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Single Hormone Receptor Positive -> ER+/PR-/HER2-

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  • murfy
    murfy Member Posts: 254
    edited June 2018
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    My Oncotype score was an off the chart 52, the highest my MO has seen in an ER+, node-neg patient. Researching the literature, this score is up there with triple-negative or Her2+. But my ER was 100%. My tumor scores also indicated it was aggressive, so I opted for CT chemo. In retrospect, I wish I had had the stronger AC+T and treated this more like triple-neg, because I'm afraid I'm going to be chemo- and hormone-resistant because of my score. I guess time will tell.

    In the meantime, I'm on Aromasin and experiencing minimal SEs, with the exception of more hair on my face and actually having a libido again. Turns out Aromasin has weak androgen effects!

  • Hope99
    Hope99 Member Posts: 120
    edited June 2018
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    Hi lmurphy,

    what do you mean by your tumour scores also indicated it was aggressive? did your doctor told you the 100% ER was good or bad to your prognosis?

  • meow13
    meow13 Member Posts: 1,363
    edited June 2018
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    I think she means grade 3, nottingham score was high for all 3 categories. I received a score of 34 it was because the combination of high er and no pr can be alarming. I think mine was lower because my grade was 1 & 2 on the 2 tumors. My pathology didn't include ki-67, I am not aware of whether Oncodx does a ki-67 score if they did they didn't include that information in the report. Hope, you should read the link explaining why the combination of high er and no pr is dangerous. I declined chemo and I am 7 years out but I also had the protection of exemestane and anastrozole.

  • murfy
    murfy Member Posts: 254
    edited June 2018
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    To Hope99, Meow is right on. In addition, I had multi-centric lesions (ie, a DCIS located 3 cm from IDC and a second DCIS near the IDC). The IDC and DCIS were surrounded by large benign papillomas (an indication of inflammation). All together, I had a very invasive tumor and am lucky and hopeful it was caught early.

    To your second point, lots of tumor ER is usually a good sign because it should then be treatable with anti-estrogens. Even with low/no PR, the presence of ER + low-ish tumor grade and Oncotype score should mean pretty good treatment response, as it suggests the ER is primarily driving the tumor growth.

    Her2 is a growth factor common in ER+/PR- tumors and is primarily responsible for the growth of those tumors. Those tumors are also treatable using Herceptin followed by years of anti-estrogens.

    The story is still out on those of us with PR- tumors, no Her2, but high tumor grade and Oncotype score. Some data suggests another yet-to-be-identified growth factor is driving the growth of these tumors. Data also suggests that these tumors may be more resistant to anti-estrogen treatment and chemo.

    But, as Murphy was an optimist, I also like to think that these fast-proliferating tumors (high Ki67) are more susceptible to chemo. It's a wait-and-see situation at this point!

    Laura


  • wintersocks
    wintersocks Member Posts: 434
    edited June 2018
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    100 ER +/ PR -/HER 2 -

    does this mean a high risk of recurrence or is it good because er + responds well to AI's - I'm confused whether this a good dx or a really bad dx?!


  • ruthbru
    ruthbru Member Posts: 46,930
    edited June 2018
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    100% ER is very good because that means it's estrogen driven and that's what AIs suppress. Being Her2 negative is very good because Her2 makes the cancer very aggressive. They don't really know how being PR negative fits into an equation.

  • meow13
    meow13 Member Posts: 1,363
    edited June 2018
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    I am going to post things so it will first explain why er+ and pr- is not a good combination and the good news about taking AI drugs in that case.

    http://scienceblog.cancerresearchuk.org/2015/07/08...

    Tells why er + pr- can be a dangerous combination along with fast dividing cells may explaining the high oncodx scores.

    https://thetruthaboutcancer.com/progesterone-and-b...


    And now

    http://www.cancernetwork.com/articles/anastrozole-...

    Benefits with AI drugs for this case.

    Hopefully, more people will see what this thread is about.



  • murfy
    murfy Member Posts: 254
    edited June 2018
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    To Wintersocks, since you have 100% ER, you can take letrozole, which should help prevent recurrence. If no ER, you wouldn't have that option. So having lots of ER is a very good thing!

  • murfy
    murfy Member Posts: 254
    edited June 2018
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    To Meow, which AI did you take and for how long?

    Laura


  • meow13
    meow13 Member Posts: 1,363
    edited June 2018
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    I took anastrozole and exemestane lasted 4 years. There is a concern about high er and nonexistence pr receptors not sure people are not looking at the studies. But many of us are getting high oncodx scores because of it. The absence of progesterone receptors is a concern and suggests aggressive cancers however there is good news. Since postmenopausal woman have been taking AI drugs the risks are reduced. My mitotic score was 1 on both tumors suggesting slow growth but oncodx picked up on my high er and negative pr status giving me a score of 34.


    I am ok, never did do chemo, 7 years out. If I get other 10 years NED I will be totally confinced I made the right choice. Good luck to everyone, make the decision you feel comfortable with. Some want chemo others don't. No one is wrong.

  • Hope99
    Hope99 Member Posts: 120
    edited July 2018
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    lmurphy, why your onco is 52 ? I think it's high with no lymph node involve and 55% ki67. my consultant told me no need for onco test because I already did chemo + one node involved. my ki67 is high and grade is 3 ( high). is that mean my onco (if I do it) wil be more than 52 ?

  • PatsyKB
    PatsyKB Member Posts: 211
    edited July 2018
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    Thanks, Meow13, for posting those links. With my 99%ER+, 0%PR- and HR2- I, like you, am solidly "single receptor" - we're "special" but not in a good way. Our risk of recurrence is higher, as you say, than for folks who are PR+.

    My MO is very confident, though, that the aromatase inhibitors (in my case, the Letrozole) are very effective in stopping the production of estrogen. Hoping that will forestall any recurrence. We''ll be watching carefully.

    Nearly 3 weeks on Letrozole and NO SIDE EFFECTS.


  • meow13
    meow13 Member Posts: 1,363
    edited July 2018
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    Patsy, I think so too, Your tumor is grade 1, probably better to have hormone therapy over a period of time. Fast growing cancers are the ones chemo works the best on.

  • Fixyourdog
    Fixyourdog Member Posts: 4
    edited July 2018
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    Thank you, Meow13 for the excellent links to info for us ER+PR- ladies. I would add one more about clinical trials in the UK and Australia following up on Dr. Carroll's work. One adds natural progesterone before surgery. Another adds it with an AI after.

    http://scienceblog.cancerresearchuk.org/2017/05/05...

    Although I am Grade 1 (tubule 3; nuclear 1; mitotic 1), my Oncotype score is 26 (likely due to PR-), so my MO recommended TC chemo to reduce my recurrence risk by 5%. I don't know my Ki-67 no. because my treatment center doesn't find it valuable or consistent across labs. I wavered on the chemo, and my MO said he wouldn't worry about me too much if I decided not to take it. But in for a penny, in for a pound! No side effects yet early on day 3 after 1st chemo.

    I'll finish chemo Aug 31, start radiation likely in Oct. Plenty of time to talk to my MO about progesterone. Interesting times.

    So glad I found you all!

  • murfy
    murfy Member Posts: 254
    edited July 2018
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    Hi Hope99: I'm not sure why my OncotypeDX score was so high. Could be my ERs don't work right or some growth factor was driving my cancer. One can have a high grade cancer and low/intermediate DX score. The Oncotype test is used to determine if a ER+ patient with no node involvement would be a good candidate for chemo. That's probably why your doc hasn't recommended one.

    Laura

  • meow13
    meow13 Member Posts: 1,363
    edited July 2018
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    Hope99, have you had chemo or not? After that you may be prescribed hormone therapy.

  • TomMorrow
    TomMorrow Member Posts: 28
    edited July 2018
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    We finally got my wife's oncotype score back today and, unfortunately, seem to be in a position that a lot of you have struggled with. My wife is 49 so, based on TailorX, we needed a score of 15 or less to make the chemo decision easier. But the score was 23, with a 15% distant recurrence risk. If I understand correctly, if you are over 50, a score of 25 or less means you can safely skip chemo. She is closer to being over 50 and our MO pointed this out, when giving us information to use in the decision for chemo or not.

    The oncotype report doesn't show what the percentage decrease is with chemo. The MO said it looks to be a reduction of about 3%. Based on some great advice from someone on the forum, I called Genomic Health and talked to someone about my wife's numbers. She explained that the graph is what we should focus on and, based on the lines depicted, there wasn't a clinical benefit for doing chemo - although no words on the report say this. I'm not really sure I understand how to interpret the graph, but we are meeting with the MO on Friday in person to discuss (today's news was by phone). On the one hand, if there is no benefit from chemo, then maybe that's good news to make the chemo v. no chemo decision easier. But then it doesn't seem to reduce the 15% recurrence risk. After seeing an actual percentage on paper, I think it scared my wife some, especially if there is no ability to reduce the 15% recurrence percentage if chemo is not beneficial.

    She scored a 4.9/10 on PR, so negative for onco. Her surgical path amount was 5%, so it's not surprising that it was negative on the onco report. What I did find confusing was the ER Score. On her core biopsy, she scored 97% (strong intensity). On the surgical pathology, she scored 90% (moderate intensity) [I don't know if the intensity differences mean anything]. On onco, she scored 7.4/12.5. Given that positive starts at 6.5, this seems to be a low ER amount on their scale. The report says that the recurrence score takes into account "the magnitude of tamoxifen benefit indicated by the ER score..." and further notes that "the magnitude of tamoxifen benefit increases as the ER Score increases from 6.5 to 12.5." Thus, if I understand this correctly, because my wife's ER score was 7.4 and not a higher number, this had a direct impact to her score of 23. I thought having an ER % based on pathology of 90% or higher would mean she would benefit from tamoxifen better than the onco score shows. I know that studies show that low/no PR can impact how beneficial tamoxifen is, but it doesn't appear that the onco score takes this into account in determining the ER Score. And what if you took an AI, assuming tests that show it may work better than tamoxifen are correct? This would suggest the ER Score on onco should be higher, causing the recurrence score to be lower? So is the 15% recurrence risk the right percentage in real life??

    Did anyone else have a high ER percentage from biopsy/surgical pathology, but a much lower ER score on onco? If so, how did your MO interpret this? We are going for a second opinion at the Moffitt Cancer Center, hopefully next week, to get their view on the low PR; both for chemo recommendation but also thinking about recurrence risk and whether she should be considering an AI instead of Tamoxifen when we finally get to that stage. Surgery is behind us, but we still have, at a minimum, radiation treatments (4-6 weeks). And now with the potential for chemo, it seems we are so far away...

  • TomMorrow
    TomMorrow Member Posts: 28
    edited July 2018
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    I forgot to point out that if we did chemo, the MO suggested that it wouldn't be the full blown chemo treatment (my words). I've done absolutely no research on chemo because I was certain she wouldn't need it. But I'll have to start looking into the various chemo regimes and see if I can find the one that he was thinking about to be ready for our conversation on Friday. I just remember that it wouldn't use the "chemical" that produced most of the side effects and would be administered every three weeks - maybe four doses, I can't recall that part of the conversation.

  • meow13
    meow13 Member Posts: 1,363
    edited July 2018
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    TomMorrow, I will give you my numbers 1 ILC grade 2, 1 IDC grade 1 each were 1cm. My er was 95% but pr was negative really negative less than 1%, her2 negative. My mitotic rates on each were 1, my oncodx was 34. I was 53 years old post menopausal. I didn't do any chemo I took anastrozole then exemestane. It has been 7 years cancer free. I had no positive nodes.

    I am very glad I didn't do chemo.

  • TomMorrow
    TomMorrow Member Posts: 28
    edited July 2018
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    I'm glad to hear you are doing well meow13.

    I know my wife is going to agonize over the decision. In her mind, if you say you can decrease her chances for avoiding the worst possible result by 3%, there will have to be a very convincing argument that not doing it makes the most sense (and the chemo side effects may be that argument). I am hoping the benefit of two MO's at two different hospitals will give us the information we need to feel like we are making the very best decision.

    Like a lot of you with low/no PR scores, her tumor characteristics otherwise appear to be nonaggressive (grade 1, mitotic score of 1, 6mm, no lymph node involvement, 12% ki67). Then the stupid PR comes along and no one seems to know what it means.

  • nat_blue
    nat_blue Member Posts: 12
    edited July 2018
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    I think I read in the New England Journal of Medicine that the age difference in the TailorX study may be related to the fact that chemo puts women into menopause and that perhaps medically inducing menopause may create the same effect for younger women as the chemotherapy. Your medical oncologist should be able to tell you more.

  • meow13
    meow13 Member Posts: 1,363
    edited July 2018
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    Also check out this there is another one dated 2014, anastrozole use for er+ pr- is much more effective than tamoxifen halving the risk of recurrence in pr negative cases. Oncodx only considers tamoxifen.

    http://www.cancernetwork.com/articles/anastrozole-...



  • Hope99
    Hope99 Member Posts: 120
    edited July 2018
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    Hi Laura, I saw a lot if patient here with er+ pr- had no aggressive cancer cells, mostly I see the grade 1 and 2 and low ki67 growth rate and no node involved. I think the er+ pr- is better than high er+ pr+ like me because it's aggressive one with high grade and ki67 with node involvement. I didn't do onco test because the cancer reached to one lymph nodes, it's 3mm but I think 3 mm looks like 3 cm , no different to increase my prognosis rate. I'm still in high risk with 20-30% .

    Hi meow13, yes I did 6 cycles of chemo, mastectomy then I'm now on radio and hormone therapy. I started tamoxifen before 4 days, 2 tablets/day with 3.75 Lupron injection, one a month for 5 years. he will switch tamoxifen by aromasen ( I think this is the name), after 3 months, I'm 49 years.

  • meow13
    meow13 Member Posts: 1,363
    edited July 2018
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    Hope99 you should be fine. Tamoxifen should be good for you since you are both strongly er and pr positive.

  • ktmv
    ktmv Member Posts: 1
    edited July 2018
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    From all I've read, regarding the TAILORx study results (2015?) and the Oncotype DX testing, the conclusion seems to be that there is ±1% difference in probability of BC recurrence, between hormone therapy only or hormone + Chemo.

    This site won't allow me to paste URL link ("You are not allowed to post links at this time") but you can google-search ASCO (American Society of Clinical Oncology) -- news releases, regarding chemotherapy - (included in recent ASCO June 2018 annual meeting)


  • moth
    moth Member Posts: 3,293
    edited July 2018
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    ktmv - that really depends on the age of the patient, menopausal status & also the grade of the tumor. You can run the numbers on this calculator http://www.predict.nhs.uk/predict_v2.1/tool


  • meow13
    meow13 Member Posts: 1,363
    edited July 2018
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    moth, I noticed that calculator didn't include pr status. My outcome looks good.

  • moth
    moth Member Posts: 3,293
    edited July 2018
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  • meow13
    meow13 Member Posts: 1,363
    edited July 2018
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    That one looks good too. I sure would like to know how my oncodx number was determined.

  • TomMorrow
    TomMorrow Member Posts: 28
    edited July 2018
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    My wife and I met with the MO today. We had a detailed discussion of the Oncotype score (23) and the underlying studies that go along with the graphs on page 1 and 2 of the Oncotype Report, as well as the 2018 TailorX study, and how this all fits in with my wife's individual tumor characteristics and other factors (such as age). His bottom line recommendation is against chemo, as he believes the long-term risks of chemo outweigh the negligible benefits (~2% benefit) that could be achieved with respect to recurrence risk.

    At first, I was pretty focused on the graph on page 2 of the report, which is intended to show the potential benefit with chemo. With a score of 23, it appears there is a potential to have a reduction of approximately 4%. But on the same page is a bar graph that shows the absolute benefit and, with respect to the intermediate range, the average is shown as a negative benefit (but up to a 4% positive benefit if you took the confidence intervals into account). In the published study, it states that "Patients with intermediate-RS tumors did not appear to have a large benefit, but the uncertainty in the estimate can not exclude a clinically important benefit," and that the benefit from chemo was "less clear" for scores in the 18-30 range. The report did note that tumors with aggressive features, such as high grade, low/no ER and higher proliferation index tended to respond better to chemo.

    The 2018 TailorX study has shown that, for the age group 50 and below, there was no perceived benefit from chemo if the recurrence score was less than 15. However, there is "some benefit" if you have a recurrence score of 16-25 in this age group. If you are over the age 50, there is no perceived benefit from chemo if the recurrence score is 25 or less. The MO pointed out that there is no quantification of the "some benefit" amount that could be achieved based on the age subgroup of 50 or under. This is actually discussed in the study itself. First, the study concludes that there was no perceived benefit of chemo with a recurrence score between 11-25, without resorting to a subgroup analysis. The study was not designed to then look at subgroups within the total population and see if different subgroups can benefit from chemo. However, on page 15 of the supplemental materials, it is explained that while no subgroup interaction analysis was planned, they did look at the data to consider whether it suggests that some subgroups within the 11-25 score range might still benefit from chemo. The report states that "Because of the smaller numbers, it is very difficult to establish non-inferiority in individual subgroups, and they generally do not provide adequate power for establishing superiority of chemotherapy, so these analysis should be primarily viewed as descriptive and exploratory." Thus, the MO explained that the statement that there could be some benefit is observational only, and not backed up with proven statistics. Thus, it is necessary to look at other data points in making a recommendation on chemo.

    As I said, our MO believed that the risks of chemo would outweigh any potential benefits. This was based on the following factors. First, my wife's age is almost 49.5 years. Because she is closer to the arbitrary age 50 cutoff (where the study says over 50 and recurrence score of 25 or less can safely skip chemo), he felt that there could be more potential benefit with a younger patient in the 50 and below subgroup. Also, there are no aggressive characteristics of the tumor, except for the low PR (5%). He believes the recurrence score is higher than one might expect because of the low PR. I have read at least one study that does suggest a decrease in PR has an inverse impact to the recurrence score. Because the pathology suggests there are no fast growing or dividing cells, and the tumor was small (6mm), he would have to give a strong dose of chemo treatment to achieve a potential benefit (and again, he ballparks at about 2%). A stronger dose, with cyclophosphamide, apparently has the potential for more long-term side effects. So he was effectively comparing the potential long term risks of chemo against an approximate 2% recurrence benefit (and the 2% benefit could actually be zero, as a recurrence score of 23 has the Tam and Chemo lines intersecting within the confidence intervals). We are going for a second opinion at the Moffitt Cancer Center, but I believe my wife has decided against chemo. At some level, I feel that either decision is the wrong decision, but I do have confidence in the MO and hopefully the second opinion will be consistent with his recommendation in this case.

    So the next step is radiation treatment and then to determine the best hormone therapy. The MO wants to be aggressive on the hormone treatment. Given the low PR, he said he would most likely want to use an AI for 10 years and possibly add a bisphosphonates (Zometa) to the regime (although not for the 10 years). He said it was a good idea to discuss the hormone therapy options at the second opinion consultation so we can hear two different hospital philosophies on treatment options. It sounded like he wants to stay away from Tamoxifen in my wife's case.

    I am very grateful for the information that I was able to learn from reading the various posts in this thread and in other threads/forums, and the information from those who answered my questions through private messages. I can't tell you how beneficial this site has been for me over the past two months.

    If I learn of anything relating to low/no PR at the second opinion consultation, I'll be sure to post it here.