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Bladder Cancer Group: Introduce yourself and connect with others
Bladder Cancer | Last Active: 6 hours ago | Replies (288)Comment receiving replies
Hi, my name is Daniella, my husband is 58 and diagnosed with low grade bladder cancer in August. Had a TURBT, they scraped the bladder and he received chemo. He has not recovered well since they surgery and seems to be declining, even though recheck of the bladder shows good healing/progress. Wondering if bladder cancer returns this quickly? Wondering if there is cancer somewhere else? Wondering if anyone else has had anything similar to this? If yes, please share! We are going down rabbit holes trying to figure out what to do to get him well. His symptoms currently are extreme fatigue, constantly taking deep breaths (sort of a yawn/gasp but not), sore legs, achy bones, bladder and abdomen pain, ongoing pain in left kidney which has been checked repeatedly and does not appear to be cancerous. Thanks so much everyone!
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Hello @kittyhawk4 and welcome to bladder cancer support group. My husband had a high grade bladder cancer diagnosed at the age of 67 in 2019. The frequent recurrences, turbts, etc pushed him to have a radical cystectomy with neobladder in 2021. Along the way he had chemo, BCG, immunotherapy and many CT Urograms, cystoscopies and occasional PET scan. I can't say that he ever had all the symptoms you are describing. Some treatments left him with extreme fatigue and poor appetite or temporary bladder discomfort but those symptoms gradually resolved.
Initially his blood in the urine was misdiagnosed by local urologist and despite local cystoscopy and CT his tumor was missed. Only the abnormal cytology, which was ignored, was caught by a thorough doctor during an executive physical at Mayo Clinic. As a result most of his cancer care has been done at the Mayo in MN.
Because of our experience, I am quick to recommend a second and even third opinion when things just don't seem to be going right. Asking for a referral to a big cancer center or referral center can be a most important step. Sometimes, as difficult as it seems, travel for medical care can be lifesaving. We drive 10 hours to Mayo and have for 13 years for my rare head and neck cancer and I feel they are why I am alive today. You are your husband's best advocate and you both must take control of his medical care by researching and asking questions. It is never wrong to request a second opinion. Do you have a big referral center nearby?