Will 30% of Early Stage (1-IIIA) go on to metastasize??
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Beesie, how, in Ontario, have you managed to get an annual MRI?
I'm 5 years out now and I've not had a scan of any kind, ever - even in the diagnostic phase.
On my own, I got my GP to order an axillary ultrasound a year after my mastectomies. My MO gave me significant grief over doing that.
I have a very hard time accepting that there is no benefit to the patient when mets are detected earlier rather than later. No, it won't change the inevitable outcome but surely it will have some impact on QOL until that outcome arrives.
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kmpod, I had a UMX and until recently I had extremely dense (category 4 density) breast tissue in my remaining breast. Based on that, it was the Radiologist's recommendation that I get annual MRIs. Over the past 2-3 years, my breast density has finally been declining (I've been post menopausal for over 10 years) and this year the Radiologist finally felt confident enough that my mammos are effective and MRIs are no longer necessary. So this was the first year since I was diagnosed 11 years ago that I didn't have an MRI. Part of me is a bit nervous about that, but mostly I'm relieved and happy that my breast density is finally lower. And I have to admit that after all these years of being checked every 6 months (my annual mammos and annual MRIs were scheduled 6 months apart), it was wonderful to not have that mid-year check and the nervous wait for the results. Of course if my mammo in a few months shows any problems (other than the usual cysts that I always have) I may regret not having had the mid-year MRI. But for now, I'm good with it.
If I'd had a BMX, I'm sure I wouldn't have been getting the annual MRIs, or any other scans for mets. But that's not unusual at all for those with early stage breast cancer - it's certainly not just an Ontario thing.
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I just wanted to weigh in on this thread. 24 years ago I was a stage 1, receptor positive (that's what they called it in those days). I was in a clinical trial for tamoxifen after having a lumpectomy and radiation. that breast is still clear. My treatment was considered new and somewhat not orthodox. i was accepted into the trial due to my age (32) and my tumor.
I now have stage 3b IBC/IDC in my other breast. Back then BC was grim no matter the stage because the treatment was usually a mastectomy and radiation and that was it. My tumor board at the University of Chicago never really confirmed my stage, they just said it was very early, when pushed they said stage 1a, but used the word cured throughout. I went on my merry way until this new diagnosis. I am personally somewhat ashamed how ignorant I was to statistics, treatment etc. I had no scans, onctotype testing, genetic testing. None of that was available.
I felt I had done BC and would not have to 'do' it again. Knowledge even if grim is power, and please this forum and others is for us to share, support and learn what we can even if we don't agree. Some people are very fact based, some not so much. One thing for sure there is room for both on BCO.
I feel the same as Kbeee. If you are in the 1% that something happens too, then it becomes your personal 100%. I too personally know 4 stage 1 ladies that progressed to stage 4. I also know more than 5 stage 4 ladies that have been NED for over 5 years. 1 was de novo and the others progressed from stages 2. Odd none are on BCO, though they think it's great I am. That's only 9 women , 10 if you include me, but in my world that's a lot of women. All different tumor types, grades etc. I also know of several women including family members that were stages 1-3 that are 5 years from diagnosis. Some on tamoxifen or ai's, some like me TN. No progression and they don't seem to be worried about it except for once a year scans or check ups. May I get to that mindset
I hear every week how rare IBC is. Well for me it's not. But in actuality only 5-6% of breast cancers diagnosed are IBC? (traveltext correct me if I'm wrong). So we each have to weigh how statistics will direct us forward.
All of this is my humble opinion , and my personal experience. So in the end you can either say I've had a very long remission or I was cured? I asked my current MO about my previous cancer and she just smiles and says you choose the word. Interesting.
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Arista928 I love what you said. Vigilant but not in fear. I'm working on getting there.
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Or alert but not alarmed.
According to cancer.gov IBC is from 1 to 6 percent of cases diagnosed in the US.
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To underscore how statistics are not perfectly predictive, the chance of coming out of a colonoscopy with a perforated bowel is somewhere between 1 in 1000 (0.1%) and 1 in 2000 (0.2%), depending on which source you consult. In fact, in medicolegal parlance it’s called a “never-event,” which means it should never happen and if it does is likely to have been due to negligence. Well, this was only Bob’s second colonoscopy ever, and he got perfed. Even "1 in 2000 cases" means someone still had it happen. Unfortunately for Bob, it was him.
If it happens to you, it’s 100% regardless of what the stats say. And if the stats say 90% and it never happens, then for you it was zero.
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I think it's important to distinguish between a recurrence of the original cancer (localized or metastatic) and a new primary.
I am low risk to recur, but relatively high risk to develop a new primary. If I develop a new primary, it will be no different than if I were to develop a different type of cancer or heart disease or something else... it will be a new disease. I am alive, I am getting older, and every year my risk of disease, of some sort, increases. That is the nature of life.
I certainly hope that I don't have to deal with breast cancer again, but I have always understood that just because I've already had breast cancer doesn't mean that I'm immune from developing breast cancer again. And if I do, and if it's a new primary, it won't change the facts of my earlier diagnosis, including the fact that in all likelihood (fingers crossed), I was effectively 'cured'.
ChiSandy, while I know that stats are not predictive of what will happen to any one individual, personally I'd rather go into a situation where there is a 1 in 2000 chance that something bad will happen, vs. going into a situation where there is a 90 out of 100 chance that something bad will happen. I understand that in either case, I might end up having the bad thing happen, or I might end up not having the bad thing happen. But given a choice between having a 0.2% risk of something bad happening vs. a 90% chance of having something bad happen, who among us would not prefer the 0.2% risk? I'll bet even the people posting here who put down stats and say that they are meaningless would pick a 0.2% risk vs. a 90% risk.
Edited for typo only.
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thank you Beesie, totally agree
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Kbeee, got it, and the situations you describe make me completely furious. It is another reason I am so ambivalent about the whole "cured" rhetoric, because oncs buy into it too. Mine told me last year, at the 4-year mark, that soon I could consider myself cured. I yelled at him, I am afraid, and told him he ought to know better than tell me such claptrap. He ended up apologizing and agreeing with me. My BS, on the other hand, is extremely vigilant and careful.
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I had a new breast cancer after 12 years but when I asked my BS if it was a recurrence she said it doesn't matter either way and it's a moot point now. Both tumours were ILC, ER+ PR+ Her2-, same breast, the location slightly different. I'm confused about whether it was a new cancer or a recurrence. The PR percentage had dropped to 5%. I suppose it wouldn't have changed my treatment, but it's probably good to know what it was.
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I hear about being vigilant. I understand about being vigilant about finding a new primary (which I have had). But I don't understand why I should be over vigilant about mets as if it is such an issue why wouldn't they screen for them? On the other hand I almost expect to develop mets but will just wait till I have shortness of breath, intestinal symptoms, bone pain or some other symptom. I like your approach kbee.
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gerrib - I agree. When I go in for my now 6 month check up the "pat down" goes like this: they poke around my cancer reconstructed side (checking for swollen lymph nodes which I do as well), the other side, my neck and feel around my abdomen (checking liver?) - that's it - no blood work/scans or anything else. Sometimes I wonder why I go - I understand that because I'm still on hormone therapy I'm in "treatment" but I really don't feel like I'm gaining anything by keeping up with these appointments. I was telling my brother the other day and he was upset that I was even considering stopping (which I would never) because he truly believes that as long as I being "followed" I will remain "safe" - I get that we must remain vigilant to check for local recurrence or a new primary but my check ups certainly do not screen/check for distant recurrence (other than "so how are you feeling"!)
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Rosemary you are being appropriately vigilant. You have educated yourself about your disease, you follow your treatment plan, you keep your appointments, you're aware of what would be something you should report and presumably, if you had a concern that your doctor didn't take seriously you would seek another opinion. Vigilant does not mean constant screening, it means being aware. That was a great word, whoever said that.
Here are two examples of not vigilant. Both are educated women who are capable of learning about their disease but choose not too. One women was DCIS. She did her 5 year plan oF treatments, but when her mo visits stopped she decided to stop getting mammos too because she was cured. Makes no sense at all, she still has breasts, could get a new primary or a recurrance, but she's oblivious.
Other woman. Followed her treatment plan, but doesn't even know what type bc she had. Doesn't report any new symptoms because she doesn't want to be sent for more tests. She knows nothing about recurrance or what symptoms would be concerning.
If you are on this forum you are probably vigilant. You are making an effort to educate yourself. But many women don't. I blame pink washing and the idea that there is a cure.
Yes, we are told there is no difference in survival between screening for mets and waiting till you're symptomatic. But that assumes that if you have a concerning symptom you report it. Women who are uneducated about bc may be more likely to ignore the symptoms and wait too long to report, which I would think would impact survival.
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ThinkingPositive my oncologist said the percentage doesn't matter. What she mean is you can't be a little bit pregnant. percentage means the amount of positive cells in the sample.
Here's another way I look at it. If you look at the invasive part of my tumor it was 5.5cm. I was only 30% ER/PR+ BUT 100% of a tumor that's 1cm is a lot fewer cells than my 30% of my 5.5cm tumor. So size of tumor also matters as well as how aggressive your cancer is, lymph node status, etc. You can't just look at one part. It's the entire picture.BTW I'm a stage IIB triple positive.
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Bosum, I would have thought with a grade 3 and and oncotype of 20 that chemo would be an absolute? i would have made the same choice you did.
Are you on Gabapentin, Lyrica or Neurontin for your neuropathy?
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I cannot speak to any individual case, but one should not assume that for all node-negative ("N0)" patients with a grade 3 tumor, and an Oncotype Reccurrence Score of 20 (associated with an average 10-yr distant recurrence risk after 5 yrs of tamoxifen of 13%, per chart 1 of a recent node-negative report posted elsewhere) that chemotherapy is an absolute. This is an area where a judgment call must be made in view of all relevant factors, as well as personal risk tolerance of the patient. Additional testing, such as by MammaPrint may be considered. To quote a recent ASCO guideline: "whether to use chemotherapy for patients with distant relapse risk between 10% and 20% (recurrence score of 18 to 30) remains unclear." They explain: "As mentioned earlier, the benefit of chemotherapy for patients with an intermediate Oncotype DX recurrence score (distant relapse risk between 10% and 20%) remains uncertain at this time." This is why the results of the TAILORx trial in the randomized cohort with Recurrence Scores of 11 to 25 (an investigational range) is so eagerly awaited.
BarredOwl
[Edited to add "average"]
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Chemo only helps Oncotype of 20 by 3%. That's not great, especially considering the chance of getting lymphoma or secondary cancers and conditions from the chemo itself is greater than that - and probably higher in my case. Most 20s do NOT get chemo - as most oncologists say it's overkill.
To add to what BarredOwl says... I am an Oncotype 20, and a grade 2. my oncologist insisted I not do chemo. I'm 41, so much younger... but she felt a 20 score is a definite no to chemo. I couldn't feel as confident, (especially that I had lower PR+ and a 35% ki score).. so I ordered the Mammaprint as a second opinion.It came back LOW RISK, so no chemo it was. I'm hoping when the TailorX for intermediates comes out it will show that low risk is in the low 20s.
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I feel for those of you in chemo grey zone. That must be such a difficult call to make. One "advantage" of a stage 3 dx is that it is pretty much a given that you throw everything and the kitchen sink at it
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Wow, things have really changed since I've been on a thread talking about oncotype scoring, then! Ladies in the low teens were considering chemo!! What do they consider high now???? Low was anything under 10...medium was under 20...and over 20 was high. What is it now?
I would think the grade 3 would add to the mix, no?
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They don't do routine scans for mets because it's very damaging to do so much. As for why bother with the pat downs.. well 2 or 3 "eyes" are better than 1. Niether I nor my rad onc didn't catch a lump on my clavicle whereas my onc did and sent me for u/s. You're talking cancer here so there is no being over cautious. Thankfully the lump is benign but what if it wasn't?....
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@momine I said the very same thing here or in another thread. There was no question of throwing the book at it for me. I feel bad for stage I or II folks who are asked to make the call.
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Hi Barbe:
It is common to consider a variety of additional factors, such as grade, with an intermediate Recurrence Score of 18 to 30, as indicated on the Genomic Health web site (scroll down to list of factors):
The standard risk category ranges for the Oncotype test for invasive disease based on initial validation studies are currently the same in node-negative and node-positive patients, and have always been as follows:
Low-risk: Recurrence Score < 18 (i.e., 0 to 17)
Intermediate-risk: Recurrence Score 18 to 30
High-risk: Recurrence Score ≥ 31 (i.e., 31 to 100)
The prospective TAILORx trial in node-negative (N0) patients and the prospective RxPONDER trial in certain node-positive patients are using different investigational ranges, but they are still in progress.
Late in 2015, some preliminary results were published from the TAILORx trial in node-negative ("N0") patients scoring 0 to 10 who received endocrine therapy alone. These results showed that the test is quite robust in this sub-set of "low risk RS" patients (N0, RS 0 to 10). However, these results (from 0 to 10 only) did not change the standard ranges. This is because they do not speak to outcomes for those with other scores (11 and above). We are still awaiting TAILORx trial results in its slightly differently defined investigational "intermediate" risk (RS 11 to 25) and investigational "high" risk (RS 26 and above) groups, so the standard ranges are still in effect (<18; 18 to 30; ≥31).
The on-going RxPONDER trial is still evaluating whether adjuvant chemotherapy is beneficial in patients with hormone receptor-positive, HER2-negative breast cancer with 1-3 positive lymph nodes and a Recurrence Score of 25 or less.
Of course, the investigational ranges reflect considerations of the magnitude of recurrence risk associated with particular RSs, and patients may wish to discuss this with their MOs.
BarredOwl
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gerrib...why do you almost expect to develop mets?
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Hi kayb:
Thanks for that information.
I note Lisey said "and conditions," so I don't think she was speaking only to secondary cancer risks, but to other serious adverse side-effects as well. In this regard, according to this 2016 ASCO guideline regarding biomarker tests and related decision-making (page 6, Clinical Utility, paragraph 2; or search "3%"):
http://jco.ascopubs.org/content/early/2016/02/05/JCO.2015.65.2289.full.pdf
"Several studies have suggested that the odds of fatal, life-threatening, or permanent life-changing toxicities are at least 2% to 3% in healthy women who participate in prospective trials."
BarredOwl
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Very interesting in this 2016 ASCO guideline for list of biomarker assays if a patient was node positive - that the clinician should not rely on a particular assay for adjuvant chemotherapy. Many were noted as "moderate" in reliable or insufficient evidence. Looks like if someone has positive node(s) it is still not a strong diagnostic tool.
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Exactly, I"m including ALL conditions, specifically calling out cancers, but other conditions as well, such as heart valve problems etc.
Now for me, having had melanoma, my percentage for melanoma popping up due to chemo is much higher than 3%, so chemo again doesn't pass the benefit / risk test. If chemo would have reduced my chances by more than 20%, then yes, I'd be doing it..
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CP, as far as I know, that is correct. No Oncotest was done on me.
Apropos, apparently a new study suggests that another recurrence test called EndoPredict may be more reliable than the Oncotype. I hope more tools are developed in this area, including for those of us with higher stages, to better finetune treatment and folow-up
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I was one of those in the 1-3 positive nodes category (and extensive lvi) with a low oncotype Dx of 13. Chemo not recommended due to 3% difference with or without. I am strongly ER and PR positive low Ki67.
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Well at the risk of sounding under impressed - we have made progress in genetic diagnostic testing for node negative patients but not for node positive patients. A few pages back someone was optimistic and projecting about progress for better treatments 10 years from today. I was that person 10 years ago - although I am very grateful to still be alive today after my stage 2A dx . I had hoped for some vaccine therapy approvals, better chemo and less toxic treatment options. However, I feel much has remained the same with the exception of some additional chemo combo treatments. Yes, better screening for earlier diagnosis and treatment tools but no real breakthrough for MBC patients and no way to prevent progression. It still seems like time is luck until luck runs out for some.
(Oncotype was not allowed for me in 2006 with 1 positive node. Like Monopoly pass Go directly to Chemo.)
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Molly50...I am the same as you but ki67 was 28%. And a grade 3. No Oncotpye done and I will always regret not having done. But with grade 3 I would have done chemo anyway. But it would have been nice to know results.
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