Lymphatic invasion

Pines

Hello everyone, Just wanted to follow up on my decision re the LVI and chemo.  My lymph nodes were clear, but the pathology report said lymphovascular invasion present.  My oncotype score came back an 8 (6% chance of recurrence).  I struggled and struggled with the decision about whether to do chemo.  My oncologist pretty much left it up to me given the oncotype score.  However, when it came down to it, no one could give me the clear assurance that I so badly wanted to hear.  I did much research on the internet and decided to go for the chemo (TC x 4).  Right choice or not, I don't know, but I want to give myself the best chance possible.  From what I read and synthesized, onco-dx is a factor to consider in deciding the best treatment option.  So is LVI.  I also read another post on this site about low oncotype score and high ki-67 combination (I had a high ki-67).

The best of luck to all of you in making your decision. 

Shay

Kate2z80

Shay,

Thanks for the update.  I feel the same way, that Oncotype is just one factor in the decision.  I'm going to the onc today and have decided to do the chemo--I don't ever want to have any regrets about something being left on the table.  Unless his opinion has changed, I will be doing CMF.

I'll touch base with you later.  It will be nice to have someone to go through this with.

Kate

hrf

Helen-Jackie....I did ask my onc about the Oncotype testing and she said that, in my case, since 4 lymph nodes were involved, there was no benefit in getting the oncotype anyway because chemo was recommended. Other women on these boards have indicated that the company that does holds the patent on the oncotype testing are not providing it at this time for Canadians. I have no direct knowledge of that but I'm sure it's just a matter of time until it's more widely available.

Helen-Jackie

hi kate, shay and hrf.

iam in a similar position.. i just sent away for the onco type testing.. its available in canada, just we need to pay 4000 US for it..its pricey but for me it was peace of mind. i should get it back within 2 weeks.. then i will do a second opinion in the usa. then really decide..

I am in a gray zone..  so if the onco comes back low, i still probably will do chemo because I have LVI,,, and onco test doesnt address lvi..

I I was gently recommended Chemo.. CEF or FEC -D 6  treatments in all. basically it only reduces my rate of recurrence by 3%.. but hey its 3 out of 100 women so why not take it all. My doctor reassured me that the effects of chemo arent scary.oh yeah..

I dont know much yet about CEF-D(taxotere) but i will start.. the wig thing is freaking me out.

Do u know if you have radiation to a breast and it comes back in that breast then if u need to do a  mastectomy..  can there be reconstruction surgery to it?

HRF- yes onco doesnt really work for node positive, somehow i thought u were negative

Shay- we are the same... however u know that alot of women do in fact have LVI and its not reported. U see alot of pathologists arent top notch so they miss that one..

Kate.. wondering if ur onc changed his mind..

best to us all

It seems we three are starting chemo at the same time.. should we form a mini club.. we may need each other

Did anyone run away before the whole chemo thing..maybe even for a long weekend?

hrf

Helen-Jackie. I'm told it is possible to do reconstruction following rads. I am seeing a PS on Thursday of this upcoming week to get consult on DIEP procedure. I did see PS who does tram procedure but because I have weakness in my back I don't want to take abdominal muscle. They don't recommend implants for those of us who have had rads but I do read about women on these boards who have done it.

I did the FEC (6 months) for my first bc dx in 2004 - 2005. It was difficult but I got through it ok. It was a triple neg, 3 cm, no nodes. This time I did TC x 4. It was also difficult but I finished. I'm still waiting for my hair to come back  - think it was faster first time. But wish my breasts would grow back -- but that not going to happen so I hope DIEP is an option for me. .....& p.s. ... no LVI in my case

Helen-Jackie

hi hrf

thanks for the information.When u were diagnosed with Brac 1 did they suggest a masetomy? Is this second dx in the same breast. Did u get radiation first time.

You seem like a strong and centered lady, thanks for taking the time to answer me. Let me know how it goes with the PS.

Kate2z80

Helen-Jackie:

Onc did not try to change my mind; just reiterated that he had run my case by several other oncologists, who also felt chemo was unwarranted.  He was sure that if I'd been seen at Dana Farber, they would not have recommended chemo.  He said that Sloan Kettering, where I got my second opinion, is about as aggressive as you get and the particular onc I saw there was at the top of the list.  He was somewhat surprised that she recommended "only" CMF, which he felt I could "easily" handle.  He also pointed out that it was never his opinion that chemo would be of no benefit, just not a huge benefit, for me, so it is nice to hear that even he doesn't think this treatment is of no benfit.  Overall, he was very supportive and felt that if I didn't do it, I would always second-guess my decision.

I start a week from Friday.  Should be done in 24 weeks.  What about you?

Kate

coff6088

Hello!  I have been diagnosed with 1.9 cm. invasive ductal carcinoma, grade 3 with vascular invasion and NO lymph node involvement.  My first Onco test came back a 5, which is AWESOME!  However, given the "vascular invasion" and the grade and size, my oncologist requested the Onco test be done again...it came back a 6!!!   Even though this indicates a low chance of recurrence and a low benefit for chemo, it was suggested I do the CMF to be cautious....II had my first treatment already, and am due to have my second one on Tuesday, September 15th...the vascular invasion part scares me tremendously...so, I have decided to be aggressive...CMF is MUCH easier on your body than the other ones!  GOOD LUCK!!!!

coff6088

Hello!  I have been diagnosed with 1.9 cm. invasive ductal carcinoma, grade 3 with vascular invasion and NO lymph node involvement.  My first Onco test came back a 5, which is AWESOME!  However, given the "vascular invasion" and the grade and size, my oncologist requested the Onco test be done again...it came back a 6!!!   Even though this indicates a low chance of recurrence and a low benefit for chemo, it was suggested I do the CMF to be cautious....II had my first treatment already, and am due to have my second one on Tuesday, September 15th...the vascular invasion part scares me tremendously...so, I have decided to be aggressive...CMF is MUCH easier on your body than the other ones!  GOOD LUCK!!!!

coff6088

Sorry about the "double post"...I am new at this...Kate- I, too, was seen for a second opinion at Sloan...I was misdiagnosed at the hospital near us...had a ton of faith in the NYC people..had my surgeries there...and am being treated with the CMF there, too...about a 3 hour drive each time, but I had one and I have 7 more to go!!!  My oncologist is Dr. Monica Fournier and she is super!  Is that who you saw?

hrf

Hi Helen-Jackie ... when I found out my BRCA2+ status, the docs advised that I do mastectomy. However, I couldn't face that at the time and truly never believed that I would get a second dx so soon. The first one was in my right breast had lumpectomy, chemo & rads.  This second time was my left. The path report this time said that my right breast was all clear so I guess the chemo and rads did their job there. Even in hindsight, I know I did not have the strength to do a MX the first time round. I did what I had to do but I'm still very sad about it. I hope that reconstruction will help me to feel better. There are many days when I don't feel strong or centered - I'm glad that I'm able to be helpful for you. Good luck. 

jdjr

Hi ladies,

Well, I am part of the "LVI" club, unfortunately, and have spent the last 2 months equally as baffled by this one "bullet point" on my pathology as many of you.  I am 41.  I had a lumpectomy in June (for the initially diagnosed DCIS), where they found 3 small (.2mm to .6mm - totally about 1 cm) invasive tumors, thus prompting  a double mastectomy in July.  

 Kate, Shay, we all seem to have similar stories, as well as similar geography.  What IS different, though, is that doctors at Sloan, though admitting that I was in the "gray" area, ultimately went ahead and recommended I just do aggressive hormonal treatment, and NOT chemo. My oncotype was a score of 12 (8% recurrance), and my ER/PR were both high at 95%.  My tumor grade was identified as a II/III on my pathology report, so I go with 3 to be cautious, as that's what the doctors seem to refer my grade as.   I had three small (ranging from .2mm to .6mm) areas of cancerous cells within close range of one another, so they have totalled it up to be about 1cm in size.

 I went for a second opinion, (and a third- who also consulted with his compatriates at Dana Farbar and Cornell), and the consensus was that there was seemingly greater risks with chemo, than benefits.    All have recommended 5 years of Tamoxifen, plus monthly injections of Zolodex (gosserlin) to medically shut down my overies and "turn off" the estrogen in my body.  I have read extensive studies (provided to me by the oncs) that indicate this treatment plan to be equal to, if not better in many circumstances, than chemo for early stage breast cancer.   Have any of your doctors made similar recommendations?

 NOW, I will tell you -- I have the fear that you all are talking about.  The fear that I "left a stone un-turned".  Like you, Kate, I sort of "wished" for the docs to say I should do chemo, just so I could have a solid answer.  It's very unsettling when an onc at one of the top hosptials in the world is scratching her head saying "Honestly, it's hard to know what to do with patients like you"...

Like you, the LVI is like a bad dream in my head. It's that one "factor" that I can't reconcile in my head and continues to worry me.   I can't stop thinking about it, and doubting my decision not to do chemo.. NO ONE told me to, though.   ONE of the oncs said, "yes, you could do chemo, but you will probably (probably!) get the same benefit, with less toxicity, by doing the tamoxifen/zolodex pairing.  (I could at some point decide to simply remove my ovaries -- i'll see how I do with the injections.

 Am I crazy to wonder if I should be doing chemo ?  I've been on Tamoxifen for 2 1/2 weeks now, and even today I was thinking "Hmmm, I wonder if I could still start a chemo regimen.."  I am meeting with my oncologist again Monday to discuss.

 Lastly, can someone tell me what the KI-67 thing is ?  

 Many blessings to you all -- this has been a crazy journey since first diagnosed with DCIS on May 29th.  My heart go's out to everyone and my wishes for peace and health.

 Jeanne 

susan_CNY

I am way out from my original dx of bc, tumor 1.6 grade 3 no nodes but possible lymphatic invasion according to pathology report, oncotype testing was in its early stage as was the shorter term rads,they were not available in my area anyway according to the onco I used,  he since has built a huge complex with his partners and is very well respected, sure his practice offers everything available now. I chose only lumpectomy  with SNB and rads having the last 3 focused on tumor area. no chemo or hormonal meds in consideration of quality of life, had a scare this last mammo but was benign, wish you the best also

jdjr

Susan-CNY, thanks for your reply.. You've got quite a history, and obviously quite a spirit.  Thank you for input !  

unklezwifeonty

Dear Angel10,

I had a similar experience. My 2 SNL's were  -ve during surgery but the surgeon took out 7 more nodes. Lymphatic invasion was noted in the pathology report and like you I am guessing that was immediately visible to BS and that is what prompted her to take out 7 more. During permanent biopsy they did find micromets in 1 node so in a way it was good that I did not have to return to the OR and also we got confirmation that the remaining nodes were clear.

Peace13

hello, I'm new here as of today, I know this is an old post but curious if you are still doing well, my case is similar to yours... I just had a double mastectomy a week ago, just turned 39 few weeks ago, I'm still waiting for oncotype but got the surgical pathology. I have clear margins, clear sentinel node, but do have vascular invasion in breast tissue... I'm so nervous about this because I never considered it, always just worried about the nodes. I am estrogen positive, her-2 negative, grade 2, and stage 1 sized tumor... Sorry so long! I'm sitting here with drains still in and worrying about everything! Any advice is welcome, I'm happy to have found this community! Thank you:

Moderators

Hi Peace13-

Welcome to BCO! We hope your recovery is going well, we know the first weeks can be difficult. This is a pretty old thread, and it's unlikely you'll hear back from the original poster, but you have a good question re: invasion. We would suggest starting a new topic, to open it up for input from the community, and see who else can offer insight.

If you need assistance in starting a new topic, please don't hesitate to reach out.

The Mods

Fearless59

Hi, peace,

Thanks for writing; this is my first time on this particular subject. I am sorry you have to go through this cancer stuff. You will feel a lot happier when the drains are out, I think! I really did not like those drains but was grateful there were there to help anyway. In the olden days, I suppose all of the fluids just sat there or had to be....whatever.

I had DCIS mastectomy left side, 1/12/17 and they unexpectedly found 1 mm of invasive cancer in the breast, and 5mm of invasive cancer in one of four sentinel nodes. My big thing right now is whether to accept chemo. I agreed to the radiation but my jury is still out on the chemo. I think it is overkill for my case and even the oncology doctor plugged in some data on my particular tumor size and type and noted that the statistical outcome is only adding maybe 1 year to my life(?). That tells me it is probably not warranted.

I am a little self-absorbed lately, maybe not the best person to talk to, but I am on your side!! Just keep collecting info about your case and make informed decisions as much as possible.

Hugs,

Fearless

Kimm992

Peace - I just wanted to chime in because I had a follow up with my surgeon yesterday and we discussed my pathology report which had minor lymphatic invasion on it.

He reiterated that it does NOT have the same significance as a positive node and that it's just a piece of the whole picture. It is useful in helping to determine course of treatment.

He also reminded me that he has seen people with near "perfect" pathology who have had a recurrence and people with 20+ nodes full of cancer who are still without recurrence 10+ years later.

It think it really is a crap shoot.

Peace13

Hi friends! I'm still learning how to use this forum and just realized I had responses to my question, thank you so much! I'm feeling a lot better since surgery and got my oncotype score, it's 16, I have appointment with oncologist tomorrow. I agree Kim , the more I read, it does seem like a crap shoot. I guess just one day at a time🙂 I hope everyone is doing well, take care..... Peace13