Learned today that I belongs to this group!

Katarina

Kathleen1966, I'm guessing this is your birth year so we're really close in age.

Am I correct to read that they did "not" remove all you axillary lymph nodes but you are suffering lymphedema?   I had my nodes all removed and was told they were sending the biggest of the 3 lymph nodes to be evaluated for ER/PR and KI67 tests. Not sure why they're doing this same test on lymph nodes vis tumor results, as though they should differ seems odd. I'm waiting for more info though.

 I'm sorry to hear your suffering from Lymphedema. My surgeon noted it multiple times like it should be expected and not an exception. And that it can appear at any time after surgery. How long before you experienced it?  

 Per your question on whether removing them or leaving them makes a difference. The new BAD news I got from my ONC last Friday was not that my lymph nodes were big and cancerous - yes, this was bad news - but that "angiolymphatic invasion" was present. This is worse news. It's that I have cancer cells in my blood vessels and they're traveling now. How far, where and how fast is still unknown but the tumor board voted unanimously that I undergo chemo / radiation and the whole systemic treatment approach to fight this.

I will get a CT and Bone scan in a week to see if more is found but from what I'm hearing from you all it doesn't sound like these tests are really that helpful and can tell if the cancer has spread beyond lymph and breast tumor areas...sounds like they can be tests as weak for real detection as mammograms and ultrasounds are for ILC. Is that a fair questsion?

 Do you know if you have any lymphatic system infiltration or invasion. My path report also said no extracapsuarly extension, meaning no cancer found in the tissue around the lymph nodes, but the angiolymphatic invasion finding trumped the extracapsulary extension as I was led to understand. The cancer is in my blood vessels and traveling. Where??

I"m sorry this is happening to any of us but happy we can share what we're learning. You are all ahead of me so I appreciate your experience.

 Happy Easter and tomorrow is a new and great day. I hope it is sunny where you are. 

yellowfarmhouse

hi,

I was also told I was 2B at first but then staged as 3A.  6.5 years out.  At first, it bothered me a lot as I felt like my doctor wasn't telling me the truth.  But, being 3A got me into a vaccine trial so turned out to be a huge blessing. 

Wendy 

NancyD

I'm another one who started out IIB and ended up IIIA after surgery. My preliminary staging was really just to get the ball rolling and give the docs an idea of what they were dealing with after the core needle biopsy. They based it on that small sampling of tissue and a CT/PET scan. Two nodes showed up positive on that scan, but it wasn't until the surgical pathology report came in that we knew more than two nodes were affected.

For the record, my initial staging was several months before my surgery as I had neoadjuvant chemo. The chemo shrunk the original tumor significantly, so I've always wondered why I still hadit in my nodes. Two more doses of chemo and rads after the surgery hopefully cleaned out any lingering (or malingering, as I like to say) cells.

Lee64

I am not sure what stage my cancer is, but from the staging charts I think it is IIb. My great concern is that  I also have lymph-vascular invasion as well as extracapsular extension into the adjacent soft tissue. My Onc never discussed this with me; she only mentioned tumor size and the ER+PR+. I have had 4 DD A/C and have finished 7 of l2 Taxol. I'm not sure if I will have radiation or not; she said she would decide when I get closer to the end of chemo. I just don't know what to thiink of all this and have not been able to find the significance of the above findings. Any thoughts and opinions are greatly appreciated.

NancyD

Lee, I would be surprised if you don't have radiation. With extracapsular extension, they'd really want to sterilize the axillary area.

Katarina

Lee, I was told I needed chemo and radiation just to fight the lymphatic side of this cancer. Maybe I'm just such a newbie but my feeling is chemo should be much harder to do than radiation. You sound like your doing pretty well through this part of the process. I think if they hit it systemically you are in good hands.