Luminal A vs. Luminal B stage 1 BC
Comments
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Well that means I would have missed my window as well really. the damn Mammoprint is delayed as is the Kailos Enzyme Metabolizer test. Oh well, I've also read somewhere that saving the chemo for a potential reoccurance can be a good thing, as you can use the first line chemo rather than the more extreme ones since it's not developed a resistance yet.
I've decided last night that given my Low PR+, my High Ki, and my Middle Oncotype, that if either test comes back scary, I'm going to switch to OS and AI. Still no chemo. I'll just consider myself Luminal B and thank you to whoever posted the link showing the AI worked equally on Luminal A/B... That has helped give me a game plan at least if the news is scary.I just have to decide if I want to do the hysterectomy or the damn shots every month. (I am not good with needles or pain)... I'm done having kids and am resigned to the life of post menopause.
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That optimal time for chemo seems pretty tricky to me. I had a late diagnosis by almost 5 months from my first symptoms due to dense breasts. I then had 2 surgeries, then chemo. That was almost another 2 months. How do you pick an optimal time period when cancer is running around undiagnosed for so many months. To start counting at diagnosis seems weird to me. My docs still felt that chemo was beneficial and it still, hopefully, killed some traveling cancer cells.
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Lisey - I would guess you've had the brca test, given your age, melanoma in your history, but if not, melanoma, of course, is one of the major 4 cancers (breast, ovarian, melanoma, pancreas) of brca2. You are a researcher, so no don't you have, but I would be remiss not to mention it to you, in which case the BSO would be in order.
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Yes, I'm negative for all DNA Breast cancer testing.. woot woot.. But they didn't test for familia melanoma though, which bugged my Onc. Kaiser wouldn't cover it since it doesn't apply to BC.. Every cousin on my mother's side has had Melanoma and 2 great uncles died from it. I'm sure I have the melanoma gene... but no BC at all runs in our family. - it's another reason for me to avoid chemo if possible. Onc said it's better to be fighting BC than a Melanoma reoccurence.
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Lisey - yes, we had talked about this and I apologize. My memory sucks since chemo (it always did, but even more so now). Hey, another reason it's good not to have chemo. I was the one whose brother worked at Kaiser (he developed their EMR system) and even he had to fight to get brca testing, after I tested positive. Kaiser gave the reason "because he is male" which is especially ridiculous with brca2+. He did, eventually, get the test. Oh, I had asked you about this melanoma familial gene. Does it have a name? My former supervisor's brother and father had melanoma. The brother was going to Stanford U and if I remember that correctly, there was no gene test then? Maybe 10 years ago. I would like to write him and tell him of this test if it is new. I assume your melanoma was stage 1 or 2? How did you discover it? I'm supposedly at higher risk for it, but there is no history in our family.
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Quinn: I am a redhead, but not a freckly one. My cousin got it - stage 3.. and so I was always looking... and one day I notice this freckle.. (TINY FRECKLE) on my knee that had a dark black spot in it. (probably the size of a pencil tip point like 1mm) I ignored it because it didn't fit the ABCs... it wasn't big, it was round and tiny.. but it did have that black spot. Then my mother noticed and convinced me to go in. I was shocked when it came back as MM. But stage 1A. Got the sentinel lymph node check in my groin, and it was clear. got a huge chunk of my knee removed. I was stage 1A and considered cured. But I'm watching my freckles like a hawk.
Here's a link of the gene testing.. http://www.cancer.net/cancer-types/familial-malignant-melanoma
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Thank you Lisey - wow, even that small they took a big chunk. Glad you found it! My dermatologist said women tend to get in thigh area and men on upper torso. Seems like yours fit that bill. How long did you wait after seeing it for the first time? I must say, I see things and am never sure what qualifies as the online literature always gives exceptions...for instance, I had some pink raised mole type thing removed, but pink isn't usually indicative, but there is that rare exception!
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ladies, my oncology nurse confirmed that I will only have to pay $500 for both the mammoprint and the blueprint, so they are running bother afterall. That's good news as the test suite is over 6k. 1 more week and I find out exactly what subset I am and if I'm moving to an AI/OS
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Great news Lisey. Hoping for the best possible outcome on these and your other tests. 🍀
BarredOwl
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My MO never once mentioned anything about luminal a or luminal b. Is this something that he should have mentioned. Again my MO was very vague about everything. Me being so scared that I thought I was being told everything. Why wouldn't an MO want to send for Oncotpye even if he thought that it would come back high?? No matter what isn't the info helpful? The only thing I can think of is that he wanted me to do chemo and if the results came back in the gray area I might not. Sound reasonable??
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Thinking, this stuff is so new, he may not have really signed on the Oncotype back in 2014... I'm grateful that Agendia told my Onc nurse that the most I will is $500, because it enables me to bypass Kaiser's refusal to pay and do it anyway. And this Luminal A/B different subset types is SO NEW... He was probably just a by the book kind of doc and wasn't in to the newest research. Some people stick to 'tried and true'. Which I think does a disservice to patients. Honestly though, most patients don't take the time to dig and research, most just want to trust their doctor knows what is best.
I think very soon, the subset of a tumor will be as important as grade. I was on the TN board and someone posted a link to an article showing there are 6 distinct subsets of TN, and some don't work with chemo like Luminal A. Wouldn't you want to know that before you did the chemo? This technology is very new. I did the Kailos metabolic genetic testing (waiting on that too) and in 2014 it was $3000 to get. Now it's only $150. Times are changing quickly, a lot of doctors simply don't care to keep up.I'm so grateful for my Onc Nurse (since she's the only who speaks to me)... the fact that she called them and pushed for it anyway and called them back and confirmed I wouldn't be charged extra for the Blueprint on top of the Mammoprint... well I'm going to have to send her something as a Thank you.
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I don't know, Thinking Positive - you and I were dx about the same time and my first MO was certainly familiar with the use of the Oncotype for node+, although she did tell me she felt it hadn't been sufficiently validated for that use. (It was my surgeon who submitted my tissue for Oncotype and I suspect the MO would have dragged her feet on that.) I got the feeling she would have said anything to get buy in to chemo, frankly. She did discuss Luminal A vs Lum B, but briefly.
I do think here are some MOs who really just want patients to go along with the program and the less they know, the fewer questions the MO will have to answer. I'm sorry your MO deprived you of the opportunity to obtain that information. -
Thinking Positive - I also did not have an oncotype (even though I asked) and Luminal A or Luminal B was never brought up. I keep meaning to ask her about that and I always forget. I'm still to this day bugged that I didn't push harder for the oncotype. My MO also said the test wasn't validated for node positive women. She said she could put me in the trial, but she was afraid that I would be put in the arm that didn't get chemo. I'm ok that I got chemo since my tumor was big and I had LVI, but I know there is info on the oncotype test that I would like to know. I also didn't have the Ki67 test which also bugs me. I asked about that too, but I was told my clinic doesn't do that anymore. I do like my MO. She's very attentive and if I need to see her she gets me in ASAP. If I have the slightest concern she'll run tests for me, but I do wish I had the oncotype test.
Nancy
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side note, I think you can still have your tissue sent in.. the tumors aren't thrown away, but kept in a way that the are saved for future questions. If I were u, Id asked them to do oncotype, ki, and the new one that goes along with ki, p53 (or something like that). A lot of the reoccurances I see, the next tumor has less pr than the previous, Im sure low pr is huge, we just don't know it yet.
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What is considered low PR? My PR was 59%. That's not high, but I do not think its low either. Medium? Lol. I think if I asked for the oncotype now I'd have to pay out of pocket.
Nancy
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Nancy, I would LOVE to have that PR score. Mine was 5%.
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I still say we need a like button on this board. Lisey please stay ( I read your post onthe other thread). I'd like to know what your test results are. I totally get the going to the stage IV threads. I did it all the time when I was first diagnosed. Scared the bajeebies out of me. It gets better as time goes on I promise.
Hugs
Nancy
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I've got a question for our learned posters here. I won't be having chemo. I'm fairly convinced this disease will get me in the next few years. I am a lot older(65) than most of you here so it is easier for me to live with that. I am going to try and live as healthily as possible. I am taking Arimidex. I will be commencing Prolia for osteopaenia and possible deterrent to mets.
The 2nd onc explained to me that the reason it is important to have chemo asap after surgery is because all the cells get stirred up during surgery and that is when they are likely to spread. I had never realised this was the case.
Please read the following bearing in mind that I could be totally wrong as this is why I thought post op(adjuvant) chemo was given.... So some of us get a chest xray and whole body CT scan with contrast prior to surgery to check for mets which may already be there. That would possibly negate the need for breast surgery as we would already be Stage 4. My understanding is/was that the CT scan picks up tumours about 1 cm and above so there may be smaller ones not visable. I thought the reason for post op chemo was to kill these cells. But maybe I am toatlly wrong.
Lisey I hope the tests you are getting help in your decision making process
Optimist 52. Now there is no point in having the tumour tested as the 2nd onc was quite adamant that it was too late to have chemo, but thanks for the info anyway. I am 4.5 months post UMX. She described me as having an unusual subset of features not characteristic of ILC which is usually Er+Pr+
Hope someone can enlighten me further on what the aim of post op chemo is. I guess it's academic for me now but I would be really interested to know.
Thanks
Gerri
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Gerrib, I've only posted once on this thread, I'm usually on the lumpectomy thread but have been reading the posts here for a couple of weeks. I read your question and don't understand. You say that surgery stirs up the cells and now 4 months later, it's too late to begin chemo. Isn't that the point of systemic treatment, to travel throughout the body and attack any cancer cells wherever they are? I too am 65, but my MO as now ordered the Prosigna test (similar to mamma print) to further pinpoint my luminal A/B status and do additional DNA testing that oncotype test doesn't do. (I'm in the intermediate range for onco and am trying to decide if I should have chemo or go straight to rads and AI). I understand you are in Canada and may have different protocols but I'd seek another opinion. Even stage 4 doesn't mean it's over. I have a couple of friends who have been stage 4 and they are still here 14 and 7 years later. Have you looked into any special studies near you? Don't give up, and don't accept a dr comment unless you agree with it. Good luck.
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Hi gerrib:
A tumor has been in there a long time before surgery. There is some risk (even in node-negative disease) that during this period of time, if some of the tumor cells have acquired the capability of metastatic spread, that some of those cells may have escaped the breast to distant site(s) and set up house. As you note, these may not appear on scans, and many patients do not even receive such scans. The main purpose of adjuvant chemotherapy administered post-surgery is to kill any cells that have escaped to distant sites.
The potential "stirring" up you are describing (and I am not familiar with the quality of the evidence regarding such phenomena) has been proposed as a biologic rationale to start chemotherapy as soon as possible after the removal of the primary tumor ("asap after surgery"). In other words, in my layperson's understanding, it is more relevant to a potentially preferred timing of initiating chemotherapy. See e.g., paragraph 1 of this commentary (which discusses the study featured by SpecialK yesterday):
Colleoni (2014): http://jco.ascopubs.org/content/32/8/717.full
"The proper timing of commencement of adjuvant chemotherapy has been studied for decades. There is in fact a biologic rationale to start chemotherapy as soon as possible after the removal of the primary tumor. Since the late 1970s, there has been evidence that tumor removal as well as surgical trauma might lead to an accelerated growth of micrometastases (1) and an increased number of circulating tumor cells.(2) In addition, an increased probability of drug resistance in micrometastatic disease in case of delayed administration of chemotherapy has been hypothesized.(3) Based on these assumptions, trials on perioperative chemotherapy were launched in the 1980s. A meta-analysis focusing on trials of perioperative chemotherapy showed a potential beneficial effect of early initiation of chemotherapy with a reduced risk of relapse of 11%.(4)"
While there may be an advantage to very early initiation of adjuvant chemotherapy, this does not preclude initiation of chemotherapy within a reasonable time following surgery. However, I think the MO may be saying that as nearly 5 months have elapsed since your diagnosis (2/28/2016), she does not recommend initiating it at this time in your particular case. Please do not hesitate to call her back and request confirmation of that, and clarification of the basis for her advice. You may wish to inquire what the outer limit for initiating chemotherapy is thought to be in general, and why.
BarredOwl
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Further to Specialk's post above of the 2014 BC.org feature re time to chemotherapy, please note that if chemotherapy is recommended to someone, they should not necessarily decline it just because they may be X days beyond diagnosis, based on a single report.
For example, the group that published the 2014 article featured above (Chavez-MacGregor) has since published the results of a larger study regarding time to chemotherapy ("TTC") in the adjuvant setting (where chemotherapy is administered post-surgery) which is not consistent in all aspects:
Abstract of March 2016 article (free full text): http://oncology.jamanetwork.com/article.aspx?articleid=2474437
Commentary (partial view, full text behind paywall): http://oncology.jamanetwork.com/article.aspx?articleid=2474434
BC.org summary: http://www.breastcancer.org/research-news/timely-treatment-improves-survival
Most studies in this area are retrospective and have various limitations. In addition, the results of various studies in this area are not consistent with each other in all aspects, and there are some important differences between sub-groups (e.g., triple-negative). Thus, regarding time to chemotherapy, patients should always seek current, case-specific expert professional advice, to ensure the complete body of evidence, including the most recent and reliable data that is applicable to their particular situation and diagnosis, is considered.
BarredOwl
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I was quoting a passage from the scientific literature, and please don't miss my caveat: "and I am not familiar with the quality of the evidence regarding such phenomena."
I hesitated to post that quote, because despite it being on point to the phenomena Gerrib was describing, I worry someone will give some of these hypothesis-generating "observations" which are not suitable for making treatment decisions far too much weight and conclude that surgery is bad for some reason, which it is not.
BarredOwl
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Gerrib:
As I said above, you may wish to inquire what the outer limit for initiating chemotherapy is thought to be in general, the reasons why, as well as what is known about how that could impact the efficacy of chemotherapy in your case (any impact on risk reduction). I don't know what the outer limit is.
According to her profile, Moondust in this thread seems to have started chemotherapy (after radiation) six months from diagnosis, but this is not common. It is possible that your situation and diagnosis differs in some material way from hers.
If you choose to seek a third opinion, please do so as soon as possible.
BarredOwl
P.S.. I do not mean to suggest either that you should or should not receive chemo. I am just suggesting possible follow-up questions if you are unclear about the advice you received.
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Thanks for the informative posts. I really appreciate all the effort all the people here on BCO put into providing informative and supportive posts. I will read in more depth what you have posted in the near future. I have had a cursory look. Sorry I'm not mentioning individual names here.
The onc. I got the 2nd opinion from may have said that she would not prescribe chemo for me now bearing in mind a few things including length of time from diagnosis as well as my home circumstances and histopathology 'grey area'. Anyway I don't think I will pursue it anymore.
I'm sure I will continue to have a look here as I am rather hooked.
Thanks once again
Gerri
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(sharing from another post) I got my mammoprint results over the phone, the doc was right... I'm luminal A. I hope this gives some reassurance to those with low PR+ and high ki-67 levels that even with my numbers I turned out to have Luminal A. I'M VERY RELIEVED. no chemo for me.
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thank you for posting Lisey...?i did not have the mamma print.. Nice to know that I may still be luminal A with a 25% ki67 score...
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JoJo, yup... I was really thinking I was Luminal B... I'm shocked, but my Oncologist was right all along. She even offered to place wagers on it and I was skeptical of her positive nature. I have a worse oncotype and ki-67 score than you, so there's a good chance you could be Luminal A as well. I'll post the actual Mammoprint & Blueprint reports once I get them. Whew...
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Hi Lisey:
MammaPrint "Low" and Blueprint "Luminal-type"? Awesome.
BarredOwl
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so is it possible to be luminal a with a grade 3 tumor kI 67 at 28% and a PR positive at 68% or is that definitely luminal b???
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my oncologist never ever mention anything about women LA or luminal me I knew nothing about it so I couldn't question
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