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Topic: Anyone with low oncotype score have a recurrence?

Forum: Stage I Breast Cancer — Meet other members with a Stage I breast cancer diagnosis to share information and support.

Posted on: May 15, 2013 11:25PM

Sweetie1972 wrote:

Just curious if anyone with low score that opted against chemo if your cancer returned down the road
Thanks for any input :)

Dx 2/2013, ILC, 2cm, Stage IIB, Grade 2, 1/20 nodes, ER+/PR+, HER2- Surgery 4/3/2013 Mastectomy: Right; Prophylactic mastectomy: Left Surgery 4/16/2013 Lymph node removal: Right, Underarm/Axillary Chemotherapy 6/14/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 9/6/2013 Breast, Lymph nodes Hormonal Therapy 10/1/2013 Surgery 8/11/2014 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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Posts 31 - 59 (59 total)

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Aug 21, 2014 07:05AM Sassy_Seven wrote:

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.

Dx 11/19/2013, IDC, 2cm, Stage IIA, Grade 2, ER+/PR+, HER2- Hormonal Therapy 2/1/2014 Femara (letrozole) Dx 8/13/2014, IDC, 2cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 8/13/2014 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 9/15/2014 Breast
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Aug 21, 2014 08:40PM - edited Apr 21, 2015 11:02PM by JohnSmith

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.

Wife was Age 45 at Dx 4/2014. BMX Surgery 6/2014 revealed: ILC, Stage 2 (Multifocal ILC, largest lesion 2.2 cm), Grade 2, ER+/PR+ (95%), HER2-, Ki-67 5-10%, Oncotype 11; Variant in the ATM gene Dx 4/8/2014, ILC, Left, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (IHC) Surgery 6/26/2014 Mastectomy; Reconstruction (left); Reconstruction (right)
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Aug 21, 2014 08:47PM - edited Aug 21, 2014 08:54PM by Meow13


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.

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Aug 21, 2014 08:49PM SpecialK wrote:

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


 

BMX w/ TE 11/1/10, ALND 12/6/10. 15 additional surgeries. TCHx6 2/17-6/2/11. Herceptin until 1/19/12. Femara 8/1/11, Arimidex 6/20/12, back to Femara 6/18/13-present. Dx 9/27/2010, IDC, Right, 2cm, Stage IIB, Grade 3, 2/14 nodes, ER+/PR+, HER2+ (IHC) Dx 9/27/2010, DCIS, Stage 0, Grade 3
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Sep 28, 2014 10:35PM vbishop wrote:

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.

Sassy, classy and still kickin' assy! Dx 9/8/2013, LCIS/ILC, Left, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 9/28/2013 Lymph node removal: Left, Sentinel Surgery 10/8/2013 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 11/1/2013 Arimidex (anastrozole) Surgery 12/23/2013 Reconstruction (left); Reconstruction (right)
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Sep 29, 2014 02:37AM edwards750 wrote:

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 

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Sep 29, 2014 05:00AM vbishop wrote:

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. 


 

Sassy, classy and still kickin' assy! Dx 9/8/2013, LCIS/ILC, Left, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 9/28/2013 Lymph node removal: Left, Sentinel Surgery 10/8/2013 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 11/1/2013 Arimidex (anastrozole) Surgery 12/23/2013 Reconstruction (left); Reconstruction (right)
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Sep 29, 2014 09:53AM Nan54 wrote:

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. 

Dx 5/31/2013, IDC, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2-
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Sep 29, 2014 03:16PM april485 wrote:

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.

"Fear has been a huge dictator in my life - so I am trying to stage a coup!" ~ a friend Dx 1/30/2013, DCIS, <1cm, Stage 0, Grade 2, ER+/PR+ Surgery 2/21/2013 Lumpectomy: Left Surgery 3/11/2013 Lumpectomy: Left Radiation Therapy 4/22/2013 3DCRT: Breast Hormonal Therapy 6/20/2013 Aromasin (exemestane) Hormonal Therapy 1/2/2016 Femara (letrozole)
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Sep 29, 2014 10:33PM whatnow wrote:

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.

Age 46 at dx. Initial finding 1.8 cm. MRI found a 2nd, smaller primary tumor in same breast the day before mastectomy ("close to, but not touching chest wall"). Stopped chemo after 1 treatment due to unease with risk:benefit ratio. Dx 4/1/2005, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+ Surgery 5/1/2005 Mastectomy: Right Chemotherapy 7/1/2005 AC + T (Taxol) Hormonal Therapy 1/1/2006 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 1/1/2008 Aromasin (exemestane)
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Sep 29, 2014 11:46PM DiveCat wrote:

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.

Hereditary High Risk, Uninformed BRCA Negative Surgery 4/24/2014 Prophylactic mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Surgery 3/12/2015 Reconstruction (left); Reconstruction (right)
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Sep 30, 2014 01:48AM - edited Sep 30, 2014 01:51AM by mortmain

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.

Dx 6/16/2014, IDC, <1cm, 0/2 nodes, ER+/PR+, HER2- Surgery 7/17/2014 Lumpectomy: Right; Lymph node removal: Right, Sentinel Radiation Therapy 8/20/2014 Breast, Lymph nodes Hormonal Therapy 6/16/2016 Femara (letrozole)
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Sep 30, 2014 02:47AM vbishop wrote:

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.


 

Sassy, classy and still kickin' assy! Dx 9/8/2013, LCIS/ILC, Left, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 9/28/2013 Lymph node removal: Left, Sentinel Surgery 10/8/2013 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 11/1/2013 Arimidex (anastrozole) Surgery 12/23/2013 Reconstruction (left); Reconstruction (right)
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Sep 30, 2014 08:11AM mema4 wrote:

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!

Oncotype 6 Stopped taking Arimidex after 3 months. Dx 11/2013, IDC, 3cm, Stage I, Grade 3, 0/1 nodes, ER+, HER2- Surgery 12/26/2013 Lumpectomy: Left Surgery 1/8/2014 Lymph node removal: Left; Mastectomy: Left; Reconstruction (left): Tissue expander placement
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Sep 30, 2014 04:41PM - edited Sep 30, 2014 04:52PM by whatnow

This Post was deleted by whatnow.
Age 46 at dx. Initial finding 1.8 cm. MRI found a 2nd, smaller primary tumor in same breast the day before mastectomy ("close to, but not touching chest wall"). Stopped chemo after 1 treatment due to unease with risk:benefit ratio. Dx 4/1/2005, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+ Surgery 5/1/2005 Mastectomy: Right Chemotherapy 7/1/2005 AC + T (Taxol) Hormonal Therapy 1/1/2006 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 1/1/2008 Aromasin (exemestane)
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Sep 30, 2014 04:54PM whatnow wrote:

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.

Age 46 at dx. Initial finding 1.8 cm. MRI found a 2nd, smaller primary tumor in same breast the day before mastectomy ("close to, but not touching chest wall"). Stopped chemo after 1 treatment due to unease with risk:benefit ratio. Dx 4/1/2005, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+ Surgery 5/1/2005 Mastectomy: Right Chemotherapy 7/1/2005 AC + T (Taxol) Hormonal Therapy 1/1/2006 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 1/1/2008 Aromasin (exemestane)
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Sep 30, 2014 05:08PM riverhorse wrote:

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!  

Dx 11/22/2011, ILC, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR-, HER2-
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Sep 30, 2014 08:13PM lurkingnomore wrote:

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

IDC in 2008. Did the usual, lumpectomy, chemo , radiation and anti hormonals. Mets to bone in December 2012 resulting in fractured pelvis. Now mets to lung, liver, and lymph nodes.
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Oct 1, 2014 03:16AM jessica749 wrote:

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.

Dx 1/17/2010, IDC, <1cm, Stage I, Grade 3, 0/1 nodes, ER+/PR+, HER2-
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Oct 1, 2014 04:54AM lyzzysmom wrote:

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.

Oncotype DX 12, age at dx 59 Surgery 5/6/2014 Lumpectomy: Right; Lymph node removal: Right, Sentinel Dx 5/16/2014, ILC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR-, HER2- Dx 5/16/2014, LCIS, Stage 0, 0/1 nodes Radiation Therapy 6/24/2014 Breast Hormonal Therapy 8/18/2014 Arimidex (anastrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Oct 1, 2014 08:23AM mema4 wrote:

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!

Oncotype 6 Stopped taking Arimidex after 3 months. Dx 11/2013, IDC, 3cm, Stage I, Grade 3, 0/1 nodes, ER+, HER2- Surgery 12/26/2013 Lumpectomy: Left Surgery 1/8/2014 Lymph node removal: Left; Mastectomy: Left; Reconstruction (left): Tissue expander placement
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Oct 13, 2014 12:39AM lurkingnomore wrote:

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

IDC in 2008. Did the usual, lumpectomy, chemo , radiation and anti hormonals. Mets to bone in December 2012 resulting in fractured pelvis. Now mets to lung, liver, and lymph nodes.
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May 13, 2015 06:38PM farmerjo wrote:

Bump, please. :)

ATM gene mutation, Lynch Syndrome, On HRT for 17 years at dx. Oncotype 19, MammaPrint high-risk. Ki67 29.1% ER 90% PR 5% False-negative sentinel node biopsy Dx 1/26/2015, IDC, Left, 2cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (FISH) Surgery 2/12/2015 Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Dx 2/13/2015, DCIS, Left, <1cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+, HER2- (FISH) Hormonal Therapy 4/12/2015 Femara (letrozole) Dx 5/31/2016, IDC, Left, Stage IIB, Grade 2, 1/11 nodes, ER+/PR+, HER2- Surgery 6/17/2016 Lymph node removal: Left Chemotherapy 7/31/2016 AC + T (Taxol) Hormonal Therapy 12/20/2016 Aromasin (exemestane) Surgery 1/17/2017 Prophylactic ovary removal
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May 18, 2015 04:09AM KBeee wrote:

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.

Karen. Dx 8/5/2013, IDC, Right, 1cm, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 8/26/2013 Mastectomy: Left, Right Chemotherapy 9/20/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 12/12/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 1/23/2014 Reconstruction (left); Reconstruction (right) Surgery 1/29/2015 Lumpectomy: Right Dx 2/2/2015, IDC, Right, 1cm, Grade 2, 0/0 nodes, ER+/PR-, HER2- (FISH) Dx 2/25/2015, IDC, Right, 1cm, Grade 3, 0/13 nodes, ER+/PR-, HER2- (IHC) Surgery 2/25/2015 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary; Prophylactic ovary removal Chemotherapy 3/31/2015 AC + T (Taxol) Radiation Therapy 8/25/2015 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy Femara (letrozole)
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Jun 1, 2015 04:14PM - edited Jun 22, 2015 07:06PM by ganzgirl2010

This Post was deleted by ganzgirl2010.
Dx 3/2013, LCIS, 6cm+, Stage 0, Grade 1, ER+/PR+, HER2- Surgery 3/22/2013 Lumpectomy: Left Dx 7/9/2014, ILC, 5cm, Stage I, Grade 2, ER+/PR+, HER2- Dx 8/20/2014, ILC, <1cm, Stage I, Grade 2, 0/1 nodes, ER+/PR+, HER2- Dx 8/20/2014, LCIS, 6cm+, Stage 0, Grade 2, ER+/PR+, HER2- Surgery 8/20/2014 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 8/20/2014 Lymph node removal: Left, Sentinel Surgery 11/17/2014 Prophylactic ovary removal Surgery 1/14/2015 Reconstruction (left); Reconstruction (right) Surgery 6/17/2015 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 3/9/2016 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting Surgery 9/6/2016 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting Hormonal Therapy Arimidex (anastrozole) Surgery
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Mar 5, 2018 11:01AM Mgriffiths12 wrote:

the best post I’ve ever read, all about importance of vontext

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Mar 6, 2018 01:46AM wallan wrote:

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



Dx 3/29/2004, IDC, Right, 6cm+, Stage IIIA, Grade 3, 2/18 nodes, ER+/PR+, HER2- Surgery 3/31/2004 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Chemotherapy 5/31/2004 AC + T (Taxol) Radiation Therapy 11/30/2004 Whole-breast: Breast, Lymph nodes, Chest wall Dx 1/25/2017, LCIS/DCIS/ILC/IDC/IDC: Mucinous/IDC: Cribriform, Left, <1cm, Stage IB, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 3/7/2017 Lymph node removal: Sentinel; Mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Fat grafting Hormonal Therapy Aromasin (exemestane), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Mar 6, 2018 05:50PM bluepearl wrote:

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.

Dx 1/6/2011, IDC, 1cm, Stage I, Grade 1, 0/7 nodes, ER+/PR+, HER2- Surgery 2/12/2011 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Dx 2/2013, IDC, <1cm, Stage I, Grade 3, 0/3 nodes, ER+/PR+, HER2- Surgery 3/10/2013 Lymph node removal: Right, Sentinel; Mastectomy: Right Hormonal Therapy 3/18/2013
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May 15, 2018 04:21AM farmerjo wrote:

bump

ATM gene mutation, Lynch Syndrome, On HRT for 17 years at dx. Oncotype 19, MammaPrint high-risk. Ki67 29.1% ER 90% PR 5% False-negative sentinel node biopsy Dx 1/26/2015, IDC, Left, 2cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (FISH) Surgery 2/12/2015 Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Dx 2/13/2015, DCIS, Left, <1cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+, HER2- (FISH) Hormonal Therapy 4/12/2015 Femara (letrozole) Dx 5/31/2016, IDC, Left, Stage IIB, Grade 2, 1/11 nodes, ER+/PR+, HER2- Surgery 6/17/2016 Lymph node removal: Left Chemotherapy 7/31/2016 AC + T (Taxol) Hormonal Therapy 12/20/2016 Aromasin (exemestane) Surgery 1/17/2017 Prophylactic ovary removal

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