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New diagnosis - non-invasive micropapillary cancer

2 years 8 months ago #50961 by MadLove
JHU has a full vote of confidence from my family. We're in Southern Maryland with about a two hour drive to Baltimore and will be making that trip 04-07-16 for my husband's (52, CIS) scope exam. Having access to and receiving excellent care has provided immeasurable peace of mind. That's a point we emphasized when breaking the news to our children (in middle school and college), that Dad was receiving care from a BC expert.

Husband's journey:
01/2015 1st cystoscopy
03&04/2015 TURBTs-CIS
07/2015 Finished BCGx6
08/2015 biopsy-BENIGN!
10/2015 Finished BCGx3
12/2015 Cysto, redness
01/2016 TURBT, Benign
04/2016 Cysto
05/2016 Finished BCGx3
07&11/2016 Cysto's
1/2017 Finished BCGx3
2/2017 Cysto, redness
3/2017 TURBT, Cysto...

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2 years 8 months ago #50959 by Cynthia
John Hopkins is a top place for blc and a very good choice. It would have be on the short list for sure as one of the top five for blc in the world in my opinion.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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2 years 8 months ago #50958 by blurg703
Thank you so much for the information. We are in Northern Virginia, in the DC metro area. Currently we are being referred to a urological oncologist at GWU but are simultaneously seeking a second opinion at Johns Hopkins. Any thoughts on centers of excellence would be great.

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2 years 8 months ago #50957 by Cynthia
Welcome to our community but I am sorry you need to be here. Bladder cancer can happen at any age there is even a pediatric form but the most common form TCC statistically happens percentage wise more often with age, having said that I personally was DXed at 48. The type your husband has micropapillary bladder cancer is rare and I do not have statistics on average age of DX. As for how long is safe to wait for a second opinion I waited six weeks for my second opinion and was eight weeks out when they did the second TURB. That can very from person to person and we all want to get answers and a treatment path as soon as possible for peace of mind for one thing, but again I have no statistics for your husbands type of blc. They will probably do a re TURB and that will set your timeline for treatment.
That your husband see a specialists at a center of excellence for bladder cancer is very important for more than one reason. The more bladder cancer they see the more likely they are to have dealt with all its variants. Also if a Radical Cystectomy is needed you want someone that has done a high volume of them. For example the first Urologist I saw did three to five a year the one who did mine did that number a week. If you will tell us what state you are in we would be glad to give you suggestions if you like. The most important thing at this moment for you and your husband is finding the right specialist.
I am sure others will chime in but I wanted to let you know we are here for you. I am not sure I have been very useful but ask questions and we will do the best we can to help.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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2 years 8 months ago #50955 by blurg703
Good morning,

After TURBT March 9 and pathology sent to Mayo Clinic for a second opinion, my husband learned last week that he has non-invasive micropapillary bladder cancer. He is 41. Needless to say, this is not the news we wanted. I'm researching and learning some less than wonderful things. But here are my questions I'm hoping to get some help with:

1) What is the general timeline here? Our original urologist is referring us to a highly specialized urological oncologist and we are seeking a second opinion. How long can we expect it to take to get these appointments? If he has a second TURBT or if he needs radical cystectomy, how long will it be until something is scheduled. I know no one controls the timelines, but we cannot understand if this is in the 1-2 month timeline or its more the longer distance.

2) What does it mean to have "highly aggressive" cancer? Again, specifically, what does this mean for our timelines? Is this something that progresses in months not years? Weeks not months? This term confuses me.

3) Is it as rare as I think to have a 41 year old healthy man diagnosed with this form of bladder cancer? We feel very lonely as we keep getting told stories that definitely clearly do not apply to this version of the disease. I keep finding myself saying things like, "well, yes, but it's not clear if that therapy is actually effective for this type of cancer."

Ok, thank you. Sorry for the long message. I'm just getting started on this board and appreciate any time and attention you can give to my questions. I hope to pay it forward some day.

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