-
Jan. 06/Liver Transplant–March 07/Bladder Cancer
(Please excuse me if I just posted something……this message board is very new to me.)My partner has just been given a diagnosis of bladder cancer. He will be having pre-op stuff on May
29th and a cystoscopy on June 4th. We met with the urologist last week and have been told that there
was no tumor or growth seen in the CT scan. He had an IVP done, nothing conclusive there.
Microscopic blood in urine. Frequent urination were his symptoms starting about Nov. 2006.
What will happen now? I have been reading and reading, probably scaring myself to pieces, but I
want to know what is going to happen. Will they do a TUR at that time? Or will they schedule that for
another time? Will they want to do that? (I didn’t have all these questions before we saw him…these
have all come up since.) Of course the more I read the more I learn…..I know a lot of
these questions will be answered by his transplant coordinator this coming week. I just want to know
if there is anyone out there going thorough the same or has done the same.
He had a liver transplant in January 2006. He is immunosupressed now and will be to guard against
rejection of the liver. Won’t that cause a problem?
I can not find any instances of transplant receipient and bladder cancer treatment.
He gets all of his treatment through the VA Health Care System. He will also get all of his treatment
for the bladder cancer from the VA also. I can not say enough about how wonderful VAHCS is!!!!
He has had the very best treatment. My partner suffered with End Stage Liver Disease caused by
Hepatitis C…..that of course is not for this forum but I just wanted to give the VA a little plug. :)
Thank you all for reading this. Thanks in advance for any response.
Ali
-
15 Replies
-
Hello all,
Just got back from the doctors with the news of carcinoma in situ of the bladder, the results of the May 23 cystoscopy and TURB procedure. The doctor reccomends that he get the BCG treatment BUT….because of the transplant it may not be possible. Might be able to do the Mitomycin treatment.It will be up to the transplant team what treatment will be done.
Thanks for all of the information that I did receive from all of you.
I still continue to read and I do learn a lot from my readings here at the cafe.
Ali
-
another roadblock…is he on warfarin or Plavix? Just wondering. Plavix stays in the system 7 days……the coumadin(warfarin) about 3 ..much shorter acting. So am wondering about the l0 day window………Just thinking out loud……..Pat
-
Just a quick up date….
Thanks Pat, Wendy and Rosemary! After speaking with you we called the person in charge of scheduling the cystoscopies and had the procedure moved up two full weeks….to May 23. There was a possibility that it could have been done next week, but because he has to take a blood thinner he can not have it done then. (He has to be blood thinner free for at least ten days.) So it is scheduled for the next possible date.
The scheduler completly understood our concern for the procedure to be completed sooner than later…and I want to thank you all again for guidance.
My best,
Ali -
Than my Internist lied to me about the fatty part…….who do you trust? Pat
-
Pat,
Thanks for the info….I will check the NCI out.
No, the hepatologist did not diagnose cancer…he just told us what the findings were in the records that he had available from the cytology test from the 16 of March. March 16 was the IVP also. The Monday after we returned from the transplant hospital, his urologist called to apologize to us that he was not the one to say the possibility of cancer to us…he wanted to tell us face to face the findings of the cytology test and the results of the IVP.
Fatty Liver is not something that everyone gets. Fatty liver disease – is becoming increasingly common. Left untreated, it can lead to inflammation and scarring. In a liver transplant patient a diagnosis of a fatty liver has to be monitored very closely as it could lead to a need for another transplant. Having Hepatitis C is another concern. That is why we HAD to modify everything that we possibly can to address the fatty liver issue.
Yes, getting old is not what I always thought it would be.
Thanks so much.
Ali
-
Ali..if you go to the National Cancer Institute page they have a link to clinical trials and the one Wendy is talking about is there and the criteria for participating.
Am i understanding that the hepatologist diagnosed the cancer?
We all get fat around our liver at some point….they found some on my last CT…asked why….age!!..Oh goody another perk of getting old!
Pat -
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 -
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 -
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 -
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 -
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 2006hi 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
Rosemary, Pat,
Thank you so much for the response. Ok, so I have skipped a bit. Back in late October early November he started noticing that he had to urinate often. More then usual and it was becoming bothersome to him. He let his doctor know what was going on who ordered a cytology test which shows hematuria.This is what it says on the lab result for the cytology:
“GENERAL CATEGORIZATION: Malignant neoplasm; Transitional cell carcinoma.
DESCRIPTIVE DIAGNOSIS: Highly cellular specimen consisting of malignant cells with features consistant with high grade transititional cell carcinoma.
RECOMMENDATION: Follow up as clinically indicated”
Uro also gave him a prescription for ditropan. As I stated, he goes for a cystoscopy on June 4th. So, we are at the very beggining of everything…I think.
When will they do a TUR if they need to do that?
My biggest concern is him having to go through the BCG treatment (if it is indicated) after the cystoscopy because his immune system is supressed because of the transplant. He did an IVP and a CT scan also. I forget what was said about those tests…nothing was seen, I think.
As far as me being in love with the VA ….not entirely true…my partner has managed to have some very good doctors as so many who work for the VA are. He has also had a nasty, uncaring, overworked doctor that he never wants to see again (in the VA system.) All that stuff going on in DC is very unfortunate, my partner was there in ’92 doing clinical testing for the “now” widely accepted Hep C treatment and he says that building #18 is very much the same as it was when he was in it back then. I do not want to get political, but there are so many veterans that deserve so much more then they will ever get from our government who has/had employed them.
Rosemary, I am so sorry to hear of your sister, I will pray for her.
Thank you,
AliAli…i’m with Rosy…how can they make a diagnosis of bladder cancer if they saw nothing and hasn’t had a cystoscope yet. Everyone has microscopic blood in the urine. I would seriously consider another opinion even tho you’re in love with the VA hospitals…they haven’t gotten such good press lately. Pat
Ali,
Hi. I’m just a little confused about how the BC diagnosis was determined. You say a CT scan showed no tumor growth. Has he had a cystoscopy? I’m sorry, I’m just a little confused how it was determined without a cystoscopy or a biopsy. Can you enlighten me a little and then maybe we can help you to sort through this.
You are lucky that he was able to get his liver transplant. My sis has Hepatitis C but is not a candidate for transplant because she cannot tolerate the anti-rejection drugs and she is prone to seizures. But, like you say, that’s another forum on another day.
Your friend,
Rosemary
Rosemary
Age – 55
T1 G3 – Tumor free 2 yrs 3 months
Dx January 2006Sign In to reply.
