MUST READ!! Test for CIRCULATING CANCER CELLS
Life Extension Magazine has an artilce this month about two ways to test for circulating cancer cells. The article says that circulating breast cancer cells can be strongly Her2 positive, even if the primary cancer cells are Her3 negative. The Cleveland Clinic named these tests their top innovation or 2009. These circulating cancer cells CAN BE PRESENT WITH NON-METATASTIC TUMORS! This test is a way to give a prognosis and direct treatment to the tumor that could kill you. It isn't the primatry tumor that is dangerous. It is the metastic cells we have to worry about. These ctc (circulating tumor cells) are more predictive of outcome than hormone sensitivity.
This test is more reliable and more predictive of response to treatment than radiological studies. In cases where tumors appeared smaller on radiological tests, there acutally was an increase in ctc. In some patients where tumors did not appear different radiologically after treatment, these patients actually had less ctc in their blood.
Measuring ctc can discern whether treatment is effective for individuals early on in the process. Usually, it takes months to determine if treatment is working. Those months can be crucial to survival.
This test is also helpful in determining if someone has had a relapse earlier than they might have detected it. In a study, those who tested positive for ctc had "a 269% increased risk of relapse, and300% greater risk of death," compared to the group that tested negative for ctc. There was a "53 month difference between the time of relapse between the group.
In a study, scientists found that all of the metatastic cancer cells differed from their primary tumor cells. This test can provide a "genetic fingerprint" of the metatastic cancer cells and direct treatment toward the circulating cells.It can determine what enzymes the cancer cells produce to determine if a chemotherapy agent will be effective at all. This more detailed test is only done in Europe. For assistance ini facilitting the advanced circulating tumor cell molecular analysis available at European laboratories, you can contact the International Strategic Cancer Alliance at 610-628-3419.
To find labs that do this ctc assay for number of circulating cells only, call 1-800-208-3444
PLEASE SPREAD THE WORD! THESE BLOOD TESTS ARE LIFESAVING!!!
Comments
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Interesting and probably very important to those who have invasive cancer. Not sure though that this is relevant to those who have DCIS only, since by definition DCIS cancer cells are totally contained within the milk ducts and cannot enter the lymphatic system or the bloodstream. This article seems to be referring to circulating tumor cells that can be found in the blood so that would rule out those who have DCIS.
Or am I missing something?
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This is an interesting read. There was a study a few years back that indicated that cancer cells release metatastic rogue cells into the blood stream or lymph system long before that cancer develops into a tumor. I interpreted that as just part of the reason that the doctor that did my pathology was so urgent about my contacting a surgeon immediately. In a discussion with my oncologist, and at a later date, the cancer center's psychologist, I was under the impression that they are not sure that DCIS is not capable of sending those rogue cells out into the system. The cells in the blood stream can totally bypass the lymph system. Its one of those situations, like the BRAC test, of having a fair idea of what would you do with the information before you proceed. Can you imagine how stressful to have it confirmed that you have those cells circulating, but they are not responsive to any current chemo? In some respect, I would like to know, but wonder if it would be a whole bunch of baggage that I wouldn't know how to deal with. As the research is European, I wonder if you tested positive for the cell circulation, if you would be able to find a doctor on this side of the Atlantic to help you. Certainly would be worth a phone call. I look forward to the day when they finally have a broad spectrum test to determine which cancers have the capability of metastasizing. All of this targeted therapy research is absolutely fascinating.
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It isn't true that it is only offered in Europe. I have had CTC test done several times in the past year at MD Anderson Cancer Center in Houston, TX.
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Faith,
What did the test show? Can you have this test done 2 years after treatment was completed? Iadoubt my onc would be happy about doing this.
Teresa
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Teresa,
I was referred to MD Anderson in July 2009 because while I was still on chemo and radiation for my first BC dx of IDC, my cancer recurred as IBC. They have the only IBC program so my local oncologist sent me there. My MDA oncologist switched me to 2 different chemo drugs. When I returned to TX a month later in August, my CTC was 1. (They measure how many cancer cells they can find in a 7.5 ml sample of whole blood. They told me as long as it was below 5, it was ok.) I had another CTC test done in January 2010. This time is showed 0. I'm sure he will repeat it when I go back this summer.
I think you could have this test done any time whether you are in treatment or not. It is a blood test. Most places probably don't have the specialized equipment to do this test. MDA does because they are strictly a cancer hospital. Other places would probably have to send the sample away to be tested. Not sure if that is possible or not. You can't refrigerate the sample so I'm not sure how it could be transported elsewhere but I have no idea about that.
The reason I know it can't be refrigerated is because the last time I was at MDA, I had the blood drawn the day before at the Rotary House Hotel lab (which is owned by the hospital for cancer patients and their families.) When I got to the hospital the next day, they told me I would have to have the blood drawn again because someone had accidently put it in the frig. I guess that is what they do for some blood samples for some other types of tests but for the the CTC test, it could then no longer be used.
Hope this information is helpful to you.
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Suesweet - this deserves wider circulation, why not post it again the
Forum: Clinical Trials, Research, News, and Study Results
which you can find by scrolling down through the different forums.
Julie E
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To my question in my earlier post, "Or am I missing something?", Jenn, you raise a very interesting point. I've read too about the situation you described where rogue cancer cells may be released into the body, completely bypassing the lymphatic system. Dr. Susan Love (not one of my favorites but still...) estimates that 20% - 30% of women with node-negative invasive cancer have breast cancer cells that have migrated to other parts of their body. Of course 20% - 30% of node negative women don't end up with mets (thankfully!). This is because these cancer cells don't always take hold but it's also because even node-negative women are given chemo and hormone therapy, particularly if they have tumors that are 1cm or larger. As I understand it, the rationale is that the larger the tumor, the greater the number of cancer cells and longer it is that this cancer has been growing. Both of these factors increase the possiblity that some rogue cells may have already moved into the body and that's why chemo, a systemic treatment, is given.
As for DCIS, my understanding is that currently the scientific/medical communities do not believe that DCIS is capable of sending off those rogue cells into the system. Certainly the very high survival rate for those with DCIS would support this; given the prevalence of DCIS, one would expect to see more cases of mets resulting from pure DCIS, if this was happening. Instead, in those rare instances where someone develops mets after an initial diagnosis of pure DCIS, in almost all cases, first or simultaneously there is a recurrence in the form of invasive cancer. Still, I don't think a lot of work has been done on looking into this, particularly as it relates to DCIS, so as with anything, what is the understanding today could easily change tomorrow.
Julie, good suggestion. I agree that this posting this study in the Clinical Trials, Research forum would give this information a wider circulation and might lead to a lot of interesting discussion.
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DCIS can recur, and while most recurrences happen within the first 3 years or so, it's possible to have a recurrence of DCIS after as much as 20 years. In this way, DCIS is just like all other breast cancers. If all the DCIS cancer cells are not removed from the body, and if those that remain are not effectively killed off by radiation and/or hormone therapy, there can be (and quite possibly could be) a recurrence.
When DCIS recurs, based on the current track record, in approx. 50% of situations the recurrence will not be found until the cancer cells have already evolved from DCIS to IDC. When that happens, the diagnosis at time of recurrence is no longer DCIS; once the cancer is invasive, mets becomes a possibility. This is how it can happen that someone initially diagnosed with pure DCIS can end up with mets. It doesn't happen often but it is certainly a possibility, if there is an invasive recurrence. However, to the point of the original article, based on the current understanding of DCIS, those who have pure DCIS cannot develop mets without the development of an invasive recurrence.
On the other hand, for those like me who have DCIS along with a microinvasion of IDC, the situation differs. Although the risk is very small, because we've already had an invasive component within our original cancer, we can develop mets without first having an invasive recurrence. And, again to the original article, for those of us with a microinvasion this also means that we have a risk that some rogue cancer cells, from that tiny invasive component, can move into the bloodstream. This is the primary difference in prognosis between someone diagnosed with pure DCIS and someone diagnosed with DCIS with a microinvasion.
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If they had pure DCIS and then got DCIS in the other breast years later, I'm not convinced it was the old DCIS which spread. I'm thinking their bodies just developed DCIS in the other breast, as if from scratch. Just like the original time in the breast that had been treated.
If your body can make DCIS from scratch once, I don't see why it couldn't do it again later on.
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sweatyspice, I agree. Not only am I not convinced that it was the old DCIS that spread, but I'm virtually certain that it wasn't the old DCIS that spread. If someone has DCIS in one breast, based on current medical knowledge, there is a 0% chance that the DCIS could spread or move to the other breast. The current scientific understanding of DCIS is that DCIS cancer cells cannot enter the bloodstream or the lymphatic system.
On the other hand, for anyone who is diagnosed with BC one time, either DCIS or invasive, the risk to get BC again goes up. My oncologist told me that my risk to get BC again - a new primary, not a recurrence - was about double that of the average woman my age (who had never been diagnosed with BC). I know that other women on this site have been told pretty much the same thing. As you said, if the body can make breast cancer cells from scratch one time, it can do it again. So this means that after a first diagnosis of BC, the risk of getting a new primary BC, in either the same breast or the other breast, can be anywhere from around 15% to 30% (all depending on your age at time of diagnosis and your own personal risk factors). So that would certainly explain a new diagnosis of DCIS in the contralateral breast, years after a first diagnosis.
At one point I did a lot of reading on this topic and I found to my surprise that even with invasive cancer, the starting assumption when a cancer develops in the contralateral breast is that it is a new primary cancer, unrelated to the first cancer. Thinking about it, this makes sense. When invasive cancer cells move into the lymphatic system or the bloodstream, the cancer cells tend to move into the bones or maybe the liver (as examples). It's pretty unusual for cancer cells to go through the lymph nodes or enter the bloodstream and simply travel over to the other breast. That does sometimes happen but not very often. So whether one has DCIS or invasive cancer, if a cancer develops in the other breast, it's assumed to be a new cancer.
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I will also post this message in the "Clinical Trials" section.
The problem with "pure DCIS" diagnosis is that you never know where DCIS may be if it doesn't calcify. You could have this in two spots, one that calcifies and one that does not. Or, you could develop it in the other breast and not know it until it shows calcifications. Unless every bit of DCIS is removed and biopsied, one never knows their status with this condition.
The benefit of this test is that it can monitor your condition over the years to pick up an occult invasive cancer that cannot be felt or found on a mammogram. If IBC occurs after DCIS, it can be found at an early stage by detecting CTCs in the blood. Think of it like a PSA test for occult IBC.
The way this can benefit someone with IBC is that the CTCs can be genetically fingerprinted to target the most effective chemotherapy agent fot that particular cancer.Ths takes treatment from a one-size-fits-all to a custom-developed program for you particular cancer cells. You have to send your blood to Europe for that test.
INSIST that you get this test. Show your doctor the article from Life Extension Magazine. Every article they write is heavily literature sourced. Call those phone numbers and get information you can give to your doctor.
Life Extension, on their website, www.lef.org, has protocols and recommended supplements and vitamins you can take to help stop the cancer from recurring and help limit the chance of metastasis. ( I have no financial interest in this company). This company has been at the forefront of research on alternative ways to beat this diesease. The President of the company is interivewed in Suzanne Somers' book "Knockout." If you become a member, they have consultants you can talk to. They will research a medical topic and send you articles. You can visit this website: http://www.lef.org/protocols/prtcl-022.shtml. Life Extension has been HIGHLY critical of the FDA for not allowing patients access to cancer drugs that are showing benefit but have not yet been FDA approved.
Life Extension recently had an article about the likelihood that cancer surgery can cause cancer to spread. I am going to take the supplements they recommend before, during and after my surgery. Did you know that your immune system is suppressed when you have surgery?Look here:
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Suesweet, the following statement of yours is untrue: "The problem with 'pure DCIS' diagnosis is that you never know where DCIS may be if it doesn't calcify."
Sure, maybe not on mammo, but that's what MRIs are for.
Mammography picked up my area of DCIS #1, due to calcifications. Presurgical MRI picked up area #2, which did not have calcifications. Final pathology from definitive surgery showed no evidence of invasive cancer.
In other words I had pure DCIS, including an area of DCIS without calcifications. Although the non-calc area was occult (invisible) on mammo, it was ALL quite visible on MRI.
FWIW - None of my DCIS was visible on ultrasound.
Your statement is simply not true.
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I was told that any DCIS found after the 3-year NED demarcation point has nothing to do with the original DCIS spreading - it is not a recurrence in that case regardless of which breast it is found in.
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Also don't understand the "if it doesn't calcify" statement since DCIS by nature is going to be calcified. The abnormal cells develop and then die, leaving behind a microcalcification. Period.
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Okay, now I know I'm missing something. If it's true that "the problem with "pure DCIS" diagnosis is that you never know where DCIS may be if it doesn't calcify" then this means that there are women who have DCIS who don't know that they have DCIS. Or maybe they know they have DCIS but it was removed and treated and they don't realize that they have more DCIS somewhere else in their breasts. So these are women who think they are well and/or who think that they have been adequately treated. And the suggestion is that all these women need to be taking this test, not to determine if they have DCIS (because I think we have some agreement that DCIS itself will not send off CTCs) but to determine if they have DCIS that is undetectable yet has already evolved to become invasive and thereby is releasing these CTCs which will be measured by this test. So I guess this means that all women should be taking this test. Maybe one day that will be determined to be beneficial but I don't think the medical community is anywhere near recommending that just yet.
As for the detectability of DCIS, I believe that some women have come through this board who have had DCIS that is undetectable but my personal experience mirrors sweatyspice's experience. I had two areas of calcifications seen on my mammo. These were tested and determined to be DCIS, plus I had a microinvasion of IDC. When I had my MRI, it showed a much larger area of DCIS - this was DCIS that either did not have calcifications (desdemona, I don't know if that's possible or not) or the calcs were just too tiny to be detected, even by a diagnostic mammo. So in my case too the MRI was effective at showing my entire area of DCIS. I've seen many women come through this board who've had a similar experience.
By the way, about the analogy to the PSA test, there are some in the medical community now who feel that the PSA is given too frequently, because it detects early stage prostate cancer that will never develop to be dangerous. This is very similar to the arguments currently being made that too much DCIS is being detected. As someone who was diagnosed with DCIS (and treated for it, thankfully), and having family members who've had prostate cancer and are at high risk of prostate cancer, personally I don't buy that argument and I think these tests are important but it is an interesting (and not very positive) sign about where the medical community is heading when it comes to early detection.
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beesie -
I will try to find the article I read regarding the microcalcs, but it has been over 9 years ago now.
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Desdemona - so by saying "DCIS by nature is going to be calcified. The abnormal cells develop and then die, leaving behind a microcalcification. Period." it seems you're either saying a) my radiologists and pathologists are liars because there really WERE calcifications, or b) my radiologists and pathologists are liars because I really didn't have DCIS in two separate areas.
I don't like the idea that I had a huge surgery for no reason. Since pathologists at all three major NYC cancer centers (Columbia, Sloan Kettering and NYU) examined tissue from the allegedly non-calcified DCIS (and all three agreed on the diagnosis), I'll just get defensive and assume that you're well-intentioned but mistaken.
My body can apparently make DCIS which doesn't calcify.
Perhaps it's more common than we think, and a reason cancer may not be detected (by screening mammo which only picks up the calcs) until it's developed further and become invasive.
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My surgeon said that MRI is not as good finding DCIS as it is finding invasive cancer.You may find it, but you may not as well. Not all DCIS is visible on MRI.
Consider this-you have no family history of breast cancer in your family. You do monthly breast exams. You get a yearly mamogram that is always negative. There are no calcifications. Do you get an MRI just to see if you have an occult cancer you do not know you have? MRI costs about 10 times as much as a mamogram. An HMO would never pay for it if mamograms are negative.So, how would you find DCIS before it became bad enough that it can be felt if there are no calcifications on a mamogram?
so,
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My surgeon said that MRI's are the surest way to pick up the Grade 3 - more dangerous DCIS.. I had had mammo's, digital mammo's, and a ultra sound all within 3 days and none of them showed anything - but there was a small patch of DCIS seen clearly on the MRI and no calcification were ever mentioned includng after the final pathology (mastectomy).. So there are no absolutes unfortunately! And it wasn't an error of the technicians or even the pathologist reading the reports because everyone was so puzzled that they were all looked at by several radiologists as well as breast surgeons and pathologists.. and they were shocked to see DCIS they assumed the "area of concern" they were seeing on the MRI would certainly come back negative for DCIS or BC but the outcome of the biopsy (and ultimately the mastectomy!) was DCIS.
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I had an MRI before my BMX and it was clean-Yep it missed both spots of my high grade DCIS and one spot of lobular hyperplasia. Doctor said there was a chance that my steroetactic biopsy had removed everything. Not true! MRI missed it all.
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My concern is when there's this insistence that we all get this test, what do we do with the results??
I'm 8 years out from one breast cancer, and 2+ years out from a second primary in the contralateral breast. If I were to get this bood test done now, and it came back above 5 (or whatever)--what should be done? Go one chemo? Change my AI? Have a huge anxiety attack?
I think for this very reason is why many docs will be noncommittal, at best, about ordering this "simple blood test."
Anne
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The reason these tests are important is that it gives you a way of monitoring metatastic cancer when you can do something about it. Your second cancer was there long before it was detected on breast studies. What if that second cancer was metastatic before it could be detected on those studies? If you had this blood test and you found that you had circulating tumor cells, you can take action while that action has a chance of actually working to save your life. Yes, if you have circulating cancer cells, get the study they do in Europe where they genetically fingerprint the cancer cells, and take the treatment customized for that genetic fingerprint.
Your other choice is this: Wait until your cancer can be detected on a mammogram, MRI or ultrasound, then let your doctor shot-in-the-dark what chemo he or she "thinks" might kill the cells while it is killing your healthy cells. Then, after several months when that chemo hasn't helped you and your cancer is getting worse, your doctor will try another chemo he or she thinks might work. When that doesn't work, you are told to get your life in order and prepare for the end.
You could send your blood to Europe and have the cancer cell fingerprinted. They will tell you what chemo your cancer cells would neutralize, allowing the cancer to spread and grow. This chemo you do not take. This test will tell you what chemo agents will KILL your cancer cells. You get that chemo and you respond and get better.Then, you continue to get the test that will tell you how many cancer cells are in your blood each year. BECAUSE YOU NOW HAVE THAT MANY YEARS TO HAVE THIS TEST DONE!
This is the type of test cancer sufferers dream of being able to take to monitor their condition and give them an early warning that they have a problem. If you choose not to make use of it, remember, shoulda, woulda, coulda is the worst thing to live with.
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I'd like to know where 'in Europe' this test is available.....certainly not in UK.
BTW I had a breast MRI before surgery, to see if anything else showed up in addition to the known smallish IDC tumor.Nothing.After surgery it was found that the tumor was surrounded by DCIS, which did not show up on the MRI.
Sam
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Unfortunately no method of breast cancer detection is 100% accurate, whether it be for DCIS or for invasive breast cancer. Some of us had our cancer detected by mammos and missed by MRIs and others of us had our cancer detected by MRIs and missed by mammos. So from this standpoint, individual experience is just that - one individual's experience. The research however has shown that MRIs are more effective than mammos at detecting DCIS, and particularly high grade DCIS (which is more likely to more quickly become invasive). This is a relatively new finding; until a few years ago it was thought that MRIs were not effective at detecting DCIS because MRIs generally cannot 'see' calcifications and most DCIS is detected through calcifications. However it now appears that while MRIs do not show benign calcifications, they are very effective at showing DCIS.
- MRI Contrast-Uptake Kinetics is Telling in DCIS (2009) "Contrast-uptake kinetics at MRI had a 99% negative predictive value in excluding the presence of invasion in a prospective study of 134 women with ductal carcinoma in situ on core biopsy." www.oncologystat.com/./MRI_Contrast-Uptake_Kinetics_Is_Telling_in_DCIS_US.html;...
- MRI for the size assessment of pure ductal carcinoma in situ (DCIS): A prospective study of 33 patients (2009) "Conclusion: MRI appears to assess the size of DCIS better than mammography by limiting the number of under- and over-estimations compared to histopathology findings." linkinghub.elsevier.com/retrieve/pii/S0720048X09005221
- MRI best at spotting ductal carcinoma in situ (2007) "Among more than 5,000 women in the study, 167 had a confirmed diagnosis of DCIS. MRI was positive for 153 of 167 of these women (92 percent), while mammography was positive for only 93 of 167 (56 percent). "This difference is statistically significant at a very high level," Kuhl said." http://www.breastcancer.org/symptoms/testing/new_research/20070604.jsp
- Magnetic resonance imaging in patients diagnosed with ductal carcinoma-in-situ: value in the diagnosis of residual disease, occult invasion, and multicentricity (2003) "CONCLUSIONS: MRI of DCIS can serve as a useful adjunct to mammography by providing a more accurate assessment of the extent of residual or multicentric disease. The performance of MRI is not significantly affected by antecedent surgical excision." http://www.ncbi.nlm.nih.gov/pubmed/12734086
suesweet, I appreciate your intent in posting the information about this test. My reaction is to your saying that we should all "INSIST that you get this test" and that we should go to our doctors with the magazine article in hand. Maybe this is the big breakthrough - I hope it is! - but it appears to be too soon to know that yet, and it does not appear to have been established if this test will be of any benefit to those who are diagnosed with DCIS. I do agree that the test is very interesting and may hold tremendous potential, but it's one thing to say that and it's another thing entirely to suggest (in CAPs and BOLD TYPE) that this is the most important thing ever and that we all need to follow-up on it. That's how I'm interpreting what you are saying and to me, that's concerning.
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I finally took the time to look for the source article you refer to, Suesweet. You seem to be pointing to an article in Life Extension Magazine, and since I do not have a subscription and receive it in the mail, I went online and looked at their magazine archive of both current and past issues. I didn't find the article.
Next I googled "circulating tumor cell assay" and found a number of things:
This doesn't seem to be especially new - there's a New England Journal of Medicine article from 2004 (I think) discussing the utility of ctc assays
There seem to be several patents and several companies offering ctc assays, at first glance it looked like they used slightly different techniques and measured slightly different things.
CTC assays are not limited to breast cancer. I found an interesting study done at my alma mater (Stony Brook University) regarding CTC assays in metastatic ovarian cancer patients. I think I saw studies on other cancers as well.
Most importantly, it ALL seems designed for patients with known metastases. I suppose you could make a hypothetical argument that if a DCIS patient had her blood tested every few weeks, she might be able to catch the DCIS at the first sign of invasion...but doesn't that defeat the purpose of treating pure DCIS, before it's had a chance to invade?
I suppose you could also argue that after definitive treatment for DCIS, a woman might have her blood tested at regular intervals so that she might catch an invasive recurrence at the earliest possible moment, if indeed this test would catch a recurrence earlier than radiological screening, or would provide a useful adjunct.
But, has this test been tried and shown to work in anything other than a known metastatic environment? It didn't seem as if it had, but perhaps I just haven't found the new, breakthrough study to which you refer.
If what I've found is all there is, I doubt physicians would be very willing to do this test on women with DCIS and I'd place a very hefty bet that no insurance company would pay for it.
It seems promising and helpful to women with metastatic cancer, but inappropriate at this point for women with DCIS.
If there was a clinical trial for DCIS women to see if this test had any useful function, sure I'd let them take my blood every so often - but rush to my Dr's office and insist on having a blood test? No, that seems like a waste of energy and time.
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I can only add that my DCIS was palpable but did not show up on mammo or ultrasound. I had an MRI and only 1cm showed itself (the actual lump). The other 4+ cm......not showing up on anthing but biopsy. DCIS is a sneaky thing and likes to 'hide'.
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Suesweet: I appreciate the information on this test. I appreciate all information on new tests (or older tech that we forget about) when it comes to monitoring my health. I hope that some of the strong opinions against this post will not prevent others from posting new and interesting information. It is good to get all the information, pros and cons, but ultimately it is an individuals choice as to whether or not to pursuit the treatment/testing.
In regards to the DCIS, my MRI showed two small areas, but my entire breast was full of it. There were calcium deposits in one area only, but my breast surgeon said they were characteristic of the fibroadenoma nearby, not from the DCIS. She told me I was lucky to have found my DCIS when I did. My other breast showed no cancer or calcifications, but path results after the mastectomy proved I had aplastic hyperplasia.(I am not suggesting this is DCIS, but it would have eventually turned into it,per my bs again) I think as others have said that DCIS can be tricky to find. Some women with DCIS may need that reassurance that the DCIS hasn't returned and turned invasive. What would be so bad about getting a blood test that may put their mind at ease? And for those who are more comfortable in their prognosis, then of course it wouldn't be an option for them.
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