Husband new diagnosed, MSK

5 years 8 months ago #55518 by Jack R
Replied by Jack R on topic Husband new diagnosed, MSK
Molly123,

Waiting IS very hard; everyone here knows the feeling, and eventually we learn that we will ALWAYS have to wait for more information - only then can we relax. Life takes a new turn the day we hear the word "CANCER" applied to us or a loved one.

The consensus here, from personal reports, tends to not find a link between tumor size and stage. If you type 5467 into the search box, you can read a past thread on the subject of large tumors. The pathology results were mixed, again showing no consensus correlation between size and grade. Think positive thoughts.

You and your husband could not do better than MSK. It is a top tier cancer hospital with the intellectual resources to deal with your situation.

Soon you will have a complete diagnosis and a treatment plan. Life begins to settle back down at that point.

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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5 years 8 months ago #55517 by Alan
Replied by Alan on topic Husband new diagnosed, MSK
I wouldn't guess what a larger tumor can bring as every time (on myself included) I am usually wrong. Let's hope for the best. Fill your days in between with your normal routing or treat yourself and keep the mind active and off of your next TURB.

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.

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5 years 8 months ago #55516 by Molly123
Replied by Molly123 on topic Husband new diagnosed, MSK
Thanks Alan, really appreciate your response and support. One additional question / worry while I wait. Since the tumor is large and is high grade does that mean that is more likely to have go into the muscle? Waiting is very hard...

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5 years 8 months ago #55515 by Alan
Replied by Alan on topic Husband new diagnosed, MSK
Welcome Molly123! You are in good hands at MSK and both Dr's are well respected. That is a good move in getting a second opinion/referral also when a case becomes unusual or if there are any questions. And, the question will be on the second TURB to get muscle to see if it is involved. Until that is done you simply will be guessing. I know the waiting is no fun but, it is one day at a time and tumors do not grow in a month that much. If it is confined to the layers before it hits the muscle the normal protocol is BCG or immunotherapy. You can read more about it on the web site. If it has gone into the muscle or beyond cystectomy is the gold standard for treatment. This beatable and treatable so keep posting as you go. Someone will have insight and observations.

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.

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5 years 8 months ago #55514 by Molly123
Husband new diagnosed, MSK was created by Molly123
Hello,

My husband was diagnosed yesterday after a Cystoscopy on 6/25 with Urothelial (transitional carcinoma) high grade. That is all that was in the pathology report. The doctor said the lymph nodes were fine but that seemed to be based on his visual review. As far of as the muscle he said he couldn't get a sample because the position of the tumor was tricky and unusual. He also described it as a monster tumor (not exactly reassuring).

As a next step he recommended that we go to MSK (the doctor we went to was a local NJ urologist) and see Dr Henry Herr or Paul Russo and they would review and likely do an aggressive resection.

Any advice in advance of our meeting at MSK or thoughts on either of these two doctors or other doctors at MSK would be greatly appreciated.

thank you!

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