Forum

× Welcome click the New Topic button to post

T1 High Grade Papillary Urothelial Carcinoma

2 months 3 weeks ago - 2 months 3 weeks ago #58181 by Alan
To answer: 1. Type of tumor being micro papillary is one strike. 2. Age? Always relative. Some 76 year olds are more like 60-65 some are like 85. 3. Male. I don't have a clue what the nurse means there except I am sure the surgery affects males somewhat differently than females.

It really does sound like you have a very good URO and nurse, she certainly was straightforward. Saving the bladder is probably not the best choice with this type of cancer. I do like your diligence for questions. I would still ask IF your Dad is up to it, and IF the surgeon does other types of diversions would he consider doing it (assuming he is experienced meaning 25-35/year) however, as they enter into the procedure sometimes they must do something different. One last observation is most people on this forum will tell you they adapt and accept whatever diversion they end up with.

Either way, your posts and future questions to the doc are helping you and your Dad get through all of this!

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.
The following user(s) said Thank You: swhite

Please Log in or Create an account to join the conversation.

2 months 3 weeks ago #58179 by Orillia
It’s doubtful that this surgeon is missing much. I know nothing of this type of cancer, , a referral to an oncologist for verification on this cancer’s gender bias would be my next step. These types of cancers are frustrating to research , information is sparse, but it’s there if you’re willing to dig deep. Because of their variant nature and the fact that no significant studies are done due to the lack of subjects, money is not spent on designing chemo that can successfully arrest these cancers and the doctors err on the side of caution with your best interests in mind.Native bladders are not all they’re cracked up to be if they cost you your life. A BCG failure with a 3 month opportunity for a highly aggressive variant cancer to manifest itself can very well result in muscle invasion and then without the benefit of a viable chemo , it’s a whole new ball of wax. Tell your Dad that I’ve been a contractor for goin on 50 years. I laid 250 sq. Ft of ceramic floor tile yesterday without the benefit of being able to kneel down. I’m still going strong and intend to still be doing this when I’m 75. Orillia.
The following user(s) said Thank You: swhite

Please Log in or Create an account to join the conversation.

2 months 3 weeks ago #58178 by swhite
That is EXACTLY my question. According to the nurse it is because of three factors 1) his type of cancer 2) his age and 3) the fact that he is male. From what they say, this type of cancer presents itself much differently in males vs females. I am not saying that is accurate information I am just reiterating what the nurse told my parents. If anyone has any information to the contrary I am more than open to hear your thoughts. I would love for them to be able to save his bladder. I go from one extreme to the other One side I think this doctor must know his stuff with all of the accolades and awards he has received to the other side thinking maybe he is missing something. It is all so overwhelming and frustrating.

Please Log in or Create an account to join the conversation.

2 months 3 weeks ago #58177 by Orillia
Thanks Alan, I was about to repost and say exactly what you stated. Often most less cancer centric facilities will not have a top neobladder specialist on staff. You would want a surgeon 50 plus of these per year to be your choice. I was fortunate to be referred to for a second opinion to one of the top ones in Canada . A neobladder is not all Rosie however, some people have issues with the bladder training and the incontinence. With a conduit diversion you get a full night uninterrupted sleep , something you will never have with a neobladder. I have to set my alarm for every 3 hours at night to get up and void. Now this isn’t so bad for old guys since a healthy guy our age would be up at least that much . When I follow the rules , I’m continent 100% of the time , but I will always have to wear a diaper to bed ( just in case.) Orillia.

Please Log in or Create an account to join the conversation.

2 months 3 weeks ago - 2 months 3 weeks ago #58176 by Alan
Orillia has given you some very good poinis. Thanks, I learned from you!

Also, while it sounds like your surgeon is really on top of things, and Fox Chase should be good, the only question I would add to why a definitive illeal conduit? Does this surgeon just do conduits or is he also versed in either of the other two...neo and pouch?

Easy for me to say at this time but, help your Dad focus that he is on his way to being rid of this disease. You have or shortly will have a finalized plan.

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.

Please Log in or Create an account to join the conversation.

2 months 3 weeks ago #58175 by Orillia
Hi Swhite,
There are several reasons why a neobladder is not appropriate for your father, if he has been previously radiated in the area for another condition that can render the bowel tissue unsuitable, if the cancer has spread to the bowel area ( which at T1 is not the case) again the bowel tissue would be unsuitable, certain anatomical conditions within the abdominal cavity can make it difficult or impossible to receive a neobladder ( but those conditions are usually discovered during surgery). Barring these 3 circumstances , the surgeon may feel that due to your father’s age, a shorter less rigorous surgery is more appropriate. If your father has no preexisting medical conditions that would complicate a longer surgery(6 or 7 hrs.) and he’s a tough nut , as you suggest, I would want answers as to why. I was 67 and very fit when I had my surgery. I didn’t find it all that tough. I’ve had bilateral knee replacements since the and I found that tougher. Having said all that, having a pulse is an enviable condition and if an RC is the best way to keep one , then any diversion he can get is a miracle and a blessing. All the best the new normal ain’t so bad . Orillia

Please Log in or Create an account to join the conversation.

  • Not Allowed: to create new topic.
  • Not Allowed: to reply.
  • Not Allowed: to add Files.
  • Not Allowed: to edit your message.
Moderators: Cynthiaeddieksara.anne

Users

Total Online: 0 Users and 1588 Guests 

Statistics

Today Total Opened: 0 Today Total Answered: 2 Latest User: JamesF
Yesterday Total Opened: 1 Yesterday Total Answered: 3
Total Posts: 52933 Total Subjects: 6893 Total Users: 8477
Powered by Kunena Forum