but I wondering if your doc
can show you a study that shows that statistically women at stage 4 live longer
getting routine scans. My personal opinion is that the scans are a way to
document in the chart that the doc is doing something.Also, we need to remember that the doc works
for US, not the other way around.The
doc can recommend all the tests he/she wants, but if I say "no"
that's it.The test doesn't happen.If you don't mind my butting in on your
question to Momine, your "normal" TM number looks to be in the low
30's.If it rises to the 60's again that
is a strong indicator of something going on.If it goes up to the high 40's or into the 50's something may be going
on, and the test will likely be repeated in 1 to 3 months to see if there is a
trend or if it was a fluke result.  A scan at that point MAY be helpful to see if anything is changing. 

NativeMainer

Another thought--ask you doc what he/she is going to do, how your treatment will change if a scan finds a change that is not causing any symptoms.  If there is not a treatment change to be done, is the scan really worth doing?  

barbe1958

I remember when konakat moved up here to Canada and the docs were STUNNED by the number of scans she got - she was going about every 6-8 weeks for some scan or other. It was so bad they evened questioned where her brain mets came from. It sickened me to read her PMs to me as she questioned her past faith in her docs. Her family is up here and she came home, knowing pretty much it was to die. She hadn't even told her Mom that she had mets yet!

I agree with what every above has said. Waiting for a symptom rather than going on a fishing expedition seems the safer bets. And let's not forget poor Maybe who's tumour markers were in the high 3,000+ when she passed. That was scary to watch...

I know I have Circulating Tumour Cells. That would certainly throw off a tumour marker test...or would it? They don't even test me, they just wait. Like me....sigh.

Dianarose

MO emailed me that 95% of women without breast cancer would have results 38 or less. He had no explaination of why my marker results went down from 37 to 31 this last time. The first time they were  58. I would like to think it is due to the Aromasin so that I am not taking it just for fun. LOL   I think I am going to pass on the dam ct scan for awhile. I had 2 last yr.  I just need a mental break. I feel fine, well other than bone and joint pain from the meds. I have stayed the same weight since chemo, got my hair back, on the meds they suggested, have the marker tests, and feel fine. Just need a break. All my other labs have been fine. Sugar was high, but I sold the bakery so that should help. Does anyone else have the marker tests every 3 months?

Jeannie57

My cancer center doesn't test tm's or do regular scans unless you are stage IV. I had Oncotype test with stage IIb, grade 2, 3 cancerous lymph nodes. It was only one of many factors in deciding on treatment. Diana, I'm glad your numbers are down, no matter the reason!

elimar86861

Dianarose,  Your markers may go lower yet again, but eventually they find a plateau and hover at a certain level.  So far you have had two tests with them in the "normal" range and that is great!   Check back to see what other Stage IVs might reply about the TM testing.  At my stage, my doc does not look for the BC markers. 

Barbe, Were you tested for CTCs?  Was it easy to get that in Canada?  I asked about having that and my doctor gave me "the look" and said they don't do the test.  I don't think CTCs would necessarily cause elevated markers because aren't they in a dormant phase whilst traveling thru' the blood looking for a new home?  I think the antigens are produced once they latch on and begin to multiply.

barbe1958

elimar, my pathology showed the CTCs. I had two surgeries, one a lumpectomy that had "dirty margins" and then the double mast which was approved by the Tumour Board at the hospital. It must have been the mast tissue that showed the CTCs in the veins as I don't recall specific bloodwork for it. I do know my surgeon stressed this and when I first used to post my diagnosis in my tag line I used to mention this. Now it doesn't seem that big of a deal. I'm pretty sure CTCs are active, though I've been wrong this year already. That's why they ARE CTCs. Everyone has cancer cells in their body which are inactive, just waiting for the perfect storm to turn them on. CTCs, from my understand are active. Otherwise, why would they even mention them?

Momine

Barbe, it sounds as if you had vascular invasion, which means that you have to assume that tumor cells got into your blood stream. It does not sound as if they actually did the test to check for CTCs in your blood. 

elimar86861

Barbe, I wonder if that is Canadian terminology for what we usually see in U.S. as lymphovascular invasion?  Just now, doing a quick
Googling around, I did find that CTCs do express antigens.  The antigens I saw mentioned were not CA-15 or CA-27/29, so I don't know if this is something a doctor could monitor with bloodwork.  It is something they do see in a research laboratory.

barbe1958

While I was still lying in the MRI before surgery the technician literally came dancing in the room clapping his hands and telling me I had vascular invasion!!! The surgeon never mentioned it, nor has my onc. I didn't get blood work, it was what they found in the tissue, I thought YOU were asking me if I had a blood test.....

This is what I got off Wikipedia and this is what I understand I have:

Circulating tumor cells (CTCs) are cells that have shed into the vasculature from a primary tumor and circulate in the bloodstream. CTCs thus constitute seeds for subsequent growth of additional tumors (metastasis) in vital distant organs, triggering a mechanism that is responsible for the vast majority of cancer-related deaths.^[1]

This is why I said above that they weren't "sleeping" but were actually active. That's why I have always been vigilant in knowing what is happening in my body. I'm not quite sure what you're saying about it being a "Canadian" thing as I'm pretty sure a lot of your top docs came from Canadian schools. We're not a third world country up here . Here's another note from the same site about blood work:

Analysis of CTCs from blood samples could be an invaluable tool for early stage detection of cancer as well as for neoplastic progression and recurrence monitoring.^[7]Blood tests are easy and safe to perform and multiple samples can be taken over time

barbe1958

I was told there was no point in getting blood work checked as they already KNEW I had CTCs!!!

elimar86861

Barbe, To clarify, yes, I was asking if your doc found the CTCs from doing a blood draw.  When you replied that it was found via tissue samples, I was saying that I think (in U.S.) it is usually just seen on the reports as vascular invasion (or lymphovascular invasion.)  Probably the same thing you are talking about, just using a different terminology.

Yes, I do know there are blood tests that look for CTCs (and I mentioned my doctor did not seem receptive to doing one on me.)  I know they monitor a certain ratio of CTCs per certain amt. of blood.  I do not know if the CTCs contribute to any of the tumor marker antigens currently followed by MOs.

And Barbe, I have heard the same as you have, that "everyone" has some CTCs.  Without you ever having had the blood test, and with knowing that our bodies do try to eradicate these CTCs from the blood, it is possible that your CTCs are in ratio considered to be normal at this point (this far out from your Dx.)  If you ever do get a CTC blood test, I'd be interested to hear about it.

barbe1958

e, I agree about ratios and that's another reason I don't get strung out on the fact. But remember, CTCs aren't the same as the fact that we ALL have rogue cells that can turn against us at any point. CTCs are active cells, not sleepers. I'm sure a high ratio of us have them, whether we have cancer or not, though. That's another reason they don't do the blood work on them. For all we know, "tumour markers" and CTCs are the same thing!! I don't know what the blood test required to test for them is known as. 

Momine

Nope, TMs and CTCs are not the same.

Tomboy

momine, i keep meaning to ask you, but in your avatar, do you know who the painter was? cause really small like that, it kinda looks like, er, um, tits on a platter...

Momine

Kathec, it IS tits on a platter  It is painting by one of my "boy friends" - Zurbaran - whose paintings were love at first sight for me.

The painting depicts Saint Agatha, who had her boobs cut off as a form of torture. 

Agatha-Zurbaran

Tomboy

How great is that! im gonna go look at the link now! was aware of saint agatha, but have never seen a painting. they do look rather bloodless and perky though.. at least in less than one square inch. Thanks.

elimar86861

I'm having a lovely day prepping for a follow-up colonoscopy.  It is just as fun as I remember it being.  I'm hungry too.  The only good thing about today is that my husband was making some soup stock for another meal, so I got to drink homemade clear broth.  The really bad thing is that this is a two part prep,with part two taking place at 2 a.m.  Who devises this torture?

Don't need anyone along tomorrow.  I don't expect there to be one speck of CRC in there, and it's one long, boring morning.  Of course, if you do stow away in a pocket, you might witness my alien abduction (whereas I will be having my propofol nap until they return me.)  The request I have is...when I get back (noonish) I hope to see a lot of food delicacies on this thread.  I'm planning to pop a probiotic when I wake up and then eat a light and nutritious meal at home to be kind to my empty tummy.  (How I have matured from the days when I would just get a take out burrito on the way home!)  But I can have ALL KINDS of virtual food.  Just remember, it's all about the presentation.

Momine

Eli, we are on it

barbe1958

kathe, good call on the tits on a plate!!!! I've always admired the painting in Momine's avatar, but never noticed the plate...

e, I always go for a cheeseburger after a scope like that. Don't know why I do as I never eat them otherwise! Not sure what kind of healthy food you're looking for so I'll see what the others post for you. (Don't know if you're kidding or not...)

luvmygoats

I am picture challenged these days. I cannot resize or make them side-by-side. Even with that I think this is a good representation of yummies. Sweet things and fruit if your feeling saintly Eli. Wishing you only pleasant sleep during the colo. and excellent negativo results. Let us know soonest. In your pocket.