Forum

× Welcome click the New Topic button to post

Jan. 06/Liver Transplant--March 07/Bladder Cancer

12 years 4 months ago #5096 by aligator
Hi Wendy,
Thanks for your response.

After doing some research, I also was a bit aprehensive about BCG treatments in an immunosuppressed individual because of transplant. We haven't gotten that far yet....I tend to jump ahead of stuff, as I did before. I will try to relax a bit.

There is a call into the uro department to see if the procedure can be moved up.

As soon as they tell us anything about a TUR procedure I will make sure to ask about using the flourescent dye....is there a specific name for the type of TUR procedure you are speaking of?

I could not tell which type of cytology test was used by the imformational link that you provided me with. He had to void in two specimen cups already partially filled with a green fluid in them. The second void of the morning and the third.

Thanks for the compliment! I enjoy doing the "grunt work" as he is just so scared to read too much....I want to know everything that I can...I want to know what should come next just in case some one tries something not right in the normal progression of things....make sense? But in all honesty, I am the lucky one to be with him....he has taught me what happiness really is.

We are still enjoying the honeymoon stage of our relationship having been married previously to spouses we couldn't get along with after years of unhappy marriages that had ended, we found each other three years ago. Have been inseparable ever since.

***I read your bio that is posted and truly commend you! My honey was born in NYC in 1956 also....small world isn't it?***

Thanks again,
Ali

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

12 years 4 months ago #5094 by wendy
Hi Ali,

I agree with you that knowledge is power. I also wish there was less delay with the appointments. If I were you I wouldn't worry about BCG and it's possible side effects, good chance a different treatment would be preferred. There's been some news about BCG being ok for immunnocompromised people, but I think a transplant recipient might be pushing the boundaries.

Can you ask if they are doing any clinical trials using the fluorescent dye when they do the TUR? It's been shown to cut back on recurrence and is in phase III trials, maybe the VA is doing it...

Your partner will be getting a TUR before anything else can be planned. Pathology will give the course of how things will go. So for now it's a waiting game.

Cytology is actually quite a good test for high grade TCC, with very few false positives. I think the references to other cytology tests are actually referring to other urine marker tests out there in use today, there are many, with FISH probably the best of them. If you want to read up on this subject we have a page here: http://blcwebcafe.org/urinemarkers.asp Who knows, maybe the VA is using FISH or Immunocyt these days.

Everyone is given cytology for original diagnoses because it's standard and cheap. After the TUR and follow ups begin, many people request and get the newer (and hopefully improved-although the long term results aren't back) tests, along with cytology.

Your partner is lucky to have you out here doing the 'grunt work' for him!
Best,
Wendy

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

12 years 4 months ago #5093 by aligator
Pat,

Thank you for your response. Yes, ditropan is for an overactive bladder, but it does seem to help with the frequency issue. 100 times a day (24 hours) without it vs. 28 times a day (24 hours) while taking two 5 mg tablets a day.

Prostate has been checked report indicates it is smooth. I imagine that a PSA test was preformed in one of the many tests that have been done. I will ask though. No mention from anyone about testicular involvement.

I also am very curious as to where the cells are coming from.

As I stated to Rosemary, I will suggest that the procedure be moved up.

He has no insurance. Or should I say the VA is his insurance. His disability was caused by exposure to the Hepatisis C virus while in the military. Therefore all health care is their responsibility, we could not afford to go with any other options.  He spent eighteen years in the military and would have stayed in longer if he did not become ill. After retirement he continued to work with his condition until 2005 when there was no getting around his deteriorated condition.....he was near death when he was placed on the transplant list.

I am thankful for the care he has received this far. I do know that it is a compromised system.

Thanks for your concern......he has made a call to see if he can get the date of the procedure moved up.

Thanks,
Ali

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

12 years 4 months ago #5091 by aligator
Rosemary,

Yes, positive urine cytology. Our paperwork does not tell which cytology was performed...I didn't know they had different tests.

I will suggest that the appointment get moved up.

Can I tell you that my head is about to explode? I just want to get a little emotional right now.....We were flown to the transplant hospital for a liver "check up" which included a liver biopsy to check on the liver because the viral load numbers were off. That is 450 miles from our home. He had a biopsy in December also...at that time it was said that the liver was a bit fatty. Fast forward to the end of March...had another biopsy done and we are sitting there waiting for results from the hepatologist....he comes in and says that the results from the liver biopsy were not available yet.  The next few minutes are a complete blurr in my mind but the last thing I truly remember is my partner saying "Yes, I want you to be completely honest with me"...and the hepatoligist says that there is cancer.  We are shocked to say the least....Where is the cancer? How can it be cured? Is there a cure? What do we do?

This was not the news we really wanted to hear on March 30th 2007. (The cytology was done on March 15th, results published on March 20th.)

When we got home we got the results of the liver biopsy from the PCP and nothing has changed there....same as the one in December. Which is good...we have improved our eating habits, we go to the pool four to five times a week and we walk when we can......arthritis in both of us prevent us from doing too much walking.

This is all very surprising to us and I am doing as much research as I can about this. I am the type of person that thinks that knowledge is power. I need the power to understand it all. :)


Thanks,
Ali

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

12 years 4 months ago #5089 by Rosemary
Hmmm,

So he had a positive urine cytology?

Do you know exactly which urine cytology was performed? My doctor always warned me of the possibility of a "false positive" result with a particular cytology test.

And his cystoscopy is not until June? I'm with Pat on this. I would advise getting the appointment moved up.

Hopefully the BCG question is a mute one, but my strong inclination is that he will not be able to be subjected to BCG's because of his compromised immune system. BCG is like a wild card, and it is never known what deed will be acted upon the body until the deed is done.

Believe me, I know.

Please keep us posted and updated.

Your friend,
Rosemary

Rosemary
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006

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

12 years 4 months ago #5087 by Patricia
hi Ali.....ditropan is for an overactive bladder. Just wondering if his prostate has been checked...psa test?....or even for testicular involvement?....If CT scan was negative for anything i'm puzzled where these cells were coming from in the urine. And really...June 4th......for just the cystoscopy?...Get them to move it up...its no big deal...they do it in the office...whats the delay? Does his insurance only cover VA physicians and hospitals? That delay is really unacceptable.........lord only knows when he'll schedule the TURB. If you can get an outside opinion from a top uro i would go for it. You've got a lot at stake here with a compromised system. Pat

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 1408 Guests 

Statistics

Today Total Opened: 0 Today Total Answered: 0 Latest User: Carrieb72
Yesterday Total Opened: 0 Yesterday Total Answered: 2
Total Posts: 52609 Total Subjects: 6830 Total Users: 8385
Powered by Kunena Forum