Recurrence with neg nodes and neg LVI?

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MsBliss
MsBliss Member Posts: 536
edited June 2014 in Triple-Negative Breast Cancer

I know that many of my tn sisters started this journey with negative nodes, negative lymphvascular invasion, and clean margins.  I was wondering if there is a high recurrence rate with these features as well.  Have any of you started with these features but had recurrence?  How much time passed before recurrence occurred?  What treatment did you have and is there any other info you can share?

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2011

    I had/have all of the above and will be interested in hearing from others also, as I posted this same question somewhere in here or another site but haven't had replies.

    Gee, does that mean nobody with mets fits this profile?

    Wishful thinking?

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  • HairSprayMom
    HairSprayMom Member Posts: 251
    edited January 2010

    I think no one really knows. It all seems to be a stinking crap shoot. I have done some research from online studies, but they all related to Metaplastic Carcinoma and triple negative. From what I have seen in these studies it looks like if there was a recurrance it happened between 2-3 years after initial diagnosis. Also look at folks cancer signatures, they usually have their original date of dx and their mets rec dated on there. For us trip neg gals it seems so random. I had a pet scan 13 months out of chemo and I was still NED, but I expected to be then. It was really stressful going for the scan and I am not doing another til 3 yrs out or more. I have been told that it really doesn't matter when the metastisis is caught as far as treatment options and such, so I am not getting scanned til I have a problem. Somtimes Ignorance is Bliss LOL. But take heart after a year of so, you don't think about ALL the time, just every now and then. I guess it's true that time heals all wounds, even the BC ones!

    Regina

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2011

    I *always* look at people's signatures (and count my blessings) but many make no reference to margins or LVI; both important info I believe for those of us living in fear of mets. Also, I think clear margins are most important in the context of a first surgery, not requiring a second surgery to obtain them.

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  • Nan56143
    Nan56143 Member Posts: 349
    edited January 2010

    Dear hhfheidi,

    Your dx is very similar to my daughter Lori's. She was dx with TNBC, Stage IIa, grade 3, but 0/3 nodes, She had ACT all 3 every 3 weeks for 6 TX's, and 28 rads. However, her first surgery to remove a "fibroadenoma cyst" (NOT!!), was screwed up, did not get clean margins, so then... on to a mastectomy.

    After reading an article in the December issue of Life Extension magazine, I am convinced that the first surgery to remove a tumor is extremely important. But, do all surgeons follow the procedures outlined in this article? He$$ no!! I started a thread posting this article, with the hopes that other women just beginning this unplanned journey might be spared the possibility of mets in the future. I too would love to read of women with Lori's dx and doing well after many years.

    http://www.lef.org/magazine/mag2009/dec2009_Preventing-Surgery-Induced-Cancer-Metastasis_01.htm

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2011

    Although I never would have had my surgery done locally due to the reasons you mention, I was not aware of that article until a month or so ago.

    Therefore, I am eternally grateful I had the ability to travel to NYC and have the surgery performed at Sloan-Kettering.

    Our thoughts were to go for the best to minimize disaster. I really liked my surgeon. Thanks for posting.

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  • petjunkie
    petjunkie Member Posts: 317
    edited January 2010

    I had a 9cm DCIS in October 2007, there was a microinvasion in the center of the DCIS that was like 2mm. Mastectomy with clean margins, SNB removed 5 lymph nodes and all were totally clean. Started tamoxifen, but no other treatment as this was considered "stage 0."

    Two years later, and I've had a recurrence in bones and liver. There are still no cancer cells in the lymph nodes, but there is now cancer in the space surrounding the lymph nodes. The cells must have spread through the blood and not the lymphatic system. It's unusual I guess, but I am node-negative but still at stage IV. There are more than 30 mets in my bones and 13 in my liver. Aggressive stupid cancer!

    I started treatment about two months ago and have a PET scan next week to see if it's working. 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2011

    Well, here's wishing you good results with your PET scan next week. I know the waiting is hard.

    So, are you saying that because you were stage 0 they did not feel you required Herceptin for your HER2+ pathology?

    I can't imagine the anguish of going from 0 to IV. 

    All the best,

    H

    PS- Is that a King Charles Spaniel you are holding?

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  • petjunkie
    petjunkie Member Posts: 317
    edited January 2010

    Yes, because it was DCIS and I had the mastectomy, that was full treatment. Chemo was not recommended, as my chance of recurrence was about 10% and with chemo it would only lower to about 7%. I don't know what is recommended now, but two years ago Herceptin was only given when you had chemo with it. Anyway, yeah-- everyone is shocked. Definitely not expected, but I am hopeful that the mets can be managed for many years. I'm only 35 and not interested in checking out of this life just yet :-)

    That is my lovely King Charles Spaniel Cavalier, Penelope! She is the sweetest pup in the world and I just love her like crazy. Do you have one? 

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  • smithlme
    smithlme Member Posts: 1,322
    edited January 2010

    My first diagnosis was TN IDC on the left side. I had a mastectomy and DD chemo. 7 1/2 months after I ended chemo I was diagnosed on the right side with a new primary of ER+/PR- DCIS. I chose to have a second mastectomy. My Onc and I were concerned with a recurrence so we were shocked with a new primary. After the second diagnosis I had genetic testing and found out I am BRCA 2+. I have since had a hysterectomy w/BSO to try and avoid ovarian cancer, which can still happen. We have ovarian tissue in our stomach tissue. I know I have done all I can to avoid cancer but nothing is a 100% guarantee...

    Linda

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2011

    PJ,

    I have two Boston Terriers after a lifetime of Kerry Blues. I am very active with animals; that's why I knew yours.

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  • MsBliss
    MsBliss Member Posts: 536
    edited January 2010

    Dear PJ (me too, pet junkie that is!)--I think you are right....that the spread is can occur through the blood as well--but maybe it is a stem cell event.  One researcher radio marked cancer cells and showed that they leave the tumor bed, go hide in the bone marrow, then return to the tumor bed!  This was with respect to recurrence of the primary tumor though, not with metastasis.  I think some types of cells have a proclivity to go into the blood network--and others through the lymph. Still others have stem cell genesis, like triple neg.  That is a rough one since stem cells are largely unaffected by chemo. 

    Did your doctors ever check your vitamin D levels?   

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  • psp2pdx
    psp2pdx Member Posts: 38
    edited January 2010

    Good question Ms Bliss-  Vitamin D that is.  Mine was 20! I am now up to 40 2 years later.

    Anybody else? 

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  • psp2pdx
    psp2pdx Member Posts: 38
    edited January 2010

    Oh and I was suspicious for angiolymphatic invasion but so far nothing has popped up.  Molecular diagnostics showed aggressive nature.   

    PJ  loved your pic with your Penelope!

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  • angelsabove
    angelsabove Member Posts: 363
    edited January 2010

    Hey ladies.....You can see my signature below....

    PSP...I did have angiolymphatic invasion.....it stated PRESENT......HATE IT!!!!!

    but I also had three dirty nodes.....REAL CURIOUS if angiolymphatic invasion is the same as what some ladies state LVI....present....mmmmm so confusing

    MAY GOD BLESS US ALL 

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  • MsBliss
    MsBliss Member Posts: 536
    edited January 2010

    I have consulted with innumerable pathologists and still can't get a straight answer definitively as to whether there is a difference between angiolymphatic and lymphvascular invasion. 

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  • Jaimieh
    Jaimieh Member Posts: 2,373
    edited January 2010

    I was told by my oncologist at my last appt. that if it states there is no angiolymphatic invasion it does not appear that cancer has entered the blood stream.  He stated that it apparently leaves a trace. 

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  • Tonya36
    Tonya36 Member Posts: 66
    edited January 2010

    Thought my 3cm tumor was a fibroadenoma and took it out.  The next day I received a call saying it was cancer.  I chose to have a mastectomy in hopes of getting anything that may be lurking around and never having to worry about it again.  The path from surgery came back with 0/4 nodes and NO cancer anywhere in either breast.  I had DD chemo for 4 treatments and 12 tx of Taxol.  My last treatment was December 2008. 

    The weekend after Thanksgiving 2009 I felt something hard in my breast area.  Turned out to be 2 cancerous lymph nodes and 4 mm of cancer on my chest wall.  I am floored.  At the age of 37 I have been diagnosed with a regional recurrence of breast cancer and am starting chemo again next week.  I don't think we will ever make sense of it here on earth.  Only God knows what is in store for us.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2011

    Tonya,

    Well that certainly sucks...

    Was your original tumor close to the chest wall? Did they say anything about margins? It sounds like you had a bilateral mastectomy? Have you been tested for the BRCA gene?

    I know. Lots of questions... best of luck to you. All this modern medicine and yet it still boils down to luck, it seems.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2011

    bump

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2011

    Yes, that site is a good source of information for TNBC.

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