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Topic: RGCC TEST

Forum: Alternative Medicine —

This forum is a safe, judgement-free place to discuss Alternative medicine. Alternative medicine refers to treatments that are used INSTEAD of standard, evidence-based treatment. Breastcancer.org does NOT recommend or endorse alternative medicine.

Posted on: Nov 13, 2015 05:44PM

AMY5 wrote:

Hello

I'M thinking to do this test but not sure, it's very expensive and my oncologist informed me today when "If anyone claims that they see cancer stem cells circulating in the body, they are lying". In the series The truth about cancer, there are lots of informations and suggestions, which I like, but does this test really work on high stage cancers. If anyone know anything about this test or any other test as ORGANIC ACID TEST, or?...please let me know. I just can't sit and wait. I had side effects so could not finish my treatments. I have to look for alternative way. Thanks.

Dx 2015, ILC, 6cm+, Stage IIIC, 9/17 nodes, ER+/PR+
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Nov 13, 2015 06:43PM Italychick wrote:

I did the RGCC test, $3,000! It found some circulating tumor cells, but at a very low threshold, under the level supposedly defined for invasive cancer. I don't see anywhere on my report where it mentions stem cells which I thought it was supposed to include. It identified chemo agents that would work on me, but I am a little skeptical about it because it rated Taxotere and Adriamycin as the highest effectiveness (84%). When I asked my MO about it, she said of course it will say that, those are the "big guns." It identified a bunch of alternative things like artemisinin, genistein, resveratrol and polymva and how effective different alternative substances would be on what was in my blood.

But the weird part is my tumor was er and pr negative, and the report said my blood had 30% estrogen and 15% progesterone receptors, and tamoxifen would be 30% effective. So that led me to more confusion. Is what is circulating in my blood something my body seems to be dealing with since my tumor was negative for receptors? And so would I now treat based on my actual growth, which was negative, or what is circulating in my blood, which shows positive receptors? Since I am still doing Herceptin, I haven't proceeded with anything alternative yet. I am in a confused state.

The integrative doctor said he would treat me with substances that seem to indicate a high sensitivity, like genistein, and go from there. When I asked how we would know the substances were effective, I didn't get a definitive answer. I haven't pushed it farther yet because every visit there was hundreds of dollars which only applied to my $25,000 out of network deductible, and I was already putting out $10,000 in deductibles for my chemo and Herceptin treatment.

So I guess what I am saying is what is circulating in the blood may not match what was in your tumor, and the report says that. It says "this test will not detect cancers of the brain or other cancers that have been encapsulated by the body, not releasing circulating tumor or stem cells into the blood stream if any of these cells are dormant. We still recommend the use of biopsy, blood markers and/or various scans with this test when cancer is suspected or known to exist. No test is 100% accurate."

So I guess I'm on the fence as to its value. Most alternative approaches will treat with insulin potentiated vitamin c IV and add substances like artemisinin into the cocktail whether they have this report or not. I did find somewhere that artemisinin was mainly effective with positive receptors and doesn't work for negative receptors. Polymva also seems to be used a lot, along with genistein and resveratrol.

A curious thing is we have a dog with skin hemangiosarcomas. Sometimes they resolve on their own and we asked the vet why. He said somehow at that point his immune system was stimulated enough to take the cancer out, but he doesn't know why or how. So based on that, my thought is boost the immune system as much as possible and get the body to fight.

Hopefully I helped. If I can answer any other questions, happy to!

Lumpectomy 1/27/15, TCH chemo, Finished chemo 5/27/15, rest of treatments 2/17/16 Dx IDC
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Nov 13, 2015 07:11PM - edited Nov 13, 2015 07:14PM by marijen

Amys - try to go here. I gave this article to my BS after he said CTC tests weren't accurate and changed his mind, will give me the test next week. Not sure if it's the same but. You have to research the articles at ncbi.

Serial monitoring of circulating tumor DNA in patients with primary breast cancer for detection of occult metastatic disease

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC455134...
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Nov 13, 2015 09:30PM AMY5 wrote:

Hi Italychick thank you very much for reply and all the details you are giving me. Yes, this test sound to good to be complete truth, it seems. I have to pay all alternative treatments out of my packet and it's $5000 Canadian , so maybe it's not worth it after all. Plus I'm stage 3 I don't know how that will work, I was just hoping that they can tell me what exactly will work for me, since naturopaths just guessing as everyone else. Maybe there are some chipper tests, like hair analysis , since I have bad reactions from conventional treatments and alternatives as well. Thank you very much.
Dx 2015, ILC, 6cm+, Stage IIIC, 9/17 nodes, ER+/PR+
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Nov 13, 2015 09:42PM - edited Nov 14, 2015 12:20AM by AMY5

Hi Marijen, I'm not sure if RGCC test it's the same one that you're going to do, but please let me know what do you think about that one once you got the results. Thank you.


Dx 2015, ILC, 6cm+, Stage IIIC, 9/17 nodes, ER+/PR+
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Nov 15, 2015 03:34PM solfeo wrote:

I did the RGCC test ($2200 at the July 2015 exchange rate). It showed high proliferation rate and high risk of angiogenesis and metastasis, which had me thinking my cancer was highly aggressive and I was headed for chemo for sure. Then after my BMX my pathology showed Grade 1, and my Oncotype DX came back at 13, which is low risk for recurrence, and MO recommended against chemo. Oncotype has clinical trials to back it up. I do believe the RGCC test is based on science but it is still somewhat theoretical in application..

I think it's a useful tool, but unfortunately it just gave me something else to worry about in light of the decision to forgo chemo. Doctors find it interesting but don't really know how to use it (said to me separately by both BS and MO in almost those exact words). It was worth the money to me at the time because I didn't want any ineffective chemo, and because I use a lot of supplements it was helpful to see which ones were most effective on my CTCs in the lab. Not foolproof for sure, but some guidance where there was none. Not sure I would do it again, though, knowing what I know now.

Oncotype 13 Dx 7/31/2015, IDC, Right, 3cm, Stage IIA, Grade 1, 0/2 nodes, ER+/PR+, HER2- (FISH) Surgery 10/7/2015 Lymph node removal: Right, Sentinel; Mastectomy: Left, Right Hormonal Therapy 11/17/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Nov 15, 2015 04:40PM Italychick wrote:

solfeo mine also showed high risk for metastasis, and the doctor said everybody's tests show that, so I wouldn't stress about that part. Some of the alternative stuff that showed up (Okinawa factors) the doctor said he doesn't even know about.

So here I sit, waiting for Herceptin to end in February, wondering what to do. Did you take any action based on your recommended alternative treatments? I'm still in a quandry about what to do. Did the hormone receptors in your blood match what the tumor statistics were? Mine didn't, which confused me even further

Lumpectomy 1/27/15, TCH chemo, Finished chemo 5/27/15, rest of treatments 2/17/16 Dx IDC
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Nov 15, 2015 05:39PM ChiSandy wrote:

Regardless of the utility of the RGCC and any CTC testing, I would skip the hair analysis--it’s worthless, even though noninvasive. Check quackwatch.com.

Diagnosed at 64 on routine annual mammo, no lump. OncotypeDX 16. I cried because I had no shoes...but then again, I won’t get blisters.... Dx 9/9/2015, IDC, Right, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 9/23/2015 Lumpectomy: Right Radiation Therapy 11/2/2015 3DCRT: Breast Hormonal Therapy 12/31/2015 Femara (letrozole)
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Nov 15, 2015 05:54PM Lily55 wrote:

Yes I would avoid hair analysis too......

I had RGCC test done in Greece (sent by courier) and it was only 600 euros so don´t know why its so expensive from USA?  THE consult was ariund 450 euros so for 1000 euros it was done.......

It can detect cells that have been shown to lead to mets in certain áreas of the body.  I understand it is the kind of circulating tumour cells and whether they are stem cells that it can really measure but I am no expert.....Dr Nicola Hembry in the UK uses these and understands them, don´t know if there is a facility offered for online or telephone consults with her but might be worth emailing to ask?

Dx 4/2012, ILC, 5cm, Stage IIIA, Grade 2, 7/14 nodes, ER+/PR+, HER2- Surgery 5/2/2012 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Radiation Therapy 8/14/2012 Breast, Lymph nodes Hormonal Therapy 7/18/2013 Aromasin (exemestane) Radiation Therapy 3/7/2019 External: Bone Chemotherapy Taxol (paclitaxel)
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Nov 15, 2015 06:27PM marijen wrote:

Thanks for all the input. Yes the cost of CTC is about $1000 without insurance. But inurance only pays less than $400 from what I found so far. I have a good artcle or two somewhere, I'll see if I can find them. Bb

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Nov 15, 2015 10:31PM AMY5 wrote:

Hi, thank you all for replay, tomorrow I'm going to see naturopath and talk about this test, $4.750 no insurance in Canada or very small amount, It's lots of money, so is it wort it? This is from naturopath's office: (did you have the same)

Oncotrace: gives a circulating tumour cell count as well as cancer stem cell markers, currently $1,375 CDN

Onconomics: tests isolated malignant cells in culture for inhibition with standard chemotherapy drugs, currently $3,250 CDN

Onconomics Extracts: test isolated malignant cells in culture for cytotoxicity, anti-cancer immune system response, and inhibition of growth factors to natural agents, currently $2,800 CDN

Onconomics Plus: includes Oncotrace, Onconomics, and Onconomics Extracts, currently $4,750 CDN

To begin, please call our office to book an initial consultation ($166.50) and no preparation is required for the blood draw.


Dx 2015, ILC, 6cm+, Stage IIIC, 9/17 nodes, ER+/PR+
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Nov 15, 2015 11:01PM Italychick wrote:

I don't feel I know enough to advise either way, but here are my questions and comments after having the test done.

How confident is the naturopath that the results can be interpreted?

What if the circulating tumor cells are different than the biology of your tumor? How does that affect treatment? My circulating tumor cells did not match the pathology of my actual tumor, they were different. Tumor had no er or pr receptors, but circulating tumor cells showed 30% estrogen, 15% progesterone. Nothing was mentioned about HER receptors.

I got no cancer stem cell report. So verify that part. I was particularly interested in that since the stem cells are the most problematic. I only got a CTC count. Cancer stem cells were not mentioned at all, so I don't know if that means none were found, or the information wasn't included.

Another thing to keep in mind is that the body biology can change, so the test you get done will be valuable in the short term, meaning if you plan to do alternative treatments immediately.

How is success measured? I suspect it will require paying for the test a second time, so it won't just be the up front cost, it will probably be twice that, or at least a second test to measure whether circulating tumor cell count has dropped. What I saw online said they want to re-measure your tumor cells every 3-4 months. So I think that would be the oncotrace cost

I have delayed dealing with the report in depth with my integrative physician because I won't embark on any alternative treatments until Herceptin is finished in February.

Sorry - there are no easy answers.

Lumpectomy 1/27/15, TCH chemo, Finished chemo 5/27/15, rest of treatments 2/17/16 Dx IDC
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Nov 15, 2015 11:22PM ChiSandy wrote:

I checked the Quackwatch and ScienceBasedMedicine sites; the former is silent about CTC testing, but the latter is skeptical about their utility, as well as about “liquid biopsies” for the reasons Italychick cites. There is no definitive way to interpret the results and not yet any statistical correlation between results and their impact on course of disease or treatment, nor even between cells in blood and cells harvested from the tumor (much less double-blind studies). OTOH, it recognizes the validity and utility of OncotypeDX--perhaps in the near future there will be an analogous genomic assay for estrogen-negative or HER2-positive tumors that can predict their susceptibility to specific cytotoxic and targeted biological therapies beyond what we currently know. But blood and tumor samples are probably as alike as apples and chainsaws.

Diagnosed at 64 on routine annual mammo, no lump. OncotypeDX 16. I cried because I had no shoes...but then again, I won’t get blisters.... Dx 9/9/2015, IDC, Right, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 9/23/2015 Lumpectomy: Right Radiation Therapy 11/2/2015 3DCRT: Breast Hormonal Therapy 12/31/2015 Femara (letrozole)
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Nov 15, 2015 11:28PM - edited Aug 27, 2018 09:50PM by AMY5

This Post was deleted by AMY5.
Dx 2015, ILC, 6cm+, Stage IIIC, 9/17 nodes, ER+/PR+
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Nov 16, 2015 03:55PM solfeo wrote:

RGCC changed some of the names of the tests since I had it. I think I had the equivalent of the Onconomics and the Onconomics Extracts, for $2200 US with combined discount. I'll post a copy of it later so you can see what you get.

My test did show that the cells were ER+/PR+ as did my pathology, and it does definitely list the HER2 gene expression. The only thing that was significantly different was the level of aggressiveness, but I think that's a matter of how the genetic data is interpreted, and not that the test results themselves are wrong. They are testing for known oncogenes - many more than Oncotype tests, and instead of just giving you a score like Oncotype, they actually list the genes individually and show you which ones are over- or under-expressing, and by how much. You can do research on what each one does, and what it means. I did, and I learned a lot. That's where it gets confusing because there is data about these genes individually, and probably in some combinations, but I don't think they know how to make accurate predictions from the information when it's all put together. Yet. I don't think there is any controversy about the genetic testing component. It's how to isolate the CTCs that causes some disagreement. I did ask my oncologist if all women with breast cancer have CTCs. She said probably but it hasn't been proven. It was clear that she believes the answer is yes but group think hasn't yet changed enough for her to be able to say so.

Below is a link to some explanation of the different methods being used to isolate CTCs compared to RGCC's procedure, and it also includes some information about why your CTCs can be different from your main tumor pathology. It makes perfect sense to me. Basically, not all cancer cells are the same, and not all of them have the ability to break free from the original tumor, The ones that do are going to have certain characteristics. Most of them don't survive in the bloodstream very long, which is why you can have them and still not recur. Unfortunately not a lot is known on an individual level about why one woman's CTCs might land and grow, when someone else's won't. That's why we have to take care of ourselves in every way possible, and support our immune systems above all else.

A Brief Comparison Of The Various Techniques And Methods For Isolation Of Circulating Tumor Cells (CTC's)

Like Lily55 said, the test is accepted and used more in Europe, like many other things related to cancer that are available there that are not available to us in the US. Americans like to think of ourselves as number one at everything, but when it comes to innovation in cancer treatment, that's often not true. Europe is way ahead of us in many ways. One reason is because of close-mindedness toward new and different ideas that were not our own. Eventually some of these protocols will make their way over here, but in the meantime a lot of our people are missing out because their doctors won't even look into something that is different from what they think they already know.

Italychick, I'll answer your questions about my supplements results in a separate post a little later.

Oncotype 13 Dx 7/31/2015, IDC, Right, 3cm, Stage IIA, Grade 1, 0/2 nodes, ER+/PR+, HER2- (FISH) Surgery 10/7/2015 Lymph node removal: Right, Sentinel; Mastectomy: Left, Right Hormonal Therapy 11/17/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Nov 16, 2015 04:17PM Italychick wrote:

Solfeo, also, did you pay for the SOT therapy? That is probably my next step, and I'm just wondering if you decided to do that portion also. It seems to be potentially one of the most important outcomes of the RGCC test, as far as I can tell, since it creates a "stealth serum" that sneakily attacks the cancer cells, or at least that is my understanding of it.

So February for me will probably be paying for the SOT development, and then pondering the myriad of natural substances that may be effective and working with the doctor on deciding which ones to use. And trying to figure out why the report says Tamoxifen would be 30% effective for me with a cancer with no ER or PR receptors.

On a good day, I tell myself that my CTC count was super low, under the threshold established for cancer, and that since the receptors don't match my tumor, the tumor cells hadn't escaped and whatever is in my blood my body seems to be dealing with. On a bad day, I tell myself there is a second cancer brewing out there that the RGCC identified very early.

I've started going through all the potential agents I can use that are listed in my report to figure out what they all are, which isn't easy.

Lumpectomy 1/27/15, TCH chemo, Finished chemo 5/27/15, rest of treatments 2/17/16 Dx IDC
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Nov 16, 2015 04:43PM Lily55 wrote:

I am no expert but from our message Exchange I think the Oncotrace test is the only one worth doing, as you are not doing chemo so testing for sensitivity to chemo regimes will not help you

Good luck tomo xx

Dx 4/2012, ILC, 5cm, Stage IIIA, Grade 2, 7/14 nodes, ER+/PR+, HER2- Surgery 5/2/2012 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Radiation Therapy 8/14/2012 Breast, Lymph nodes Hormonal Therapy 7/18/2013 Aromasin (exemestane) Radiation Therapy 3/7/2019 External: Bone Chemotherapy Taxol (paclitaxel)
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Nov 17, 2015 05:58PM - edited Dec 8, 2015 12:33AM by solfeo

OK, I have uploaded my RGCC reports with all of my identifying info removed. As I said before, RGCC has changed the name of the tests in the last few months. They are also updating their website, and the price lists that were available to me seem to be gone. A few months ago I paid RGCC directly online, and my ND only charged me a small amount for processing and shipping the blood sample, and then later the consultation to go over the results. Now the procedure has apparently been changed and you have to pay through your doctor. At the time my ND mentioned that RGCC was in the process of making that change. I don't know why, but this probably now gives your practitioner the ability to apply a markup to the price, so it might be worth it to check around and see if you can get a better deal.

What I had was called Oncostat Plus, which was identical to what they are now calling Onconomics Plus. It includes Onconomics, Onconomics Extracts and the assessment in combination. I received a substantial discount for getting them all together. Sorry I can't remember how much I saved, because I can't find the original price list, but seems like it was over $1000. Again, the total I paid was $2200 US. I put everything into one document to make it easier to link:

Chemoagents and Gene Expression (Onconomics - pages 1-11)

Thalidomide and Natural Substances (Onconomics Extracts - pages 12-15)

Assessment (pages 16-17)

Solfeo's RGCC test

More info on how the test is done (Let me know if this disappears since they seem to be in the process of consolidating all of the regional websites into the main site. I saved a copy.)


Oncotype 13 Dx 7/31/2015, IDC, Right, 3cm, Stage IIA, Grade 1, 0/2 nodes, ER+/PR+, HER2- (FISH) Surgery 10/7/2015 Lymph node removal: Right, Sentinel; Mastectomy: Left, Right Hormonal Therapy 11/17/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jul 30, 2018 09:02PM Sharaezed wrote:

I had breast cancer two years ago - invasive ductal carcinoma, Stage 1A, 1.5cm, triple positive, no lymph node involvement. I have been seeing a physician that is monitoring my circulating tumor cells and I am considering SOT. Does anyone know of a physician in Chicago or Minnesota that is offering this treatment. I know that Dr. Conneally, Cancer Center for Healing is offering it but I would prefer someone closer to Minnesota. Thank you for your recommenda

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Sep 20, 2018 05:24PM Nonabstruse wrote:

For those of you interested in the RGCC testing, I'd like to offer my opinions regarding their validity and usefulness.

Before attending medical school I was a academic research scientist in areas of developmental biology, hematology, immunology, and tumor biology. I gained a lot of knowledge and practical experience in the technical perspectives of what these test involve in several very high tech laboratories, and have co-authored several peer-reviewed publications on these topics.

I have been practicing medicine for 27yr and have specialized in integrative medicine for the past 15 years. I have treated many cancer patients, but I do not recommend or order RGCC testing for patients. I have reviewed the results of dozens of RGCC tests that patients bring to their consultations with me since about 2005.

What I'm going to talk about will probably disappoint and/or anger some folks.

I believe that the specimens are just disposed of (hopefully appropriately as biological waste) and a pre-written report is sent to the patient and doctor that ordered it. There are distinct similarities amongst individual reports, glaring errors, and impossible technical procedures that are disturbing indicators of fraud.

How could I be so slanderous ?! Because I can defend my statements with experience and knowledge in the field of cell biology and molecular biology.

Let's start with an easy one. How the blood specimen is obtained that will be couriered to Florina, Greece a bucolic Macedonian municipality.

All the reports I've looked at from 2005-2018 state: "The sample that was sent to us for analysis was a sample of __ml of blood that contained EDTA-Ca as an anti-coagulant, and packed with an ice pack." (my emphasis).

Any of the studies that are allegedly done on this sample would certainly require that the blood be anti-coagulated, otherwise the sample would be a gelatinous maroon blob. Hardly starting material for separating the tiny fraction of circulating tumor cells (CTC) from the sample.

The anti-coagulants commonly used in syringes or vacuum collection tubes to collect blood include:

1) Heparin- a natural anticoagulant, primarily prepared from the intestinal lining of hogs. (green top tube)

2) Monovalent salts of Ethylene Diamino Tetraacetic Acid (EDTA) - synthetic compounds that will bind the calcium in the blood and thereby prevent it from playing its critical role in the formation of the clot. These are almost exclusively potassium (K2EDTA - lavender top), or sodium (Na2EDTA - royal blue or tan top).

3) Citric acid/Citrate- Yes that's vitamin C. It will also bind the calcium in the blood sample and prevent clotting. (light blue or yellow top). Citrates are also used in blood donation bags, dialysis machines, and equipment that concentrates white blood cells and bone marrow stem cells from a patients blood and returns the plasma and red blood cells to the patient (leucopheresis)

1st FACT - CALCIUM EDTA (EDTA-Ca) WILL NOT ANTI-COAGULATE BLOOD !!!

So why is that important? It's probably just a simple error, a typo. Just overlooked for a decade??! And nobody (including me) called them on it?! If a laboratory is so sophisticated that it can perform so many highly technical procedures, but can't even properly document the simple technique used for obtaining anti-coagulated blood, what else is erroneous, or worse, just fabricated?

I realize that many people (including doctors using these tests) have put their faith in the hope of having a personalized treatment defined by these tests. I believe that scientifically and ethically challenging the principles and practices that are supposedly used to generate these results may be enlightening for all.

My next post will be on technical aspects of maintaining cell integrity and viability ex vivo - Cells don't travel well, I'll explain why.

Hope I don't get treated like Dr. Emma Shtivelman




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Nov 2, 2018 12:00PM Luhoo64 wrote:

This is very interesting. If this only the tip of the iceberg what were your other concerns?

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Jan 24, 2019 09:31PM Lillygal2018 wrote:

Dr Nonabstruse, please continue what is wrong with the RGCC test. I was considering taking my mom to get the test, but need to know the whole story.

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Jan 25, 2019 01:37PM Deshay wrote:

hey I live in Long Beach California, how can I get the oncostat test done around me

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Feb 7, 2020 03:58PM SandraC wrote:

How are you? Have you done RGCC test?

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Feb 8, 2020 06:10PM jessie123 wrote:

I don't know anything about the RGCC test, but I know a little about the CTC test. I saw a doctor talk at one of the online BC symposiums that the CTC test is prognostic for early stage BC, but even if you have circulation tumor cells there is nothing that can be done about it. Then I heard it's sometimes used for the metastatic patients to monitor how their medication is doing. The place that developed the CTC test that I'm going to do is CellSearch. I think they contract with around 4 labs in the county. My hospital will do the blood draw and it has a small window of time to arrive at the lab. The CTC test will cost me $600.00. That's the hospital and lab charge. The test itself was developed by CellSearch. The only reason I'm doing this is for it's prognostic value.

Dx 11/2018, LCIS/ILC, Left, 2cm, Stage IB, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 2/21/2019 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/14/2019 Whole-breast: Breast
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Feb 19, 2020 11:15AM - edited Feb 19, 2020 11:15AM by georgealan

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Feb 19, 2020 11:15AM - edited Feb 19, 2020 11:16AM by georgealan

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Feb 19, 2020 11:17AM georgealan wrote:

@Solfeo can you please attach again your results? Because the link is suspended.

Can someone else share their results in the natural substances in ER+, PR+ and HER2- type


Thanks

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Jul 7, 2020 11:08PM Hope1982 wrote:

Hello everyone,

I was wondering to do RGCC test. It’s quite expensive in Canada, but I would like to hear any feedback about the benefits of this test. Does it make sense to do it? I would appreciate to hear any feedback or experience with this test. I am stage1, Er positive, Her positive.

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