ILC is an invasive lobular carcinoma which if I understand correctly can be treated but not cured. It has traveled to one of the 3 lymphedema nodes they removed. Because it was only one lymphedema node they chose it better to not radiate. I didn’t want radiation but when I learned the type of cancer I have can travel to my bones, lungs, brain etc I wish they had radiated the one area it had already traveled too. So now I worry . And a recent bone scan showed I have an echondroma on my femur with a spot inside it that they think is cancer. Known as an Chondrosarcoma. I haven’t been accepted by Mayo Clinic yet so I haven’t had a chance to talk to a Dr. My oncologist isn’t really wanting to talk to me either. She told her nurse to message me in the portal to tell me I have this in my femur and I should contact an orthopedic surgeon. So all I have is google for answers. I wish I could be more positive for you but that’s not where I am. The lack of caring from people who work in this field makes me sad and concerned. So can you tell me why you are choosing no radiation? I know why I didn’t want it but wondering what your reasons are. What type of cancer do you have? Oh. I also have to take aweful aweful hormone blockers. I wish I could find a natural treatment that didn’t cost $60k.

I’m not sure what extra nodal extensions are. This diagnosis is all very new to me. I have never even had a family member or anyone I know have cancer so I don’t know a lot of the terminology. I just know that I had 3 lymph nodes removed at time of lumpectomy (pea sized) and 1 of the 3 had cancer. The type of cancer I have is ILC or invasive lobular carcinoma which is known to possibly travel to bones, brain, lungs etc. I didn’t want to have to worry about it traveling and I wish they had radiated the lymph nodes but my oncologist said the side effects of radiation can be life long and miserable so she spared me the lymphedema etc that I could be suffering with now had she radiated the lymph nodes. It’s just all very scary for me because a recent birth be scan revealed a spot on my femur. A large 10cm x 2cm spot. They tell me they think it is benign but it has the signature (ribbony, circular pattern) of Chondrosarcoma (bone cancer) so now I’m waiting to see if Mayo will take me. My oncologist referred me out. She hadn’t even had a conversation with me. She had her nurse message me in the pt portal to tell me I may have bone cancer. I got real upset in the portal when I read it and messaged back so a day and a half later the oncologist nurse called me but couldn’t answer any questions because she said “it needs further evaluation.” I’m so hurt by the way I have been treated. I have been waiting for over a week now for Mayo to decide if they can take me or not. In the mean time I have no one who can tell me anything about this type of cancer if I do have it. If it’s not cancer google says it is an endochondroma and I will need surgery but what kind of surgery. Can’t believe they treat people like this. I don’t blame Mayo but I’m upset with the cancer hospital that referred me. They are a BIG hospital and I think of the thousands of people they are treating like this. On top of all this My husband is being treated there rt now for prostate cancer and their radiation machine has overheated and broken down a few times during his treatment. It’s so scarey. So now I wonder did I get a secondary bone cancer from their failing radiation machine? And what’s it doing to my husband . He wants to go to Mayo but he will probably be done with treatment by the time the referral is approved. Idk if I answered any of your question but thank you for letting me vent.