Bone lesion with no lymph node involvement
Hi everyone,
I was diagnosed with invasive lobular breast cancer (ER+/PR+/HER2-) in January 2024. My oncologist says it’s closer to luminal A than B, with a Ki-67 ranging from 10% to 40%. I went through chemo, which reduced my tumor by about 80%, and had a quadrantectomy with clear surgical margins and negative lymph nodes. Now, I’m on hormone therapy (Zoladex and Anastrozole) and Zometa.
The main question mark in my case is a lesion in my left pubic bone. My doctor described it as “typical” of metastasis, but he can’t say for sure. What’s been hard to reconcile in my mind is how this could be metastatic, given that I don’t have any affected lymph nodes, no lymphovascular invasion, and a relatively low Ki-67. It just doesn’t fully add up to me.
Has anyone else been in a similar situation with bone lesions that remained uncertain? Did it end up being metastatic or something else? I’m trying to accept the ambiguity here, but I’d really appreciate any insights or similar experiences. Thanks so much for reading and any input you can share.
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Hi @helloworld , I also have an indeterminate lesion in my acetabulum (hip socket) which was found on an MRI about three years after my lumpectomy. I had one positive node and LVI but did not do chemo since my Oncotype was 24. The bone tumor radiologists ordered another MRI in a more powerful 3T machine and decided the poorly marginated lytic lesion was a met (95% chance) or a benign lesion mimicking a met. Unfortunately there is a >70% chance that a biopsy would irreparably break my hip. I had a FES PET scan looking for something else ER+ to biopsy but the only things that lit up were areas of my lungs known to have radiation induced pulmonary fibrosis which has estrogen receptors. The bone lesion didn’t light up but the radiologists weren’t sure the tracer would reach it. The other possibilities are a met with flipped receptors or from an unknown primary. I’m having a MRI next month to see if the lesion has grown.
Is there a possibility of a biopsy for your lesion? Has your doctor ordered a PET scan? Specialty radiologists were able to eliminate other types of bone tumors based on my lesion appearance on the MRI.
The ambiguity is disconcerting but I would rather be able to walk than know what the lesion is even if treatment would slow progression. I’m hoping for the 5% chance of benign and stability on my next MRI. It would be helpful if they are able to figure out what your lesion is. Sometimes there are no easy answers.
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I am sorry that you find yourself in this situation. To put it very simply, bc cells can travel through the bloodstream as well as the lymphatic system. I had a single positive sentinel node and a single 2cm bone met which was a surprise to everyone.
While we look for things to follow a predictable, logical path, bc has many twists, turns, and possibilities that doesn’t always make sense. Take care0 -
@helloworld13, I have "innumerable" sclerotic lesions with no lymph involvement at all. As @exbrnxgrl explained, the cells can travel without lymph involvement. Everybody is different, there are always different twists. In your pocket with support.
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@helloworld13,
Sorry you find yourself dealing with this disease, much less the ambiguity of not knowing for sure what stage you are. I will say, as your oncologist probably already has, that invasive lobular carcinoma is known as the "sneaky" cancer for a very good reason. It has a habit of travelling about and showing up where least expected. My wife was diagnosed with metastatic ILC de novo almost 18 months ago; meaning she was never diagnosed at an earlier stage. To this day the docs have never found any primary tumor in either of her breasts or her lymph nodes but it is in her bones, bone marrow, and GI tract. So it is certainly possible that it can be in your breast and also in your bones without it having been detected anywhere else along the way. I don't mean to sound hopeless; just trying to be an honest broker with you. The good news is that if you do have metastatic spread, having it spread to the bones, especially in just one location, is about the best news you can receive under the circumstances. If you spend any time on this site you'll see the folks who have survived the longest are those with bone only mets. Docs also have the option of treating your type of condition more aggressively with an eye toward curing instead of just maintaining.
Hope that helps a little.
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Thank you all for your responses and support. It’s really hard to cope with the uncertainty and the possibility that I might already be facing a metastasis, especially so early on. I feel sad and disappointed to think that, despite all the treatment and monitoring, I might be dealing with metastatic spread right from the start. I try to hold on to the 10% chance I still have, but it’s a constant challenge to balance hope with realism.
My tumor has mixed ductal and lobular characteristics, and I imagine that the lobular component might be playing a bigger role in its spread, especially since it’s known to show up in unexpected places. I also have a low Ki-67 of just 10%, which makes it even harder to understand how something with such a low proliferation rate could already metastasize at what should have been an early stage.
Thank you all again for your honest perspectives. It really helps to know that others understand what this feels like. 🫶🏻
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I don’t know if this will make feel any better, but bc does not follow a predictable path for everyone despite the knowledge we have of the disease.
I never even got to initial tx for my 4 cm grade 1 breast tumor, originally stage II, was found. Had surgery and then on an unrelated PET scan, my bone lesion was found. They were able to biopsy it and it was a twin to my breast tumor. All the treatment for stage II went out the window and within six weeks of my surgery, I was re-staged as stage IV. I will also add that just a year before, I had a clean mammo. Because I only had one positive sentinel node, the doctors surmised that it spread through my bloodstream, though we will never know for sure. And again, it was grade 1, so by all reasonable evaluation of my situation, this should not have happened. Yet it did, a 2cm bone met, a 4cm breast tumor and a clear mammo the year before. Unfortunately, there is still much that is not known about bc and despite, to some extent, understanding what typically happens to those dx’ed with bc, there seems to be a lot of unpredictable and unexplainable things as well. BTW, despite that rough beginning, I have lived for 13 years without any progression and no one has any idea why! Take care.0
