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- This topic has 3 replies, 2 voices, and was last updated 4 months, 1 week ago by
DamJan.
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October 2, 2024 at 12:19 pm #47923
DamJan
ParticipantHi all,
My husband was diagnosed with bladder cancer almost a year ago. When they first did his TURBT, they said he had high and low grade tumours. Then, post TURBT, they said only low (but also said that was inconclusive). He did his first 6 weeks of BCG, followed by one three week session. After both they did cystoscopies. The first one revealed the growth of “cells” (but she said no tumours – but we are unsure what she means as she won’t explain what type of cell growth is showing). The second one showed more growth of “cells” (but again the doc said no tumours).
Even though the cells seem to be growing, the doc wants my husband to stick with BCG. We are very confused as it doesn’t seem to be working and she is resistant to do a biopsy to determine the grade of the cancer. It seems to me that it would be critical to know if we are dealing with low or high grade tumours. I am thinking it’s time for a second opinion, but am unsure how to even do this in Canada. Our gp is not great and resistant to a second referral. And, without that, we are stuck. We could go to the US, but d0n’t even know where to start. His current urologist is terrible. For example, she will not meet with us to discuss treatment options, but instead has a follow what I say approach. We have asked for an appointment to talk about next steps and are told she is too busy and will see him at the next cystoscopy.
Any advice? Urologist recommendations in Victoria or Vancouver (we live on North Vancouver Island) or even the US?
Thanks!
October 2, 2024 at 8:51 pm #47924Joe
ParticipantI only know a urologist in Vancouver Island.
John Kinahan MD
Address: 1503 Hillside Ave, Victoria, BC V8T 2C1
Hours: Closed ⋅ Opens 9 a.m. Thu
Phone: (250) 384-8515
I do not him personally, but he is the owner of a company called Silverado Research Inc., who does clinical studies in the urology field. In recent years, Selverado Research Inc recruited BCG unresponsive patients for Merck’s global clinical trial of BCG (Merck Onco-Tice) + Pembrolizumab(Keytruda) for BCG unresponsiveness. Note that Silverad completed is clinical trial and not longer recruiting patients. Anyway, I presume that Dr. Kinaha should be familiar with the topic on BCG unresponsive, which you seem to be interested in. Incidentally, the official clinical trial number is NCT03711032 and you can do search at Clinicaltrials.gov site.
October 3, 2024 at 2:38 am #47928Joe
ParticipantIncidentally, I think UBC/VGH is an centre of excellence/expertise for bladder cancer in Canada. If I remember correctly, in the past, I heard Dr. Alan So, an associate professor at UBC urology department talking about accessibility of a second opinion and mentioned that a bladder cancer patient from Vancouver Island visited to UBC/VGH for a second opinion. I think Dr. Peter Black – professor in UBC urology department and Dr. Alan So – associate professor are specializing especially in bladder cancers at UBC/VGH. Perhaps, you can contact their urology clinic and find out about a second opinion. Also, I have listed the link to second opinion in BC. Hope it helps.
“urology.med.ubc.ca/bladder-care-centre”
Urology Clinic Contact
Tel 604 875 5003
Fax 604 875 5604“www.healthlinkbc.ca/health-topics/getting-second-opinion”
October 3, 2024 at 10:44 am #47929DamJan
ParticipantThank you!
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