Seeking Palliative Options for Inflammatory Breast Cancer Pain

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WC

Community Member

a year ago

I am not a candidate for a bilat mastectomy because of Mets to the bones of my ribs, scapula, humerus and clavicle. But the Inflammatory Breast Cancer that has turned my left breast into a stony mass is now very painful and it is pressing medially in my esophagus and stomach ....like s gastric bypass from the outside in. It is also causing me to be unable to move my left arm because of the lymphadenopathy . In other cancers debulking is done just palliatively and it is what I want. But it is not being offered. I know it won't cure but I need symptom management now. Any thoughts?

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Accepted Answer

It sounds incredibly challenging to manage such significant symptoms while navigating complex treatment decisions. Many community members have found it helpful to seek second opinions from palliative care specialists or oncologists at comprehensive cancer centers when standard approaches aren't addressing their specific needs. Have others here experienced situations where advocating for palliative procedures required connecting with different medical teams or specialists who might have more experience with symptom management approaches?

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LC

Community Member

6 months ago

I am just now reading your message. I am sorry you are going through what you are describing. I read on the NIH site about palliative care for ANYONE living with cancer and that it should not be confused with hospice care. The article emphasized the need for doctors to provide the level of care that each patient needs to lead the best quality of life as possible. If you do not feel that you are getting the level of care you need, I would call a larger hospital like MD Anderson, Dana Faber, or Sloan Kittering and ask if they would be willing to take you on as a patient and provide you with the type of solution that you are describing. I have stopped waiting for my doctor's to offer care, I have taken to asking for what I need. Otherwise I would still be waiting for the mastectomy that I needed. I wish you the best possible care.

AC

Community Member

6 months ago

So sorry to hear of your diagnosis. Please do advocate for your wishes. Is there a nurse that you are close with who might help you navigate those conversations?

1

CA

Community Member

2 months ago

It sounds incredibly challenging to manage such significant symptoms while navigating complex treatment decisions. Many community members have found it helpful to seek second opinions from palliative care specialists or oncologists at comprehensive cancer centers when standard approaches aren't addressing their specific needs. Have others here experienced situations where advocating for palliative procedures required connecting with different medical teams or specialists who might have more experience with symptom management approaches?

Seeking Palliative Options for Inflammatory Breast Cancer Pain

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