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need help/advice, in Virginia

3 years 3 months ago #49257 by caretothepeople
A second opinion is often a wise choice if you are feeling confused or if there is conflicting information from doctors. Ultimately, the choice of treatment will effect your father and your family the most, so it's often in your best interest to make sure you have all the information you need and feel that whatever treatment you select is line with your father's wishes and preferences.

Here's some articles that have helpful tips for going about getting a second opinion on a cancer diagnosis:

http://www.cancer.net/navigating-cancer-care/cancer-basics/cancer-care-team/seeking-second-opinion

http://www.mayoclinic.org/diseases-conditions/cancer/expert-blog/cancer-treatment-second-opinion/bgp-20056385

As well as a great list of questions to ask when you do meet with the doctor to confirm the bladder cancer diagnosis and discuss specific options:

http://www.cancer.net/cancer-types/bladder-cancer/questions-ask-doctor

http://pathology.jhu.edu/bladdercancer/questions.cfm

Hope this is helpful, and remember you are your own most powerful advocate. Wishing you the best.

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3 years 3 months ago #49252 by sara.anne
Probably the first thing that you should do is to get a copy of the pathology report. This should have been given to your dad, but sometimes...especially with older patients, it just doesn't get there.

Another option to to request a path consult from Hopkins. They can review the slides and the path report and make recommendations and a diagnosis from that.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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3 years 3 months ago #49251 by nmb
Thank you Sara Anne for your reply, I appreciate the information. It feels like we are at the mercy of the doctors, meanwhile we are left in the dark of what is to come, and, whether what they have decided to do is even appropriate. I am also a medical person so I understand the system and sometimes things take time, but I am increasingly frustrated by the lack of communication. I don't know if my dad is really up for traveling to Johns Hopkins. I was having a hard time just getting him out of the house at all when I was visiting. Unfortunately I live far away, otherwise I would take him myself. Thanks again for your thoughts and hopefully we will develop a good relationship with his doctors so that he can get the appropriate care.

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3 years 3 months ago #49250 by sara.anne
Welcome to the Forum...even though you probably do not want to be here!!

As you have already noted, your father's case has "red flags" all over it. I am NOT a physician, but I would agree and urge him to get a second opinion at a place that treats lots of bladder cancer before BCG or any other treatment is started. (A delay will not be a major issue in effectiveness.)

It is considered good medical practice to do a second TURB before a final diagnosis is made, especially when there are questions from the first. During the initial TURB, the urologist is sort of "guessing" where to take samples from his visual inspection. After the initial report is in, he has a much better idea of where questionable areas are and can ensure that he gets proper samples from those places, which include muscle tissue.

Unfortunately, Univ of Virginia, while excellent in some areas of urology, is not noted for expertise in bladder cancer. The same is true of Medical College of Virginia in Richmond. Since your father will have to travel a bit anyway, it would be worth the effort to go to Johns Hopkins in Baltimore which has a superb reputation. Other possibilities include Vanderbilt in Nashville, and Memorial Sloan Kettering in NYC.

It is critical that he receive the correct diagnosis and treatment.

As for the urgency and burning, this could very well be due to the TURB. After all, they did cut little pieces of the bladder out!! Also, some types of bladder cancer can cause this. When all the poking and prodding are done, he should be much more comfortable.

Best of luck to you all.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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3 years 3 months ago #49249 by nmb
Hello everyone, have looked through some posts and this seems to be a wonderful resource. My 82 year old father was recently diagnosed with bladder cancer, and had his TURBT at the end of July. Two physicians from the practice have given us differing opinions regarding staging of his cancer and as it stands now, he is scheduled to start BCG treatments on 9/11. Another physician he saw at the practice felt that the cancer could be more invasive and led my parents to believe a different treatment is indicated. However now I'm not getting a straight answer from this practice about where things stand. I am thinking we should get a second opinion so that we get the right treatment. My parents are in Virginia in the Shenandoah Valley. Does anyone have any recommendations at UVA? My dad is also having a lot of frequency and incontinence at night. I'm wondering if this will improve or is this going to be his new normal? With his advanced age the diagnosis has been a big blow and he is reluctant to leave the house because he is always going to the bathroom.

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