How reliable is the node-negative diagnosis??

dragonfly220

I was diagnosed with Stage 1 Invasive (infiltrating) Ductal Cell Carcinoma (1.3 cm), grade 2, with lobular features and lymphovasular invasion on April 13, 2013. I am 38 yrs old with 2 children.

I had a DMX on May 9 due to papillomas in other breast measuring 7.5 cm (benign but did not show up on mammo).

I'm PR+, ER+, HER- and node negative. However, I am still scared of the lymphovascular involvment term. Can this mean that it is in my lymphatic and vascular systems?? How ofter is the node negative diagnosis wrong?? My oncologist at MD Anderson in Houston is not recommending chemo but tamoxifen only. I am nervous that the cancer may have spread. Should I order a PET/CT scan before deciding not to conduct CHEMO to ensure that the cancer has not spread?? How effective is the PET/CT scan in detecting micrometastases. I realize I am getting really technical so if you have any info or insight PLEASE share:). Has anyone had a wrone node negative diagnosis??

curveball

@dragonfly220, Have you had an Oncotype test? That will provide additional information about the risk/benefit balance of chemotherapy for your specific diagnosis. I am not sure how effective a PET is at detecting micrometastases. I think there is a lower limit to the size of things it can detect, but I'm not sure exactly what that limit is. If you are not comfortable with or don't completely understand the first doctor's recommendation, you can request a second opinion. I expect that someone with more information will come along soon. I had a positive node so I can't answer your question about how often nodal status is false-negative.

IngridJ

Hi Dragonfly



I seem to recall my breast surgeon telling me that the testing method for the sentinel node (the one they biopsy) has a false positive rate of 10%. I think. ???? Someone feel free to correct me if I'm wrong...

I was so stressed at the time that I didn't really ask her to elaborate. From my (limited) understanding, this means that the node they biopsed first may not necessarily have been the node any cancer cells would have gone into first (although 90% chance it was)..

Don't know about lymphovascular inv issue.

As Curveball suggests in any case, the oncotype would give you a clearer understanding of your tumour aggressiveness or lack thereof and maybe some peace of mind re your decision.

And as she also points out; you can, and it could be good to seek out second, or third or more opinions re your treatment.

Good luck.... It's the hardest time I think of the whole process.. That 'what should I do???' feeling..Grrrrrr

raffomimi

Hi Dragonfly,

I'm sorry to hear of your recent diagnosis and BMX.

I asked my Oncologist does she think Lymphovascular invasion is a prognostic factor for recurrence and she said yes.

Lymphovascular invasion is spread of a cancer to the blood vessels and or lymphatics.

Basically your tumour set up its own little vascular and lymphatic network hense lymphovascular invasion.

I was node negative but had lymphovascular invasion.(and more besides!!) and at the time Oncotype testing was not available to me.1.9yrs ago

Ask for a second opinion and the oncotype test , but it is truly up to you what to decide

Hugs

rozem

dragonfly - I was also told LVI was a prognostic indicator and that recurrance rates (local and distant) are higher with LVI - HOWEVER i think that depends on the tumor charateristics - I agree that a oncotype test would benefit you, You are being treated at MD anderson so i am assuming there is a very good reason why no chemo is being recommended - get a second opinion if you are concerned

I was told that it depends on the center and surgeon (as SNB requires surgical expertise) but that the false positive rate is between 5-10%.  Where i was being treated it was 5%

bluepearl

A study done in Britain indicated that LVI that was focal or moderate had no bearing on prognosis. EXTENSIVE LVI did. Take heart in that because most studies that consider LVI a poor prognostic factor do not take the three extents into account within those stats. My MO agreed. Node negative is generally one of the best prognostic indicators but nothing is 100%. I had LVI "present" in my second biopsy (first said no LVI) but third one came back no LVI......my MO said his recommendations would have remained the same, even when the grade went from 2 to 3 (my tumor was 7-8mm). Tamoxifen only treatment (and this is my second breast cancer...contralateral...and for two years I hadn't take tamoxifen for first so am wondering if I HAD taken it, would the other breast cancer have shown up?) I had an SNB....two sentinels and 1 non-sentinel all clear and given the tumor's location, not too concerned about intramammary nodes. RUN with your postive prognosis as worrying doesn't change anything except the enjoyment of the day your are experiencing.......worry didn't stop my 2nd cancer! Yes, people can get a false negative but why go there? I think part of my healing process was knowing I had only a certain amount of "control" and a lot of "no control" and so just LIVE each day!!!

ahdjdbcjdjdbkf

I have also read foreign studies that said prognosis difference with one node - micromets - is statistically similar to no LVI. They think a lot of people that don't show node involvement may have micromets and they weren't detected. Hence having them keeps you in a very similar groups statistically anyway. And with the treatment you are getting, it will take care of any micromets.

dragonfly220

Thanks everyone for your posts!! This actually was my second opinion. My first oncologist at Texas Oncology left the descision up to me whether or not to have chemo. Oncotype DX score was 15 - so still in the low range but my benefit would be about 3.5 percent to have the chemo in conjuction with the Tamoxifen but i was not sure if the Oncotype test includes the LVI parameter. Ugg what to do.  

I suppose I am being over sensitive but I have read that with Double Mastectomy BC patients the most likely place for the cancer to set up shop is in the bones if it Metastasis. This is really scary to me. Should I have a bone scan vs a PET/CT scan??  My sister-in-law has been a nurse for over 25 years and can't remember treating a cancer patient that did NOT have a PET scan. This is another reason why I am leaning to that route. AND my surgeon that conducted the lymph node biopsies during my DMX said that the LVI would almost certainly upgrade me to Chemo even though I was node negative. He is one of the best surgeons in the area from what I have been told. Very difficult dilemma!

I think I may just order a PET/CT scan to be on the safe side - may help me sleep at night! Again - if anyone has been diagnosed node negative with a positive PET scan please let me know:-).

Peace,

Dragonfly:-)