Will 30% of Early Stage (1-IIIA) go on to metastasize??
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Hi Lisey:
I think you made a reasonable decision about treatment, in light of the medical advice you received, your diagnosis, Oncotype and MammaPrint test results, and co-morbidities.
I note that for some groups of women, solid clinical evidence supports the efficacy of chemotherapy, and the risk/benefit analysis favors chemotherapy in these groups.
It is my understanding that the concept of resistance arises in various clinical contexts, with different types of systemic therapies. In breast cancer, it is an area of active research, but is not fully understood. Neither guidelines nor clinicians would suggest foregoing indicated chemotherapy or endocrine therapy based on such (often poorly characterized) phenomena. It is important to avoid speculative or unproven statements that may frighten those currently considering their options away from effective and potentially life-saving treatments.
BarredOwl
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Barred, our understandings are so limited at this point.. I absolutely think caution and recognizing that customized genetics play a huge part in whether different chemo regimes are successful. As I mentioned, if they wanted me to do a CMF, my enzyme pathways for that particular pathway would have been not effective. But no one would have known that because genetics testing is not the standard... YET. Thus my point. these doctors are doing a one-size-fits all because they have no idea about our personalized geneitcs. And just because we lack understanding on 'cancer stem cells' doesn't mean the phenomenon isn't occurring. That nature article really spelled out the area. We know it happens, we just don't have a good answer for it yet. I do think women need to not jump on the chemo bandwagon until they understand other ramifications and secondary issues (such as cancer stem cells and genetics)... most simply have no clue.
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Here's a study that shows worse outcomes for CMF or AC for my type of genetic alleles. Again, NO ONE would even know this without genetic testing that I did on my own.
http://www.nature.com/bjc/journal/v102/n6/full/6605587a.html
results:
A lower incidence of dose delay, indicative of less toxicity, was seen in carriers of the SLC22A16 A146G, T312C, T755C variants. In contrast, a higher incidence of dose delay was seen in carriers of the SLC22A16 1226C, CYP2B6*2 and CYP2B6*5 alleles. The ABCB1 2677A, CYP2B6*2, CYP 2B6*8, CYP 2B6*9, CYP 2B6*4 alleles were associated with a worse outcome.
conclusion:
Variant alleles in the ABCB1, SLC22A16 and CYP2B6 genes are associated with response to AC therapy in the treatment of breast cancer.
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Hi Lisey:
My post did not address pharmacogenomics, but was limited to resistance phenomena, some of which are poorly characterized. I did not say such phenomena do not exist. I said that "[n]either guidelines nor clinicians would suggest foregoing indicated chemotherapy or endocrine therapy based on such (often poorly characterized) phenomena."
BarredOwl
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Understood Barred. I suppose the more I dig into this stuff (confirmation bias aside), the more I'm realizing that ordinary MOs simply have no idea about most of this stuff. They acknowledge how limited their tools are at this point, at least mine does. She does her best to stay on top of research, but that in and of itself is a full time job and she's seeing patient and dealing with them for most of her day. So it's left to us arm chair researchers to put the pieces together in the meantime and I really am not sure chemo is a good tool for ER+ early stage breast cancers. Yes, it's the ONLY tool we have currently for TN (and it's a shitty one, but so be it). but for early ER+, I think there are better options for many reasons - cancer stem cells, pharmacogenomics, secondary life threatening conditions to the chemo, etc. Most people are counseling us younger women to 'do everything' without realizing that everything may kill us more quickly than if we were more restrained.
Obviously, I have a history of melanoma, so that weighed heavily in my decision.. however, even if I didn't.. my MO was adament that a Oncotype 20, at my age (41) means no chemo due to the risks being equal to or greater than the benefits. The more I research, the more I'm shocked by how quickly and readily women jump at chemo without understanding how completely non-targeted it is and if their body will even utilize it correctly. (genetics)0 -
lisey...regardless of what researchers and clinicians might or might not know...at some point we, as patients need to appreciate the judgment of our team to help us make the best decision with whatever info there is. That said, you might sincerely believe that there is too much unknown for clinicians to make such generalized recommendations. But, rightly, or perhaps wrongly, they MUST deliver us a recommendation based on Standard of Care. Understand, that, before the modern invention of Standard of Care, many more patients were harmed. Today, that standard changes more quickly than anyone could have wondered a decade ago. I remember when I was diagnosed in2010, genetic tests were not yet recommended. The following year the OncotypeDx test finally made its way into the NCCN guidelines. Today, there are several genetic tests to help formulate treatment decisions.
But for newbies like yourself, there appears to be so many more questions than answers due to the explosion of cancer research that seems unsettling. For that matter, how can any individual make any treatment decision since we are all" N of 1's?"
Since the DH was diagnosed with his genetic metabolic disorders many years ago, I had hoped that by now there would be a better treatment. Instead, the researchers realized a while ago that despite two people having the identical genetic defect, no two people have the exact same presentation,. nor do they respond alike to whatever treatment there is.
My point is simple. You might think you have a better handle on your health thanks to whatever genetic and metabolic information you have. Unfortunately, I respectfully beg to differ. Because, if there was that certainty, then all of those tests would be folded into the Standard of Care already.
If those tests comfort you and have helped you in your decisions then that's great. But please keep in mind that these fields of study still leave a lot unknown.
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VR,
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lisey....it also is not true that more younger women were being prescribed chemo. A while ago there was a young sister here who went to MSK and was NOT recommended chemo with an OncotypeDx score of 11. You would be surprised if I told you how many people skewered the physicians '( there were several) recommendations! These sisters believed if she wanted it, then they should have given it to her. Why she went there was beyond me if she wasn't going to respect their opinion. Not sure what became of her....the point? Most physicians aren't pushing chemo on younger women. Most physicians are following guidelines that are based on best available evidence.
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Some women seek second (and third!) opinions simply to find an onc who will "agree" with what they think they need! I'm shocked by how often I read of someone demanding a treatment that wasn't even recommended!!
Having said that, my sister in the USA, upon hearing of my non-chemo cancer, said her friend had the "worse kind" of breast cancer because her friend got chemo. Wow!! AND my sister was a nurse! (not in oncology, true) That shows what laymen think of cancer. You "gotta" do chemo. This same sister, upon hearing I was now stage IV and needed radiation on my left side, said her (other) friend had "complicated" radiation because they had to be careful to not "ruin" her vaginal wall while radiating for ovarian cancer. Ummm, sis. My RO had to avoid my HEART and LUNG!!!!
Laymen just don't understand that there are different markers and different genetics to breast cancer. They lump it all into one group. If you don't lose your hair then you just weren't sick enough.
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My MO was the one NOT pushing chemo.. in fact insisting I don't do it. I ordered the mammaprint because, DUE TO THIS BOARD, a lot of women were saying 'due to my age, I should throw the book at it.".. so I was uncertain. I'm not saying docs push chemo, I'm saying 1) some women on THIS BOARD do... and 2) Docs will admit they just follow a 'standard of care' and that care is not very personalized (throwing jello to a wall and waiting to see what sticks).
I hate it when I see someone on this board say "due to your age, you should do chemo and be more aggressive...".. (as though aggressive is always a good thing - which it's not) That's what got me all worked up.
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Lisey, please do not pay much attention to what NON-MEDICAL individuals on message boards say about cancer! Most of their statements are anecdotal and personally biased. This is definitely not science based information! I know some won't admit it here, but most doctors know better than most lay people.
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lisey....the overarching issue is that there is no N of 1 yet. That said...Western medicine is moving in the direction of individual treatment and despite moving along that line....it is going to take many more years before all of that genetic and metabolic info will be as helpful as it should be.
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And Lisey, you seem to be making the assumption that we didn't do our extensive research like you did, which is not true. Many of us, unfortunately, have become deeply familiar with the science and research in breast cancer. Despite all this knowledge, we are not trained scientists in the field AND at some point have to make a decision either way. Is chemo or aggressive hormone therapy going to be viewed barbaric at some point in the future? Of course, but we don't live in 2060 and have to make decisions based on current available standard of care. Encouraging the newly-diagnosed to doubt the current standard of care, which is proven to improve survival in different population groups, will confuse them more.
I'm glad you did all the additional tests you did, it is good to feel in charge of one's treatment. But there are 2 issues with these tests in my opinion: 1) they can be expensive, 2) what do we do with the test results. I thought about additional testing for myself, but then wondered about therapeutic advantage of knowing I have certain mutation, etc. Is any therapy available? If yes, how do I access it? If not, did I just open another avenue of anxiety and helplessness? So there are ethical issues to consider before a test becomes available to a wider audience.
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Lisey it might be very possible that younger women are prescribed chemo more often but for valid reasons. 1st of all younger women that are diagnosed with breast cancer usually have a more aggressive or faster growing cancer making their need for chemo more necessary. 2nd, some older women have more health issues that might make their oncologist think twice before prescribing…you don't want the treatment to kill the patient! It's possible that more older women (and I mean older) are under treated for that reason.
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Iago, according to my doc, based on research he did, older women are often undertreated. He advocates for looking carefully at the patient's overall condition before ruling out chemo. Some older patients have other health problems, but there are also many who are perfectly fit (other than the stupid cancer).
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Lisey..I'm curious ....as I STILL cannot make my decision of chemo....but would addition of lymphovascular involvement push someone like you to consider chemo. Or did any of your research mention LVI. I am 48 . I hear you that chemo is so broad a treatment..my MO likened it to a man with 1000 knives and hormone therapy was like a gun. But
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Lisey..I'm curious ....as I STILL cannot make my decision of chemo....but would addition of lymphovascular involvement push someone like you to consider chemo. Or did any of your research mention LVI. I am 48 . I hear you that chemo is so broad a treatment..my MO likened it to a man with 1000 knives and hormone therapy was like a gun.
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My MO told me LVI doesn't matter... She said given my margins, my stage, my oncotype and my high hormonal ER+, she said not to consider chemo... but left it up to me. Another consideration is I had melanoma and as another poster pointed out, chemo can make skin cancers start popping up drastically. I *think* it was Special K, (originally wrote ChiSandy) who mentioned she's had dozens removed so far.... so chemo can definitely cause other conditions to happen.
I wasn't sold on no chemo - partly because a lot of women on here said I was young and should do everything I could.. and partly because my ki67 % was high and my PR was low.. (looks like Luminal B to me) . so I also ordered the mammaprint/blueprint because Luminal A is less aggressive than Luminal B and I wanted a clearer picture since I was 'in the middle' on the oncotype. My MO said she's place a wager on it being low risk.... and she was right. I was low risk and Luminal A.If chemo only helps me 3% (which is what my oncotype says) and there's a better than 3% chance I'll suffer some life threatening condition or other cancer from it. I guess I'll take my chances with hormonals and have faith that in 5 years or longer new treatments for BC will be there - immunotherapies that are just for me. The plus side to ER+ cancers that are luminal A is they seldom come back early, it typically is over 5 years or more... so I have science on my side I think.
I'm on Tamoxifen and haven't had any symptoms so far.. it feels like a sugar pill. I certainly hope it's doing it's job, I'm also drinking green tea and taking Melatonin to help with all that.
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Thanks Lisey. Ugh so hard to know what to do. But I read all of these awesome ladies ' posts and I thank you all for sharing. Hope to have clarity soon!
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kayb..thanks ...yes I know not everyone's diagnosis is equal even with similar profiles..I am just eating up anything and everything to help me decide. I am envious of those with a distinct plan laid out...I am running out of time to decide and feeling anxious and terrified I will pick the wrong path.
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Hi Lisey:
ChiSandy had an Oncotype Recurrence Score of 16 (node-negative), and elected endocrine therapy alone, so chemotherapy (for breast cancer) had no role in her skin cancer.
Hi lmencken:
I agree with kayb regarding lymphovascular invasion ("LVI") and clinical context. Moreover, there may be differences in extent of LVI between patients. Different professional organizations may have slightly varying views regarding LVI (e.g., Cancer Care Ontario, St. Gallen, ASCO), but a recent ASCO guideline discussing adjuvant systemic therapy states:
"In addition, in the opinion of the ASCO panel, factors such as grade 3 and the presence of lymphovascular invasion should generally not be used to drive decision making when considered in isolation and need to be interpreted in the overall clinical context."
In the US at least, a second test is sometimes ordered when an intermediate Recurrence Score is received. You can ask your Medical Oncologist whether s/he thinks the MammaPrint test (plus BluePrint test, with its additional read on sub-type) from Agendia might provide additional useful information for decision-making in your case, in light of the recent MINDACT trial publication (NEJM, Aug. 2016) and PROMIS study results (reported at ASCO 2016). In any case, you may find a second opinion helpful, and may wish to line that up now to avoid potential delay.
BarredOwl
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Barred, it was Special K, not ChiSandy...
copied from another thread:
Jul 26, 2016 01:48PM - edited Jul 27, 2016 07:35AM by SpecialKlisey - also as an aside, I had my first skin cancer (basal cell) at 35, and a few additional ones through the next 10 years. They picked up in intensity after I turned 50, I was diagnosed with breast cancer at 54. I had three BCCs that were treated surgically about a week before chemo started. Since chemo, they have come fast and furious, including two recurrences which have required MOHS surgery and big incisions. I am averaging half a dozen a year now. I have had more than 30 total - with two thirds of those needing surgical removal, but have been fortunate that they are only basal cell in nature. You are wise to proceed with caution regarding having had MM and knowing that an alteration in your immune system could possibly trigger a return.
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this article has a good discussion on when genetic tests and oncologists disagree on a patient's risk:
https://www.statnews.com/2016/08/24/breast-cancer-...
I think the most important is the last paragraph that basically states that the patient and the oncologist ultimately need to decide if the small percentage of potential benefit is worth it. For many, the answer is no. For many, the answer is yes. Both are correct. We all make the best decisions we can.
Lmencken, I hope you are able to get good information from a couple oncologists specific to your situation, and perhaps also a mammoprint. No one can ever know if they made the best decision, but remember that whichever decision you make, you still have well over 90% chance of a really good outcome. My situation is the exception, not the rule, and with my family history, it was not a surprise. Once you make your decision, assume you'll do well until proven otherwise.
Lisey, I know you have researched a lot, and your information specific to your situation on the mammoprint is helpful to people. I have researched a lot as well.... Hundreds and hundreds of hours...Specific to my own situation. I also have a BS in health and work in the health field. When I go to see my MO, we have good discussions because he knows I research a lot on my situation, I know he researched a lot on everything, and I know that he knows how this information fits into the big picture of my overall health and I know he has the practical experience treating hundreds (probably thousands) of patients, and has seen the good, the bad, and the ugly of people who've made lots of treatment decisions over the years. We work as a team to make the best decisions we can. We have discussed many possible scenarios for why my cancer returned and we have several very logical theories, which I will not get into. The bottom line is, no one will ever know. I will say though, that one thing you should never say to someone who has a cancer recurrence is well maybe the treatment you chose (or chose not to do, as is the case for many) is the reason your cancer returned. Please try not project theories on things like that to people. Whether they're right, wrong, or anything in between, no one knows, and blaming people for their choices in treatment, or their life choices, is hurtful, even if not intended to be
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Slight correction, BarredOwl: I didn’t have skin cancer, but rather an atypical nevus so dysplastic that if not removed it would likely have become malignant melanoma. And had it been malignant and not in situ, its hormone-receptor and HER2 status wouldn’t have been considered in deciding on chemo or not--only its size, the depth of invasion, and whether it had spread to the lymph nodes (and if so, to just the sentinels or beyond).
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I certainly wasnt intending to offend KBeee...as I'm sure you weren't when you said 'I wanted to know I did all I could to fight this thing' on a different thread a month or so ago... when I was weighing my decision (as though those of us who don't choose chemo didn't do all they could)... It definitely is a two way street and I apologize if I offended you.
In any case, All of us probably help our cancer along... I have low COMT (which eats bad estrogen) so I must be more sensitive to estrogens out there and I used to microwave the hell out of TV plastic dinners. Could my choice to do Tamox over an AI cause a reccurance? Sure... it's a risk I'm taking and I'm aware of it. I'm not saying you initially choosing chemo caused your recurrance, I'm saying it could have opened doors for those CSC. And chemo could have postponed a recurrance for you given your genetics.... I certainly don't know. I AM saying that clearly chemo is hit or miss and this idea that chemo is something all younger women should consider because they are healthier seems off to me.
It's all about the knowing our own genetics, the tumors genetics, which therapies will actually work on our individual cancer. I absolutely HATE this idea that because I'm young and a grade 2, if I'm going to do chemo its TCx4... with no regard to whether or not that is actually effective on me.0 -
Lisey why do you say taking tamoxifen over an AI is a risk? You are premenopausal and didn't have to do chemo soisn't tamoxifen the right weapon for you?
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lisey....you probably don't realize but you are playing the blame the victim card when you say that there are things that we all did that probably contributed to all of us being here. That is not true. At. All. If you think microwaving your food contributed to you getting cancer and in the future never nuking your food brings you peace of mind...that is great...
That said....from my perspective and my knowledge of cancer, I find little comfort because no one has yet to find a definitive cause of cancer, a proven prevention for cancer or a cure for everyone with a cancer diagnosis.
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kathy...for premenopausal women there is evidence that for some, an AI and ovarian suppression may be superior..
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Yes, voracious reader I did know that but since Lisey doesn't fit into those categories I wondered why she said that. I am currently doing Lupron shots but my doctor doesn't think they are necessary for me since the studies show tamoxifen alone yo be effective. But I can't help but think that if ovarian suppression plus an AI works better for some more risky cases why not for all less risky cases
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kathy...the evidence IMHO is murky. While the evidence suggests it may lead to fewer recurrences for high risk younger women, it is going to take many more years to see if there is a genuine uptick in survival and the benefit exceeds the risks for most others.
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