Idc, ILC, DCIS, double mastectomy, DIEP flap, and now liver?

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Idc, ILC, DCIS, double mastectomy, DIEP flap, and now liver?

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  • Rosiesmum
    Rosiesmum Member Posts: 19
    edited June 2019

    hello,

    I’ve recently moved (February) from a metro to a rural area and am having a heck of a time getting access to care. Currently diagnosed with pneumonia (after bronchitis to failed twice in 30 days) but ruling out lung radiation problem, and in ct scan the liver lit up and a mass was found on adrenals. Still haven’t seen an oncologist, am considering cancer centers of America. Anybody use them, have an opinion? Advice on what steps to take next? I’m off work a few days for the pneumonia and getting the other medical things lined up is a full time job so not resting much. Also a candidate for Lejeune water contamination coverage. Any support or guidance in the medical wilderness is welcome, please!

    Rosie’s mum

  • vlnrph
    vlnrph Member Posts: 1,632
    edited June 2019

    CTCA is a for profit chain so you better have good insurance or they probably won't take you as a patient. Try a search on this site or google to see what others have experienced. In my opinion, as a retired pharmacist, their data is questionable since they don’t select really sick people.

    Many community based clinics in the US now have relationships with academic or research centers so they can conduct tumor board assessment of individual cases on a remote basis. Perhaps you could update your profile in order to show your history, hormone receptor status, etc.

    Has anyone suggested surgical biopsies of the liver or adrenals?

  • Rosiesmum
    Rosiesmum Member Posts: 19
    edited June 2019

    thank you !

    I will look for more information on them. I have health insurance but I also should be covered by the veterans administration because I was exposed to toxic chemicals and drinking water as a child while living on a military base and breast cancer is one of the diseases that is linked to those chemical exposures. I have health insurance but I also should be covered by the veterans administration because I was exposed to toxic chemicals and drinking water as a child while living on the military base and breast cancer is one of the diseases that is linked to those chemical exposures. I’m not sure why my history is not showing up it’s entered I’ll take a look and see if I need to make some changes so that it shows up. I also have pneumonia right now and I’m very very tired. One problem is that we are several that I’ve been trying to see if Oncologist for months and I still have not seen one yet . I have an MRI scheduled for Friday to take another look at the liver and adrenal’s. That might be adequate and I may not need to go to the cancer center. It’s just all so exhausting after having moved and trying to establish myself as a new patient. Thank you so much for your reply.

    Both IDC and ILC were progesterone and estrogen positive H.E.R. 2 negative . One mastectomy and then the other mastectomy along with deep flap reconstruction . Still have ovaries and uterus but no menstrual period for a year or two and only one or two in the last five years

  • Cowgirl13
    Cowgirl13 Member Posts: 1,936
    edited June 2019

    Cancer Centers of America cherry picks their patients and this is how their 'cure' rates are so high.

  • KBeee
    KBeee Member Posts: 5,109
    edited June 2019

    I am sorry you are dealing with this uncertainty. I have no experience with CTCA, but if there is a large academic center near your house, you could consult there.

  • Rosiesmum
    Rosiesmum Member Posts: 19
    edited June 2019

    Thank you, that was my first choice but we are surrounded by an education and professional desert. Could not find a teaching hospital but I gave up searching after google couldn't find one within 100 miles. Before we moved here in feb, we were told that there's an excellent cancer center less than 2 hours away nut I cancer find it..

  • Rosiesmum
    Rosiesmum Member Posts: 19
    edited June 2019

    definite cancer on liver found in mri with contrast. Going to CTCA Monday...


  • KBeee
    KBeee Member Posts: 5,109
    edited June 2019

    Hoping they have a plan for you!!! Let us know how things go.

  • Rosiesmum
    Rosiesmum Member Posts: 19
    edited June 2019

    I’m still at ctca. They are keeping me 2 extra days to do a pet scan and evaluate with the oncologist before I head back home. Thank you for the support

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