A few questions

DLTurner, I'm so sorry that your mother, and you and the rest of your mother's family, have gone through all this.

This probably won't make you feel any better, but from what you've described, it sounds as though it's likely that nothing could have been done to change the outcome, or give your mother those extra 12 months.

Most breast cancer is very slow growing.  Doctor's make their assessments and projections based on how most breast cancers react.  So when the doctors said that they thought your mother had 6 - 12 months to live, they were saying that based on what would happen in most cases.  But your mother's case clearly was an exception.  That sometimes happens.  A beloved longtime member of this board was recently - just a few months ago - diagnosed with spinal metastasis.  Everyone, including this individual, expected that she would move on to treatment and live many years. Yet she was an exception and just a few months later, to the shock of everyone here, she's gone. There was just no way to know.

Would a brain scan and an earlier diagnosis of the mets would have made a difference for your mother?  Because your mother had multiple lesions on the brain, the answer is "most likely not". 

Then there is the question of screening.  Brain scans are not usually given to breast cancer patients unless there is evidence that there might be brain mets.  Sometimes mets develops first in the brain but that's not usual - usually mets starts somewhere else and then eventually may move to the brain.  So since all your mother's other scans were clear, and she had no symptoms, there was no reason to do a brain scan.

Here are a couple of links that explain this:  Frequently Asked Questions about Brain Metastasis     and    Screening for Brain Metastases  An Interview with Andrew Seidman, MD, Memorial Sloan-Kettering Cancer Center

I am terribly sorry for your loss and I understand your need to ask questions and to find out "why?".  Sometimes the answer is simply "There is nothing that could have been done to change what happened."

Hi DL--So sorry for your loss and for the sense that things might have been different, at least for the past year.  I don't know about the protocols for when brain scans are done as part of the initial diagnostic work-up.  You might want to post on the Inflammatory Breast Cancer threads, to see if others have gotten brain scans.  It does sound like you were very poorly informed about treatment and possible outcomes, including metastatic disease. Inflammatory Breast Cancer is one of the most aggressive forms of breast cancer, so your mother was at more risk of disease progression or even of mets at initial diagnosis.  The prognosis for IBC, in general, has improved, but still it is an extremely aggressive disease with survival statistics that are not terribly high.  You should have been told this, and that reaching an initial apparent disease-free state did not guarantee an "all clear" as you stated.  I do work in a Neurology Department, and all of the symptoms you quoted, would have been red flags for brain/nervous system issues.  Do you know if IBC is treated on a regular basis at the hospital your mother was treated at?  That may be part of the problem you are experiencing.

I'm so sorry for your loss. My mom also died of IBC at 38. And I was half her age when I found my first mass. I just had surgery and awaiting results.



All I can say is lots of times docs fail and sometimes they don't. But yes I think ppl are misinformed about the extent of modern medicine. It's hard to know when the doc knows best and when your gut and/or Dr Google know better. Sadly I've had a lot of chances to watch their limits and mistakes at the expense of lives. But you also wouldnt wanna operate on yourself, though tempting at times cause u know your body best, so they still have a place.



And I believe my mom did the best she could and everything else was ment to be. Docs need to take responsibility for their actions. But patients need to too, and not be sheep. And obviously at the end It's all part of the master plan.

❤I'm so sorry