Stage I, grade I, but with LVI. Chemo yes or no?

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atanea
atanea Member Posts: 58
edited September 2016 in Stage I Breast Cancer
Stage I, grade I, but with LVI. Chemo yes or no?

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  • atanea
    atanea Member Posts: 58
    edited February 2013

    Hi everyone,

    I'm having a hard time choosing if I should go on chemo or not. I have a stage Ia, grade 1, ductal invasive tumor ( 1.3 cm, SLN -, RE+ 100%, RP+ 100%, HER2-, Ki67 < 15%, BRCA1-, BRCA2 -) but there is LVI (lymphovascular invasion) documented in the initial biopsy and after, in the tumor analysis, the report also says: ...focal angioinvasion...But no mets were found (bone CT, lungs XR, etc.)

    I had a lumpectomy in 15 January with clear margins (>=0.5 cm) and did 2 IVF (with FSH+letrozol) cycles after, to preserve fertility, as I have no kids yet. It was a hard decision, I probably have know more risk of a recurrence, but doing chemo or waiting more 5 or 10 years with Tamoxifen would probably kill any chances of having a kid later.

    Meanwhile, I consulted 3 private reputable oncologists, they all said a very big NO to chemo, my surgeon also says NO to chemo. The treatment they all recomend is Radio and (at least) 5 years of Tamoxifen + 2,5 years of Goserelin (ovarian ablation). None of them did care much about LVI, only one talked about it and only to say that it's a bad factor, together with my age, but all the others are good, so, no chemo for sure.  They were secure and didn't show any kind of doubt. For them, chemo risks were higher than benefits, in my case. All doctors also discussed my case in a board (so, 3 different boards) before give me their final opinion. I was ready to accept I was not goint into chemo and I was very happy with that. It was such a relief.

    After that, I had to go to another doctor, in a public hospital, to start hormonal therapy (it’s not supported by my health insurance) and I found he has a different opinion, he thinks LVI and young age are very bad factors and I should go on chemo.

    I couldn’t believe it. I had already forgot about chemo. I’m not sure I can deal with it now. But what if he is right?

    Everything I read about LVI says it is a very bad prognostic factor, survival rates are less and that pushes me to the chemo side. On the other hand, if they say chemo doesn’t kill cancer cells that grow slowly, why take the risk to do chemo? But if that is true, then looking at the Ki67 marker (is a marker for cell proliferation) would be enough to decide on chemo, everyone with a low ki67 marker would not go into chemo, independently of other factors, but I don’t think that’s what happens in real life.  

    I'm suposed to start adjuvant treatments next Wednesday and I don’t know what to decide. I can’t even sleep anymore. It looks like I’m playing poker with my life. I’m also  mad as I was not informed properly about the implications of LVI, I was told I had “an old ladie tumor” and had the best chances for survival, but it seems to me that’s not true with LVI...

  • doxie
    doxie Member Posts: 1,455
    edited February 2013

    atanea,

    Sorry you have to join us, but welcome.  Hopefully we can help you.  

    Could you have a MammaPrint or Oncotype assay test on your tumor tissue?  This would help you in your decision, or help you accept what the three oncologists and boards have told you.  It is normal to question whether or not you are making the right treatment decisions.  It's also not unusual to have a dr with a conflicting opinion.  Is this doctor an oncologist or a general practrician? Regardless of the LVI, of which there is question of its significance, if chemo doesn't work on slow growing cancers, there is not much point in putting yourself through it.  

    You might also post your question on the Stage I, Grade I, pre-menopausal in this same forum.  These women have more experience than I do with your specific circumstances.  I'm post meno and chemo was a given because of very low PR and high Ki67.  But it still only gave me a 7% decrease in actual risk.  

  • Colt45
    Colt45 Member Posts: 771
    edited February 2013

    Husband/ caregiver here...

    Fwiw, my wife's Onc said that LVI was 'another risk factor' and that patients with negative node disease who might not otherwise be doing chemo could be recommended to do chemo if they had LVI.

    There does not seem to be a ton of information out there on LVI.

    This, to me, is another example of the frustrating nature of the treatment decision process with breast cancer.

    Why isn't there more of a definitive conclusion on the significance of LVI?

    Could LVI go unnoticed in patients?

    Have people with LVI not gotten treatment they possibly could have benefitted from as a result?

    My wife is 41 and had 1 positive node. Chemo was recommended based largely on this---and our 2nd opinion was at MSK.

    Her initial pathology said 'LVI: not present', but then another pathologist looked at the slides and wrote: 'few foci suspicious for LVI'.... What the heck is THAT? Is it LVI or not? What a cop out. It's exasperating. Our decision was made irrespective of this 'suspicious' LVI----but what kind of decision were we supposed to make if she had no positive nodes? Do chemo because 'few foci were suspicious for LVI'?

    When the significance of LVI hasn't even been clearly defined?

    I supposed we would have pushed for the Oncotype Dx if no nodes were positive... but even then, is Oncotype Dx validated for LVI?

    Does anyone even know?

    In our case, the expert basically said: "you MIGHT have this. I'm not saying you DO. You MIGHT. Regardless, we don't even know the ramifications if you DO have it." Oy! Thanks for NOTHING, Ms. Pathologist! How is anyone supposed to make a decsion based on this sketchy information? But we were doing chemo anyway.

    YOUR case is less clear. I'd get the Oncotype Dx, then ask your Onc to review all of your factors with you again. I know I'm not really helping you as much as I am commiserating with you regarding the gravity of the decision you must make without the facts being nearly clear enough for comfort. Best of luck with all of this.

  • rozem
    rozem Member Posts: 1,375
    edited February 2013

    i echo colt's frustration on the the lack of info on the prognostic indicators for LVI.  I was given rads because of LVI, grade 3 and her2 positive disease and no positive nodes.  My rad onc said that i was at higher risk of local/regional reccurance because of LVI.  My first path report (based on a biopsy only as i had neoadjuvant chemo) said suspicious for LVI, second path report confirmed LVI.  However ive met many women with LVI, no positive nodes are were not recommended rads.  Very frustrating - was I overtreated? were they undertreated?  who knows -

    as for your situation - grade 1 is the slowest growing and you are 100% er and pr positive so tamox would probably benefit you more - remember chemo attacks fast growing cells.  We r not doctors so at the end of the day we are just telling you what we know/have learned in our experience.  You already rec'd 3 opinions - were they at 3 different institutions?  I find that getting a second opinion or going to tumor boards within the same hospital is an excercise in futility - they all think the same.  I would get a second opinion at a different hospital and with a MO - BS are not the ones who should be advising on chemo.

    good luck with your decision -

  • mdg
    mdg Member Posts: 3,571
    edited February 2013

    I feel your pain on the lack of information on LVI.  I did not have LVI after core biopsy but had it after the tumor was removed.  I did do oncotype and my score was 17.  I was 45 years old at diagnosis with a 4 year old son.  I got two opinions-one said no chemo and the other thought I could benefit from chemo.  I was initially diagnosed as grade 1 but then they changed the diagnosis to grade 2 because some cells appeared more like grade 2.  I had to make the decision on the chemo myself.  The main reason I did chemo was because of LVI...it scared me because nothing I read was good about it.  I did TCx4 for chemo and was done in 9 weeks.  I used cold caps to keep my hair.  I am glad I did the chemo.  I can look back knowing I did everything possible to fight this.  Good luck with your decision......I know how hard it is!

  • Colt45
    Colt45 Member Posts: 771
    edited February 2013

    Regarding the uncertainty surrounding an LVI diagnosis, I was reading whatever I could find on it (and there wasn't much).



    There were a few studies trying to determine if LVI was an independent prognosticator. I read one where the conclusion was that LVI was an INDEPENDENT prognosticator----but get this----ONLY if it was accompanied by other high risk prognostic factors... Wha???? That statement is the very definition of something that is NOT INDEPENDENT!!!



    LVI sounds like a bad thing. It sounds like an issue that requires systemic treatment.



    But, even the rare study that tries to identify the independent risk of LVI stumbles all over itself.



    I'm convinced we just don't know (which is just unacceptable).



    Our breast cancer 'science' is really (in a lot of cases), just fancy math.



    I'm not telling anyone here something they don't already know.



    People do studies and crunch data for correlation-based conclusions. But It's just data analysis... It's not the cause and effect SCIENCE we need to solve the damned problem.



    LVI sounds bad. But there appears to be no definitive answer regarding it's independent effect.



    The best answer seems to be that you opt for the treatment that you can live with doing or not doing. We are doing chemo because of the 1 node and age. We still don't know definitively if we have LVI---or what it REALLY means if we do.



    Next we have to decide on rads (but that's another thread).



  • mdg
    mdg Member Posts: 3,571
    edited February 2013

    One way that LVI was explained to me was "there is an established path that cancer could have spread by blood".  When described this way, it sounded no different than having a positive node in my mind....that was just my thought.  Clearly there is nothing that really shows that....It just pushed me to do chemo.  Everyone has to think about things for their own personal situation and make a decision about what is right for them personally.  There is no one right answer.  For me my young son and being in excellent health (other than BC) pushed me to opt for the chemo.  I don't know if it helped me or not...I will never know. I do know that I could not face my son if I refused chemo and the BC came back.  If the BC comes back (knowing that I did do the chemo), I will not have regret...I will know I did everything I could to kick this.   I too was very frustrated by the lack of studies and clinical information available on LVI. My one surgeon said that there is potential that LVI could even be caused by the biopsy.....I sure hope not! I wish I could offer more information to you gals on LVI...but I can't. 

  • atanea
    atanea Member Posts: 58
    edited February 2013

    Thanks everyone for your reply,

    In a few hours I'll know the opinion of another oncologist who works at the same hospital as the doctor that thinks I should go on chemo (he is a surgeon, not an oncologist), the opinion of this onc will be the final one, at least at this hospital. The other 3 onc. were at 3 other different hospitals. Thus, 3 different boards. Tomorrow they will be 4. I don't think it will make it better to go for another doctor opinion.

    Unfortunately, I can not do the only test that would help me in this decision (Oncotype DX or MammaPrint) because I can not afford it, and where I live this test is not done by default at local hospitals, so, if you don't have the money, too bad..

    I think they choose not to talk about  LVI, like some of you said probably they don't know much about it, but that doesn't make it better.

    I'm suposed to have negative nodes (well, there were 2 SLN at the lymphoscintigraphy, but the surgeon only found one at the surgery day, and that one was - ), but even if I had 1 or 2 or more positive nodes the problem would be the same: if the chemo doesn't kill  slow growth cells, why would anyone with a grade 1 tumor, low ki67, RE100+ and PR100+, HER2- do chemo, in any case? Why are people doing it? What is missing here?

    If the chemo had no risks I would go for chemo, for sure. But there are risks, leukemia, chemo brain (well I already have that even without chemo) and it will weaken my immune system (that it's supposed to figth cancer cells).  If they told me it would give me more 7% chances of survival, than I would go for it for sure, but they don't tell me that...I think they simply don't know, and adjuvant!online doesn't help, it doesn't include Ki, LVI, etc..

    I came from a scientific area, and all this seems ilogical. If  the slow growth factor is the only one that matters why even do the oncotype DX? Why isn't everyone choosing chemo only based on the Ki67 factor?...so...if they go for a more extensive test, that's because others factors count? 

    And how can I have a tumor that is "so well behaved" that everyone tells me it's a less agressive one, that  grows slowly,  but it has LVI?? If it grows slowly and is less agressive why on hell does it have LVI? I know some people with grade 2/3 tumors without LVI! Ok, they may be false negatives, but why aren't those oncs. concerned?

    I've already taken some hard decisions, choosed lumpectomy, choosed to go on fertility preservation, agreed with my surgeon who didn't wanted to do axillary dissection even if SLN + (a lot of other surgeons are against this), disagreed with my surgeon when he decided there was no need to do an aditional node biopsy in some suspected axillary nodes found before the SLN procedure (I did the biopsy anyway, but the 2 suspected nodes where neg. and thereafter SLN - too).

    but this one ...I just can't decide...

    I may just toss a coin in the air...

  • atanea
    atanea Member Posts: 58
    edited February 2013

    Meanwhile, the decision was made. But, well...not by me...the oncs that work in the same hospital of the surgeon that want's me on chemo don't agree all with him and they told me today they decided together against chemo. Their decision is final and my opinion it's now irrelevant to them. So, I have know 4 oncs from 4 different clinics that don't want me on chemo, so even if I want chemo, they will denie it to me.

    As strange as this may look, I'm relieved, I never trust docs 100% and always like to have a word in final decisions, but I just didn't feel ready to take this decision on my one.

    Well, starting radio today and Tamoxifen and Zoladex in the next days.

  • SylviaT
    SylviaT Member Posts: 1
    edited February 2013

    I also had focal LVI in my path report and, also with a science background, did lots of digging around in papers, all predicting poorer prognosis.  I found a very useful paper which differentiates the extent of LVI, which basically says that non-extensive LVI doesn't have a worse prognosis.  It's at http://annonc.oxfordjournals.org/content/18/10/1632.full

  • Colt45
    Colt45 Member Posts: 771
    edited February 2013

    @SylviaT: interesting article. I wonder if "few foci suspicious" on a path report is considered extensive, intermediate, focal or what in this study.



    I know some paths include the word "extensive" when it is.



    My wife's said "not present" on 1 path report and "few foci suspicious" on another.

  • Colt45
    Colt45 Member Posts: 771
    edited February 2013

    @ atanea:



    Here's hoping that when you're 90, you can tell somebody worried about LVI and chemo 'not to sweat it'.



    I'm happy that you are at peace with your plan and it is encouraging that LVI doesn't mean chemo for everyone BY everyone.

  • MrsH
    MrsH Member Posts: 96
    edited March 2013

    I'm having a tumor board look at my case and ONC called yesterday to say that the pathologist is concerned about LVI. Would love to look at that link SylviaT, but it's not working :-( Waiting for these experts to figure it out, no fun...

  • mdg
    mdg Member Posts: 3,571
    edited March 2013

    Call the company that does the oncotype test. They have a patient assistance program to help people that can't afford the test. They can tell you if you qualify for their program. Give it a try. You have nothing to lose!

  • lmencken
    lmencken Member Posts: 79
    edited September 2016

    My oncotype is 20. I was diagnosed at 47. Polled and read and researched. My MO said it gives him pause. Another oncologist said do it. My Surgeon said stats say don't do it however she is biased because she has a patient my age similar score with LVI and there was a recurrence. She told me if I were her sister she would tell her do it.

    I am not directing anyone..I just struggled with this decision and in the end I wasn't comfortable with the LVI

  • stephincanada
    stephincanada Member Posts: 228
    edited September 2016

    Was the LVI described in more detail? Was it a single focal of Lvi (a small dot) or a large area? Where there are differing opinions, I would go with the more aggressive treatment. I have scoured the boards and there are cases in which women didn't choose the most aggressive treatment and the cancer recurred. I would forever kick myself (but that is my nature). I am going through chemo now, and while it is no walk in the park, it is do-able.

    I had a single focal of LVI. There were differing views as to the significance of this. One onc dismissed it completely, while another said that it was the equivalent of having one positive node at most.

    Good luck with your decision.

  • bluepearl
    bluepearl Member Posts: 961
    edited September 2016

    Focal vs extensive makes the difference. Small grade 1 tumours can be sneaky if they are Her2+ or triple negative. and they do oncotyype DX tests to find out if your tumour has the potential to metastasize. With such strong hormones, I think the antihormonals will do you nicely. I never got the oncotypeDX either, despite a grade 3. But it was small. Node negative. H+. So that is all favourable. I hope. We all worry across the board about recurrence, especially mets and they can and do happen to us hormone + ladies YEARS down the road. But what the heck. Something else can take us out too, so why worry. Worry never stopped my second cancer so live life as it comes to you!!!

  • atanea
    atanea Member Posts: 58
    edited September 2016

    Hi there,

    Well, it has been a while. the decision, at the time, was to skip chemo. My LVI was focal, and I wasn't even sure if it was there or not, because my tumor went for analysis in two different places. One report said that I had LVI, the other, later, that I didn't had it. One said my tumor was grade 1, the other, later, grade 2. Who was right? I don't know, for now, I don't care. I didn't had the chance to do the oncotyype DX tests. They don't do it in a lot of countries. But the decision had to be made and all the oncologists said I shouldn't do chemo. In my case that was probably a good decision, because 1 year after that, I had acute leukemia, and had much stronger chemo, if I had have it before (to breast cancer) not sure if my body would react so well to the leukemia chemo one year after, or even if I would survive it, most of the people that dies with my type of leukemia dies during treatments (that's not the case for breast cancer) and two types of chemo in just 1 year, not sure if I could take it.

    So, we all do our best with the information we have. I'm ok now. But never crossed my mind not even 1 sec that I would be taking chemo anyway one year after. Chemo wasn't that hard. I'm glad I had it for leukemia (I have hopes that it may have had some effect to breast cancer cells).

    Recently, I saw a study regarding luminal A breast cancer in younger women (<40y), that the risk of dying is about 2x higher than older woman. If I had read that some years ago, I probably would have insisted with chemo, I was 35 at the time, but probably that would have been the wrong decision anyway. These decisions are very hard. Having oncotyype DX tests should be mandatory.


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