Occult Primary with Lymph Node Metastases

I started to reply, but I don't have occult with lymph node metastasis. I'm sure someone will come in and say hi. I do have occult but not to my lymph nodes that I know of.

I'm sorry you had to join, but there are a lot of great women with so much knowledge in this forum.

HI Snaffle53,

I was diagnosed with occult BC in Nov 2016 based on enlarged lymph node. Mammo, ultrasound and MRI all showed no breast tumor. Treated at Sloan Kettering: first chemo (AC-T), then sentinel node biopsy. By the time they did the surgery, all traces of cancer were gone from the node so they only took a total of 3 lymph nodes. Next I had 5 weeks of whole breast radiation and now I'm on Tamoxifen (couldn't handle side effects of aromatase inhibitors). I have been cancer free for almost 4 years now. While I had some complications throughout, this treatment plan worked for me.

I had same diagnosis. I see you are in 2013 , long time ago. I’m having bad ptsd about not doing a. Masectomy but they didn’t suggest it then either . I had 11 nodes removed . 6 still positive had lymph chin, node dissection , radiation . Just curious how you’re doing and what you decided on treatment , masectomy or not ?

Hi @nataliakelley

I just found this site about a week ago. I haven't even posted about my case yet, just been reading so far. But I wanted to reach out to you since I, too, am newly diagnosed with occult breast cancer. (what a crazy thing, huh?!) It's only been about a month since I found out about this new (and strange!) bc diagnosis. It was a total fluke that it was found at all as I went in for a left breast ultrasound and the tech inadvertently included part of a suspicious looking node. Radiologist caught it in a second and sent her back in to do an ultrasound of axilla. And the rest is history. So, far I've only had that one node biopsied which showed breast cancer (ER/PR+, HER2-, Grade 2) And they are calling this a "recurrence" since I had the same type of breast cancer 24 years ago!!!! Yes, in 2002, at the age of 42. I'm 66 now!! Of course there is a lot of guessing with this occult stuff, isn't there? Because no one really knows how or why it happens the way it does. Perhaps there was a small primary tumor that got erased by my immune system, but not before it spread to the nodes? Or has it actually been in this node all along, laying dormant, and for whatever reason decided to spring to life now??

I have a PET/CT scan in a couple weeks which I am quite anxious about. Well, not the procedure — but waiting for the results!! Other than that I've met once with a medical oncologist and once with a breast surgeon. It's still pretty early days for me on this journey. Thought we had a surgery plan, but just yesterday his office called and scheduled another visit for next week. I was told he wants to talk to me about other options. ???

You said you were starting chemo on 3/03. So you must be in the thick of it now. I dearly hope you are coping with it well. I was so thankful that I did not have to do chemo in '02. It was truly the thing that frightened me the most. I am sending you LOTS of good thoughts Natalia, and MANY healing wishes. And a really BIG {{hug}} !!! (And if anyone else is reading this, and needs a HUG, please help yourself to that one!!)

Best wishes,

Julie

@love4allcreatures Welcome to the group no one wanted to join. I also have occult BC found inadvertently on mammogram (thank goodness for the tech). Shortly after the diagnosis surgery was scheduled but then my case went to a breast cancer board and another treatment was recommended. I started immediately on letrozole and then Verzenio, had a break for a lumpectomy (papilloma, not cancer, in the breast) and sentinel node removal then radiation. I’m back on both meds now. There’s so little known about occult breast cancer and I occasionally look online to see if anything new has been found. This is also my 2nd round though in the opposite breast.
Good luck to you. Please let us know how you’re doing.

@love4allcreatures Julie, I am doing okay with my meds. I do get an occasional bout of diarrhea but as long as I’m careful with my diet I’m fine.

So to explain a few things. In 2015 I had DCIS in my left breast. That was treated with lumpectomy, nothing removed from the lymph nodes, followed by radiation then 5 years of exemestane and anastrozole. In 2024 I had a routine mammogram where a lymph node on the right was suspicious. That led to an ultrasound, then biopsy which proved BC. I also had a papilloma in the right breast. I have trust in my care team so when the surgeon explained that she’d remove 3-5 nodes as well as the papilloma I was fine with that. The radiologist explained the reasons for radiation with occult BC in particular and with the little bit of research I was okay with that. The area radiated this time was much larger going all the was above my collar bone on the right and under my arm as well as the breast. The number of treatments was much less, 15. BTW, I was told that I could have radiation on the left with the new treatments and how much time has passed.
My BC would probably be stage 2 if they could stage occult. But it was grade 3 so aggressive. I also have a family history with my sister who passed in her 40s from breast cancer. I think all this was part of the team’s decision to be a little aggressive with treatment.
Please keep in touch,

Laura