LymphoVascular Invasion?
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I wasn't sure where to actually post this topic, but...I just got a copy of my path report from my doctor Monday and while reading through it I saw Lymphovascular invasion present. I came back negative for lymph node involvement, but I can't seem to find out what this means for me. I asked the BC nurse and she basically said it was found in my blood vessels, not my lymph nodes, and "don't worry it's not a death sentence." How do I take that when even before we knew the stage of BC she said the same thing? I don't have an oncologist yet, as I am waiting for my BS to refer me to one. He said they would call me in the next few days with an appointment, but they were making the onc appt two or three weeks out because he wants to have the oncotype results back first. I agree with that, but in the mean time, should I be concerned with LVI? I am okay if it is something to worry about, but I don't want to worry unnecessarily and no one seems to have any answers. Any information would be helpful. Thanks. Allison
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I'm not sure I can help you much... I had LVI too, but with one affected node (micromets). I was really concerned when I heard LVI, but my BS said it was pretty much to be expected with a lymph node involved. Not a death sentence by any means, but in my case, with an aggressive cancer and signs of spread, it meant chemotherapy.
It was my BS who went through my path report, explaining it all to me - did you have a follow-up with your BS to go over yours? If you don't want to wait for the onc, I think it's quite reasonable to expect the BS to provide a full explanation of the path.
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My BS just told me he was happy with the path results, because there was no lymph node involvement and the margins were clear. He never brought up the LVI and I didn't see it before because he just gave me copy upon me leaving that day. I don't go back to see him until December. He said I would go to the onc in two to three weeks. There is a brief explanation on this sites home page, but all it did was worry me. It says it doesn't have to be in your lymph nodes to have LVI and all I can find is that relpase is more common with it, so I am worried now. Anyway, thanks for your help. Allison
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Has anyone here had negative lymph nodes and had LVI? Sorry I keep asking so much...just worried thats all. Thanks again. Allison
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Allison--Not everyone who has a positive node has lvi. It tends to be associated with the more aggressive tumors, and I see yours is Grade 3. If your oncotype score is intermediate or high, it would be consistent with that. It's something to keep in mind when you work out your treatment plan, but not a matter of special concern in itself.
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Hi Hopeful34, I had a negative sentinel lymph node and LVI.
Because of my tumour size (2.9cm) and young age, I had 4 cycles of chemo pre-surgery. After my lumpectomy, my pathology report came back showing LVI, grade 2. My surgeon or oncologist did not say anything about this, but maybe because that was because I had had the 4 cycles of chemo already...Not too sure....
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It is confusing. I had LVI but no lymph node involvement. They didn't make to much of the LVI but it was on my path report. I had chemo and radiation with the goal that these two treatments would catch the LVI. I was a grade 2. The doctors never made much of this but the oncologist did say that cancer cells can spread through the blood and not just nodes. That is why I had chemo and rads...to zap any bad cancer cells and hopefully they did! I am also on arimidex. Good luck!
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Oh Thanks so much. I just wanted to know something. I am surprised they don't seem to think it's that bad. I figured once I go to the oncologist they might know more than the BS. I will admit I still don't necessarily think it sounds great, but at least I know what I am dealing with. I don't have my oncotype back yet, but it has been sent out and I have my first appt with the onc on June 22nd. At least this gives me something to work with. I like to be prepared when I go. I am hoping for a low oncotype, but I thought between the grade, my age and now this LVI thing that it might be higher. Thanks again ladies for your help. Allison
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Hi Allison - my diagnosis is very similar to yours. I was diagnosed about 2 1/2 years ago on 1/31/08. I had IDC, tumor size around 1.2, Stage 1, 0/3 nodes, ER-, PR+, HER2-. I also had LVI. Because of the LVI my oncologist recommended I do chemo, so I had 4 rounds of dose-dense chemotherapy of Adriamycin and Cytoxan. I am 2 years out from my chemo treatments and doing fine. I did not do the Oncotype DX test at the time of my diagnosis. I wish I had, but I did not fully understand the purpose (or benefit) of the test. I have worried about the LVI also, but I don't worry all the time. Good luck in your treatment decisions. Feel free to PM me if you have any additional questions that I can help with.
Take care,
Karen
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I have some more to report, having come back from my oncologist. I trust her. I don't think any doctor is perfect, but she's sane, thorough, and works at a leading institution.
Here's what she told me. LVI is another circuit for the cancer to escape, just like nodes. She decides chemo not on age, rather, on whether you are at least one of two things: grade 3, or LVI positive.
Here's the good news: she said to me, "I believe after your surgery, you are cancer-free." The chemo is, as they describe, insurance.
My doctor did order the Oncotype, and I was impressed she did without even asking. Yes, I'm grade 3. But, the Oncotype will help her determine the kind of chemo she'll use, and that's a breakthrough. And, of course, if super-lucky, some folks might get out of chemo if they score low.
As has been mentioned a great deal, grade 3s usually score on the higher side.
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I am so glad I have this place sometimes. After reading my path report, the whole LVI thing had me worried, and my family keeps dismissing saying, "if it was important the doctor would have said something about it." I am a nursing student and have been in the medical field for five and half years, so to me, it sounded more than relevant. I am glad it is nothing too serious, but I will for sure make it a point to mention it when I go to the oncologist on the 22nd. Thanks again. I still feel like it must mean something sort of bad or they wouldn't have it on there.
One more question: What is KI-67? I keep hearing about it, but do not see it referenced anywhere on my reports. Is it something they have on the oncotype test?
Thanks again. Allison
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I got my oncotype score today and it was low (16) which I guess is good. I keep trying to research what that means as far as chemo. As I said before, I go to the oncologist for the first time Tuesday June 22nd, so I don't have any idea what to expect. I don't want to do chemo if it won't make any difference, but at the same time, I think it will scare me not to do it. I worry about my age (34), grade 3 and LVI. Also, my path report said not only did I have a 1.7 cm IDC tumor, but a 2 cm DCIS tumor as well. I am not sure if this is common or not. Also, the path report says something about necrosis????? I know I will find out soon enough, but I hate waiting. I guess I just want to be prepared when I go to the onc. I would like to know whether I am having chemo or not. Another thing, does anyone know how soon after your onc appt you started chemo. I had my BMX on May 21st, so I don't know if they will start it soon or if they usually wait a while. Anyway, sorry for rambling on yet again. Allison
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Hi Allison,
I was on the fence about the ocotype test and decided not to do it. I have pretty much the same stats as you and I am only 31 years old. My oncologist said that he would have done the test if I wanted to but felt that it would have to come back close to zero for me not to do chemo. I am extremely scared of it coming back so I said lets do everything possible so I can reduce this. Like I said I am so young it this scares me alot. I have too little kids at home and want to be around for them. So, I got my chemo port put in on Thursday and go back to the oncologist this coming Friday so I am guessing I will be starting chemo within the next 2 weeks. Good Luck with everything. Jenn
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Hi Allison! Did your surgeon give you the score or did it come in the mail? I'm just curious as to who will be receiving my results.
I am pretty sure your Onc will recommend chemo just based on your age, grade and LVI. Necrosis in a tumor means it is a fast growing tumor and ran out of blood supply to feed on. I haven't started chemo yet - I had to go back into surgery for a re-excision. I think most people start chemo 4-6 weeks after surgery barring complications. I don't think anyone wants to do chemo, but think of it this way....if you do not do chemo and it came back, would you kick yourself for not doing chemo the first time around? That is my mindset - plus I have a toddler and newborn so I need lots of years ahead of me.
Hope that helps! Good luck with your appointment and keep us posted next week!
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Hi Allison,
I think you have all the right questions and are definitely in a point of the steep learning curve that we all face at the beginning of the initial diagnosis. I would suggest to you that you take a list of questions with you and someone to take notes or better yet a tape recorder (
that is a dead give away as to my age eh?)... a recording device, for your apt. It is hard to comprehend all the info and it takes that pressure off you to have to know everything. Waiting for the information is hard as you need that information to plan your life...will I need chemo? , how long will that take?, what are the side effects? can I work through it?, will I need help?, how will I cope? You don't have to know it all but I understand the health care aspect as somehow it makes you want to know more or need to know more perhaps. At times I have just brought my questions and put trust in the health care system. This is a great place to get info and feedback however.
I had LVI on my path -ve SNB and from that and some other risk factors I had 6 rounds of chemo.They generally won't discuss treatment until all the results are in. Waiting is the worst, try to find things to occupy your mind. Movies(comedy!) are great for that, crafts , crosswords sudoko...there is a reason they are called diversions and were helpful for me. The 22nd is a few days away but is next week all ready, one day at a time. Good luck with everything and let us know how you are doing.
Diane
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Your oncotype results are sent to the doctor who ordered the test, not to you. Be sure to ask for copies of the report as you will wonder about things later on. Good luck.
pam
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Jenn & in_cognito- my BS is who ordered the oncotype. I asked him about it and he said he does it for everyone ER/PR+ and lymph node -. I was glad he did it. He also would not send me to the oncologist without it. With my onc appt coming up on Tuesday, I thought I would call the BS and see if my results came back and the nurse said they did and my score was 16. I asked what that meant and she said she didn't know. She told me to ask the onc for a copy of the test when I go to onc. I too am scared that if I don't have chemo, I will be mad at myself later if it came back. I want to be as aggressive as possible.
in_cognito- Thanks for the info on necrosis. I wasn't really concerned with it until I had seen a couple people on here mention it as if it was something bad. I am glad to know what it is. Thanks.
Diane- first of all, the tape recorder thing made me laugh. I have owned my fair share of tape recorders, so that doesn't really mean we're old. I will say for my first BS appt the doctor gave me a tape of the appt and I had a hard time finding anyone with a tape player. I had to call my 72 year old uncle.....he seems to be the only person in my whole town that still owns a tape player.....
Anyway, I had to drop out of the nursing program (one year of schooling left) once all this BC stuff happened and I can't miss any days, so I just want to know what is going on, so I can start again. I have been trying to stay busy and you are right that certainly helps. I am actually on here alot playing trivia games, etc.Pam- I will ask for copies. If I have learned anything.....that is it. I am trying to keep copies of everything. My path report alone has told me more than any of the docs have told me.
Thanks again to everyone for your help. Take Care! Allison
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Hi Hopeful34,
I know this is a year old post, but I found it and I am facing a similar dilemma. I just had a double mast done, negative nodes, but positive lymphovascular invasion on the pathology report. My surgeon hasn't made a big deal of it, and I'm seeing an oncologist for the first time in 2 weeks. I hope it all worked out for you, but I'd love any feedback from you on what course of treatment you took. Btw, my oncotype came back low, at 9%. I'm really afraid at the idea of going through chemotherapy. Thanks. -
I had an oncotype of 17 with LVI. I also had BMX. I had clear nodes. I was worried about this LVI and my doc's made it sound like it was not that big of a deal but everything I read is bad about it. My med onc said she would be more concerned if I had been Grade 3 or HER2+. I had to decide on chemo. I chose chemo and did 4 rounds of Taxotere and Cytoxan. I used cold caps to keep my hair. I finished in May. It was not that bad. I am glad I did it. I wanted to do everything I could as my son was only 4 last year when I was diagnosed.
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dingomama- My Oncotype was only 16. However, my oncologist said LVI was similiar to having one positive node. He gave me the choice of having chemo or not. I too chose to have Taxotere and Cytoxan 4 rounds. I did lose my hair, and as crappy as chemo might be, I was only 34 at diagnosis and I wanted to do everything I could even if it only improved my survival rate by 10%. It is definitely a personal choice, but just like mdg, I do not regret my BMX or chemo. I am on Tamoxifen for five years also. Feel free to pm me with any other questions. Good luck with your decision and take care. Allison
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Interesting. I am in the same boat as you DingoMama. With LVI, all my onc said was they can never really know if one or more of the cancer cells has travelled. My onco score was under 10, but that was without the path slide that showed LVI. We have since sent a new slide with LVI on slide to see if it makes a difference, but Genomic does not consider LVI an independent predictor of recurrence, like a positive node is. Crazy, huh? I think it is a flaw in the test.
I've done a lot of reading on LVI and it is scary. I've also done a lot of reading on chemo, and all the stats say that chemo does in the end, help prevent distant recurrences in women with bc. So I'm wondering why all these diff. oncs have different things to say about LVI. Is there a standard of diagnostic treatment when LVI is present?
Mods, can you point us to any journal articles that will help?
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Hi! New to the boards but this subject is very real to me! I haven't been to an oncologist yet, but I had a lumpectomy on Jan 30th and my follow up appointment with surgeon didn't have much info, but I did get a copy of the pathology report. I am having body scans and a bone density test on Monday. I am a grade 3 with no lymph nodes involvement but LVI was reported. No one has mentioned anything to me, and everything I found was on the report. All he told me was radiation, maybe chemo. I don't even know what stage I am in.
Should my surgeon be telling me these things or do I wait till I have an oncologist?
Sorry for so many questions! All very overwhelming!
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onvacation - hello - sorry you have to be here! Basically, surgeons remove tumors/nodes with surgery and oncologists, whether medical or radiation, will recommend treatment beyond surgery. Who is ordering your scans? Do you have a consult with an onc set up yet?
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SpecialK - the surgeon ordered the scans. No I dont't have an oncologist set up yet. The surgeon mentioned that was the next step, but unclear if I am to get one on my own or they recommend one.
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onvacation - my surgeon did refer me to an oncologist, but you may want to talk to more than one so that you can compare and contrast their treatment recommendations. I was satisfied with the referral after meeting with the doctor, and also liked that both the surgeon and oncologist, while in seperate practices, work together with many patients in common, and they are both in the same building. My surgeon's opinion was important to me and I did trust his referral. If you have scans ordered it might be a good idea to schedule any appointments for after those results are in so that you can carry the reports with you. You may want to ask for a referral from your surgeon now so that you can make appointments ahead of time, as sometimes there is a wait to get in. You can also put up a post asking for specific physician names in your area, or use the search box at the top of the page. There are two NCI designated centers in Houston, MDA and Dan Duncan at Baylor - maybe a place to start. I know this is a lot to take in!
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Thank you for responding! I can tell I will be on this board a lot!
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onvacation - you are welcome! You are also fortunate to begin reading and posting so early in your journey - you will learn an immense amount! Don't forget to look at the top of the page at Symptoms & Diagnosis, and Treatment & Side Effects as there is a ton of useful information there. Those resources will provide you with a good basic framework for understanding what the future holds for you and your treatment decisions. Once you have information from your path report look for discussion threads pertaining to the specifics of your diagnosis - the people there can surely help too!
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My onc's take on LVI was simple - if you have a choice you would rather not see it on a path report.
However - they really have no idea what the presence of LVI truly signifies as there are no quantative studies on it and it is only in very recent years that they have been able to identify it. They assume that LVI is the method by which node neg patients develop mets. But it needs to be remembered that up until very recently women were being categorised as node neg when in fact they had isolated tumour cells/micromets. Many women were undertreated.
LVI was the defining factor in my decision to do chemo and to have MX with rads. Interestingly, in spite of having a scattering of ITCs in my SNB I am still categorised as being node negative.
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greenfrog - what your onc said is how I took it also. Until I read that on my report, I assumed I would only have to do radiation. Now I am trying to get my head around the fact that I will probably have to do chemo and radiation.
I am trying to get all the info I can before I meet with the oncologist so I will not be totally floored and know the proper questions to ask in regard to my treatment.
Thanks for the response!
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I also had LVI and an oncotype score of 17 and I was grade 2. LVI is the reason I chose chemo. I did TCx4 and used cold caps to keep my hair. I am glad I did the chemo to know I did everything possible to fight the BC beast. I was also node negative. LVI is not written about much but everything I have read is not good. Scary.....
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