Oncotype score vs recurrence risk - please help

Anonymous

Oncotype score vs recurrence risk - please help

Rubyroo

Hello,

Just got my oncotype score of 25, with an overall recurrence risk of 11%. The recurrence risk takes into account the size of my tumour and my age. My onc says chemo may reduce the risk to about 7%.

I am 31 and also pregnant. I know an oncotype score of 25 puts me in the intermediate risk range but the recurrence score of 11%, the relatively small benefit of chemo and the fact that I am pregnant is making this decision difficult for me.

Just hoping for some other opinions on this. My onc is leaning towards being aggressive but also admits I am in a bit of a grey zone. TIA

Brutersmom

My score was 24. They push for chemo because I was a grade 3. I opted for a second opinion at a Cancer center in my area. What they did for me was review everything and help me make an educated decision. My benefit chemo benefit was like yours about 7%. They put that against the risks and possible short and long term side effects. The thing that helped me make the decision was the long term or absolute benefit after 5 years was 2% and after 10 years there was no benefit. I would suggest getting a second opinion they may say the same thing but hearing it in a different way can be a great benefit in the decision making process.

kira1234

How far along in your pregnancy are you? I know there's a thread for pregnant women. Let me see if I can find it and bump it for you

MinusTwo

Ruby - I know you are concerned, but I see you've posted similar questions on 15 threads in around 45 days. It would be much better if you pick one thread so that we can know the back story & be better able to address your questions. It's too hard for us to consider going back & researching all of these various threads - and the fine points are often important.

Rubyroo

I apologize...I didn't realize I had been posting too much. I though that I would try to participate on a few different relevant threads to have different discussions going. This post basically sums up my most current update.

Appreciate your input

MinusTwo

RUby - it's not posting too much. It's that many of us feel the need to read all you previous posts & the answers in order to respond the best we can.

sorry I can't help with this one. I didn't have an oncotype test. Since I was HER2+, it was directly to chemo.

I know you discussed your pregnancy in other threads but I can't remember how far along you are? That might help someone else answer.

Rubyroo

I'm 22 weeks. Im mostly hoping to get any input from others who also struggled with an intermediate oncotype score and may have chosen to opt out of chemo. Perhaps i should look for existing discussion instead. I know I have a bit of a tendency to post here during times of distress..

kira1234

Rubyroo I think many of us are inclined to over post when stressed. I will tell you I opted to do chemo but ended up stopping after the first dose. I don't believe my original tumor reacurrance has anything to do with my stopping chemo.

Were you able to find the thread I bumped last night about pregnancy and chemo?

Rubyroo

kira1234 - yes, thanks - that was actually a thread I had started before I got my Oncotype score back

HaileysHooters

@Rubyroo, I'm in a very similar situation as you, apart from the pregnancy. I'm 30 and newly diagnosed with stage 1A invasive breast cancer, grade 2. I just received my OncoType score, which was 20.

I'm in the midst of switching oncologists for multiple reasons, however during my initial meeting with him (before the oncotype test), he told me he recommended chemo because of 1) my age (he said cancer tends to be more aggressive in younger patients); 2) my intermediate grade; and 3) my intermediate ki67 score. He initially told me I have a 15% chance of recurrence in 5-10 years, and chemo would lower that risk to 12%. I personally cannot fathom going through chemo for a 3% benefit, particularly when he mentioned tamoxifen is more beneficial in my case than chemotherapy.

After receiving my oncotype score, he told me he still favors me doing chemotherapy. I've been doing quite a bit of research on my own, listening to presentations and discussions by research doctors, and reading results and pending clinical trials. Here is what I've found, and plan on discussing with my new oncologist when I meet her next week -

The Ki67 score is the proliferation rate of which your cancer cells grow. The highest marker within my 1.8 cm tumor was 15%. Chemo attacks cells with a very high proliferation or growth rate - such as hair follicles or mucosol membranes. I'm not sure if chemo would "get to" my slower duplicating cancer cells, if there even are any present in my system (my lymph nodes were negative). I'm not sure if this is the reason there is still a chance of recurrence even after completing chemotherapy.

One study I found on Ki67 (I can share the link with you if you are interested), split a range of cancer patients into 3 groups - Group 1 had a Ki76 range of 0-20%; Group 2 had a Ki67 range of 20%-50%; and Group 3 had a Ki67 range of 50% and above. Group 3 all received chemotherapy. Within Group 1 & 2, a Ki67 of greater than 20% correlated with recurrence. Within both groups, only those that were Her2-positive received chemotherapy. Over the course of 10 years, less than 10% of those patients with a Ki67 of greater than 20% had experienced recurrence.

I've pulled the below from breastcancer.org regarding OncoType Scores:
Recurrence Score lower than 18: The cancer has a low risk of recurrence. The benefit of chemotherapy is likely to be small and will not outweigh the risks of side effects.
Recurrence Score of 18 up to and including 30: The cancer has an intermediate risk of recurrence. It's unclear whether the benefits of chemotherapy outweigh the risks of side effects.
Recurrence Score greater than or equal to 31: The cancer has a high risk of recurrence, and the benefits of chemotherapy are likely to be greater than the risks of side effects.

You and I both fall into the intermediate risk category, of which the benefits of chemotherapy are "unclear." My oncologist tried to convince me that the ranges of these categories have changed, though that is only susceptible to the TAILORx study, which concluded that cancer patients with an oncoscore of less than 10 are safe to forego chemotherapy; the intermediate range is still in the process of being tested.

From what doctors have told me, this is a personal choice - since nodes were negative, there isn't necessarily a "need" for chemo, but there is a (small) benefit regarding lowering a chance of recurrence. Where I stand personally, I'm not convinced chemotherapy is the way for me to go, and I have no intention of doing it. Perhaps if they told me doing chemo would inevitably "cure" me of never experiencing any cancer ever again, but they of course cannot say that. So I personally don't see the benefit in doing it when there is still a relatively similar chance of recurrence. I've seen and read cancer patients take the chemo, and cancer returns. I've seen and read cancer patients not take the chemo, and they've never dealt with another cancer. So to me it seems to be a crap shoot either way. If cancer is going to come back, its going to come back, seemingly regardless of what you do (in my mind - not to be pessimistic).

I hope any of this helps. I'm happy to share what my new oncologists recommends as well.

Best of luck,

Hailey

MTwoman

RubyRoo, do you by any chance have a nurse navigator at your treatment center or hospital? They can be really helpful, especially in times of stress, and may be able to help you organize your thoughts/concerns/questions to be able to make this tough decision. They can be extremely helpful to have. Just a thought, my heart goes out to you!

Rubyroo

Hailey - I feel for you! This is such a hard decision to make. I am considering switching oncologists as well. She told me my score, then asked what my 'gut feeling' was. I have truly gotten the sense that this will ultimately come down to a personal preference on my part, since as you mention there is no guarantee. When pushed, my oncologist is still recommending chemotherapy, but she has not been adamant about this and has suggested that I will have the final say as there is no real consensus. Please share what your new onc says with me! Feel free to PM me anytime. It feels like we're in the same boat (albeit not a very nice one...)

MTwoman - thank you for your warm thoughts. I'm going to go ask to speak to a counsellor or nurse navigator - I am sure they have told me about them but things have been so overwhelming since my initial diagnosis that I can't keep anyone straight. Before now, my path with surgery and testing has been relatively clear, but now that I am in a real decision-making conundrum I'll look into more resources for support and guidance.

Feeling grateful for this forum!

kira1234

Rubyroo I will add my current oncologist has repeatedly told me he wouldn't recommend chemo from day one. I had a different oncologist who was unwilling to work with my breast surgeon. She also said when I told her how my eyesight was going in and out with a horrible headache after my first treatment "what do you think you have a brain tumor? "

HaileysHooters

Ruby - I will be happy to share! I'm actually meeting two new oncologists - a new one at my current hospital and I'm seeking a totally new opinion from another NCI designated hospital in my area. I will let you know if there are any discrepancies in their further recommendations.

May I ask, what your "gut feeling" is/was? My gut feeling is that I do not need chemo. It always has been. I was very back and forth on my surgery decision (between lumpectomy and mastectomy), but I've been consistently adamant on not doing or needing chemo. I may have three doctors at the end of the day telling me this is their recommendation, but I don't foresee changing my mind on this. I became very emotional when the first oncologist told me he recommended chemo, and my response was no, I just can't do that. And he said, if I don't want to do it then I don't have to do it. So why would I do something I don't have to do?

Have you revisited speaking with your surgeon or radiation oncologist about how other or additional treatments can benefit your risks without doing chemotherapy? This is something I plan on discussing with all of my doctors too. May I also ask if you have Lymphvascular invasion present or absent on your pathology report?

MTwoman

RubyRoo, both a counselor and nurse navigator can be helpful when you're overwhelmed, albeit typically in different ways. I am a counselor, but worked with my own counselor during my diagnosis. She helped support me with emotionally dealing with the diagnosis, stress, anxiety and decision making.

My nurse navigator was an MSRN (ms in oncology nursing). She had been a practicing oncology nurse for many years before she began being a navigator. She had a great wealth of information, knew the NCCN standards, local experts (as well as national) and could help me compile the information that pertained to me and prioritize what was most important to me. She kept up on recent research and could help point me to anything that I needed to augment what I was given by my team. She helped me feel confident in my decisions - but never, ever told me what to do. She connected me with second opinions, and reviewed their recommendations (if asked).

If you feel like either of these things (or both) would be useful, I would encourage you to ask about their availability.

warm ((hugs))

BarredOwl

Hi Rubyroo:

If you have not already done so, be certain to obtain a copy of your original Oncotype report for your review and records, so you can confirm all information provided to you based on the report content against the content of the actual report with your name on it. (Do not rely on a verbal or copied/summary information in a patient portal.)

From other posts, it sounds like your current treatment center has a Tumor Board (a multidisciplinary panel). If they did not have the Recurrence Score at the time they considered your case, do request they consider this new information and provide an updated opinion.

In parallel, arranging for a second opinion at an independent institution in more specialized circumstances such as yours seems advisable, if there is time before recommended treatments should be initiated per your medical oncologist.

You may not be similarly situated to other non-pregnant, node-negative patients with similar recurrence scores in a number of ways or in timing of treatments. The medical advice you receive is case-specific, in light of your specific clinical (e.g., age, pregnancy, co-morbidities) and pathologic factors. For example, in another post, you noted: "I am 19 weeks pregnant so I am told I can't get rads or hormone therapies until after I deliver." (In this thread, you note you are now 22 weeks (5.5 months along)). In contrast, others in this thread who are not pregnant who may decline chemo can immediately begin radiation and anti-hormonal therapy (either concurrent with or shortly after radiation).

Keep in mind that the recurrence risk information from the Oncotype report (for invasive disease) assumes receipt of endocrine therapy. This is because the recurrence risk information in the reports is based on clinical studies in which all patients were assigned to 5-years Tamoxifen (either Tamoxifen alone or Tamoxifen plus chemo).

=====> You may wish to inquire with your Medical Oncologist if the recommendation for chemotherapy in your case may be based in part on their recommended delay initiating anti-hormonal therapy until after your delivery. (Also ask for a list of the various considerations they feel support the recommendation for added chemotherapy in your case and write them down.)

Are you node-negative based on the results of a sentinel node biopsy? If so, then you would have received a node-negative Oncotype report. If not, please advise.

The below applies only if a person is known to be node-negative ("N0") as determined by sentinel node biopsy.

ESTIMATED RISK OF DISTANT (METASTATIC) RECURRENCE:

Re your comment: "Just got my oncotype score of 25, with an overall recurrence risk of 11%."

That 11% does not sound right. Please confirm this understanding with your Medical Oncologist ("MO").

The FIRST GRAPH in the node-negative ("N0") Oncotype report for invasive breast cancer is the one that is typically used to estimate 10-year Risk of Distant Recurrence After 5 years Tamoxifen (with "Tam Alone") according to Recurrence Score. Please confirm it with your MO.

There may be a variety of reasons for this, an obvious one being that the Tam Alone group in the study featured in the FIRST GRAPH (668 patients with Tam Alone) was much larger (nearly three times) than the Tam Alone group in the study featured in the second graph (227 patients with Tam Alone). Accordingly, the 10-year risk information from the first graph is the one used in practice to estimate 10-year distant recurrence risk with Tam Alone (no chemotherapy).

=====> The best estimate of the 10-year Risk with "Tam Alone" associated with your Recurrence Score of 25 is printed to the left of the FIRST GRAPH in your report.

Please check your report for the 10-Year Risk % with "Tam Alone" next to the first graph. (I think you will find that the 10-year risk with Tam Alone in your report is larger than 11% and is probably around 16%.)

Eyeballing the first graph from the sample node-negative report available on-line suggests that the 10-year risk with Tam Alone for a Recurrence Score of 25 would be around 16%. (Find your Recurrence Score on the horizontal X-axis, move straight up to the solid bold curve, then move left to read off the value for 10-Year Distant Recurrence Risk with Tam Alone on the vertical Y-axis.)

FIRST GRAPH from Node-negative ("N0") sample report on-line here: http://www.oncotypeiq.com/en-US/breast-cancer/healthcare-professionals/oncotype-dx-breast-recurrence-score/interpreting-the-results

For more information about the study results featured in the first graph of the node-negative report:

The recurrence risk information provided in the first graph of the node-negative (N0) Oncotype report is based on the results of a clinical trial in a group of patients who were all assigned to receive 5-years of tamoxifen, and their observed rates of distant recurrence over 10 ten years according to their Recurrence Scores. The first graph in the node-negative report is based on Figure 4 of Paik (2004):

>> Paik (2004): "A Multigene Assay to Predict Recurrence of Tamoxifen-Treated, Node-Negative Breast Cancer"

>> Main Page: http://www.nejm.org/doi/full/10.1056/NEJMoa041588#t=article

>> Free PDF: http://www.nejm.org/doi/pdf/10.1056/NEJMoa041588

Potential Benefit of Added Chemotherapy:

The node-negative report includes a second graph that addresses potential benefit of added chemotherapy as compared with Tam Alone. Here is the second graph from the sample node-negative report on-line:

This data is taken from a different clinical trial that assessed 10-year risk of distant recurrence according to Recurrence Score in two groups of patients who received either: (a) Tamoxifen alone (solid dark line); or (b) Tamoxifen plus chemotherapy (dark dotted line):

>> Paik (2006): "Gene Expression and Benefit of Chemotherapy in Women With Node-Negative, Estrogen Receptor–Positive Breast Cancer"

>> Main Page: http://ascopubs.org/doi/full/10.1200/jco.2005.04.7985

>> (Free PDF available under "PDF" tab)

In the second graph, the difference between the Y-axis values on these curves for a particular Recurrence Score provides some insight into the potential risk reduction benefit of added chemotherapy for those in the standard "High risk" range (RS = 31 to 100).

You can see that as Recurrence Score ("RS") decreases, the curves move closer and closer (apparent potential benefit of added chemo decreases) and the confidence intervals (lighter lines surrounding each curve) begin to overlap more and more (more uncertainty in the benefit as RS decreases). However, as noted in Paik (2006), these results do not exclude a clinically important benefit from chemotherapy treatment in the standard intermediate range (RS 18 to 30). In addition, there might be certain subsets of patients who may benefit more than the group as a whole. Thus, the on-going TAILORx trial in node-negative patients is seeking to determine whether those with Recurrence Scores of 11 to 25 or some subset of these patients may derive benefit from added chemotherapy (or not).

Second Opinion:

Many look for an NCI-designated Cancer Center for a second opinion (confirm in-network):

https://www.cancer.gov/research/nci-role/cancer-centers/find

This may include a review of actual pathology slides (sent overnight) and all related reports and ER, PR and HER2 test results by a Pathologist and consultations with a Medical Oncologist and Radiation Oncologist.

You can still elect to receive treatment at your current center if you prefer.

Once you have made appointments and sent materials for a second opinion, be sure to call ahead to confirm that all records and materials have been received by the second institution and forwarded to the proper doctors. Also take copies of critical documents with you to the appointment, such as copies of all pathology reports from all biopsies and surgeries (any addenda or supplements thereto), including ER, PR and HER2 test results, and a copy of your Oncotype report.

I am a layperson with no medical training, so please confirm all information above with your Medical Oncologist to ensure receipt of accurate, current, case-specific expert professional medical advice.

My best wishes,

BarredOwl

BarredOwl

Hi HaileysHooters:

Please be cautious about relying on a single reference regarding the implications of Ki-67. The literature is large and not entirely consistent and there may be technical issues in determining the percent of cells that stain positive for Ki-67 protein.

If outside materials or information (publications or posts on this board) influence your thinking about treatment options, be sure to confirm accurate understanding and applicability to your particular case with your Medical Oncologist.

Ki-67 is a protein that is a marker of cell proliferation or cell growth (a higher percentage suggests more dividing tumor cells).

In general, rapidly dividing cells may be more responsive to chemotherapy. The 2015 St. Gallen panel commented:

>> "There can be little doubt that Ki-67 scores carry robust prognostic information [24], and that high values predict the benefit of addition of cytotoxic chemotherapy [25], but definition of a single useful cut point has proved elusive both because Ki-67 displays a continuous distribution [26], and as a result of analytic and preanalytic barriers to standardized assessment [27]."

In other words, despite the results of studies which report some prognostic and predictive value, there are technical issues with determination of Ki-67 percentages by standard IHC methods, including interobserver variability (different results when different people perform the test on the same sample) and lack of reproducibility across laboratories, as explained in detail here:

>> Polley (2013): "An International Ki67 Reproducibility Study"

>> http://jnci.oxfordjournals.org/content/105/24/1897.full

>> (Free PDF available via link)

Also, different studies use different values as cut points or cut-offs between what is considered "low" or "high" Ki-67.

All of this makes it difficult to rely on the results of clinical studies in which Ki-67 was determined in other labs and to interpret the clinical significance of a Ki-67 test result based on such studies. Accordingly, some institutions no longer perform Ki-67 testing (at this time), and clinical consensus guidelines (e.g., from ASCO) do not generally support the broad use of Ki-67 protein (determined by standard IHC) to guide adjuvant chemotherapy decisions.

Please ask your medical oncologist for his views on the significance of your Ki-67 result and how it should be weighed in connection with your treatment decisions.

Best,

BarredOwl

Rubyroo

Hailey - I had no evidence of LVI and all 5 sentinel nodes that I had removed were clear. My gut feeling about this is all ambiguous. I am not typically a person who makes these kinds of decisions based on emotional motivation (unfortunately!!) hence I have been poring over the data - both external and my own unique case.

MTWoman - Thanks again, I have reached out to the social worker in the oncology department to be connected to possible resources and support.

BarredOwl - I have been reading a LOT of your previous posts and am grateful for your detailed response to my own question! I just actually received my full Oncotype report print out today. I was sent home yesterday with only a summary page.

You're right, the first graph on the report has my score as 25, with a recurrence risk of 16% with Tamoxifen for 5 years alone. My confusion stems from an additional page that was provided to me, which provided a combined risk that considered my Oncotype score, age, tumour size, node status and hormone receptors (if I recall all this correctly - I don't currently have that page with me here at work so I can't confirm). Essentially my understanding is this additional summary page calculates my overall risks combining the Oncotype score and the risk that can be observed through my clinical pathology report. Based on this, (my age being 31, my tumour size being 1 cm - though this is based on the largest tumour, as I had a total of 4 tumours removed, being ER/PR+ and node negative) resulted in a score of 11%.

Thus, my confusion about how to know whether to base my decision on my risk of recurrence calculated purely from the Oncotype genomic assay test (16%) or to take the other factors into account (11%). If my risk was truly 16%, this would perhaps sway me more into the chemo category.

Interestingly, the first graph (Prognosis: 10-Year Risk of Distant Recurrence with Tamo) has me positioned at my recurrence score of 25 and a 10-Yr risk of 16%, while the second graph (Prediction of Chemo Benefit after 5 Years of Tam) has my recurrence score result still at 25 but with a 10-Yr risk of 11% with Tam alone and at 7% with chemo+Tam). So my question remains - am I currently at 16% or 11%??

I understand the additional complication regarding delaying rads and hormone therapy due to my pregnancy. When I asked my MO about this, she said that the rads take care of local recurrence and don't play as much of a factor when thinking about distant recurrence. In terms of Tamoxifen, she said the Oncotype study considered hormone therapy given at various stages of treatment, and didn't seem to think that the delay in my own situation would make much of an impact on my scores. So I am still hesitant to put my body through chemo, rads and hormone therapy while pregnant and then while adjusting to life with a newborn.

The tumour board will assess my case with this new information, and I have contacted my family doctor to inquire about a second opinion from another oncologist. I am hoping to get other options/possible pathways if possible as I do feel quite a bit of pressure right now (my MO kept mentioning she could start me on chemo as early as next Thursday) and I am not feeling confident about either choice.

Since the more research and reading I do, the more the answer seems to be quite muddy (the word 'crapshoot' comes to mind often), it seems more apparent that there is no real good answer. I am leaning towards skipping chemo so as to not have to worry about other longterm effects, secondary cancers, and losing my ability to really enjoy this special time in my life...but again, I'm still very much on the fence and not sure if there will be a magic piece of information that will help me convinced about either decision.

All insights and other experiences are quite helpful to me, as I think the anecdotal evidence under these circumstances are as equally varied and compelling as the existing research!

Rubyroo

Additional thought about Ki-67 - mine was not calculated on my pathology report (not sure why??), but my mitotic score was 1/3, if this means anything....

BarredOwl

Rubyroo:

(1) Re your remark: Interestingly, the first graph (Prognosis: 10-Year Risk of Distant Recurrence with Tamo) has me positioned at my recurrence score of 25 and a 10-Yr risk of 16%, while the second graph (Prediction of Chemo Benefit after 5 Years of Tam) has my recurrence score result still at 25 but with a 10-Yr risk of 11% with Tam alone and at 7% with chemo+Tam). So my question remains - am I currently at 16% or 11%??

The first graph is used to estimate risk with Tam Alone. This data is from a trial in which all 668 patients received Tam Alone.

The second graph is used to estimate the potential benefit of added chemotherapy. This data is from patients enrolled in a different trial in which "A total of 651 patients were assessable (227 randomly assigned to tamoxifen and 424 randomly assigned to tamoxifen plus chemotherapy)." So only 227 patients received Tam Alone in this trial.

As between the two graphs in the node-negative Oncotype report, I believe that the 16% estimate from the first graph is seen as the more reliable estimate of your 10-year distant recurrence risk with Tam Alone. Please confirm it with your MO.

(2) Re your remark: "My confusion stems from an additional page that was provided to me, which provided a combined risk that considered my Oncotype score, age, tumour size, node status and hormone receptors."

I am not familiar with an additional page and have no information about it. Ask your MO about it, for example:

-- Is it from the test provider or your treatment center? Is it based on validated methods?

-- Is the risk estimate in the Additional Page the same type of estimate as that in the First graph of my Oncotype report (i.e., 10-year risk; distant recurrence risk; with 5-years Tam Alone) or some other type of risk estimate? Please explain.

-- Point out the 16% estimate in the First graph and ask your MO why the estimates differ and which estimate(s) you should rely on for your decision-making.

--If you seek a second opinion, ask them to review these materials and questions with you.

I am glad to hear the Tumor Board is reconsidering your case in light of the additional information.

BarredOwl

NisaVilla

Rubyroo - I am sorry to hear about your dilemma. I have not read your previous posts so I might be missing a lot of information as I wonder about your case. Is the medical debate only about yes-chemo versus no-chemo? Has there been a discussion about chemo after the birth of the baby? Although waiting to administer chemo would be somewhat of an unordodox approach, you are only looking at 3-4 more months of pregnancy and there is no reason why chemo would not work then, thus giving baby a chance at escaping from chemicals and you getting the benefits of chemo. I don't know what science says about chemo and pregnancy but if a glass of wine is recommended against, I can only imagine about Taxotere. Also, have you had a PET? If you are fully NED elsewhere, why not waiting? As you probably know, the Oncotype score was based on < 600 women who had a single tumors, not you (or me) multifocal women. Sending you a virtual hug, Nisa 🌷

NisaVilla

Rubyroo - I am sorry to hear about your dilemma. I have not read your previous posts so I might be missing a lot of information as I wonder about your case. Is the medical debate only about yes-chemo versus no-chemo? Has there been a discussion about chemo after the birth of the baby? Although waiting to administer chemo would be somewhat of an unordodox approach, you are only looking at 3-4 more months of pregnancy and there is no reason why chemo would not work then, thus giving baby a chance at escaping from chemicals and you getting the benefits of chemo. I don't know what science says about chemo and pregnancy but if a glass of wine is recommended against, I can only imagine about Taxotere. Also, have you had a PET? If you are fully NED elsewhere, why not waiting? As you probably know, the Oncotype score was based on < 600 women who had a single tumors, not you (or me) multifocal women. Sending you a virtual hug, Nisa 🌷

Rubyroo

Nisa - Yes, the question is solely around chemotherapy for me. I will definitely proceed with radiation and hormone therapy after delivery. My onc did not like the idea of delay re: chemo as she says chemo is optimal within 12 weeks of surgery. My lumpectomy was done in May, so I am now wondering about delaying chemo until perhaps July so that the babe is exposed to less. I'll be asking about all this in my next appointment!

BarredOwl - So I've figured it out! I asked for a full copy of my report yesterday and finally mulled it over. The score of 11% I received (and what was mostly discussed during my appointment) was done through the RSPC (Recurrence Score - Pathology - Clinical) which appears to be an additional tool that OncotypeDX offers. It is not a part of my 'official' report. There is a PDF about it on the Oncotype site - I found it by googling but I can't seem to post a reasonable link to it here, sorry.

I also found a few short papers discussing the use of the tool, including this one: http://meetinglibrary.asco.org/record/96857/poster

The conclusion seems to be that the RSPC tool does not alter the assessed benefit of chemo for Oncotype score patients, but it goes regroup about 30% of intermediate scores as low-risk when taking into account clinical factors along with the pathological findings of the test itself. I guess this is why my risk became 11% when the RSPC tool was used. It can be used to 'refine' the understanding of the recurrence risk for intermediate scores. I think this means that it does not change the score I received based on the purely biological behavour of my tumour that my Oncotype score represents, but helps to interpret it in light of the other factors involved.

I also assume that my MO wanted me to consider the RSPC's 11% score over the 16%, as she initially only gave me the summary page containing the Oncotype score of 25 and my RSPC score of 11%. So I did not even know about the 16% at my initial appointment.

Still unsure which score to place a greater weight on...has anyone else been given their RSPC score?

Anna-33

Hello... I was also diagnosed at age 31 this year...and pregnant...

I found my lump in November, but got wrong diagnosis at first... Then mastectomy march this year.... followed by C-section pregnancy week 33. Six week later I started chemo.

BarredOwl

Hi rubyroo:

For those with intermediate scores, clinical judgment and medical advice may incorporate additional considerations, such as clinical (e.g., age) and pathologic factors (e.g., grade, etcetera). Oncologists do this routinely (without the use of the RSPC tool).

For some reason, today I cannot locate any information on the RSPC tool on the current Genomic Health website, although it sounds like you found it. I do not know how medical oncologists currently view this tool.

In the link you provided to the 2014 meeting poster (note that posters are not peer-reviewed publications), you can see that the poster describes the effect on risk stratification by the tool (how it modified recurrence risk estimates either upward or downward) in a small group of patients. But that is observational in nature and is quite a different question from clinical validation and whether or not the revised estimates provided by the tool have or have not been demonstrated to be more reliable than the original estimates in predicting recurrence risk (as determined by measuring distant recurrences in patients according to RSPC estimates).

The RSPC tool was briefly discussed in a 2016 article about a different test:

http://jnci.oxfordjournals.org/content/108/11/djw149.full

"Recently, GHI [Genomic Health, the commercial test provider] began providing an online Recurrence Score Pathology-Clinical (RSPC) calculator for use in node-negative patients that combines RS with clinicopathological variables including age, tumor size, grade, and planned adjuvant hormonal therapy. Tang et al. reported a greater separation of low- and high-risk patients and reduced number of patients in the intermediate-risk group when classified by RSPC (17). Nevertheless, GHI [Genomic Health, the commercial test provider] recommends that RSPC should only be used as an "educational tool" together with RS result to enhance the understanding of the score in the assessment of DR risk (18). It should be noted that while integration of clinicopathological factors with molecular features greatly enhances the prognostic power of risk assessments, this has not been shown to increase predictive information regarding chemotherapy benefit (17)."

You may wish to inquire if the above is consistent with the current information available to physicians on-line regarding the tool, and what caveats or limitations regarding validation are provided in the materials available to physicians.

The scope and quality of validation (which speaks to reliability) of any such supplemental on-line tools would be a point of discussion with an expert medical oncologist or in a possible second opinion.

BarredOwl

HaileysHooters

Hi BarredOwl,

Thank you for the detailed response. I haven't based any treatment decisions solely on one score, however, when my medical oncologist told me my "intermediate Ki-67 score" played a piece in his reasoning for recommending chemo, I felt a personal need to learn more information about this portion of my pathology report.

RubyRoo,

I met with a new doctor today, and she is bringing my case in front of her staff of medical oncologists and radiation oncologists. She said they meet weekly to discuss each patient's course of treatment, which I personally found to be extremely refreshing, and appreciate that they take into account how each portion of the treatment plan affects the others. She said initially looking into specific aspects of the pathology report - particularly the hormone status (HR+ PR+), lymph node involvement (negative), Ki-67 score (~15%), and oncotype score (20) - there is no "need" for chemotherapy. She stressed that this is a personal decision. I have not yet received my copy of my oncotype test, but I see you have your own. Is there a way for you to see the estimated of recurrence with just tamoxifen (i.e. 16%) and compare it to the estimated risk of recurrence with tamoxifen & chemo (i.e. 11%)? Perhaps you can find that number (i.e. 5%) and write a list of pro's and con's - it always seems to help to see things visually in front of you.

I'm not sure if this being a "personal choice" makes it any easier or anymore difficult for you. I've had a few other doctors ask me, how big of a gambler are you? I'm not sure if that helps or not.

I've now been told by two doctors that tamoxifen is more beneficial than chemo because of the hormone status. The new doctor also told me results from the intermediate group should be released in December of this year (TailorX study), which will have more information on if chemo is beneficial to those who fall into this gray area.

lrwells50

That page of my report had a blank for the percentage with 5 years of tamoxifen plus chemo, and my doctor wrote 6%>.