Does anyone refuse hormone therapy altogether?
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Smallworld, there are a lot of factors that go into determining the risk of recurrence, but both the grade AND stage are very important. Combined, grade and stage just about give up the entire story. Low grade (grade 1 and some grade 2's) are slow growers that are generally non-aggressive. If they reoccur, locally in the breast, regionally in the nodes or distantly in other organs, it's usually because they were already fairly large at the time of diagnosis. When they do reoccur, it's usually after the 5 year mark and this delay in time is simply a reflection of the slowness of their proliferation, their non-aggressive nature and the time it takes for them to show themselves in scans.
Comparatively, a 1 cm low grade invasive tumor is always going to carry with it a lower risk profile, regardless of what stage it was at diagnosis as compared to a higher grade of the same size and stage. When trying to compare tumor prognostics stage for stage, there really is no reasonable comparision when one is low grade and the other is high grade because they're literally not the same disease process and don't have the same metastatic potential despite being the same stage. So grade is VERY important prognostically.
For example; a 5 mm grade 1, stage 1 IDC removed with wide surgical margins has a very low 5 year recurrence rate and is very, very unlikely to already be in the nodes or distant organs at diagnosis. On the other hand, a 5 mm grade 3, stage 1 IDC, also removed with wide surgical margins, is much more likely to reoccur within that 5 year time frame and also much more likely to already be metastatic at diagnosis.
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Very good material. Now, what about a Mastectomy,verses a Lumpectomy? My Oncologist, said if I had a mastectomy, instead of a Lumpectomy, that the chances of it not coming back in the same breast is 100%, so of course I had the mastectomy. After the surgery, he told me the rest of the story, Now, you need to watch for a chest recurrence. Make up my mine"
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MarieKelly, do you know how oncotype DX score and Ki-67 rates, compared to grade, with regards to recurrance?
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SMALLWORLD -
Since the possibility of a mastectomy was never presented to me for consideration, I've never done much research into the differences in recurrence risks between mastectomy and lumpectomy. However, I do know that mastectomy does NOT provide a 100% guarantee that there will never be a recurrence in that breast. There's always a small amount of breast tissue remaining even after a mastectomy and although the risk of recurrence in that remaining tissue is minimal (something like 1-2%), there's still going to be some risk remaning. From my prior years as an oncology nurse, I can tell you from that experience that the most common sites for a local recurrence after mastectomy are at the chest wall and the mastectomy scar.
FAIRY,
Ki-67 is one of the genes tested by Oncotying and when done through that test, I'm sure it must be far more accurate than when done at various labs where there could be problems with reproducibity and accuracy. But since it's just one of the numerous markers analyzed in Oncotyping, I don't think Ki-67, in and of itself alone, can compare directly to the Oncotype score. However, Ki-67 is one of the variables that can be used in common practice to judge the aggressiveness of someone's cancer and combined with other prognostic variables such as ER, PR and Her-2, the combination can probably be used to predict with some reasonable degree of accuracy what score range someone's Oncotype results might yield. That's assuming of course, that the labs doing the testing are providing accurate, dependable results.
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MarieKelly, thanks for the info, I get a little confused with all of the prognostic tests that are done, my tumor was graded between a 2 and 3, but I had a very low Ki-67 and low onco score, so I was trying to figure out how they put all that together......you are right, we have to assume that the labs are providing accurate results, and considering today my OBGYN's office "lost" my urine sample, I have to wonder!
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I'm hoping this link works: reinforces some of what MarieKelly is saying about lab reliability and Ki-67 etc. Thought it did a good job of detailing what we know about hormonal therapy from metastatic vs. adjuvant vs. neoadjuvant use and how different that can end up being. Good reminder that you can't carry assumptions from what we learn in some patients to others. What it doesn't do is a very good job of, I didn't think, was pointing out the differences between pre vs post menopausal women and how you can't assume the biology of the disease is the same, and it sounds like there are some young women on this thread
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Thank you MarieKelly, You are very knowledgeable. My daughter is a R.N. and she told me today, that she has seen alot of women, who had breast cancer, 40 to 50 years ago, are alive and well, with no recurrence, who some had a mastectomy,some may of had rads,and chemo, she is going to find out and if any hormone therapy, if it was even around back then. Why have these women, not been studied?. Just food for thought.
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kmmd, very interesting article, but I couldn't figure out what 2+ and 1+ ER staining meant? Anyone know?
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immunohistochemistry, they stain with antibodies for the receptors, and then judge it based on how much staining there is. Little staining 1+, medium 2+, heavy staining of the cell membrane with ER antibody 3+. Thus, the judgement from the pathologist that comes in and concerns about standardization. Some centers have gone to quantifying it, but when looking at studies with long f/u you're likely looking at 1--2-3.
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kmmd, right o, so if one was 100% ER+ would that be 3+?
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yes (hopefully
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got it......I think! shoot, I have learned more about science in the last 9 months than I ever did at school LOL!!
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FAIRY -
Something you might be interested in exploring re: your concern about low oncotype, low Ki-67 yet histologic grade 2/3 - a possibly explaination?? Maybe your tumor was really only a genomic grade 1. Now wouldn't that be something fantastic!!!
Gene expression superior to histology for breast cancer prognosis
Last Updated: 2006-02-27 14:38:12 -0400 (Reuters Health)
NEW YORK (Reuters Health) - Gene expression profile appears to be much more accurate than tissue grade in making a prognosis in women with histology grade 2 breast cancers, researchers report in the February 15th issue of the Journal of the National Institute of Cancer.
Dr. Christos Sotiriou and colleagues at the Jules Bordet Institute in Brussels, Belgium, collected data from 189 invasive breast carcinomas, using three gene expression datasets to assess whether histologic grade was associated with gene expression profile.
The researchers identified 64 estrogen receptor-positive tumor samples. They then devised a gene expression grade index by comparing gene expression profiles of histologic grades 1 and 3 tumors with the gene expression datasets.
Using the index, Dr. Sotiriou's team assessed data from 597 independent tumors to evaluate relapse-free survival time. They identified 97 genes that were associated with histologic grade. Most were involved in cell cycle regulation and proliferation.
Gene expression profiling was strongly associated with histologic grades 1 and 3 status, but histologic grade 2 tumors "spanned the values" of the index. For those patients, "a high gene expression index was associated with a higher risk of recurrence than a low gene expression index," carrying a hazard ratio of 3.61.
The authors conclude that "relapse-free survival was more strongly associated with gene expression grade than histology grade." In addition, the gene expression index "appears to reclassify patients with histology grade 2 tumors into two groups, with high versus low risk of recurrence."
J Natl Cancer Inst 2006;98:262-272.And the following (unfortunately very thick with medical jargon) for more detail about this fascinating subject. -
Sorry for the bad link - can't figure out how to make it work. Instead, just google "Understanding the Molecular Basis of Histologic Grade" and be sure to use the quotation marks to zero in on it quickly.
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MarieKelly, that just made my day as long as I am reading it properly!! I am at work but will read this more carefully once I get home and then go to the link you provided....I am boggled by all the info!
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MarieKelley, I haven't read the full link, but do you know if that research assumes a woman would be on tamox or an A/I?
Smallworld ~ I have the same question you do. We all know 20+ year survivors who did not have tamox or A/I's available when they were dx'd. I think the research MarieKelley has shared is part of the puzzle, but it's frustrating to me that most research is overly broad in terms of who it includes. Deanna
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You girls are sure smart. I can hardly understand it. Do any of you know the Nottingham score? its = 6, grade 2 thats whats on my path reports say.
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I am meeting with my med onc on Thursday to ask a lot of questions about the next step, after finishing rads. I have been doing a lot of research on all of the AI's, and frankly, the side effects are kind of frightening. Now, this does not mean everyone will have se's, but considering the way my body reacts to most medicines (and the hell I went through with secondary side effects from chemo), I am very hesitant to start on something that could really affect my quality of life, and my very busy job, part of which requires me to be very physical at times setting up boat shows and doing photo shoots. I have a list of questions to ask my doctor, and my DH is coming with me so he too can ask questions. Thanks for the info on the lifeABC, I just reviewed their information and it is helping me prepare for my appt.
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a
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MarieKelly, great link thank you! (I just copied and pasted into google and it came right up!), lots of info to consider, its amazing the difference between grade 2 tumors.
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Sorry, girls, but I did not understand. Is it saying that a grade 2 is more chance of a recurrence, than a larger grade? Help me out, thanks
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smallworld123, I don't think that is what it means, I took from it that some Grade 2's have a similar pathology to a grade 1 and some have the pathology of a grade 3, they are beginning to look at a bunch of other genes within the tumor that may give more info than the Bloomingdales-Richardson Score -
(I need to go shopping LOL!) I meant Bloom.......It seems to me that the Bloom-Richardson is pretty antiquated anyway, with the oncotype DX, there is sure to follow other tests that offer even more info (one can hope!), I posted on one of the other threads, that there were studies to start with a $16.5 budget, here is the link0 -
Thank you fairy49.
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MarieKelly--Thanks for that link. At my last appointment with my onc he said there really only exists grade 1 and 3, I didn't ask more at the time, end of day tired, he made sense and I was happy he told me to think of myself as more grade 1 based on everything, I have a large tumor, but that is because there were two and they measured them as one. A few days later I thought that what he said was a little wonky, but this paper helped me to understand him better. I don't know that it really changes anything for me, but at least I understand what he was talking about better.
Thanks,
Karen
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Just like everyone else I have been offered hormonal therapy. But here are my issues
Went to GYN as had not had an exam for 20 years. Realized I needed a baseline before Tamoxifen. Tamoxifen has been labeled by World Health Organization as a known carcinogen that causes endometrial cancer. So what she tells me is that my cervix is closed and that this is common among women who never had kids. She had a heck of a time even getting a specimen for PAP and HPV. As I was getting dressed I realized that if I did develop endometrial cancer and the cervix was closed, I woukd never know it until it was too late. Early warning signs of this are bloody dscharge post menopause. So I ran after the doctpr as she was heading for the next patient and said "If I start having bloody discharge, how will it get out? She then said it would "likely find its way out" and then moved on to the next patient. Ehen I got a copy of the t
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System cut off rest of my post.0
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I've chosen not to take any hormone therapy although I did have one positive node. I also had pure tubular BC (a very low grade type cancer), had a lx with extra wide margins (they thought I had DCIS around the IDC tumor, but final pathology showed none) followed by whole breast RADS. Since the BC diagnosis I have taken up exercising regularly (I was a slug) follow a pretty strict Paleo diet, use DIM, calcium d-glucarate and flax seed to modulate estrogen, have my vitamin D and thyroid levels monitored regularly . As Deanna wrote, most of us who pass on hormonals also make some big changes in our diets and/or lifestyles.
I can't say my oncologist was fine w me refusing tamoxifen, but she said it was my choice and odds are I'll be fine without it. Most of us are. For someone with my stats the odds are 80-85 percent that surgery and RADS were enough, meaning there would be 80-85% chance I'd be taking tamoxifen for no reason. Of course that means a %15-20% chance of a reccurrence without Tamoxifen, which would be cut it to 7-10% by taking it-leaving me with a 7-10 percent chance of a recurrance even w tamoxifen, which by my calculations means there would be about a 90-93% chance taking tamoxifen would not change my BC prognosis..
Not enough to convince me to take it-but it pisses me off that they seem to think this drug that works about 1/2 the time is good enough-they don't seem to be in any hurry to come up with something better or a way to figure out who can truly safely pass on it-AIs have about the same effectiveness level, but a different side effects profile. These are drugs they prescribe regularly to women whether they need them or not (because they don't know who does and who doesn't) and that only work 1/2 of the time anyway and have some really bad side effects, and hardly anyone seems to think this is unacceptable, they just keep prescribing them year in and year out! Unreal! So many things about having BC piss me off and the limited and ineffective treatment options rank right up at the top of that very long list. This is all we've got-take it or leave it. Blech!
Now if tamoxifen cut my recurrance rate to zero or even by 75+% or if tamoxifen didn't have some nasty and potentially life threatening side effects, I'd jump on that bus, but as it is I've taken a pass. I talked to my OC about this a great deal and she says basically anyone who has ER+cancer is going to be offered a hormonal whether they need it or not, because the medical profession has no way of knowing who really needs them or who will actually benefit from them. My onco said given my stats my decision is reasonable. I talked to her about the pressure some women on here seem to get, like do the hormonals or you will die stuff, she laughed and told me that if she thought it was that important she'd tell me. Given that my mother progressed to stage IV BC while taking tamoxifen and ultimately died of her BC I may be more skeptical about putting all my eggs in that basket than most. I would certainly urge anyone accepting hormonals to also make positive diet and lifestyle changes because even throwing everything the medical profession has to offer at BC all too frequently doesn't work/isn't good enough.
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From what I know about mucinous cancer you have had some very aggressive treatment for this.
For such a small percentage benefit I would refuse hormone treatments. They disrupt every system in your body, and the quality of your sleep in many people so the benefit from them could be wiped out by the side effefcts such as incfreased inflammation in joints, poor and less sleep, limitations on exercise, not to mention the overall negative impact on qualilty of life.
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THe thing about statistics is they are so misleading - so anti hormonals cut recurrence risk by 50%......BUT that is not a real 50%, its 50% of the risk you have, which could be just 20%, so in reality they cut your risk by 10%...........................thats a 40% difference already. In my humble opinion diet, exercise, very limited alcohol and good sleep could eradicate a good 50% of that 10% so you are left with a 5% benefit.........
I also think all oncologists should have to take drugs for six months that make them feel lousy every day and night (as 70% of women who take them seem to get side effects) and then see how they feel about them, often I think they prescribe them as they feel helpless and guilty if not doing something in the face of a scary unpredictable disease called cancer.......
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I am postmenopausal but my original onc put me on tamoxifen for 2 years and then to switch to an AI for just 3 years due to my thin hair. I lasted 4 months on the tamox. then quit due to lack of sleep ,fatigue, lack of concentration and various other problems. Three months after quitting I was exersizing three times a week at the gym, even considering training for 5k until I overdid it on my ankle. Then came my annual physical and my primary care prescribed effexor generic in the hope of pursuading me to go back on the tamox. BIG mistake. I know many ladies find effexor helpful but it was a disaster for me from the first pill. I had to be really careful driving, stayed in bed all day, lost all motivation and felt like sleeping most of the day. I stopped going to the gym. I took those evil pills for 6 weeks hoping for an improvement but it only got worse. I stopped taking them and it is only after a month off them that I have had the energy to go back to the gym.The side effects are finally starting to go away. The one good thing about the effexor was that I lost my appetite, my stomach felt weirdly nervous and clenched and I went from 141 to 135 pounds in 6 weeks without trying! So I would have liked to have kept on it if it had not made me feel so bad!!
Now I have a new onc who has pursuaded me to try Arimidex generic. I picked up the prescription but told her I will not start them until after I have my trip next week (hiking and late nights involved). I have been so weak due to the effexor that I have desparately been trying to get back in shape quickly the last 10 days as I have been looking forward to this trip for months but still feel fatigued.
I will give the Arimidex a go but if it messes me up too much I will be done.I understand the possible consequences but I am more scared of losing quality of life than life itself. I am 60 and the trip is part of my bucket list. Of course my situation is different to many ladies, an intolerance to many meds, my age, no kids, so my priority is to do the things I really want to do while I am still able to.
I am sure the meds save many lives and I would never encourage anybody not to take them. Its just the way I feel personally and for me the reduction of the chance of recurrence from 16% to 8% (who really knows) is not enough to scare me into taking them should the side effects severely affect QOL.
I am crossing my fingers that I may be one of the lucky ones who have few side effects though!!
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The realisation that not only do I have to live with lymphoedema, but also long term hormonal treatment is so depressing me, that I would rather be dead. I wanted this journey to be over after a year's worth of surgeries, chemo and radiation therapy, and it feels like it never will be. I recently stopped taking my Aromasin (against oncologist advise) because my depression/anxiety/extreme emotionalism seemed to have gotten completely unbearable since I started those tablets (and the oncologist I saw didn't give me any alternatives) , but I am still on Zoladex injections. I don't know what to do - my stomach problems seem to have settled a bit since stopping the tablets, but I'm still very distressed mentally and emotionally, and wondering if it is also caused by the early menopause induced by the Zoladex. I wonder if quitting the Zoladex and going the Tamoxifen route would be better, but my great aunt developed uterine cancer from it after breast cancer treatment. And frankly, I want my body back. I want to walk away from the hospitals and never come back - I want to feel normal, not medded-up. I don't want to have to take anti-depressants to counteract the effects of the endocrine treatment, which my husband insists is needed atm for the sake of the family. And I can't seem to make the oncologists understand that I don't want to live a long time. I'm not yet 40 and am stuck with lymphoedema requiring constant mangagement. The thought of 40-50 years of that, with it just getting worse and worse as I get older and less active freaks me out. Why isn't surgery, chemotherapy and radiation therapy enough? What if the cancer is already gone, and I'm just going through hell and back, side-effect-wise, for no benefit at all?? Why will no oncologist have a respectful discussion with me about this, rather than always saying you are young, so we want to treat this aggressively? And when that comment goads me into saying I don't want to live a long time feeling like this, why do they shut down medication discussions and refer me to a psych?
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