Forum

× Welcome click the New Topic button to post

A Long Row to Hoe

11 years 7 months ago #5276 by Mike
Artsygal sorry I did not get back to you sooner on this. When I had my Tur done 1/31 is when they more of the tumor and part of it extending into my left ureter I think around 3cm. They were going to biopsy it and then decided to leave alone since I will be having the surgery cause the tumor is invassive. As I mentioned the stent did the job and I now have full function of my left kidney. I am a candidate for a neobladder so when they do the surgery Dr. Malkovicz said they would cut that part of ureter out and then use the rest of the ureter to tie into the neobladder. I'm now done my chemo and they don't see the tumor on the bladder but nonetheless I will be having it removed to be on the safe side and the ureter is still the same it did not grow any larger there thank God. All of these reasons is why they decided to do the pro-op chemo and now I am really glad it this way. Once you have the tumor on the bladder it would be a big risk leaving the bladder in even though it appears the tumor is gone is how it was put to me and I totally agree. So since the cancer did not spread and the chemo worked I am not taking any chances of it spreading anywhere if I opted to leave bladder in and just have them do radiation to it. I was asked by Dr.Malkovicz what I wanted and I told him to remove my bladder and he was just waiting for my answer. When I said take it out he told me Joe that is the right call since I'm only 52 survival wise. He told me say I were an 80 year old man maybe you might do the radiation deal and just take your chances but at my age that would be foolish. He's the expert and I feel and know I am in good hands with him. Thats all I got for right now I wish you and your hubby the best. Anymore questions always feel free to ask me I love helping out other people and that is what is great about this board others here at the cafe are the same way also a great bunch of folks. Best Wishes, Joe

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

11 years 7 months ago #5237 by artsygal
My hubby had a cystoscope on the 20th and the Doctor reported that he thought the tumor looked superficial. ;D He couldn't get a look at the ureter. We were encouraged by this news. He is set up for a TURBT on the 16th of May. They will remove the growth and send samples to the pathologist. We will have to wait until the path report to find out if it is indeed superifical and what the grade and stage will be. He still expressed some concern about the ureter. We will have a better idea after they are able to look at it on the 16th.

For now we are somewhat encouraged and optimistic. I will let you know what other information we find out. Thank you for your comments and your concerns.


"What lies behind us or what lies before us are tiny matters, compared to what lies within us." Ralph Waldo Emerson

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

11 years 7 months ago #4946 by artsygal
Since we don't have a firm diagnosis yet and only a cat scan to go by, I think he was giving us a best case, worse case scenario. I don't think he wanted to hit us with everything at one time. When we get a diagnosis we will plan a path of treatment. If we don't like what he says, we will get a second opinion.

Joe, if you don’t mind me asking, how long ago did you find out and when did you have the procedure? Did they just remove the growth? It is good to know that there are other options and that there are people out there doing well after going through something like this.

Thank you for your replies Joe and Wendy, it is good to hear from you.

Ruth


"What lies behind us or what lies before us are tiny matters, compared to what lies within us." Ralph Waldo Emerson

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

11 years 7 months ago #4933 by wendy
Hi,

Joe is absolutely right to suggest a second opinion on things before committing to a path, so that is something you could consider.

You really don't have anyone you can honestly talk to? That's not good. Keep your journal and take those notes. It will help in more ways than one.

Best,
Wendy

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

11 years 7 months ago #4917 by Mike
Artsygal I am the man you want to talk to on this topic cause I been there.. My tumor was growing at the top of bladder and also into the ureter and was on the large size and muscle invassive. What they did when I had my TUR done they put a Cath in to try and open up the left ureter and get my left kidney functioning sice this was where the blockage was. I did have one set back later that night one of the residents came in and said I had to go back in in OR in the morning because the Cath had slipped and fell out-unfortunate but things happen. This time they used what they called a J-Stent and this did the job. My kidney is fine and dandy and working.

Now who is your Dr here and why is he talking of taking kidney out at this point is there any medical findings that the kidney is not working ????? Seems to me this tumor is very similar to mine but smaller so it is growing from the bladder and extending into the ureter from the bladder not the other way around dear. So yes you need to get the ureter opened so the kidney is working or then you will have a problem. Did this Dr mention this to you putting in a stent to open ureter.

Where is your husband getting treated at and am I missing something here. I'm no Dr but as you can see from my experience with this problem it was lower tract. And upper and lower tract never entered the picture first I have heard of this. I don't think they mentioned this cause it was quite obvious it was lower tract so this never came up.

At this point in all honesty Artsygal I be looking a second opinion here cause I personally don't like some of the things that this Dr has said to you, that's just my opinion. Best Of Luck, Joe

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

11 years 7 months ago #4916 by artsygal
Thank you for your reply and encouragement Wendy. The odd thing is that the growth is in his lower tract and not his upper. It is one mass growing 2.5 cm on the bladder and extending 2.5 cm into his ureter. Our doctor said that they would have to determine if it was coming from the kidney to the bladder or from the bladder to the kidney. This fact would determine whether or not the kidney would have to be removed.

There is even less information about lower tract than upper. I will still continue to look. I am not allowing the information to upset me. I am letting it educate me to all the possibilities. When he delivers the report I want to know exactly what he is talking about. I have made a notebook and have printed the helpful pages of terms and abbreviations. I have also started a journal to express my feelings. Oddly, the caregiver often has no one to talk to. I can't express my concerns to our children or our family. I don't want to frighten them. I am glad that I can talk with all of you here. I will join one of the special groups after the path report.

Again, thank you for your support.

Ruth




"What lies behind us or what lies before us are tiny matters, compared to what lies within us." Ralph Waldo Emerson

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 attachements.
  • Not Allowed: to edit your message.
Moderators: Cynthiaeddiek

Users

Total Online: 0 Users and 436 Guests 

Statistics

Total Messages: 50829 Total Sections: 1 Today Open: 0 Today Total Answer: 0
Total Subjects: 6513 Total Categories: 11 Yesterday Open: 3 Yesterday Total Answer: 9
Total Users: 7771 Latest User: Rev
Powered by Kunena Forum