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Dec 5, 2018 12:07PM
Hi jo6359, I'm sorry to hear about your friend. It is true that at Stage IV all treatment, including mastectomy, is only palliative - to relieve symptoms such as pain or help an organ that isn't functioning properly - because there is no cure for metastatic breast cancer. All we can do is try to push the cancer back enough to give us a good quality of life. It sounds as if her cancer has metastasized (Stage IV), and it's important to know where it has spread, I'm guessing there is organ involvement if they are recommending hospice already (and the fact that she's currently hospitalized), and it's either so extensive in her organs that it's causing problems or her health//age and failure to respond to chemo gives a very poor prognosis. Treatments at Stage IV only get harsher and more invasive, and at some point all of us Stage IV people have to make the decision if our bodies can handle any more and if the side effects of the treatment will do anything to improve our quality of life. When the doctors recommend hospice, it's because they don't think further treatment will do anything to improve her quality of life. It can't be cured, it's only about how well we live until we die.
IBC is very aggressive. Mine seems to be more aggressive than most and I can tell you how quickly it spreads, right before my eyes, twice already in one year, so fast it will make your head spin. Mine had spread extensively through my skeleton, liver, chest wall, into my brachial nerves and my skin within days of diagnosis. Although mine responded well to chemo the first time, within a couple months it came back with a vengeance. It's a stubborn beast, but I am much younger than she is, in good shape and healthy enough to keep fighting it for now. For someone who is older and in poor health, it's a tough battle. When a patient is older, frail, in poor health, there's a very real risk that more chemo could kill them because their body can't handle it, if the mets are in the lungs, liver, brain, surgery to relieve those symptoms is also very risky in an older patient who is already in poor health.
It's hard to discuss treatment options without knowing her pathology, where the cancer has spread, what chemo she's tried, and what symptoms she's having, but IBC can be very stubborn. Despite mine being strongly HER2+, it doesn't respond to Herceptin and Perjeta even though most (but not all) of my mets respond to it. Sometimes they will try a different chemo if she became resistant to whatever they tried the last time, but it depends on her overall health and prognosis. I say this with all sincerity and in a caring way, the family needs to let her decide what she wants with the guidance of her doctor. It's cruel to push a person to do more horrible treatment when there is no cure, it's only worth going through more chemo/surgery/radiation etc if there is a strong possibility that it will give her many more GOOD months of life. No one should feel pressured into spending their last days going through horrible treatment just so the family can feel like they've tried everything, and that's the point of hospice, to let her live out her final days in comfort. I know it's hard for family to feel like they are giving up, but it's a decision that should only be made by her after discussing with her doctors. If the doctors say there is nothing else left to do or that there's no benefit to going through another harsh treatment, urge her get a second opinion if you wish but please don't push her into doing more treatments if she doesn't want to. There is no cure for breast cancer that has metastasized.
If she hasn't already, now is a good time for her to complete an Advanced Directive (and DNR if she wishes) so that she has a legal written document that spells out her treatment wishes, what life sustaining treatment she is/isn't willing to have.
IBC Stage IV de novo - presented in right breast, within days spread into left breast, skin, chest wall, metastasized into brachial plexus (lost complete use of right arm for several months), liver and throughout skeleton.
9/8/2017, IBC, Both breasts, Stage IV, metastasized to bone/liver/other, Grade 3, ER+/PR-, HER2+ (IHC)
9/26/2017 Taxol (paclitaxel)
2/6/2018 Perjeta (pertuzumab)
2/6/2018 Herceptin (trastuzumab)
11/26/2018 Taxol (paclitaxel)
1/30/2019 Whole-breast: Breast, Lymph nodes, Chest wall