Extracapsular extension HELP

I know it's hard, but try to hold on to the fact your X-ray and muga were ok, which I is great. anxiety can definitely affect your breathing patterns. If you are unable to relax, please speak to your doctor.

I know the fear of mets we'll,in the early days I was terrified.

It's now almost 12 years later from a stage IIIC with 12 positive nodes, some extra capsular and 2 totally replaced by tumor and I am well today.

rads were easy for me, just tiring.

Check these boards, the are many many women doing fine .

I wish you a gentle road

hi Shanna, I was hormone negative, not Brca positive , and also I am older so I did not have additional surgery., otherwise I would of gone for it

Hi,

I too have IDC with extra-nodal extension. I read this with much interest because I still do not know what the plan is. I have bilateral IDC diagnosed March 1st. I have had Bilateral mastectomies on March 28th with sentinel nodes as well as lymph node dissection of all level 1 and 2 nodes on the right. Nodes on the left, all 4 of them were negative. Only 2 on the right were positive and 1 was extra-nodal extension, the other positive node was NOT a sentinel node. The extra-nodal extension (ETE) was huge. This lymph node tumor was bigger than both the original tumors and it grew very fast. March 13th there seemed to be zero lymph involvement when they did the needle core biopsy, nothing clinical through palpation or ultrasound. Then on March 22, it was huge and palpable and visible on an MRI as highly suspicious as cancer. Only 9 days and it grew this big. At that point I was put on Arimidex.

I know arimidex works because the pathology from my surgery, 2 weeks later was much different than the needle core biopsy. My issue is, my Drs seem to be looking only at the surgical pathology when describing my tumor type. I believe the prognosis and treatment plans in most clinical trials are all developed with pathology before hormone treatment. The onotypeDX score of 17 and 19 is assuming an advantage after chemo/radiation with adding the hormone treatments. If they use my post Arimidex numbers, then the values are invalid. I was told my right breast is Luminal A type. The less aggressive cancer, but when you look at the biopsy Ki-67 score of 15-20%, it would place it in the Luminal B category. Remembering that the lymphnode grew to 2.6 cm in 9 days. That does seem to agree with the higher Ki-67 score. As well as the fact my biopsy was HER-2 Positive for the right breast and oncotype DX is not valid with HER-2+.

Another concern I have is the fact that I cannot continue on the Arimidex, it has raised my cholesterol LDL up 76 points and lowered my HDL by 2. That isn't sustainable for 5 years unless I take statins and I really don't want to do that, neither does my oncologist. It also raised my BP to 190/110 so I am currently on BP medication that causes insomnia, so now I take it in the morning. That is doable for the current time. But not my Cholesterol up 76pts for 5 years taking to above 300. I am also concerned about the value of chemo while on arimidex if it slows the growth of the tumors, then the chemo isn't attacking the cancer. I also believe there is value in stopping the arimidex during radiation therapy to allow the maximum benefit by damaging the fastest growing cells. Anyone have any info regarding neoadjuvant hormone therapy followed by chemo or radiation? Did your cancer come back? Was there still value in chemo and radiation?

I asked my oncologist these questions and told him my concerns and he said they are very good questions, but we just don't know the answers to them.

If I can't continue on the drug that has proven useful so far, I am pretty sure I want something else that will attack this cancer systemically. I think I will ask for Chemo even though losing my hair is devastating to me. I told him, if I do all I can to keep this from coming back and it still returns, then I did all I could, but if I don't and it comes back, I will always wonder what if. However, we need to do something very soon, it has been 7 weeks since my surgery. Anyone have any input or suggestions on a plan?

Right breast prior to Arimidex: (path from biopsy)
Stromal inflammation is mild
Estrogen receptor 100% positive
Progesterone receptor 1-5% weak
MIB-1 (ki-67) 15-20% positive and strong intensity
Her-2/neu oncogene protein Positive +3
(The equivocal FISH is noted)

Right breast after Arimidex: (path from surgery)
Estrogen receptor 97.5 positive
Progesterone Negative .02%
Ki-67 Low 5.2%
Her-2 IHC Negative

Left Breast prior to Arimidex (path from biopsy)
Estrogen receptor 100%
Progesterone receptor 60-70%
MIB-1 (ki-67) 1-5%
Her-2/ Negative (FISH)

Left Breast after Arimidex (path from surgery)
Estrogen 98.2% Positive
Progesterone 4.8% Positive
Ki-67 Low .6%
Her-2 Equivical (IHC)
FISH at NeoGenomic Labs- Negative

Well, still no Her2+ treatment. I am hoping soon. They redid the path and again it came out Her2+ but for some reason my oncologist isnt trusting this diagnosis and doesnt want to believe this. They are going to put it before the tumor board this week, I do believe. Did you get a port for Herceptina and perjeta?