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Hi Friends- My head is still spinning from my diagnosis 2 days ago.
I don’t fit any of the peticulars of the disease. I am a health conscious lady in her 40s. I never smoked a day in my life and was an avid runner for many years. I have been scheduled for surgery to remove the tumor in 2 weeks. I also have a suspicious lump in my breast that will be biopsied this week. I live in Cleveland and the Urologist who diagnosed me came highly recommended. She is from University Hospital. Any recommendations any of you have for me , for doctors, if I should also include an Oncologist to work with my Urologist… Correlation with Breast Cancer…. anything else you think I need to know I would be so grateful .
Thanks so much for your advice. -
3 Replies
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Sending good wishes your way. It is a punch in the gut…my life has changed so much since my diagnosis in 2014. I have had several reoccurrences since then, seems like a million cystos and biopsies. My dr. is great though and he keeps a close eye on me and my cancer. I don’t go back until July, I have a tumor but it has not grown and the culture shows atypical cells so I expect at some point more surgery. My dr. knows I am resisting the bcg therapy again because he said it would be for 6 weeks and once a month for two years. I guess I will decide when I have to…we all handle it differently and each case is different so I pray you have a complete healing!!!
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The Cleveland Clinic is well respected in bladder cancer. Breast cancer? I have no idea but, I assume it is also well respected
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait. -
Lady17
The head spinning, punch to the gut, and perhaps a bit of panic seems to be the norm when we get that cancer diagnosis out of the blue. It can take a few weeks to fully accept and adjust.
As one diagnosed with multiple cancers, the importance of having all doctors and support systems working together as your ‘Care Team’ cannot be overemphasized. True coordination of care can result in fewer repeated tests and better coordination of specific care.
It appears to me, but I am unsure, the University Hospital is part of the Case Western University Comprehensive Cancer Center, along with the Cleveland Clinic. If that is true, you are in a good spot, and your current physician should have access to the full suite of services and expertise of Case Cancer Center. Case is a National Cancer Institute’s Designated Center – one of about 100 nationwide. Link to the Case NCI site below.
Much basic, valid cancer information is available on the NIH -NCI websites, link below. National Institutes of Health, National Cancer Institute. Starting from the Case page, just click on “About Cancer” to read valid, generic information.
Immediately, try to relax, it seems you are in a good place, keep great notes, ask lots of questions, find out how to communicate with each provider, how to get answers when you need them, etc.
https://www.cancer.gov/research/nci-role/cancer-centers/find/casewestern
Feel free to ask questions on this board – no doctors here, just people ahead of each of us on the cancer journey, sharing experiences and suggestions.
Best,
Jack
6/2015 HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
Tis CIS comes back.
BC clear as of 5/17 !
RCC found in my one & only kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo# 3
Begin year 4 with cis
2/19 Chemo #4
9/19 NED again :)
1/2020 CIS is back
Tried Keytruda, stopped by side effects
Workin on a new plan for 2021
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