Just diagnosed, in treatment, or finished treatment for IBC. Posting pictures of symptoms is prohibited per our Community Rules -- you are encouraged to seek medical advice from your doctor in the event of any concerns.
Aug 15, 2020 11:04AM
My mom is 74 diagnosed this month with Stage IV IBC, she has a mass that has invaded the skin that she hid from us thinking it was just shingles, she has mets to the bones and micronodules in the right lung that are suspicious of metastatic disease. The surgeon who did the biopsy failed to order the receptor testing. When we went to my moms hema/oncologists (she sees for a blood disorder) for the PET scan results and biopsy results I think they realized for the first time no one ordered the receptor testing. So it was ordered that day (10 days after the original biopsy). I am so angry about this. On top of this the radiation oncology facility told me it would take two weeks to get the radiation set up because of authorizations and her insurance didn't even require a preauthorization. So thankfully after arguing we got it scheduled for Monday. My mom wants treatment but is not interested in discussing her diagnosis, treatment or learning about the cancer she has. She completely is relying on me and my father to make decisions, listen and learn. I contacted a large hospital about an hour away that is associated with Moffitt Cancer Center, my mom doesn't think she can travel far so this was the closest option. She starts radiation in our town on Monday to hopefully make the lesion on her breast better (it is necrotic and has a ulcer). The doctors here where we live have been very gentle with her and compassionate towards her telling her that we cannot cure it but can treat it. The cancer hospital I contacted has an opening next Thursday during a breast cancel panel for new patients where she would be seen by a radiation oncologist, medical oncologist and breast surgeon if we have the receptor tests back. I looked up the 3 three doctors that would see her on Thursday and they all have very r negative reviews online, alot of people say they are rude, uncaring, not compassionate. My mom is terrified of doctors, prior to her diagnosis of polythecemia vera had not seen a doctor in 35 years despite having good health insurance. I think she would get better treatment at a larger facility but worry that if she ever gets hospitalized where we live she will not have a local oncologist with privileges at the hospital, I am also worried that the doctors will scare her so much she will withdraw and become more depressed and I worry about the travel back and forth. We are supposed to also see our local oncologist the same day and time as the other appointment and I don't know which one to go too. She wants to start treatment immediately and i don't want any further delays. When I tried to discuss this with her on which one to go to, she told me that she will do whatever I know is best for her. Does anyone have any input on how treatment is when you have to go out of town compared to treatment locally.
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Aug 15, 2020 11:47AM
I'd say generally speaking with an advanced dx and age I would stick to closer treatment center. This will be time intensive as it is, car travel can be exhausting and nauseating on its own, and as her disease progresses it's possible she will feel quite unwell.
Best wishes. Remember to take care of yourself too
Initial dx at 50. Seriously???? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." blog: nevertellmetheodds2017.tumblr....
12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- (IHC)
12/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel
2/14/2018 AC + T (Taxol)
8/13/2018 Whole-breast: Breast
2/2020, IDC, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2-
3/18/2020 Taxol (paclitaxel)
3/19/2020 Tecentriq (atezolizumab)
11/26/2020 Abraxane (albumin-bound or nab-paclitaxel)
12/10/2020, IDC, Right, Stage IV, metastasized to lungs, Grade 3, ER+/PR-, HER2- (IHC)
12/16/2020 Femara (letrozole)
1/28/2021, IDC, Left, Stage IV, metastasized to bone, Grade 3