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My mom diagnosed May 5

4 years 6 months ago #46409 by Hudsongrl
Best of luck to your mom. She is lucky to have you advocating for her.

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4 years 6 months ago #46405 by bc-caregiver
My 68 year old mom was diagnosed May 5 with high grade muscle invasive BC. The CT scan did not show spread to lymph nodes but did show spot on her liver that they suspect is benign hemangioma (cluster of abnormal blood vessels) so she has MRI with contrast dye tomorrow to evaluate. Hopefully after that we'll be done with staging and can start creating her treatment plan, which has been complicated by her kidney function hovering around 60% (even with stents in both ureters).

Two urologists have strongly recommended radical cystectomy with removal of urethra too. She's met with an oncologist who is recommending 6 cycles (or 4 months) of neoadjuvant chemo (carboplatin/gemcitabine), with both drugs administered on first week of the cycle; just gemcitabine on second week; and neither on the third week.

I live in DC and my sister lives in CT, but our mom lives in Hampton Roads, VA (specifically Newport News). I thought we had more time to investigate having my mom treated at Johns Hopkins but things became accelerated this week when we found out that her creatinine level had increased again and it seemed like neoadjuvant chemo may not be an option.

Yesterday and today, I put in a lot of time and effort making sure the medical concierge at JHU had all my mom's info and records, only to find out that they don't accept patients with out-of-state Medicaid! I'm feeling really discouraged. I live so close to JHU and it is going to be hard to let go of a chance for her to be treated there, both because they are the best in the country and because it will be much more convenient for me if she recuperates at my home. I was down there last week for 4 days and haven't fully recovered.

I guess I'm looking for any insights. I already emailed JHU asking if they would reconsider since my mom has both Medicare and Medicaid. Boy, I wish I was rich so I could just pay for it for her!

Tonight I researched other treatment centers that seem to accept Medicaid. Does anyone have feedback on Sentara Norfolk General, Riverside Regional Medical Center, the VCU Massey Cancer Center, the UVA Cancer Center, Medstar Georgetown Cancer Network, Virginia Urology, or Urology of Virginia? I know all of their accreditations and designations, and annual numbers of cases for some of them, but am wondering what about any of your experiences or direct knowledge of these treatment centers.

I feel very grateful for this group. Thank you for being here.

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