LVI positive

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Greenfields
Greenfields Member Posts: 12
edited August 2019 in Stage III Breast Cancer

Thought I'd send this out to all who have stage III:

Greetings,

I was diagnosed with Invasive Ductal Carcinoma Stage 11b this January & as a result started neoadjuvant chemotherapy (8 in total, once every 2 weeks); then a lumpectomy & 20 lymphnode removal; followed by 25 sessions of radiation. My surgical pathology report indicated that of the 20 lymph nodes removed - 6 tested positive. It also indicated that I was LVI positive, meaning that the cancer had infiltrated my lymph vessels. I'm rather concerned because when I spoke to my medical oncologist about my report and asked her if the surgeon would have removed all those positive lymph vessels - she indicated that he most likely didn't. So of course I'm thinking the cancer is definitely still in my. Does anyone have any experience with being LVI positive?

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  • Bugs
    Bugs Member Posts: 1,719
    edited October 2010

    I don't know that I would worry.  If it was in your nodes, then it was traveling your lymph vessels to get there.  That's why you are on neoadjuvant chemo.  The chemo hits the full system and is zapping anything in those vessels.

    Hugs!!

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  • Greenfields
    Greenfields Member Posts: 12
    edited October 2010

    OK - this sounds a bit confusing but, my oncologist confirmed this - that one could have positive nodes and negative vessels, as well as the other way around. By the way my chemo treatments were prior to the surgery & therefore the chemo did not address the 6 positive lymph nodes and the Lymphatic vessel invasion.

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  • AgentMo
    AgentMo Member Posts: 72
    edited October 2010

    How funny, I was wondering about this question as well tonight. I have been to a doctor and I had to inform him about my breast cancer - hence my diagnosis has lept into my brain again. And I was wondering how much worse the prognosis gets if LVI (and BVI) are present if you have positive lymph nodes to start with. Do the progams to calculate survival rates include this aspect of the diagnosis?

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  • Greenfields
    Greenfields Member Posts: 12
    edited October 2010

    I still have much to learn about BVI, but in reference to LVI - it seems to me that with each additional cancer positive result that the prognosis gets worse. Sure I'm curious about survival rates, but at the same time there have been people who have far survived clinical expectations, so I think it's important to look for encouraging stories. With that said, involvement in the lymph nodes; lymph vessels; blood vessels etc., are indicators (from what I understand) that the cancer has a better chance of spreading. Now that all the treatment is over, and knowing that lymph vessels that have cancer are in my body, leaves me feeling helpless when it comes to just waiting out a year for a mammogram or calling the doctor if I feel any unusual pain. Pain? Good grief, if the cancer has spread to the point of pain - how discouraging to know that perhaps it could have been detected sooner.

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  • Annaanne
    Annaanne Member Posts: 190
    edited October 2010

    Hi all.  I'm an old timer posting here -- just to give you perspective -- I had neo adjuvant chemo and still had a positive node and so much lymphatic invasion at surgery that they called it something that looked like "hemorigenic," or some word like that, that I assume meant that there were so many vessels with tumor cells that it was just a big mess.  Not pretty.  And I also still had a 6 cm primary tumor, AFTER six months of chemo.  

    That was five years ago, though, and I'm completely well.  I was shocked to discover at surgery that I still had so much disease.  But I haven't had a recurrence and I'm back to my old fiesty self.

    You will be too.

    Annaanne 

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  • Greenfields
    Greenfields Member Posts: 12
    edited October 2010
    Thank you Annanne - you post was encouraging to me.Smile
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  • weety
    weety Member Posts: 1,163
    edited October 2010

    Okay, so what is the difference between LVI and having it present in a few, small "angiolymphatic" spaces?  Doesn't angio mean blood?  So what is angiolymphatic?  I thought the blood vessels were different than the lymph vessels. My report stated yes, LVI present in a few small angiolymphatic spaces. 

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  • AnacortesGirl
    AnacortesGirl Member Posts: 1,758
    edited October 2010

    I have a computer science degree and nothing in the medical, bio-chem or biology fields.  But I have been interested in this question from the beginning since I was given an anti-angiogenesis chemo drug as part of my trial.  So I looked up a few things.

    According to MedlinePlus Medical Dictionary the term angio can mean either lymphatic or blood.  Apparently it refers to the vessel and the cell make-up of both blood and lymphatic vessel are similiar.  Then I went on to read (or at least try to read) a couple of studies:

    http://ajcp.ascpjournals.org/content/129/4/578.full.pdf

    http://carcin.oxfordjournals.org/content/27/9/1729.full

    What I got from these studies is that the pathologists have yet to determine which markers should be used to determine vessel invasion (either lymphatic or blood).  So there is inconsistency in determining whether LVI or BVI is found.  The second question seems to be whether LVI is, by itself, any different as a prognosistic indicator than the number of lymph nodes involved. In other words, does is my 14 of 17 carry a more negative prognosis than whether or not LVI was also found?  Seems like the jury is still out in this area.

    I would like to hear back from somebody with a much better background in the field.

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  • weety
    weety Member Posts: 1,163
    edited October 2010

    Yes, anybody, please chime in!

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  • weety
    weety Member Posts: 1,163
    edited October 2010

    Oh yeah, and thanks anacortesgirl!

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  • Jainey
    Jainey Member Posts: 109
    edited December 2010

    I have been researching LVI ... I recently had a double mastectomy (IDC Stage 1b) ... had SLNB with 11 nodes removed on R side ... one malignant ... I asked my surgeon about being LVI positive and he got back to me with this ... The test was not done because we did the SLNB (Sentinel Lymph Node Biospsy). I have not read anywhere in my studies about this being an exception to the test ... The Fox Case Cancer Centre has much information on this recently in November, 2010. Do you have any input???? Thanks a bundle.  Jainey

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  • weety
    weety Member Posts: 1,163
    edited December 2010

    Jainey, From the research and info I've gathered, LVI and Nodal involvement are separate entities.  (There are two ways that the cancer cells can bust out--through the lymph system or through the blood--complete different pathways)  But. . . I think that if there is nodal involvement, LVI is more likely to be there and vice versa. My onc told me that if LVI is present, they usually treat it as if there was a node positive, thus a little more aggressive.  In my case, my mastectomy report did not show node or LVI, but my biopsy said LVI was present in a few angiolymphatic spaces.  Still don't know exactly what that means or indicates.  I researched the heck out of it a year ago, but now I'm just kind of done and accepting that it is what it is.  SIGH!

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  • Jainey
    Jainey Member Posts: 109
    edited December 2010

    Hey weety!

     Thanks so much for the reply ... you have helped ... I guess if my SLN was malignant that I was LVI postive as there was infiltration into the lymphatic system ... so that being said ... they believe they got it all, and I can handle thatSmileThank you Girl! You have a wonderful picture. I had wonderful news today from my Naturopathic Oncologist - I dont need to take Tamoxifen as there are about 6 things along with my restrictive diet that I can do to lower my estrogen, and interfere with its absorbtion ... I am in Heaven. I can be drug free and only have to take what Mother Nature has provided. Thanks again .. you helped me see the light. Cheers! PS ... Funny, my Traditional Oncologist told me that there were not side effects except 'hot flashes' and some minor menopausal symptoms (she lied as I did my research when I got home) so ... I am making an appointment with her to ask her why she lied to me etc. She really pushed the fact that my Tamoxifen, if filled at the Cancer Clinic, would not cost me a cent - It is free! I dont care if it is free, I do not want it ... so I hope that she will tell me the truth as to why she lied to me. It will be interesting, and of course, I am always very diplomatic so we will have a professional  consultation:-) Jainey

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  • lago
    lago Member Posts: 17,186
    edited December 2010

    Tamoxifen like all drugs have SE but not everyone gets them. I know of several folks on it and have little to no SE. That being said she should have warned you that there are some. The worst (although rare) being endometrial cancer.

    The other SE are very typical of menopause/low estrogen. As you know not all women experience bad SE with menopause. The same goes for this drug.

    http://www.breastcancer.org/treatment/hormonal/serms/tamoxifen.jsp 

    I read somewhere that they don't pay attention to LVI as much as they used to. They find that lymph node involvement is a more accurate indicator. Sorry but I don't remember where I read that.

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  • Jainey
    Jainey Member Posts: 109
    edited December 2010

    Hi lago ... thanks for your input ... yes, uterine cancer is not only diagnosed in the later stages but usually quite lethal, very important side effect to be familiar with ... I was thinking that if I had to take Tamoxifen that I would have an oophorectomy and a hystorectomy, just keep things safe. I think that I have read that somewhere as well about the LVI ... it does make sense to go right to the source. Looks like all your nodes were negative ... that must have been good news!

     BTW, I am up in Canada on the West Coast and if anyone would like to email me (as I dont get on this site very often) please do so at jehughes@telus.net ... I would love to share all of my research .. as well I have the one of the best Naturopathic Oncologists in North America on my team ... and I will share with anyone who  is interested in natural ways.

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  • lago
    lago Member Posts: 17,186
    edited December 2010

    Yes my nodes were all negative ( as well as LVI). I was very lucky given grade 3 , 5.5cm tumor, and very fast growing. When the BS's nurse told me I think she was more exited then me. My BS really thought I would have a micro invasion. At least one thing has gone my way.

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  • Jainey
    Jainey Member Posts: 109
    edited December 2010

    Lago ... yes! One good thing, that is a fair size tumor (mine was only 1.6 cm) ... You are extremely lucky ... hope all the rest is not too much for you to handle. I do feel that you have strength there tho ... I was very lucky, my surgeon appears to have gotten it all so I do not need Radiation or Chemo ... talk about going to heaven!  I was diagnosed in July 2010 but I was in such denial that I had to have second opinions etc and thus I waited five extra months for my surgery ... I was so worried that it would have spread, just got bigger I was lucky.

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  • lago
    lago Member Posts: 17,186
    edited December 2010

    We were diagnosed at the same time. No denial for me. I felt this huge mass and had bloody discharge from nipple. I knew I was screwed. Just didn't realize how bad. Granted going into surgery they thought 7cm. 5.5cm was also another nice surprise for me.

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  • Jainey
    Jainey Member Posts: 109
    edited December 2010

    Wow! Lago ... you must have been scared ... guess you just trusted your surgeons and knew you had to do it. I am proud of you ... I was prepared to die, unbelievable ... I thought for sure that Mother Nature would heal me ... finally found the two best Naturopaths in the country and they both told me (without consulting each other) if I did not get surgery - I had no chance of getting better. So ... I just changed my attitude and found the best surgeons and enjoyed every minute of it! I am so lucky to have had breast cancer ... other cancers are not so easy to remove (just had to lose my breasts) and beyond that I have met the most wonderful people like yourself ... I am now dedicated to helping whoever I can. You see, I have been fortunate enough to have been able to study this disease for everyday (3-6 hrs) for over five months ... I know alot!

    I love to share. CoolI love life .... it keeps getting better! 

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  • Jainey
    Jainey Member Posts: 109
    edited December 2010

    Wow! Lago ... you must have been scared ... guess you just trusted your surgeons and knew you had to do it. I am proud of you ... I was prepared to die, unbelievable ... I thought for sure that Mother Nature would heal me ... finally found the two best Naturopaths in the country and they both told me (without consulting each other) if I did not get surgery - I had no chance of getting better. So ... I just changed my attitude and found the best surgeons and enjoyed every minute of it! I am so lucky to have had breast cancer ... other cancers are not so easy to remove (just had to lose my breasts) and beyond that I have met the most wonderful people like yourself ... I am now dedicated to helping whoever I can. You see, I have been fortunate enough to have been able to study this disease for everyday (3-6 hrs) for over five months ... I know alot!

    I love to share. CoolI love life .... it keeps getting better! 

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  • weety
    weety Member Posts: 1,163
    edited August 2013

    Jainey, Yeah, when I first was diagonsed, cancer research became my full-time job too!  LOL!!!  Hours at a time. . . looking back, I'm glad I have the knowledge I have, but sometimes, maybe it would be better if I didn't know everything!

    I think the reason why nodal involvement is a more accurate predictor is because (I think) most single cells that get into the blood are killed (but as we all know, it only takes one. . .)  I remember reading that the bloodstream is a really harsh environment for cancer cells.  I think the lymph system is a little more forgiving and that's why node positive women sometimes don't have LVI. But also, when pathology is done, they don't and can't check every possible area for LVI--they select and test samples.  So unless LVI was moderate-extensive, it might be missed.  I think that may be what happened in my case--the biopsy showed LVI (it must have been a sample taken right in the right place) but the mastectomy one did not find LVI (it must have been a tiny amount and thus not sampled this time.)  I guess that's good for me, but of course I still worry about the tiny amount that was found!

    Jainey, I would love to hear more about some natural ways to lower estrogen.  I ended up needing a hyster/ooph in April due to a suspicious ovarian cyst (thankfully it ended up benign) so  I'm officially post-menopausal, but I am also taking femara, an AI, and I'm hating the weight gain it's causing on me.  I am petite and have NEVER had a problem with my weight before this.  I have been consistently between 100-105 lbs since high school, never had to diet, or even watch what I ate.  Now, just 8 months since becoming menopausal (which might have some to do with it as well as the AI) I'm already up to 110!!!  YIKES  I gained 10 pounds in 8 months and have been eating the same as always (if not better) and it is really depressing me. I know 10 pounds doesn't sound like that much, but when you're petite and only 100 pounds originally, that's a 10 percent weight gain!!!  Ughhh. . .

    Edited to add--I don't want to change the course of this discussion, which is LVI, so pm me, please!

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  • Jainey
    Jainey Member Posts: 109
    edited December 2010

    Hey weety!

     Thanks for the info and nicely said ... it brings it all together. I wrote the Fox Chase Cancer Centre in Philadelphia and talked to someone in New York about LVI and the info is similar to what you have written. I know enough now, and will discuss things further with my ND Oncologist when he returns from Kawaii with his family in January.  Should I talk about the natural ways here? or maybe email me at jehughes@telus.net and I can send lots of info your way. It is not only about lowering estrogen but also about keeping it from the clutches of cancer, different ways to keep it from feeding cancer ... no matter what we do to lower our estrogen we will always have some ... so we just have to block what is there from the receptors of the cancer. It actually quite amazing .. just like our bodies! I am petite like yourself, so I know what a 10% gain or loss is like:-) Big Hug! Jainey

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  • weety
    weety Member Posts: 1,163
    edited December 2010

    Jainey, I got your pm and the messages about how you blocked me accidentally and don't know how to unblock!   The system won't let me pm you back until you unblock me, but I can still tget pm's from you.  Weird.  Maybe someone else can help you--I have no idea how to reverse the block! LOL  Start a thread titled HOw to unblock someone (Or something like that) and see if anyone answers! 

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  • AgentMo
    AgentMo Member Posts: 72
    edited December 2010

    I read some very discouraging LVI studies recently. Essentially, they stated that LVI was not a negative predictor if you otherwise had unaggressive cancer in an early stage (i. e. no lymph nodes, G1). However, as soon as you have lymph node involvement or otherwise aggressive cancer, LVI is a predictor of its own and it indicates poor outcome. And not only that, LVI has a hazard ratio of around 2, which means for instance if without LVI your probability of survival is 0.7, then it is only 0.7^2 = 0.49 in the presence of LVI.

    Naturally, I was devasted by this information as probably most of us that are really in stage III are. So if there is anybody getting more information about this, please write. My oncologist unfortunately is not very open towards discussing these things. 

    Some links:

    http://jnci.oxfordjournals.org/content/101/10/729.full
    http://onlinelibrary.wiley.com/doi/10.1002/cncr.25137/full
    http://www.springerlink.com/content/d631462226732890/
     

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  • sarajaneevans
    sarajaneevans Member Posts: 187
    edited May 2013

    @AgentMo- I am not sure I am following your post- about the LVI-I don't understand most of your post-but that is me not you-I am pretty new to all this -having had my first consult with my surgeon on 4/29/2013-my lumpectomy on 5/16/2013- my final path report reads 3 SN were dissected-one of the three with metastatic carcinoma-also LVI: Present.....I'm going back on the 7th of June for more margins to be widened and to have a port put in for chemo-I have not seen the oncologist yet, so I am still not sure what the path all means. I just read what it says-I am researching all the time- but constantly getting sidetracked by something else I read, or pick up on while doing my research....-I am hoping to get a full explanation of the part report when I see him- seems that is his area of expertise??

    Thanks to all of you for the posts and thanks for the links-

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  • Timbuktu
    Timbuktu Member Posts: 1,906
    edited May 2013

    Thing may have changed but when I read The Breast Book by Susan Love she wrote that LVI increased recurrence just a little.  So hard to nail down the facts.  I was told I had no LVI and No lymph node involvement but when I went for a second opinion I was told i had both.  I was shocked by the LVI and asked how they could have missed it.  The onco said "it's hard to see".  Seems none of this is 100%.  Hopefully the Arrimidex will help.

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  • AgentMo
    AgentMo Member Posts: 72
    edited May 2013

    @sarajaneeva: I am not sure I understand your question properly, although I would like to help. Maybe you could elaborate a bit? Thanks.

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