Luminal A vs. Luminal B stage 1 BC

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  • Lisey
    Lisey Member Posts: 1,053
    edited July 2016

    CchiSandy, quick question on the Zometa...

    The Onc. doc did mention insurance doesnt' cover the shot anymore due to mixed studies of effectiveness... but she'd give me an oral one (a different name instead). She sounded like that actually is something very innoculous... perhaps I'll dig deeper on that.

    The Plastic Surgeon is seeing me tomorrow for surgery to remove the Tissue Extenders for good (they were never filled and I intend to be flat)... pissed I wasn't warned about the corset iron maiden of death... anyway, wish me luck everyone that I didnt' Piss the PS off enough to have him butcher me on the table as I force him to remove his work.

    Thinking Positive, read some of the articles posted above.... it really digs into types of substypes of cancer.


  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited July 2016

    Lisey, the standard treatment for osteopenia, osteoporosis or combatting/preventing bone weakening from AIs is an oral bisphosphonate. Fosamax (alendronate) is the original, and must be taken weekly. Boniva is another oral that can be taken once monthly. Both, however, exacerbate preexisting cause (often severe) GERD (you must remain upright for at least 1/2 hr after each pill, preferably longer, but you will still get some heartburn). Long-term use can actually lead to gastric &/or esophageal erosions and even GI bleeds. So if you have any propensity for GERD your doctor will have to write a letter explaining that the certainty of that SE justifies the higher cost of semiannual intravenous or intramuscular bisphosphonate (Zometa, or zolendroic acid) or biologic (Prolia, or denosumab) therapy. Your insurance will cover at least the Zometa, though there would have to be some considerable hoop-jumping for them to cover the superior (milder SEs) Prolia. If you aren’t on Medicare yet, you’re likelier to be able to get the Prolia covered.

    But the downsides (besides cost and time & labor) of infused or injected therapies is a slight chance of osteonecrosis of the jaw and (increasingly more commonly reported, though still relatively rare) paradoxical horizontal femoral fractures--the very fracture bone-strenghteners are supposed to prevent. The femoral fracture has been reported much oftener with Zometa than with Prolia. And though you wouldn’t get or aggravate your GERD, Zometa causes bone and muscle aches and a “flu-like” feeling for 1-3 days after infusion, which usually doesn’t happen with Prolia.

    There ain’t no such thing as a free lunch. Every treatment--or refusal thereof--is a roll of the dice between benefit and risk. My MO says Zometa. My PCP urges me to avoid all bone-strengthening drugs (oral or injected/I.V., bisphosphonate or biologic) but instead take supplements and do ballistic exercise. My orthopod says weightbearing exercise is fine, but ballistic (impact) exercise is verboten: likely to loosen my knee implants before their time and necessitate revision surgery, with all its risks of DVT and infection. And a renowned bone specialist at the U. of C. whom I’d e-mailed, said adamantly “doing nothing is not an option.” I think I will pay for a consult with the latter--since he is a leader in the treatment of osteopenia & osteoporosis, a letter from him demanding coverage for Prolia would carry far more weight with my Part D carrier (or even--should he insist I get it injected under observation and supervision--as a “treatment” a la Zometa under my Part B supplement carrier).

  • QuinnCat
    QuinnCat Member Posts: 3,456
    edited July 2016

    Just a question - I see so many getting Cytoxan / Taxol for chemo - what happened to Adriamycin? Aggressive BC's use to get, maybe still do, AC/T? Sorry, if this doesn't fit, but definitely Luminal B's got chemo regime.

  • SpecialK
    SpecialK Member Posts: 16,486
    edited July 2016

    Quinn - The TC regimen is Taxotere/Cytoxan, not Taxol and Cytoxan. Taxotere is a more potent dosing of taxane drug and is more like a dose dense version of Taxol. AC-T is Adriamycin/Cytoxan/Taxol, which is commonly given. You will sometimes see TAC given, but it is a more unusual combination of Taxotere, Adriamycin and Cytoxan and not as commonly given due to the intensity of both Adriamycin and Taxotere.

  • QuinnCat
    QuinnCat Member Posts: 3,456
    edited July 2016

    I was given dd Adriamycin, Cytoxan and dd Taxol. I had never heard that Taxotere was more potent, though frankly never asked the difference between Taxol and Taxotere. Though I had dose dense, I can't imagine anything more potent than the Taxol I got (I really reacted poorly to it, though not in an allergic way), but my wonderment really comes at not seeing so much Adriamycin given these days. Is there a change of philosophy about dose dense Adriamycin? I had chemo in 2012.

  • ThinkingPositive
    ThinkingPositive Member Posts: 834
    edited July 2016

    After reading that I am now wondering. I was given choice between TCAnd ACT I chose TC regimen. I was worried about heart issues from ACT. Family history. Would they have offered a regimen to choose if they thought I should have only had ACT?? Can you be in the middle or gray areas for regimen of chemo ? I have always continued to wonder and there were so many times I would bring up grade 3. 1 Node positive and Lvi present. Just kept being told its small. Great margins. We got it all. Don't focus on that.

  • SpecialK
    SpecialK Member Posts: 16,486
    edited July 2016

    Quinn - I have not noticed less Adriamycin being given, but rather a tailoring of regimen to patient. Being Her2+ myself, my MO did not consider AC-TH for me because of the cardiotoxicity of both Adriamycin and Herceptin. For his Her2+ patients he gives TCH, but prescribes AC-T for many of his other breast cancer patients. The majority of triple negative patients I have either seen here, or known personally, have received AC-T, sometimes with Carboplatin added in. There is some evidence that TC (Taxotere/Cytoxan) can also be shortened to 4 infusions from 6, so some MO are liking that shorter protocol and possibly prescribing that regimen more frequently.

    Taxotere is double the potency of Taxol, one of the reasons it is given every 21 days and Taxol can be given weekly. Taxotere was developed when there were production issues with Taxol, the older drug, due to a deficit of Pacific Yew Trees from which it was initially made.

    Thinking - many docs follow the NCCN guidelines for choosing regimens, which delineate some choices by stage and receptor/Her2 status. For smaller masses, patients with cardiac concerns, etc. choices are made to use regimens with less collateral damage potential.

  • ThinkingPositive
    ThinkingPositive Member Posts: 834
    edited July 2016

    SpecialK. Thanks for responding. I can tell you not a day goes by that I don't struggle with this and it seems to get worse the further I get from diagnosis. Do MO's normally give choices to patients who know nothing.

  • QuinnCat
    QuinnCat Member Posts: 3,456
    edited July 2016

    Great article kayb. I'm 4 years out from chemo; had an absence from BCO for awhile and just had anecdotal observations that so many were getting TC, which frankly I never remember anyone getting. I've never seen a Her2+ get Adriamycin, and that hasn't changed.

    SpecialK - Thanks for your response. I'm not sure I got Taxol or Taxane, frankly. For sure I did not get Taxotere. Funny you should mention the source of Taxol being Pacific Yew trees (Thuja plicata is the Latin). Back in the early 1980's I had to inventory every Pacific Yew tree in my geographic area at that time, which was at the very southern end of it's range. Because it was a less suitable environment, it grew like a bush, rather than a tree. They had just discovered it's use to fight BC and was considered gold. Who knew that little bush (we found about 20 actual bushes, if that) would end up causing me great harm 30 plus years later. I still remember where are few of them are. The further north, the more plentiful. Alaska is the land of Pacific Yew, at least on the Kenai peninsula.

    Now as far as some getting Carboplatin after AC/T, I'm the only one I know who got that? Do you know someone else and why they got it? And that was because of my brca2 status. It was not protocol and as far as I know, still is not.

    My MO at OHSU wanted to "throw the kitchen sink at me" and then some. I guess that was his philosophy, though no node, no lvi and 1.4 cm. High oncoscore though. Thinking Positive my local MO now does Oncoscores on Stage 3s. It gives her an idea of how aggressive to go. Did you happen to get an oncoscore?

  • QuinnCat
    QuinnCat Member Posts: 3,456
    edited July 2016

    btw- there is a class action lawsuit that is soliciting class members for those who had permanent hair loss from Taxotere.

  • ThinkingPositive
    ThinkingPositive Member Posts: 834
    edited July 2016

    Quinncat.. My MO dos not send for oncotype. He said it would probably come back high. I was only stage 2a with one node positive. I didn't know enough about it and thought if I had to do chemo I should start it so I agreed. I did TC (taxotere). Did not really have any bad side effects and hair grew back. There was so much talk 2 years ago about the heart problems from ACT and how if you lived out west this would be the regimen. My cardiologist said that he has seen a few of his patients have heart issues after the ACT not right away but years after. That was enough to scare me. He said more have issues that aren't published. I. Just keep hoping that my MO would not have allowed me to choose TC if it wasn't going to do me any good

  • QuinnCat
    QuinnCat Member Posts: 3,456
    edited July 2016

    ThinkingPositive If there was one area I don't feel I got enough info on pre-chemo was SEs. Or I was too much in shock to absorb much of what was said or be my best advocate, at that time. If I had heard the heart issues in the manner you did, I think I would have been alarmed and drilled down on that one. I know later in chemo I remember researching the topic. It's hard to know, if I was even presented with a choice (I was not), what I would have done given my MO at OHSU said it was the second highest oncoscore he had ever seen.


  • Meow13
    Meow13 Member Posts: 4,859
    edited July 2016

    I remember my mo thinking my decision against ACT was not one he usually hears. Most patients are insistent on having everything thrown at their cancer to kill it. My feeling was the body is so complicated and taking chemo might cause more harm than good. I was concerned about the high oncodx but my mitotic rate was a 1. The data from the oncodx results didn't impress me.

    My mo put alot of weight on the oncodx test. Deep down I felt chemo was not going to help me.

  • QuinnCat
    QuinnCat Member Posts: 3,456
    edited July 2016

    I totally respect your choice Meow! I wish I had had my thinking more together, especially about Taxol as it has had a lasting affect on me. At least stopping it after the 2nd dose.

  • ThinkingPositive
    ThinkingPositive Member Posts: 834
    edited July 2016

    Quinncat. What was your onco score? Were you grade 3 with node involvement? I just want to know where I stand in the way of my pathology being way out there or not so bad

  • QuinnCat
    QuinnCat Member Posts: 3,456
    edited July 2016

    Oncoscore 39. IDC; 1.4 cm; Grade 3 (8/9 Nottingham - tubular got a 2). No LVI. 0/1 SNB. No node involvement. Brca2+ ER+PR+ (barely) Her2- on FISH. Ki67 60%+ (The MO didn't consider Ki67...that was done at the biopsy lab elsewhere.)

  • SpecialK
    SpecialK Member Posts: 16,486
    edited July 2016

    Quinn - with the TCH (or TCHP) regimen the C is Carboplatin, when TC is given for non Her2+ patients, the C is Cytoxan. For triple negatives some MOs are now giving Carboplatin at the tail end because it has been found to be beneficial for those patients. Many TN patients are BRCA+ so it follows, but is a newer idea.

  • QuinnCat
    QuinnCat Member Posts: 3,456
    edited July 2016

    I had the AC/T then C in 2012. I only found one other woman that would have gotten that combo, here, but she had ovarian cancer and Carboplatin 15 years previous, so could not get carobplatin again (at Dana Farber). Another brca woman was going to MD Anderson and asked about it and they said no - not protocol. I'm please to hear that my MO was ahead of the curve on the Carboplatin in my situ (he admitted he was "going off the reservation"), but curious when did this become more routine for TN? In my case, not TN, but brca got me the Carboplatin.

  • Lisey
    Lisey Member Posts: 1,053
    edited July 2016

    I'm getting the mammaprint come hell or high water, whether I have to $5k or just the $500 I've heard they drop it too. I trust you ladies suggesting it since I have the 20 oncotype, mitosis of 1, but a high ki 35. Do any of know if the mamma print will suggest the most effective chemo course if one is warranted? My onc, who I like said the tcx4 was her most likely suggestion, I'm Er+, pr+barely, her2-. The mamma print should provide more definite numbers since it's on the tumor itself rather than the biopsy. She said it will also solve the luminal a/b question.

    After reading the post above concerning Ac, I'm now wondering why tcx4 would be the automatic go to. I do hope for 5k, this larger test actually evaluates different chemo options on my particular tumor. Thoughts?

    Ps... the TEs came out today and my pain and iron bra of spikes is gone.. resting comfortably now at home in bed. Next step tamoxifen and paying for the mammaprint.

  • SpecialK
    SpecialK Member Posts: 16,486
    edited July 2016

    lisey - the only information you will get from Mammaprint is a high or low classification, there is no intermediate or middle ground - that is why some oncologists like to use it as a tie breaker when you have an intermediate result on Oncotype. You will also receive a reconfirmation of your hormonal receptors and Her2 status. There is no specific recommendation about a chemo regimen included in the testing, that decision should be made by your oncologist based on all of your testing and pathology. My guess on why your MO is recommending TCx4 is because you have a small tumor, node negative, intermediate grade, and had a mastectomy. The crap shoot of chemo has to be a weighing of potential benefit versus potential harm. If your tumor was larger, you had node involvement, a higher grade, or were TN or Her2+ a more complex regimen of three drugs and a longer course of treatment might be warranted.

    Here is a link to what a sample Mammaprint report looks like:

    http://www.agendia.com/wp-content/uploads/2013/05/AGE594_US_Mamma_Under61_lowV2_UPDATED.pdf

  • Lisey
    Lisey Member Posts: 1,053
    edited July 2016

    specialk, thanks for the additional info. Do you know if the low / high risk rakes tamoxifen into consideration?

    For example, my oncotype says I have a 13% chance of reoccurance within 10 years WITH tamoxifen. Apparently, the docs double that number without tamoxifen to 26%.

    So on the mammaprint it lists low risk as 10% chance but because it is not for ER+ ONLY patients, would my risk be even less with tamoxifen? Basically I'm asking if that low risk category percentage is for surgery alone, or with expected hormonal treatments as well?

    It's an ex pensive test, but we'll worth it if it gets me out of the light grey area.

  • cubbieblue
    cubbieblue Member Posts: 68
    edited July 2016

    SpecialK, can you tell me if the tumor cell percentage shown on the mammaprint is the same thing as the K167 on the pathology report. Thanks.

  • SpecialK
    SpecialK Member Posts: 16,486
    edited July 2016

    lisey - I do not believe that Mammaprint takes anti-hormonals into consideration when determining low/high risk because the test is not limited only to ER+ patients - the test can be done if you are hormone receptor negative. Oncotype Dx is a deferent type of test, the RS factors in anti-hormonal therapy because the test is limited to ER+ patients and is for the purpose of determining whether there is benefit in adding chemotherapy to anti-hormonal therapy.

    cubbie - I believe the tumor cell percentage number refers to the sample and how much of it is made up of malignant cells. I don't believe it is comparable or related to Ki67, which is a protein expression that occurs with cell proliferation.

  • Lisey
    Lisey Member Posts: 1,053
    edited July 2016

    what I don't understand is if I have a mitosis rate of 1, how could my ki be 30-35%? My oncoscore is 20 (low intermediate). The doc thiinks the mammaprint will give us a final say in the matter of Chemo. She leans not to push for chemo, but it's that high ki that bothers me... yet the mitosis rate of 1 seems low.

    thus I guess the quesiton is. People have suggested in this thread to get the mammaprint if the onco is in the grey zone. If the mammaprint isn't as exact as the oncotype, why should I spend 5K on it?

  • SpecialK
    SpecialK Member Posts: 16,486
    edited July 2016

    lisey - it is not that the Mammaprint is not as exact, it is that it is imparting slightly different information to a broader population of patients - it is an apples and oranges situation to some extent. Mammaprint looks at a much larger genetic profile than Oncotype, is less focused on receptors, but will give you definitive subtype info - not sure that would be worth the cost unless it was done instead of Oncotype if you have to pay out of pocket. Keep in mind that looking at mitosis or Ki67 are snapshots - on that slide or sample, not necessarily the whole tumor. That is why grade as a whole, node status, tumor size, etc should be considered factors. Also, important to note that endocrine therapy may offer more benefit than chemo for your stats. Did your MO run any numbers through Adjuvent or any other calculators to show you benefit percentages

  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited July 2016
  • Lisey
    Lisey Member Posts: 1,053
    edited July 2016

    She basically showed me the Oncotype graph and that adding Chemo (TC) to my mix would add about 3% off my reoccurance stats. She told me she leaned away from Chemo, but thought Mammaprint would give us an either black or white answer rather than the grey area I'm in with the oncotype.

    I heard from the nurse that basically if I let Kaiser and the Mammaprint company go back and forth at some point I'll just be billed $500. But nothing like that is in writing and if it's a needs based thing, we wouldn't qualify. 5K is a lot of money, which I think Kaiser should pay since I'm not doing the reconstruction.. but they simply wont since they did the oncotype. The other factor is the low PR level - that started this thread... It's higher on the oncotype bar graph than on the IHC biopsy, and we all know biopsies can just show a glimpse of the whole tumor. At the same time, the oncotype bar graph showed my ER level lower than the IHC (which is a concern to me)... so I want them to IHC the actual tumor rather than just the biopsy. She said mammaprint would be clearer on my true levels as well.

    If I do the chemo, I'm going to do the Penguin Cold Caps and that's going to be about $3K.. I'm fine paying $500 to the mammaprint, but the $5K is the reason I'm hesitating, the only reason I really want it is because numerous women on here suggested it and I truly trust the advise I'm getting here. (and my Onc also said it would be good to have a black/white and no middle grey option)

  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited July 2016

    And a discussion about Ki67 vs Mitotic rate:

    https://community.breastcancer.org/forum/5/topics/...

    Just hoping these discussions might help clarify or inform your discussions with your onc.


  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited July 2016

    Lisey - Have you considered a second opinion on the pathology? Johns Hopkibs will do it for a few hundred $$.

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