Help! Node Negative But Isolated Tumor Cells
Just got my pathology report and even though it says I'm: Node Negative it also says there are isolated tumor cells less than 0.1mm and "probable lymphovascular invasion is present" ANYONE ELSE HAVE THIS AND WHAT WERE THEY TOLD BY THEIR ONCOLOGIST???? I haven't seen mine yet and am now feeling scared.
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I had LVI in my pathology too. There is not too much written about it. My doctors told me it meant that even though I had clear nodes, a pathway for the cancer cells to spread had been established meaning it could have travelled by blood. They said it was highly unlikely. I was also stage 1 at dx. I could not find a lot on LVI but what I did read did not seem favorable. I opted to do the chemo since I had LVI even though I was stage 1. It just scared me too much. Sorry you find yourself here among us....hugs!
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Wow! Thank you so much for your reply! Your cancer sounds identical to mine. May i ask why you chose mastectomy? I had my first lumpectomy and they did not get clear margins so am going back this coming Monday for another surgery to get them (prayers!) will have radiation and am awaiting oncotype test to see if I should have chemo as well as hormonal therapy. ugh! so of course now i worry about the LVI. Congratulations on being cancer free btw! any worries about the LVI now? and thanks for the hug! i need lots of them.
oh, and how long did you do the chemo for? was it horrible? hair loss? -
I got this exact diagnosis post my DIEP flap dmx. My oncologist said I had super clear margins and that the lymph node looked clear but had a few micro cancer cells. She pretty much brushed it off. I asked her why and she said the cells might have traveled during the biopsy or surgery. She was very non-chalant about it. Did not recommend radiation and just said she is waiting for the oncotype for my post surgery recommendations. She felt very confident about my surgery and said that the oncotype will tell more.
I am just waiting for the oncotype report next week. As soon as I hear anything I will keep you posted. No chemo for me most likely. And definitely tamox recommendations --- but gotta be honest, depending on the actual onco-number, I may not take that either...just depends on the stats.
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Thank you so much for your reply! Wow you were just diagnosed too. Been the worst month ever! So was 1 of your nodes positive or was it negative with just the micro-cancer? I also am awaiting my oncotype. would love to hear what you decide to do for treatment. our C's are very similar.
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Hi, yes, it's hard to find others with the same diagnosis (and age? I'm 40 and pre-menapausal). It was negative with micro cancer cells according to the breast surgeon (who didn't seem to care at all about it) and the medical onc said I had 1B status because they found cells in the lymphnode -- so I put 1/1 in my diagnosis because it said if something was in there. I think I was grade 1 on the IDC because they were well differentiated.
I opted for the DIEP flap surgery because of cosmetic and lifestyle reasons (mummy tummy, I never wanted a punch biopsy again and I have a family history). They found more DCIS cells in the right breast so I was glad I went for the mast. The onco comes back end of next week or so.
What about you? What have you found and done?
Fingers crossed for you.
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gowanusgal, i am having second surgery in a couple days (monday) to get clear margins from previous lumpectomy. i have not met with oncologist yet but have an appt down to dana faber in about 3 weeks - also for second opinion on my pathology report. i am also awaiting results from oncotype test. i also have BRCA1 testing coming up. ugh. so many iff'sss. let me know how yours all turns out.
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Matsgirlie, I hope your second surgery went well. I want to hear how things are going. I got my path report and it was very confusing...it's node "negative" yet positive for 2 micro clusters of tumor cells. My surgeon was really really blase about it. But now I am freaking out that they might trot out the chemo. I hope not. My fingers are crossed that the oncotype comes back very very low. Sigh.
Please give an update when you can. Thanks!
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Hey GowanusGal! look back over your pathology report see if it says anything about "lymphvascular invasion" (btw, "invasion" is a really scary word. lol.) mine says: "probable" i have sent my slides down to Dana Farber in boston for a second pathology opinion. i meet with an oncologist down there in a couple weeks (once they have my oncotype and all past mammograms/mri's and biopsies.) From everything ive read it is hugely important to get a second opinion - even a third if necessary!! so i feel good about that. from what i can tell LVI (lymphvascular invasin) or Isolated Tumor Cells or Micro clusters means there are cancer cells in the lymphnode area. (even though we are lymphnode negative, there are still cancer cells there - confusing or what?) That is why they had the oncotype ordered (and same with you) this will let us know the very best treatment for our specific cancer. at this point i have become very numb and don't care what i have to do. my surgeon told me if clear margins are not had this time around with my second lumpectomy surgery, i will have to have masectomy (i would do both.) i feel the same way you do about having chemo - BUT being so young, id rather hit it with both barrels than have to have a recurrence in a couple years. ive been reading alot about "polar or cold caps" you can wear during chemo that has a very high success rate for keeping your hair. what ive finally come to realize is that there is no hoping - what will be will be and we just have to suck it up and do whatever it takes to rid our bodies of this horrible disease. because i am er/pr+ i am on a great diet: no sugar, no simple carbs, no dairy, no meat with added hormones. lots of organic veggies and fruits and green tea! sugar feeds cancer! so at this point im like you and just waiting to hear what i have to do next. please let me know what you find out for yourself!!! loves and big hug!! stay strong, hun!
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I hope you both are weathering the storm in the early phase of diagnosis and treatment, it is indeed stressful. I just wanted to share my info to provide another perspective. I also had LVI on my biopsy pathology. All of my pre-surgical imaging did not indicate any activity in the nodes, this included mammogram, ultrasound and MRI. My SNB was declared clear in the operating room, but 20 IST were found on post-operative pathology. In most circumstances (the one you both find yourselves in) I would have been declared "node negative" and most probably advised to have radiation to the axilla, or maybe no further treatment to the axilla. However, both my forward-thinking BS, who was one of the pioneers of SNB, and my MO indicated I needed axillary clearance surgery because I was Her2+, and that this was non-negotiable. I had this surgery five weeks after BMX and 11 additional nodes were removed, one of which had a .5cm positive cancer. Declaring someone "node negative" with IST or a micromet in the sentinel is a slippery slope - at the very least I think radiation to the axilla would be advised if you opt for no further node surgery, but know that situations like mine can, and do, happen. If I had not had the ALND it would have been akin to leaving a stage 1 breast lump in place. IST or micromets are in the lymph nodes themselves and these form a network throughout the body, not just the axilla area, so that means cells have the ability to travel throughout the body through that pathway. Much is not understood about LVI - that is often why docs gloss over it - some without LVI and node negative end up with distant metastasis, other with LVI never have a problem again. It is not clear cut in terms of prognosis. I am glad that your docs have ordered Oncotype Dx since you are ER+, and this will inform treatment choices going forward, and hopefully also provide some measure of peace of mind about what those choices are. Best of luck to you!
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SpecialK - thanks for sharing your story. I have been reading a lot on "micrometastases" on sentinel nodes and what it means for someone with my level of cancer. Based on my readings online, there is a lot of debate as to whether what they found (1 out of 3 nodes had 2 cluster of .21mm tumor cells) was cancer that had spread by itself or moved during surgery/biopsy. When it is < .2MM they call it isolated cells. So it is .01 more than .2MM-- very borderline and annoying (as my cancer tumor was also borderline at 1cm and with well differentiated margins before the biopsy and then after with moderately differentiated margins at the surgery (no doubt messed up by the punch biopsy). At this time, I know chemo is not an option for me and most of the docs here would not order one since I am definitely ER/PR+ either Her2- or Her2neu (got two different path reports -- one from punch, one from the surgery - done in two different hospitals). It seems the question is just Tamoxifen for how long and side effects etc. I have a lot of psychological issues (and some concerns with the medical risk vs benefits gained) with going into menopause at this time in my life (I'm a young 40 and wanted more kids...not sure that is going to happen now.). Matsgirlie, if you are very young, you will want to get several MO opinions as well as potentially speak with a fertility specialist before starting any aggressive treatment. Chemo is not typically more beneficial for our type of cancer but your MO will know more.. If you have to get a mast and are interested in DIEP reconstruction, I can tell you all about it.
Sending good vibes.
-GG
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Mats- tell me more about your diet. I am changing my diet too. Going to go mostly veg -no dairy. The meat thing too is hard. I am going to try to limit it to organic grass fed and only occasional! Gotta suppress that estrogen.
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Since you mentioned the diet thing - sugar feeds every cell in your body, and is necessary for cell function. Eating an excess of refined sugar is not good for you from any health perspective, but the "sugar feeds cancer" thing is misunderstood. Your body will convert other foods into sugar to assist cell function even if you are not eating sugar directly. FWIW - after steroids with chemo and hormonal therapy after chemo Igained weight. Exercise and a sensible 1200 cal a day diet, which did not include soy, gluten or much sugar at all, did not move the scale - not even a pound. I started a food sensitivity diet which eliminated dairy, soy, gluten, sugar, corn, peanuts, and eggs. My protein sources are grass-fed, pasture raised or organic. The only thing I have added back in are eggs occasionally. I eat lean protein, non-starchy vegetables, low-glycemic index fruit. This is less about cancer and more about inflammation. I have lost 20 lbs. since January and weigh less now than before I was diagnosed, my aromatase inhibitor induced joint pain is gone, and my lymphedema is vastly improved.
This is what Mayo says about sugar:
Myth: People with cancer shouldn't eat sugar, since it can cause cancer to grow faster.
Fact: Sugar doesn't make cancer grow faster. All cells, including cancer cells, depend on blood sugar (glucose) for energy. But giving more sugar to cancer cells doesn't speed their growth. Likewise, depriving cancer cells of sugar doesn't slow their growth.
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Just got the word: my margins are clear!!! phew! At least something good. now to wait for my oncotype score and second opinion at the Dana Farber in a couple weeks. So much amazing information on here and especially from you ladies. Awesome. There is alot of great information out there on dieting and sounds like we are all doing pretty much the same thing. i did the ketogenic diet for awhile but am now doing pretty much Specialk's diet. Gowanusgal, I am mostly vegan at this point (due to my hormone+ cancer like yours) and in the process of eliminating dairy. i am also a celiac so can't have lots of carbs and if i do they are complex. I make my own almond bread and drink almond milk and coconut creamer (very good.) only organic, low glycemic veggies/fruits and if i do have any meat it is grass-fed no growth hormones. I do not eat sugar at all and if i do it is maybe a small piece of 85% dark organic cocao (chocolate.) i eat seafood maybe 1 a week. i have also lost alot of weight doing this and feel good as far as that goes. i drink LOTS of japenese green tea for the polyphenols and catechins and a glass of organic red wine (with meal this is important) maybe once or twice a week for the resveratrol (very good cancer fighter.) I do have a cup of coffee in the morning (no sugar, coconut creamer.) I base my diet off of Dr. David Servan-Schreiber who wrote the new bestseller: Anticancer A new Way of Life. This book is amazing and i keep it close to me at all time for great cancer food advice.
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ok! so more good news! They got clean margins and my oncotype score
came back as 13! So no chemo. I will need radiation and hormonal therapy
(im guessing.) Phew!! finally some good news. now lets hope BRCA1/2
test comes back negative. jeesh. i feel like im barely out of the line
of fire. let the battle continue! -
matsgirlie: congrats on the clear margins and low Oncotype score! I can understand the anxiety awaiting BRCA results, but while you wait, just remember that the odds are in your favor that you'll be negative.
SpecialK: Great post about sugar. Congrats on losing 20 pounds!
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lintroller - thanks! I had been trying so hard to do it the traditional way and it was just not working - I was so frustrated! This diet is the Virgin Diet - by nutritionist J.J. Virgin. My former boss did it to deal with arthritis in her hands - not for weight loss. Her pain dissipated and she lost 23 pounds and she is now at her college weight.
matsgirlie - excellent news! Lintroller is right, odds are in your favor that you are BRCA negative, particularly with positive hormone receptors.
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Thank you!! yes!! to finally hear good news is awesome!! However, still
concerned about the Isolated Tumor Cells and "probable lymphvascular
invasion." Probable????? No one seems too concerned about this but I
will be meeting with my oncologist on monday to discuss it further and
ask if chemo would help because of this. I am also getting a second
opinion on my pathology report down to boston at Dana Farber and will be
meeting with their oncologist in a couple weeks. Between the two of
them they should have me figured out! I'll feel better about my "good news" once ive talked to the oncologists! Hugs! Stay Strong! -
SpecialK: I'm sorry. I typed a reply a few minutes after your post yesterday and hit submit. My computer restarted to install updates, but I assumed it happened after the post made it through, but I guess not. Thanks for letting me know the name of the diet. I lost weight about 9 years ago, in my late 20s, and have been able to keep it off; however, my husband is looking into diets he'd like to try and I think this one might be a good match. It's great to also hear it helped your ex-boss's arthritis; I developed arthritis from chemo and I know that oftentimes diet can have a significant impact on quality of life in that area. I think I will likely also try this diet for myself. I was born and raised in Central Florida and recently moved to Indianapolis. The lower humidity helps a lot, but the cold sure gets me. Ugh. I never thought I'd have these issues in my mid-30s, but they're here to stay I believe.
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matsgirlie: just take the good news as it comes, and try not to focus on too much at a time. Dana Farber is a fantastic cancer center. Please let us know how it goes.
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lintroller - I participate in a Her2+ vaccine trial in Washington, D.C. (lived there for many years when DH was stationed at the Pentagon, so I chose that location since the trial is not offered here) and I went in December and January for boosters and lab work - timed it with two blizzards - came to realize that cold weather hurt my joints! A lot! That was early in the diet experience so when I go again at the end of the year I will have to see what happens now that my joints have stopped hurting. Conversely, hot and humid weather in FL wreaks havoc with my lymphedema, it will be interesting to see what happens now that I have less swelling. Also, I can't go out in the sun due to extensive skin cancer - I am living in the wrong state! I am a California girl, so love warm (staying in the shade, lol!) and dry weather! As far as this diet goes, the beginning is hard because you have to really read labels - once you get the foods down that are okay the diet gets easier. My solution is to avoid most things that are processed, and once you have been on the diet for a bit your cravings also dissipate. Hope it works for your DH!
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SpecialK: I'm sorry to hear about DC, but good luck with the Her2 vaccine trial! I know what you mean about the cold making the joints ache...ouch! I was born and raised in Ocala, Florida and we moved to Connecticut in 2005 for my husband's job. We only lived there a year because my mom got very ill and I was her only child. We found a way to move back. This was before cancer and chemo and I had no experience at the time with the role the weather, low pressure, humidity, etc plays on the joints. I had heard my parents talk about it growing up. We moved to South Florida (Palm Beach) after chemo was over and I could feel in my joints that we would have a pressure change from storms. I just didn't think the cold would be so hard on me here in Indy. I thought that getting away from the Florida humidity would be really helpful, but I guess not.
I can totally imagine that the heat and humidity would aggravate the lymphedema. I'm so sorry and I hope that it doesn't bother you too much. I've never been to California, but have always wanted to go. I hear ya on being in the wrong state...Florida is where I'm from, but it felt wrong for me healthwise. I just told the hubs that I may be one who needs a warm and dry climate before I hit 40. Sigh.
Thanks for the headsup on the diet! I don't mind reading labels; I started doing it when I lost weight awhile back. Hubs is not so used to it and just likes what he likes. He's dedicated to find a diet that works for him and helps his health issues while allowing him to lose a few pounds. Thanks again!
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lintroller - I am done with the active portion of the trial in D.C. - I now go every six months for a booster and blood work. I wanted to be in this trial because they have cut the early Her2+ recurrence rate in half with this vaccine. I flew up every 3 weeks for 6 months in 2012, and then moved to the boosters for 2013-14. I have one next month, then the last one just before Christmas. My BIL is a veterinarian in West Plam - small world - and Ocala is right up the road from me. I miss California, will be going for a high school reunion at the end of the summer, I have not been back for a while. I hope your hubs can work this diet - cut out the seven things and then figure out what stuff you like from what you are allowed and its all good!
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GowanusGal, did you find out your oncotype score yet???
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HI Matsgirlie, I have not heard the oncotype yet, but I did meet with the MO. She said, because they found the microtumors, she would automatically recommend chemo with tamoxifen. I am hellbent on no chemo -- so if the oncotype is low I will skip it. I am also looking for some more opinions on the MO. Heck, I don't even want to do the tamoxifen -- but I am letting that one simmer. I like my odds 83% survival doing NOTHING. 88% with Tamoxifen and 93% with chemo and tamoxifen. But these stats are based on 40 year olds with absolute positive nodes (1-3) and I have a "gray area" of 2 micro tumor clusters of .21mm (or .01mm more than what they consider "isolated cells") and no one can answer why the cells were there (e.g. caused by surgery, being eliminated by my lumphnodes or going there to spread). She says my odds are a bit better than the above, but she'd still recommend "medium" chemo -- where I lose my hair. AND she said she was not into the ice cap because people can get scalp cancer!!! What?! She also stated they know they over treat, and have no proof that the treatments will work except when I am still alive in 20 years.
I guess, part of me is a bit hippy dippy and I believe in mind body connection and being conservative with over-treatment of my body. I've been under tremendous stress these last 3 years and I've decided it's genes (BC runs in the family even though there is no BRCA) triggered by my stress these last years. I've been reading your Anti Cancer book and it has really helped me. If you have any other book (and cookbook) suggestions, I'd love them. Right now, I am eating almost all organic and vegetarian (though today I cheated with some ramen at a restaurant) and stopped drinking alcohol (I'm allergic anyway) and would to figure out more ways to help build my immune system up.
That is great news on your oncotype -- the suspense on mine is terrible. I'd love to hear how you do on the Tamox.
Be well-
GG
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Gowanus Girl (is that the Brooklyn Gowanus?), I had 10 isolated cells. Oncotype showed a 2-3% gain from chemo, so my onc (so happy!) advised skipping it. Let's hope your result will be similar. Meanwhile, just the fact that micros are considered negative feels really, really good, no? -
ok! Gowanusgal, i really don't know how your MO can tell you you are going to need chemo if you haven't gotten your oncotype score yet. i met with my MO on monday and she told me that treatment is based on this. she said that she would only "consider" giving me chemo if my oncotype score was at least 23 (mine was 13) she said that even though i have isolated tumor cells and "probable" (she said this just means they don't know!!!) lymphascular invasion i am still "node nedgative" and i will be treated as such. i am realizing after talking to her and other doctors that there is substantial gray area here and most of the answers i get is "we really don't know." LOL! Great! A real confidence builder. She did say that even with Isolated Tumor cells the first place they would go is to my lymph nodes and if lymph nodes are clear than that means they never made it that far. The tamoxifen will get rid of those little escapees anyway and that chemo with my ER/PR positive cancer wouldn't do me any good. i know you have the same dx. i would wait for the oncotype score (i was told i may need chemo too before they got my score now its a "no way.") and then see what your MO has to say. I am still getting a second opinion on my pathology and on what the oncologist has to say (in a different hospital down to dana farber.) im not worried about the tamoxifen. i've just started it and take it with dinner. does make me a little dizzy then but i go to bed soon and by morning i feel fine. i do not expect side effects with it beyond hot flases. and there is no way i wouldn't take it!! i also have to be on it for 10 years. thinking i will get my ovaries removed eventually and then i won't have to worry so much about the estrogen and being pre-menopausal - that will put me right into menopause - and then i can be on one of the different SERM's and get off the tamoxifen. i was all worked up too about the chemo because everyone kept alluding to it, but as soon as my oncotype score came back it was a different story. my MO also changed me from 1b to 1a (my surgeon told me i was 1b) and said i am 1a because i have negative nodes regardless of LVI and ITC. So! what ive learned is its all a big mixed bag and i have as great a chance of being in a car accident (higher probably) then i do of having a recurrence which is 8%. BTW, your oncotype will tell you what your recurrence rate will be not sure how you MO already knows this???? i bet your oncotype is going to be low like mine. let me know the minute you hear. i would also def say you should do the tamoxifen!!! so i am not drinking caffeine now. it turns to estrogen. had a terrible headache yesterday but feeling fine today from withdrawals. lol. no alcohol except on occassion. mostly raw organic foods. no sugar. only a little complex carbs. fruits/veggies fish, white meat. i guess with our kind of cancer you can't be too thin. glad you like the book!! i really liked it too. mostly now i am following the same diet but staying away from estrogen foods like soy and caffeine oh and no dairy (if you have to have it make sure its low to no fat as hormones stay in the cream and whole milk) even organic milk has hormones naturally from cows as they milk cows when they are pregnant. so instead i drink carrageenan free (its an additive thats carcinogenic and can be found in organic milk including almond and coconut) almond milk and almond cheese. let me know how it all goes! i would recommend a second opinion but you've gotta get that oncotype score first!! hugs!!!!
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It is important to note that your Oncotype Dx score is valid only if you take hormonal therapy, Tamoxifen or one of the aromatase inhibitors. That you will take HT is factored into the score. The purpose of the test is to determine whether there is benefit when chemo is added to hormonal therapy. For those whose MO have given them a prediction percentage with certain treatment options there are several calculation tools they can use, in addition to their own experience with many patients.. A number of MO use Adjuvent Online, which is available to physicians, but the two I have linked below are available to patients also. For the Predict tool look carefully at the tumor size - it is in millimeters since this is a UK site - multiply your tumor size by 10 to get the correct number.
http://www.lifemath.net/cancer/breastcancer/therapy/index.php -
Hi everyone,
I just got a quick call from the MO and my oncotype is 20. I am meeting with her again to discuss what that means. I'm pretty certain I am going to choose just the hormone therapy and see how I tolerate it. I was very very happy to read that measles article today about virus vs cancer cells. I am sure in 5 more years, there will be more evolved treatments and things will get even better.
As for the diet...I have to say, the anticancer book is so good. I am not a vegan or full veg (because I won't stop myself from eating fish, egg, or organic meat 2-3 times a week), but it is a radical diet for someone like me who loved to eat processed things and had meat every day with almost every meal. Since the surgery, I think I've cut my meat intake to 10% from 100%. And I am working on possibly going all veggie...just not all at once. The amazing thing is that vegetarian things are so damn tasty! I do miss cheese and wine (can't drink it really because I am allergic and it causes me inflammation) but say la vie!
Thanks for all the advice. I'm gonna get some other opinions and let you know what happens. I'll keep you gals posted!
Feeling better -
GG
P.S. Brookside, yes, that is Brooklyn
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i have the similar issue, two 0.1mm clusters found adjacent to a node. My onco said it might be caused by biopsy. My oncotype score is 10. therefore my onco didn't have any concern regarding the clusters. Second onco i found had the same opinion. ok, then I'm in tomaxifen. i guess my case is even worse. Based on the test, tomaxifen doesn't work for me after i had taken it for 6 months (I guess that's the reason i have no any side effect. I was happy about it now I want to cry). Right now I'm getting the Lupron shots to shut down the ovaries.
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nancy2013! what test did they do to know that tamoxifen doesn't work for some people????? i need to know this! thanks for sharing. how are you doing now??
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