Anyone with low oncotype score have a recurrence?
Comments
-
Hi,
I am new to this forum. After reading a lot of this thread I am wondering what test shows if you have CTCs? Someone mentioned having no CTCs so wondering how you can tell.
-
Sassy
This link might help you: Testing for Circulating Tumor Cells (CTC)CTC technology, like the system made by cellsearchctc.com is interesting. They are part of Janssen Diagnostics, which is a subsidiary of the global firm, Johnson & Johnson.
There is another diagnostic test I just read about called the TMEM test, which claims to be more relevant than Oncotype & MammaPrint. Oncotype looks at risk for MBC by looking for changes in gene expression or in levels of proteins associated with tumor cell growth. But those changes don't reflect the mechanism by which individual tumor cells invade blood vessels. By contrast, the TMEM test reveals biological processes deep within the tissues. Essentially, metastasis occurs when a specific trio of cells is present together in the same microanatomic site. This site where these three cells touch is where tumor cells can enter blood vessels. That site is called a tumor microenvironment of metastasis, or "TMEM".
There is a company in NYC that is developing a commercial TMEM test, but after some due diligence, it appears it's not available until late 2015 and honestly the company history is very sketchy. It's publicly traded on the pink sheets (OTC) for under a dollar [it's a penny stock]. Despite that, some of the researchers behind the TMEM test are at Albert Einstein Cancer center in New York City, so if you're a patient there, you might get access to the test for free. Certainly, no insurance company will pay for it, but since it's deemed "research" it would likely be free if you're lucky enough to be treated there.
The researchers behind the test claim to understand the mechanics and function-based processes of tumor cell migration and entry into the bloodstream. They ran a couple studies. The latest, released in June 2014, revealed results that predicted metastasis better than those whose Oncotype score was borderline intermediate, an area where oncologists struggle with the chemo decision. Only time will tell if this TMEM test becomes clinically useful.
-
Yes a coworker of mine had one tumor ILC close to chest wall she had a lumpectomy followed by internal radiation her OncoDx number was a 4, I was so envious. Six months later she developed cancer in her bones hip/spine. I asked her if it was a re-occurance and she really didn't know it could have been there the whole time. But it was her BC.She is doing radiation and doing fine she's still working.
-
I am not sure but it may be that what you are seeing people discuss is not CTC testing, since this is not widely available, but rather tumor marker tests such as these linked below. I have both CA27/29 and CEA done regularly, - some oncs do these tests, others do not.
http://www.breastcancer.org/symptoms/testing/types/blood_marker
-
There was an article posted on this site, not the discussion boards, about early stage breast cancer and the reality of recurrence. According to the article, 30% of women with stage 1 breast cancer will metastasize to stage 4. Once they metastasize, the average life span is 3 years. ....
To be fair, there were no other stats included: grade, bc type, oncotype scores, etc.
I asked my oncologist about this article and the stats during my 6-month check up just last week. He confirmed the validity of the article and the statistics. He is always a straight shooter with me, even if it isn't something I want to hear.
Just sayin'. The important thing is for us to be self aware of our bodies and be pro-active about our health.
-
That is one study and your doctor's opinion. It is a study and he has a right to his opinion. Of course grade, type and Oncotype scores are extremely relevant. Grade 3 is more aggressive than Grade 1, IDC may be less of a concern than ILC and a low vs high Oncotype score, while certainly not a guarantee, provides more information about your particular cancer only. It's not a one size, fits all test.
I know there are hundreds of tests done with all sorts of facts and stats but the vast majority of them are usually done evaluating a comparatively small number of people.
I don't put a lot of credence in tests/claims like this and frankly don't believe it based on such limited data. Btw I am not Stage 1.
Diane
-
First, this information was PUBLISHED in medical journals and was listed on the home page of BC.org within the last 6 months. It was in the form of a letter to researchers urging them to find a cure. The author has stage 4 breast cancer and, as noted in the article, highly educated. I believe she is in the medical field, possibly a doctor, but I don't remember. I do remember it stating that the author was well respected in the medical community and for her knowledge about breast cancer.
Second, I swore I would ask my oncologist about the validity of the information in the article during my next 6-month check up, which was last week. He confirmed the data to be true. My oncologist is a graduate of Cornell Medical School, a highly rated school; he is involved in cancer research, he is published in medical journals, is very well respected in his field, and has received awards for his work, one of which came from the Susan B Komen Foundation for his work in Breast Cancer. He is not one to deal in opinions.
I understand that bc type, grade, oncotype, etc. all play a role, which is why I indicated I do not know all the stats that went into the article.
-
Did the article actually say that 30% of stage 1 breast cancers go on to become stage 4? Or did it say 30% of 'early breast cancer'? Because my understanding is that the latter refers to stage 1, 2, and 3a and that 30% makes more sense then... I'm not saying that it isn't true otherwise, but it sounds a bit higher than what I've seen in other stats... Of course, everyone's risk is individual and based on other factors and - at the end of the day - it's a crap shoot regardless of stage! I just know that I would have lost my mind if I had read that statistic in the early days of my diagnosis, so hoping to clarify for others who might see this.
-
I believe Nan54 is correct from what I have read. It is all early BC and it includes all stages through 3A and the 30% going on to mets is correct. This is why they have to stop pinkwashing this world and get down to finding a cure or a preventative vaccine because this disease kills over 40K men and women per year, a stat that has not changed much in decades. 3 out of ten women who are diagnosed with early stage BC will go on to mets and to likely die from this evil disease. We need a CURE! Yesterday would be nice.
-
I really only scanned the comments, but I find it interesting that (I think) no one has really come forward and said yes to the Original Poster's question. I think that seems to be a sort of an answer in its negative.
-
whatnow,
I think that is conclusion would be a logical fallacy. Low risk of recurrence according to onco-type does not mean no risk, as even the Oncotype assessment won't put someone at "0". Statistically there are still women who will have recurrence so we know they are out there.
Those who have had it return may:
1. Not post in the Stage 1 forums because they have moved on to forums more suitable for their later diagnosis.
2. May not post here at all, either as they never did, they no longer choose to, or as they no longer are able to.
-
vbishop, do you have a link to this article? Or do you remember the key words in the title? I'm with Nan, these stats are freaking me out and I want to know more. Thanks.
-
Ladies -
I wish I could find the original document that I read less than six months ago on the home page. If I am not mistaken, there was a link to it in one of the threads, which is how I stumbled it. And the data freaked me out too. I was only six months into my diagnosis, so you can imagine how thrilled I was to see it. And which is why I swore I would ask my oncologist the next time I saw him, which was last week.
I did ask him specifically if it were true that 30% of stage 1 bc metastasize. And he said yes. Possibly he was generalizing, but he isn't one to scare me unnecessarily; he does deal in fact, is always a straight shooter, and won't sugar coat anything. My oncotype score is 9, and I have a 7% chance for recurrence, so I think my odds are better than most.
I apologize. I had no intention of creating a mass panic. The point I was trying to make, but failed miserably, is that we can't think we're home free just because we're stage 1. We need to be aware of our bodies, exercise, eat healthy, and make sure we have all the preventative screenings done regularly (pap smear, colonoscopy, mammogram if you still get them (with bi-lateral, my mammo days are over), etc.
If I can find the original link, I will post here for all to read.
-
Well, heck. I have stage 1, but the more aggressive grade of 3. Sentinental node didn't show anything and my oncotype score was low, of course assuming I would take an anti-hormone therapy med, which I'm not. Made me very ill and I had to make a choice.
Worrisome? Yes. It always will be. But, choices have to be made and sometimes you have to follow your gut. We can all die from this crap. That's the bottom line. How and what therapy you choose may help, what latest piece of research you choose to believe may help but it's all what works for you. Know your stuff, even if it's conflicting and don't always depend on doctors cause they don't always know which piece of data to believe either! Remember, this is the same group that has yet to decide if women needs a mammogram once a year or every 2 years. Again, personal choice.
I'm going to keep reading and try to trust my decisions with help from everyone's advice. I don't know what else I could possibly do. I hope I don't get cancer somewhere else. None of us do. I'm on here because I like to hear other people's experiences and opinions. Some is scary and some is helpful. Either way, keeps me thinking!
-
Divecat: Good thinking; I agree. Thanks.I did a quick search; here is a report with the 30% figure (this one says 20-30% - and is dependent upon all the factors with which we're already familiar - and says "early stage" - ). I didn't really read it, just putting it here in case anyone wants it (look under "Introduction"). I was told by my oncologist that I have only a 5% chance of recurrence.
-
I'd posted a link to a report that stated the 30% figure that was mentioned. But I opted to delete it because it was actually 20-30%, and it said "early stage," not stage I alone, and it was dependent upon all the factors we already know as causing a greater recurrence or mets rate, so it didn't seem to say anything new. I just wanted to explain why I had a deleted post.
Divecat: Good logic; I agree.
-
Why not think of it as a 70% chance that it will never return. Stats are hard to parce, but a 70% chance to win the lottery would look pretty good.
Agonizing over stats doesn't change anything, except inject additional stress into already stressful lives.
One thing the stats could be used to support - No one is "cured" until everyone is cured. We need a 0% chance of mets for everyone!
-
Hi everybody,
I don't usually see stage 1 posts, but stumbled upon this one. While I can't quite remember my oncotype score, it was pretty low. In fact, my breast surgeon at Stanford wanted me to be part of a clinical study where half got chemo and half didn't. My oncologist was against me participating, as he said he thought I should have chemo and the usual treatment. I followed his advice and did the protocol, way back in 2008.
Bottom line is yes, I had a low oncotype score and I am now stage 1V. The odds were against it, but I guess I was just on the wrong side of the bell curve!
Lisa
-
You (the general 'you') can keep an eye out for the article that you thought had this information you remember, the fact that supposedly IS, but it seems likely the reason no one can manage to "find it again" or link to it is because it just doesn't exist. I believe it was mixed up information, that maybe 20-30% node negative goes on to metastasize, or yes 30% of "early stage" including stages 1 - 3a. "Early stage" in medical world is not restricted to stage 1.
If one wants to tell of one's personal experience, beliefs, etc., fine. But once someone starts supposedly quoting information without a link or data to back it up--well then, I just dismiss it, fairly or not. Life is too short.
When it's information that is alarming and by all indications not true, I also want to post because people freak out, understandably.
The fact is, any one who has invasive cancer no matter what the stage can metastasize. Try to adjust to the new normal and just count your blessings for every day you continue to be okay. At least that's how I manage most of the time.
-
Well, I did look on doctor Google out of curiosity and every reference to 20 -30% I found included stage 1 thru 111.
There was a recent ask an expert answer from Hopkinsbreastcenter.org to the question of what percent of stage 1 estrogen positive metastasize and the answer given was "statistically, about 10%". I can't spend every day worrying about something that I pray will never happen.
-
Lisa, what a life changer for you. To do all the things you did and all the stinking mets still happened. I'm in that mindset...nothing is a guarantee. Keep me posted as to what board you stay on as I'd like to see how you manage your care...fight on girl!
-
Hi Mema,
Sorry for the late reply. I don't really log in as much as I should. Yes, a Mets diagnosis is a game changer. I'm 56 years old and have two sons in college. My heart breaks for mothers with young children. Can't even imagine the pain of maybe not being there for all of those firsts in life.
I sometimes post on the stage four site. However, I'm sure the or poster would get a good response if she would post the question under the " not stage four but have questions.
Hope you are doing well!!
Lisa
-
Bump, please.
-
For the question of low oncotype and recurrence...yes. Aug 2013: BMX for 1.9 cm, node negative tumor. 4 rounds of TC, despite oncotype of 16 (low) due to age...43.Tamoxifen followed. Feb 2015 recurred with multifocal tumors., this time with a high oncotype. Super low percentage of this happening, but someone has to be the "one". In this case, it was me.
-
I was 40 when dx with LCIS...exactly one year later when I was 41, I was dx'd with ILC...go figure..I wanted a pbmx at 40 b/c of fam history but I was told it was to aggressive....do thess doc' realllyyy know wht they are doing? The reason I ask this is b'/c my MO ordered an MRI of my right shoulder and said it was "ok"...but yet ortho surgeon says completely different. It's so hard to know who and what to trust. These people have our lives in their hands and they cant get subsequent dx's correct ? Kind of scary if you ask me. Any comforting thought ????
-
the best post I’ve ever read, all about importance of vontext
-
Hey :
I think people do not really understand statistics. An average is the number who died divided by the all the cases. However, there is variation around that average.So for example, some die in 1 year, some in 10 years, some in 2.5 years etc. All these are added together and divided by 3 (because there are 3 numbers here). But notice the variation in the numbers. Its not reflected in the average. The most important number to us is this variation. And this can be expressed in different ways too and therefore is not relevant outside the study it was calculated in. And no-one looks at this variation if they are not trained and have applied statistics in what they do.
Then there is there is the number of cases or "sample size". The more relevant and bigger that sample size, the closer to the truth for the whole population is the average. But if the sample size is smaller with larger differences in the numbers, the average is really meaningless. That is why large studies with thousands of women over a longer time span is more meaningful. Then again, its not perfect because of differences in treatment, where women live, their lifestyles, if they have bad genetics etc. Plus, biology is variable. People do not respond exactly the same to the same treatment. Its a fact and impossible to predict or control. That is why there are ranges of normal values in lab tests. And even then, not everyone falls within that "normal" range, yet they are healthy and normal for them.
So in the end, statistics are only relevant to the study in which they were collected with caveats. They are guidelines only, not "truth". BC survivors should follow treatment guidelines of their doctors and do everything they can to keep healthy otherwise. It does not mean you will only live "3 years" if that is the average. Again, it means you need to follow the guideline for treatment based on probabilities, not "truth" or "certainty".
Any doctor that tells you, after diagnosis of mets, that you have x number of years, is wrong. There is no way they know. And the MO who said the study of 3 years average life span after mets diagnosis is relevant is correct but that does not mean anything other than guidelines for treatment.
Its too bad we get so freaked out over stats and probabilities. The probabilities we should focus on is that we all fall on the good side of the odds. 70% of BC survivors will NEVER recur or will be NED in their lifetime. If you want to see truth in stats, focus on that number.
wallan
-
As Mark twain said, there are lies, damned lies and then there are statistics. John Hopkin's answered this question on their "Ask an Expert" site. The 30% is very general, because early breast cancer has huge differences under that title. A tumour less than 1 cm, grade 1, low oncotype does not have the same recurrence as a stage 3a, grade 3, higher risk oncotype. BUT no one who has had breast cancer is ever at 0 and also, there is greater chance of getting another, different cancer as well, not necessarily a recurrence. The 3 year average life span after a recurrence is rather misleading as well. Some one with a small bone lesion and HR+her2- can live a decade or more vs someone who has triple negative b.c. in lungs, brain, liver. Each cancer is individual to the patient as well. responses to treatment vary as well. Statistics are fine for some things, but not for determining YOUR individual outcome. Live the life that has been saved, for as long as you have, because we ALL have dates on a calendar for when it is our time...cancer, or no cancer.
-
bump
-
Charz & Bessie - well said.
Recently I had a conversation with a friend who is mathematician and geneticist. He believes that our bodies have mutated cells floating round our bodies and turned on and off by our immune system. As we age, our immune system weakens and opens the door to mutated cells' evolution into cancer cells. Past and present cancer research efforts are looking to develop ways to use our immune systems to fight all types of cancers. But for us, current patients, what does that mean? For myself, I realize I will need to built up my immune system with daily exercise, low-fat diet, no alcohol and up to date immunizations. I am going to talk to PCP to ask her advice on how to build up my immune system.
Also, he also said that current science is just beginning to identified more associated genes with particular cancers. With BC, there are known 23 associated genes. Our bodies have 70,000 genes. Recently mathematical experiments using supercomputers and quantum mechanics equations identified more genes for known cancers. For kidney cancer, they discovered over 15 more genes associated with this type of cancer. (Unfortunately, they did not look at BC genes.) For everyone, these experiments are just the beginning to finding a complete cure for cancer.
We may not see it in our life times but our children hopefully will, if the government continues to fund basic research! Bug your federal representatives and ask them not to let basic research funding slip especially for cancer research.
Categories
- All Categories
- 679 Advocacy and Fund-Raising
- 289 Advocacy
- 68 I've Donated to Breastcancer.org in honor of....
- Test
- 322 Walks, Runs and Fundraising Events for Breastcancer.org
- 5.6K Community Connections
- 282 Middle Age 40-60(ish) Years Old With Breast Cancer
- 53 Australians and New Zealanders Affected by Breast Cancer
- 208 Black Women or Men With Breast Cancer
- 684 Canadians Affected by Breast Cancer
- 1.5K Caring for Someone with Breast cancer
- 455 Caring for Someone with Stage IV or Mets
- 260 High Risk of Recurrence or Second Breast Cancer
- 22 International, Non-English Speakers With Breast Cancer
- 16 Latinas/Hispanics With Breast Cancer
- 189 LGBTQA+ With Breast Cancer
- 152 May Their Memory Live On
- 85 Member Matchup & Virtual Support Meetups
- 375 Members by Location
- 291 Older Than 60 Years Old With Breast Cancer
- 177 Singles With Breast Cancer
- 869 Young With Breast Cancer
- 50.4K Connecting With Others Who Have a Similar Diagnosis
- 204 Breast Cancer with Another Diagnosis or Comorbidity
- 4K DCIS (Ductal Carcinoma In Situ)
- 79 DCIS plus HER2-positive Microinvasion
- 529 Genetic Testing
- 2.2K HER2+ (Positive) Breast Cancer
- 1.5K IBC (Inflammatory Breast Cancer)
- 3.4K IDC (Invasive Ductal Carcinoma)
- 1.5K ILC (Invasive Lobular Carcinoma)
- 999 Just Diagnosed With a Recurrence or Metastasis
- 652 LCIS (Lobular Carcinoma In Situ)
- 193 Less Common Types of Breast Cancer
- 252 Male Breast Cancer
- 86 Mixed Type Breast Cancer
- 3.1K Not Diagnosed With a Recurrence or Metastases but Concerned
- 189 Palliative Therapy/Hospice Care
- 488 Second or Third Breast Cancer
- 1.2K Stage I Breast Cancer
- 313 Stage II Breast Cancer
- 3.8K Stage III Breast Cancer
- 2.5K Triple-Negative Breast Cancer
- 13.1K Day-to-Day Matters
- 132 All things COVID-19 or coronavirus
- 87 BCO Free-Cycle: Give or Trade Items Related to Breast Cancer
- 5.9K Clinical Trials, Research News, Podcasts, and Study Results
- 86 Coping with Holidays, Special Days and Anniversaries
- 828 Employment, Insurance, and Other Financial Issues
- 101 Family and Family Planning Matters
- Family Issues for Those Who Have Breast Cancer
- 26 Furry friends
- 1.8K Humor and Games
- 1.6K Mental Health: Because Cancer Doesn't Just Affect Your Breasts
- 706 Recipe Swap for Healthy Living
- 704 Recommend Your Resources
- 171 Sex & Relationship Matters
- 9 The Political Corner
- 874 Working on Your Fitness
- 4.5K Moving On & Finding Inspiration After Breast Cancer
- 394 Bonded by Breast Cancer
- 3.1K Life After Breast Cancer
- 806 Prayers and Spiritual Support
- 285 Who or What Inspires You?
- 28.7K Not Diagnosed But Concerned
- 1K Benign Breast Conditions
- 2.3K High Risk for Breast Cancer
- 18K Not Diagnosed But Worried
- 7.4K Waiting for Test Results
- 603 Site News and Announcements
- 560 Comments, Suggestions, Feature Requests
- 39 Mod Announcements, Breastcancer.org News, Blog Entries, Podcasts
- 4 Survey, Interview and Participant Requests: Need your Help!
- 61.9K Tests, Treatments & Side Effects
- 586 Alternative Medicine
- 255 Bone Health and Bone Loss
- 11.4K Breast Reconstruction
- 7.9K Chemotherapy - Before, During, and After
- 2.7K Complementary and Holistic Medicine and Treatment
- 775 Diagnosed and Waiting for Test Results
- 7.8K Hormonal Therapy - Before, During, and After
- 50 Immunotherapy - Before, During, and After
- 7.4K Just Diagnosed
- 1.4K Living Without Reconstruction After a Mastectomy
- 5.2K Lymphedema
- 3.6K Managing Side Effects of Breast Cancer and Its Treatment
- 591 Pain
- 3.9K Radiation Therapy - Before, During, and After
- 8.4K Surgery - Before, During, and After
- 109 Welcome to Breastcancer.org
- 98 Acknowledging and honoring our Community
- 11 Info & Resources for New Patients & Members From the Team