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

Forum: Not Diagnosed With a Recurrence or Metastases but Concerned —

Meet others concerned about developing a recurrence or metastases.

Posted on: Jun 9, 2019 03:51PM

Rosiesmum wrote:

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

Dx 3/18/2013, DCIS, Right, 1cm, Stage 0, Grade 1, 0/1 nodes, ER+/PR+, HER2- Dx 3/23/2013, IDC, Right, 1cm, Stage IB, Grade 3, 0/1 nodes, ER+/PR+, HER2- Surgery 8/31/2015 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap, Tissue expander placement Dx 9/3/2015, ILC, Left, 1cm, Stage IA, Grade 1, ER+/PR+, HER2- Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy
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Jun 10, 2019 03:36PM vlnrph wrote:

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?

IDC too! 🎻💊👪🐩 🇫🇮 🌹🦋 Rt MX+DIEP 4-2011; ALND 5-2011 d/t micromets; TC X 4; tamoxifen; lymphedema 9-2011; switch to letrozole 3-2014 for 1 yr; bone mets 8-2018: Zometa, rads to spine, Faslodex/Versenio Dx 3/7/2011, ILC, 2cm, Stage IIA, Grade 2, 1/25 nodes, ER+/PR+, HER2-
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Jun 10, 2019 03:43PM Rosiesmum wrote:

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

Dx 3/18/2013, DCIS, Right, 1cm, Stage 0, Grade 1, 0/1 nodes, ER+/PR+, HER2- Dx 3/23/2013, IDC, Right, 1cm, Stage IB, Grade 3, 0/1 nodes, ER+/PR+, HER2- Surgery 8/31/2015 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap, Tissue expander placement Dx 9/3/2015, ILC, Left, 1cm, Stage IA, Grade 1, ER+/PR+, HER2- Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy
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Jun 11, 2019 12:03AM Cowgirl13 wrote:

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

Be the kind of woman that when your feet hit the floor each morning the Devil says: 'Oh crap! She's up! Dx 5/28/2009, IDC, Left, 2cm, Stage IIA, Grade 3, 0/4 nodes, ER+/PR+, HER2+ Surgery 6/16/2009 Chemotherapy 8/3/2009 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 12/21/2009 Hormonal Therapy 2/23/2010 Arimidex (anastrozole)
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Jun 11, 2019 07:11AM KBeee wrote:

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.

Karen. Dx 8/5/2013, IDC, Right, 1cm, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 8/26/2013 Mastectomy: Left, Right Chemotherapy 9/20/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 12/12/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 1/23/2014 Reconstruction (left); Reconstruction (right) Surgery 1/29/2015 Lumpectomy: Right Dx 2/2/2015, IDC, Right, 1cm, Grade 2, 0/0 nodes, ER+/PR-, HER2- (FISH) Dx 2/25/2015, IDC, Right, 1cm, Grade 3, 0/13 nodes, ER+/PR-, HER2- (IHC) Surgery 2/25/2015 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary; Prophylactic ovary removal Chemotherapy 3/31/2015 AC + T (Taxol) Radiation Therapy 8/25/2015 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy Femara (letrozole)
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Jun 11, 2019 01:24PM Rosiesmum wrote:

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..

Dx 3/18/2013, DCIS, Right, 1cm, Stage 0, Grade 1, 0/1 nodes, ER+/PR+, HER2- Dx 3/23/2013, IDC, Right, 1cm, Stage IB, Grade 3, 0/1 nodes, ER+/PR+, HER2- Surgery 8/31/2015 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap, Tissue expander placement Dx 9/3/2015, ILC, Left, 1cm, Stage IA, Grade 1, ER+/PR+, HER2- Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy
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Jun 13, 2019 11:14AM Rosiesmum wrote:

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


Dx 3/18/2013, DCIS, Right, 1cm, Stage 0, Grade 1, 0/1 nodes, ER+/PR+, HER2- Dx 3/23/2013, IDC, Right, 1cm, Stage IB, Grade 3, 0/1 nodes, ER+/PR+, HER2- Surgery 8/31/2015 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap, Tissue expander placement Dx 9/3/2015, ILC, Left, 1cm, Stage IA, Grade 1, ER+/PR+, HER2- Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy
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Jun 19, 2019 09:17AM KBeee wrote:

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

Karen. Dx 8/5/2013, IDC, Right, 1cm, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 8/26/2013 Mastectomy: Left, Right Chemotherapy 9/20/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 12/12/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 1/23/2014 Reconstruction (left); Reconstruction (right) Surgery 1/29/2015 Lumpectomy: Right Dx 2/2/2015, IDC, Right, 1cm, Grade 2, 0/0 nodes, ER+/PR-, HER2- (FISH) Dx 2/25/2015, IDC, Right, 1cm, Grade 3, 0/13 nodes, ER+/PR-, HER2- (IHC) Surgery 2/25/2015 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary; Prophylactic ovary removal Chemotherapy 3/31/2015 AC + T (Taxol) Radiation Therapy 8/25/2015 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy Femara (letrozole)
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Jun 19, 2019 12:00PM Rosiesmum wrote:

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

Dx 3/18/2013, DCIS, Right, 1cm, Stage 0, Grade 1, 0/1 nodes, ER+/PR+, HER2- Dx 3/23/2013, IDC, Right, 1cm, Stage IB, Grade 3, 0/1 nodes, ER+/PR+, HER2- Surgery 8/31/2015 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap, Tissue expander placement Dx 9/3/2015, ILC, Left, 1cm, Stage IA, Grade 1, ER+/PR+, HER2- Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy

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