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Topic: ILC: Oncotype Score 24 chemo decision

Forum: ILC (Invasive Lobular Carcinoma) — Just diagnosed, in treatment, or finished treatment for ILC.

Posted on: Apr 25, 2017 06:59PM

ChiAlli wrote:

Hello, newbie to this site. I was diagnosed with Stage 1 ILC on February 1, 2017. Discovered via regular screening mammogram. Zero symptoms. I am 46 with no known familial breast cancer history.

I do have a genetic marker for a colon/uterine/ovarian cancer risk called Lynch Syndrome. I had a complete hysterectomy in December 2015 (ovaries, uterus and cervix) due mostly to the uterine cancer risk. The decision was not difficult for me, so I am not against an aggressive course of treatment if need be. I'm now recommended to get yearly colonoscopies for the colon cancer risk and every other year endoscopies.

Back to the ILC. I had a BMX March 29--recommended due to the Lynch Syndrome and unsure correlation with breast cancer. Don't regret, excited for new boobs down the line (have started immediate reconstruction). My cancer/tumor characteristics are: Stage 1, ER+ (strong) and PR+ (strong) HER2 negative; grade 2; size 1.8 cm. No nodes whatsoever. No K1-67 score done. Breast surgeon highly confident I would not need chemo based on this information. (As was my first BS, who discounted the Lynch aspect and had recommended lumpectomy and radiation).

I met with the MO for the first time before the oncotype score came back. He started with a lengthy discussion of the chemo course he would put me on. I pushed back with whether I in fact needed chemo at all and could just go on AIs (remember, ovaries gone). We decided to wait on the oncotype score.

Score is 24. This MO says the "new" ranges are 0-10; 11-25; 25 and up. So he considers me "extremely high intermediate" and thus I need chemo. My gut tells me different. I want to be smart about this. I am going to ask for the Mammaprint test next week when I meet with him in person. I also plan on getting a second opinion (perhaps from Dr. Keith Block, as I am in Chicago). I haven't been afraid of aggressive treatment in the past, but chemo just doesn't seem right.

I welcome any advice, comments, suggestions, personal experiences that could help me make a "good" decision. Thanks!

Dx 2/1/2017, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 3/29/2017 Mastectomy
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Apr 25, 2017 08:19PM Moderators wrote:

Hi ChiAlli-

We want to welcome you to BCO! We're sorry you find yourself here, but we hope you find these boards to be a source of support and information.

We definitely agree with getting a second opinion, that's always a good idea, but especially when you have concerns about what you've been told. Also, check out our chemo forum for more info on oncotype scores and what some of our members have decided to do: https://community.breastcancer.org/forum/69.

We wish you luck on your decision!

The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Apr 25, 2017 09:25PM Siciliana wrote:

ChiAlli, my Onco score recently came back at 20, which my MO said was at the low range of the intermediate score. I chose not to do chemotherapy based on my very low intermediate score and only a 0 to 2% improvement with chemo. Based on what your MO said about the ranges changing, making the "new" intermediate range 11 to 25, I am a little concerned. Can anybody shed any light on this?

Dx 12/19/2016, ILC, Right, 1cm, Stage IIA, Grade 2, 1/3 nodes, ER+/PR+, HER2- Surgery 2/23/2017 Lumpectomy: Right; Lymph node removal: Sentinel Hormonal Therapy 6/3/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast, Lymph nodes
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Apr 25, 2017 10:23PM - edited Apr 25, 2017 10:24PM by Meow13

My oncodx was 34, 1 ilc and 1 idc stage 1, no nodes low grade 2. I was er 95% pr less than 1 %. I didn't do the recommended chemo. I had mx and DIEP and 4 years ai. Over 5.5 years ned.

Post menopausal and 53 years old.

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Apr 26, 2017 01:37AM Jackster51 wrote:

I don't know anything about ILC, as I was IDC - but just wanted to say that I'm glad you are doing your due diligence and asking around. Will be interesting to hear what they say at Block. Keep us posted.

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Apr 26, 2017 01:43AM Hopeful82014 wrote:

The ranges have NOT been changed! A different set of numbers were used in ONE study.

Please consult the Oncotype DX site for reliable information.

Personally, I would not trust any MO who talks about the ranges having been changed.
Dx IDC
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Apr 26, 2017 02:56AM - edited Apr 26, 2017 02:56AM by ChiSandy

The confusion over ranges stems mostly from the first release of data from the TAILORx study. They did not release results chemo vs. no chemo for women scoring 11 or higher, because 0-10 is less common, therefore the smallest cohort of patients studied, and there simply hasn't been enough time elapsed to evaluate the much larger cohort of women scoring 11+. That does NOT mean that 11 and up is “intermediate." Genomic Health has NOT revised its ranges, which consider 0-17 to be “low risk." Therefore, 24 is intermediate, not extremely-high-intermediate.

At which hospital are you currently being treated? If it's North Shore Evanston, from your description of his “chairside manner," I have a suspicion as to the identity of your MO. But before you consult Dr. Block (who is considered something of a maverick because of his clinic's strict patient-lifestyle protocols and heavier emphasis on complementary therapies), I would seek out another MO at your health system. If it's NorthShore, I can tell you that its individual MOs have distinctly different approaches, especially when it comes to interpersonal communication styles and willingness to adapt to patients' unique life situations and preferences. (Mine, Dr. Teresa Law, didn't even mention treatment modalities until she first thoroughly asked me about my needs and wants in relation to my general health, goals, and family). Or you could get a consult with an MO at a different local system such as Advocate, Northwestern Medicine, or U of C. At the very least, you have a right to know what your hospital's tumor board recommends.

I also suspect that this MO may have assumed that because of your relative youth, ILC vs. IDC, intermediate Oncotype score and Lynch Syndrome, you'd want to be as aggressive as possible. That's probably why he jumped right in with his description of chemo protocols, rather than asking first about your concerns. If it's whom I think it is, he is not known for warmth and interpersonal skills.

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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Apr 26, 2017 10:54AM ChiAlli wrote:

Thanks for the replies so far. I am being treated at Northwestern. I was diagnosed at Evanston NorthShore, but switched hospitals based on the second opinion and location (I live walking distance to Northwestern).

I plan on getting a second opinion either at ENS or UC. There's a part of me that likes the idea of getting two different health systems' "take" on things, but I would also consider another opinion at NW. I have a follow up appointment with my BS in less than two weeks, so I plan on asking her advice as well. I would consult someone like Dr. Block after two more "traditional" medical opinions.

As for the Oncotype ranges: Thank You ChiSandy and Hopeful for your comments. I have spent hours upon hours researching the score ranges; I see that Genomic Health has NOT changed their ranges, and I cannot find anything published or discussed with these supposed new ranges proposed by my MO. I've read up on the TailorX results for the 0-10 scores; I've read MD Anderson's recent research on intermediate recurrence scores; and I'm just seeing so much available information that doesn't jive with what this MO is saying. I've got a mile long list of topics I want to discuss with him when I meet with him next week. Until then, I cannot even get a look at the test results myself, which is frustrating.

Dx 2/1/2017, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 3/29/2017 Mastectomy
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Apr 26, 2017 12:19PM lrwells50 wrote:

I also have ILC and an Oncotype DX score of 24. My local oncologist wants to do a dose dense 8 treatments of AC + Taxol over 4 months. I went to Baylor Dallas for a second opinion with one of their oncologists who only treats breast cancer. He said with a 1.2 cm ILC and no node involvement, he wouldn't have ordered the Oncotype, and I'd be on Arimidex. I said now that I'm smack in the middle of the intermediate range, what would you do if it was your family member, and he said he'd do 4 treatments of TC over 9 weeks. Since then, however, I've read of some truly frightening cases of neuropathy as a result of chemo, and I'm going to make another appointment to talk to him. I can find several places online that say 30 - 40% of patients who get Taxol or Taxotere have some neuropathy. What I can't find is in what percentage of patients it is permanent. I'm 100% ER+, but very weakly PR+, which is I think what is putting me in the intermediate range.

The other unusual thing about my carcinoma, is the all of the labs said it was IDC, until a week after the surgery, the pathologist amended the report to change the diagnosis to ILC with ductal features, because E-Cadherin was negative. I don't really know what that means, so something else to ask the oncologist.

I also have (I think, haven't seen a doctor about it,) Raynaud's syndrome, and I want to know if that will increase my chance of developing neuropathy. The local oncologist says no, and that with the 4 treatment regimen, I shouldn't have neuropathy problems with Taxatore like I might with Taxol. That's not what I'm reading, hence the need to talk to the second opinion doc again. Also, a chance of permanent hair loss with Taxotere, not with Taxol.

I'm 66. My mother had breast cancer twice, two radical mastectomies, and radiation. No clue what type of breast cancer. I was gene tested, and have a BARD1 mutation, which means increased risk of breast cancer, but they don't know increased by how much. if I was 46, I'd definitely have the chemo. At 66, not so sure.

Diagnosed at 66, OncotypeDx 24, I think because although I was 100% ER+, I was very weakly PR+ . BARD1 mutation, mother had breast cancer twice. Dx 12/5/2016, ILC, Left, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery 3/8/2017 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 5/19/2017 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy Arimidex (anastrozole)
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Apr 26, 2017 12:23PM - edited Apr 26, 2017 01:34PM by BarredOwl

I agree with those above who indicated that the Standard Risk Ranges for the OncotypeDX test for invasive disease remain unchanged as of this date.

I note that the National Comprehensive Cancer Network (NCCN) guidelines for Breast Cancer (Version 2.2017) include the Oncotype test for invasive disease in certain cases in the treatment algorithm for hormone receptor-positive, HER2-negative disease shown in Chart BINV-6 (pdf page 17). The latest version is dated April 6, 2017 and reflects the original Standard Risk Ranges.

I have posted my layperson views on this issue many times, and reproduce text from other posts for those who may be concerned.

The standard risk category ranges for the OncotypeDX test for invasive disease (in node-negative or node-positive disease) based on various validation studies in these groups, are and have always been as follows:

Low-risk: Recurrence Score < 18 (i.e., 0 to 17)

Intermediate-risk: Recurrence Score 18 to 30

High-risk: Recurrence Score 31 (i.e., 31 to 100)

For links to numerous scientific publications setting forth these standard ranges, see this post:

https://community.breastcancer.org/forum/69/topics/840731?page=1#post_4624429

A Recurrence Score of 24 is squarely in the middle of the standard intermediate range of 18 to 30:

18--19--20--21--22--23--24--25--26--27--28--29--30

It is possible that the confusion is based on certain investigational ranges being used in on-going clinical trials. In this regard, the prospective TAILORx trial in node-negative (N0) patients and the prospective RxPONDER trial in certain node-positive patients are using different investigational ranges, but they are still in progress.

In 2008, Sparano and Paik commented on various considerations in the selection of these investigational ranges:

Sparano and Paik (2008), "Development of the 21-Gene Assay and Its Application in Clinical Practice and Clinical Trials"

http://ascopubs.org/doi/full/10.1200/JCO.2007.15.1068

"The RS ranges used in TAILORx are different from those originally defined as low- (< 18), intermediate- (18-30), and high- (≥ 31) risk. The range was adjusted to minimize the potential for undertreatment in both the high-risk group and the randomized group. When the NSABP B-20 data were analyzed using the RS ranges used in TAILORx, the treatment effect of chemotherapy was similar to the original analysis, and the risk of recurrence was 5% or less with tamoxifen alone in the low and midrange RS groups (Table 4). Although a trend favoring the addition of chemotherapy becomes evident at an RS of approximately 11 when the risk of relapse is analyzed in a linear fashion, the 95% CIs completely overlap in the 11 to 25 RS range (Fig 6). An RS of 11 is associated with a risk of both local and distant relapse of approximately 10%, a threshold that has been typically used for recommending adjuvant chemotherapy."

Figure 6 illustrates the overlap of confidence intervals (dotted lines) quite clearly:

This 2015 publication regarding TAILORx trial in node-negative ("N0") patients also provided some explanation for the investigational ranges:

Sparano (2015), Prospective Validation of a 21-Gene Expression Assay in Breast Cancer"

Main Page: http://www.nejm.org/doi/full/10.1056/NEJMoa1510764#t=article

Free PDF: http://www.nejm.org/doi/pdf/10.1056/NEJMoa1510764

"To minimize the potential for undertreatment of the participants enrolled in our trial, the recurrence-score ranges used in our study differed from those that were originally defined as low (≤10 in our study vs. <18 in the original definition), intermediate (11 to 25 vs. 18 to 30), and high (≥26 vs. ≥31). The recurrence-score strata derived for the trial were based on prior studies that indicated that the risk of recurrence of breast cancer at a distant site at 10 years after diagnosis and a 5-year course of tamoxifen could be as high as 10% among patients with a score of 11 (point estimate, 7%; 95% confidence interval [CI], 5 to 10) and up to 20% among those with a score of 25 (point estimate, 16%; 95% CI, 13 to 20), indicating a risk that was substantial enough for a recommendation of adjuvant chemotherapy in patients with a score of 11 or higher."

In my layperson's understanding, the revised ranges selected for the purposes of the trial are "investigational" until demonstrated otherwise. Sparano (2015) reported the interim 5-year results in node-negative ("N0") patients with Recurrence Scores of 0 to 10 who all received endocrine therapy alone. These results showed that the test is quite robust in this sub-set of "low risk RS" patients (N0, RS 0 to 10). However, these results (for RS 0 to 10 only) did not operate to change the standard ranges. This is because they do not speak to outcomes for those with other scores (11 and above). We are still awaiting TAILORx trial results in its slightly differently defined investigational "intermediate" risk (RS 11 to 25) and investigational "high" risk (RS 26 and above) groups, so the standard ranges are still in effect (<18; 18 to 30; ≥31).

The on-going RxPONDER trial is still evaluating whether adjuvant chemotherapy is beneficial in patients with hormone receptor-positive, HER2-negative breast cancer with 1-3 positive lymph nodes and a Recurrence Score of 25 or less.

Of course, the investigational ranges reflect considerations of the magnitude of the recurrence risk associated with particular Recurrence Scores, and patients may wish to discuss this with their MOs.

BarredOwl

Stage IA IDC, 9/2013 BMX. Right: IDC (1.5 mm, grade 2) with DCIS (5+ cm), 0/4 nodes, pN0. Left: DCIS (5+ cm), 0/1 node, pN0(i+).
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Apr 26, 2017 12:35PM Jackster51 wrote:

Irwells, I am 5 years out from TC - and I still have excruciatingly painful neuropathy in my feet. Can not wear closed toed shoes or stand on my feet for extended periods of time. Swollen legs. I also did not get my hair back from Taxotere. Don't want to scare you off, but wanted to share my unfortunate experience.

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Apr 26, 2017 12:37PM - edited Apr 26, 2017 12:46PM by BarredOwl

I have also posted on the recent MD Anderson study. The MD Anderson press release includes some important comments from the lead author:

https://www.mdanderson.org/newsroom/2017/02/more-patients-with-early-stage-breast-cancer-may-be-able-to-avoi.html

"The study has a number of limitations, said Barcenas. Due to a relatively short follow-up and the few number of outcome events, the researchers feel that the benefit of chemotherapy cannot be ruled out yet in this group of patients.

While not practice changing, the findings do give Barcenas more information when discussing the benefits of chemotherapy in early-stage breast cancer patients, should their RS score be 11-25."

Unfortunately, the full-length research article is behind a paywall:

Barcenas (2017): http://onlinelibrary.wiley.com/doi/10.1002/cncr.30618/full

1424 patients were studied, using the investigational risk ranges from the TAILORx trial:

RS = 0 to 10 (297 patients; 21%): 1.7% of these received chemotherapy;

RS = 11 to 25 (894 patients; 63%): 15% of these received chemotherapy;

RS > 25 (233 patients;16%): 73.4% of patients of these received chemotherapy.


Note: Standard risk ranges for the OncotypeDX test for invasive disease are 0 to 17 ("Low Risk"); 18 to 30 ("Intermediate Risk"); and 31 to 100 ("High Risk"), and these will remain in place until the results of a practice-changing study become available. Again, Barcenas does not consider their results to be practice-changing per the quote above.

The MD Anderson study was a retrospective study based on clinical usage, so it appears that decision-making about chemotherapy was at the discretion of patients and their physicians.

The second group with Recurrence Scores of 11 to 25 included both patients with Recurrence Scores of 11 to 17 (i.e., in the standard "Low Risk" range) and patients with Recurrence Scores of 18 to 25 (i.e., in the standard "Intermediate Risk" range). My layperson impression is that the inclusion of those with scores of 11 to 17 could conceivably contribute to certain favorable findings, as well as potentially limit the potential benefit of added chemotherapy, seen in the 11 to 25 group as a whole (or say, perhaps, in a subgroup scoring 18 to 25).

I note that the TAILORx trial protocol suggests that the planned analysis includes certain outcomes by small increments in Recurrence Score within the 11 to 25 group (who were randomized to receive endocrine therapy alone OR endocrine therapy plus chemotherapy) to probe whether a subset within the 11 to 25 cohort may benefit from added chemotherapy. The results from this trial cannot come fast enough.

It is not really possible to evaluate the implications of a full-length paper from a press release or abstract. Those with pending treatment decisions interested in these findings should be certain to discuss them with their Medical Oncologist, to ensure proper weight is given to its findings.

BarredOwl

Stage IA IDC, 9/2013 BMX. Right: IDC (1.5 mm, grade 2) with DCIS (5+ cm), 0/4 nodes, pN0. Left: DCIS (5+ cm), 0/1 node, pN0(i+).
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Apr 26, 2017 01:28PM - edited Apr 26, 2017 01:35PM by BarredOwl

Hi ChiAlli:

If you and your team pursue MammaPrint testing, you may also wish to request the BluePrint test (for molecular subtype) in parallel.

Posts on MammaPrint and BluePrint with links to related publications and the Agendia (commercial provider) web site:

https://community.breastcancer.org/forum/108/topics/853465?page=1#post_4940692

https://community.breastcancer.org/forum/105/topics/812929?page=56#post_4872880

https://community.breastcancer.org/forum/105/topics/812929?page=56#post_4872848

And a recent thread:

https://community.breastcancer.org/forum/147/topics/853733?page=1#post_4933663

BarredOwl

Stage IA IDC, 9/2013 BMX. Right: IDC (1.5 mm, grade 2) with DCIS (5+ cm), 0/4 nodes, pN0. Left: DCIS (5+ cm), 0/1 node, pN0(i+).
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Apr 26, 2017 06:15PM ChiAlli wrote:

Thanks for the advice BarredOwl. I plan on doing just that.


Dx 2/1/2017, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 3/29/2017 Mastectomy
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Apr 26, 2017 06:43PM lekker wrote:

Your Lynch Syndrome diagnosis might ply into the decision. Have you consulted with a Lynch specialist? I believe there's a Lynch clinic at Creighton in Omaha (where Dr. Lynch himself was still practicing at least a few years ago - well into his 90's). Women with BRCA mutations tend to respond well to platinum based chemos. I don't know if there's a correlation between any of the Lynch mutations and chemo sensitivities. The ColonClub forums have some Lynch information - maybe you can check there while you're waiting for your next opinion?

Colorectal carcinoma in situ January 2000 (age 30), and now this... Dx 7/2012, ILC, Right, 1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 8/5/2012 Lumpectomy: Right Surgery 10/2/2012 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 3/11/2013 Reconstruction (left); Reconstruction (right) Surgery 4/10/2013 Prophylactic ovary removal
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Apr 26, 2017 07:09PM Lisey wrote:

I got the mammaprint as a second opinion and my Oncotype 20 came back as 'low risk/ Luminal A" - so no chemo for me.. I highly suggest getting the mammaprint as a second opinion for those of us in the intermediate realm. I also suggest that you start taking hormonals while you are waiting to figure out what you intend to do. You can always stop taking if you do end up doing chemo.

Oncotype =20, ER 95%, PR 5%, ki67= 30%, Mammoprint = Low, Blueprint = Luminal A!!!! TEs= Iron Bra of Death - not worth all the complications for foobs that I'll never feel. Flat and fealess now. Dx 5/11/2016, IDC, Right, 1cm, Stage IA, Grade 2, 0/6 nodes, ER+/PR+, HER2- Surgery 6/1/2016 Lymph node removal: Sentinel Surgery 6/14/2016 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 7/6/2016 Mastectomy: Left, Right Hormonal Therapy 7/14/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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May 12, 2017 03:24PM ChiAlli wrote:

Thanks Amapola. I've spent the last two weeks trying to figure everything out. I'm waiting on the Mammaprint--and yes, I've gotten the same spiel from more than one doctor (Northwestern and University of Chicago) about the limitations of Mammaprint. At this point, I've accepted the likelihood of chemo. I'll decide for sure on Wednesday when I go back to the Onco Doc. But I am still curious as to what Mammaprint says.

Dx 2/1/2017, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 3/29/2017 Mastectomy
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Feb 3, 2018 09:08PM MaryBeth6 wrote:

I am a little late to this discussion, although I have been reading here since my initial dx, I would really appreciate any insight or feedback that anyone has.

My diagnosis was in May, surgery June 14, and radiation July 31 to Aug 25, 2017; ILC, and an Oncotype score of 24.

At my 1st appt with the MO after radiation, she wanted to start me on Tamoxifen. She knew from the beginning that I was extremely leery of the AI's, and I think she just thought I would be less resistant to the Tamoxifen. However, I had also read several studies that were questioning the effectiveness of Tamoxifen on ILC. She dismissed my questions by saying "no one knows that". No more discussion.

Between Sept and Nov, I had 4 or 5 more appts with her - none more than 10 minutes long. Since I was still "not ready" to start the drug, on Nov 30, she said, "I will order an Oncotype." At this point, I really think it was more about her liability, rather than my care.

When I got my results 3 weeks later, it was very upsetting, since for months she had "promised" it would come back low. She just said, "So, not that low. You can think about the Tamoxifen, and let me know."

In the meantime, I have found a new MO, Dr. Tsai. My initial visit with her was over an hour long, plus another hour with her nurse. She very patiently reviewed my history, explaining each and every line of my pathology report and answering all of my questions.

Dr. Tsai said that she would have used the Mammaprint, rather than the Oncotype. But also, based on my pathology, probably would NOT have recommended chemo. When I asked if we could still run the MP, she declined, as the window for me to have any chemo has closed. (I forgot to ask her to explain that.)

I understand her hesitancy to run a 2nd expensive test, however, I feel like the intermediate score just leaves me in limbo. If my insurance turns it down, I have no problem paying the negotiated amount that they bill the patient.

It just seems like an important piece of the puzzle, especially given the differences in the two tests. I had a recent phone visit with a representative of Mammaprint (a doctor who works in their lab). She explained how the test was developed, and why they only have a low or high recurrence score. Also, an overview of why they use those particular 70 genes. And that none of the 70 in the MP are the same as the 21 in the Oncotype.) It was all very interesting.

I had made an earlier assumption that one of the reasons for my 24 RS was that my ER and my PR are both 100%. I have since read that there is some current testing in progress, and it seems to point to the higher PR having a positive, rather than negative effect.

I apologize that this is so long winded. As everyone knows, the questions are endless.

Dx 5/24/2017, ILC, Left, 1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- (FISH) Surgery 6/13/2017 Lumpectomy: Left Radiation Therapy 7/30/2017 Whole-breast: Breast Dx Dx
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Feb 12, 2018 06:21PM - edited Feb 12, 2018 06:21PM by MettaMary4

I went through the agony of less info and a partial second opinion that stayed on the fence about chemo for my ILC Oncotype 23 score. So I have gone ahead with chemo (4 cycles) plus radiation.

There is a real lack of sensitivity in general, it seems, from the medical community on the difficulty of the decision. Now that I am underway it seems tough but manageable so I'll stay the course. My approach was to do the most that was reasonable at my age and health and for reducing risk of recurrance. I had to set aside fears of chemo and risks as my doctor sees me as in good health and fit for my age so, that is how it went. But so hard and no two people are alike.

Deep lovingkindness sent your way. Breathe deeply as you discern.

Dx 11/6/2017, ILC, Right, 2cm, Stage IIA, Grade 2, ER+/PR+, HER2- (IHC) Chemotherapy 2/5/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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May 26, 2018 01:50PM MaryBeth6 wrote:

MettaMary4, I do hope you finished your treatments and are doing well!

I know a lot of people will read through these forums without posting, but trying to gather information, so I wanted to update my situation, hoping it is helpful to someone else.

Just had a follow up appt with my MO on May 3. My RS of 24 was still really unsettling to me, so again, I brought up the possibility of the Mammaprint. She agreed to order it. (I did tell her I was more than willing pay the negotiated amount if my insurance did not cover the cost.)

I received the results 2 days ago, and it is Low Risk - Luminal A!! I am very thankful, and relieved!

In addition to Low Risk, I am also in the approximate 15% of patients who score Ultra-low. I think it is in the MINDACT results, and also further reported in JAMA Oncology (Summer 2017), citing statistics between ultra low patients using endocrine therapy vs. no endocrine therapy.

Very interested if anyone here knows about this!


Dx 5/24/2017, ILC, Left, 1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- (FISH) Surgery 6/13/2017 Lumpectomy: Left Radiation Therapy 7/30/2017 Whole-breast: Breast Dx Dx
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May 26, 2018 03:04PM Anna1966 wrote:

Hello,

I have just seen your post, and wondered a year down the line, what decision you took regarding the chemo. I have just had an oncotype score of 24 and chose no chemo. However, I do wish I had done the mamma print test as I understand this is much more specific, and says either high or low risk, thus making the chemo decision easy if you are in high risk you do it.

Dx 3/27/2018, ILC, Left, 2cm, Stage IIB, Grade 2, ER+/PR-, HER2- Surgery 4/3/2018 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy Whole-breast: Breast
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May 26, 2018 03:09PM Anna1966 wrote:

Hello,

What a relief you must have felt to get the mammaprint results. Are you now doing hormone treatment? I am told I need to to the hormonal therapy once I finish my radiation. Would like to hear what you are taking and any side effects?




Dx 3/27/2018, ILC, Left, 2cm, Stage IIB, Grade 2, ER+/PR-, HER2- Surgery 4/3/2018 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy Whole-breast: Breast
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Jun 2, 2018 10:03AM MaryBeth6 wrote:

Anna1966,

I want to be very careful with my comments, and as usually noted, your MO is the one most familiar with your individual case.

My first MO was very insistent that I did NOT need the Oncotype test, but then totally changed her tune when it came back with a RS of 24. She was a "don't ask questions, do as I say" type doctor. I understand that lots of patients are really ok with that. (In fact, my next door neighbor has breast cancer, has this same MO, and would NOT dream of questioning anything she says!) As a patient, I am the complete opposite!

My new MO is a much better fit for me. We thoroughly discussed my pathology and the RS 24 score, and she completely understood that the result was confusing! In fact, she was the lead author on a study (published Summer 2017), that studied that very idea! (I don't think I can post links here yet, but PM me and I will send it to you.)

You are still very early in the process, so if your MO will order the Mammaprint for you, I think the information would be valuable.

I have tried to enter the Onco and Mammaprint results into my profile, but I must be doing it wrong. It's just showing 2 new dates for DX. Also, need to enter my genetic testing which showed no mutations.



Dx 5/24/2017, ILC, Left, 1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- (FISH) Surgery 6/13/2017 Lumpectomy: Left Radiation Therapy 7/30/2017 Whole-breast: Breast Dx Dx
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Jun 4, 2018 10:51AM wallycat wrote:

For anyone still in limbo, TailorX put out that if you are over 50, postmenopausal and score 11-25, no chemo is advised.

Dx 4/07 1 month before turning 50; ILC 1.8cm, ER+/PR+, HER2 neg., Stage 1, Grade 2, 0/5 nodes. Onco score 20, Bilateral Mast., tamoxifen 3-1/2 years, arimidex-completed 4/20/2012

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