Surgery Update / Likely transitional cell Kidney Cancer (?)

Hello All,

I wanted to thank all the awesome responses that I had gotten from individuals on here concerning my father’s surgery, helping with what seems like such a bleak future, and just offering that encouragement. I wanted to update you all….

My father’s surgery ended up taking 5-hours. When I went into his room 2-hours after recovery he was wide awake and completely active, he was even up sitting in a chair, and the doctors say he is doing so well that he likely can already go home tomorrow! They are impressed by his recovery and how good he is managing his pain and everything. I am happy for this, but the surgery itself had some sad surprises.

During the surgery dad’s kidney was leaking fluid, this brought the doctor to believe it wasn’t you’re typical renal cell cancer, in which he thought for sure prior would come back as Clear-Cell Carcinoma which we all know contributes to 90% of the cases.

Well it turns out that my dad is one of the unlucky one’s that only 7% of people fall into. It is believed that he now has transitional cell kidney cancer, which more commonly is a type of cancer of the bladder, but his started in the Kidney so is considered transitional kidney cancer. It turns out, dad, now is a member of both families. The cancer itself ended up being huge, around the size of a football, and it spread down the ureters and into the bladder.

The doctor is under the impression he had got all the tumor in terms of the Kidney (and it was fully remove. They were able to avoid removing a rib). The doctor believes he got all the cancer in the vein, he cut most of it out, and redone it. His biggest worry was the bladder, because they were not repaired for that particular surgery, he wasn’t sure how far down he was able to get. He removed what he seen around the bladder cuff and he believes he got the tumor itself. Multiple lymph nodes were undoubtedly positive. According to the doctor he believes there is a 99% chance of cancer cells still in the body. He believes an 80% chance of reoccurrence within the first 3-9months in which he assumes it’ll pop up in the bladder more (75% of this occurring) or somewhere else.

I am so lost now. I spent the entire last month doing everything I could to know this disease only to find out that I don’t know anything at all. Not only that, but, because it is so rare I am finding that neither does hardly anyone else – it’s hard to talk to those in the bladder cancer family because there’s typically didn’t start in the kidney, it’s the same, yet different. In the Kidney Cancer family only 7% has experienced this.

I feel so heartbroken for my father. They told him this morning, ironically, he seemed to take it OK. Of course, I don’t know if this is because he is still kind of initially shocked, on pain medicines, or what – but I know his fears of traditional chemo are great. He was so hopeful from all of your post and ready to try the treatments you’ve all been offered but now we are being told that our chance of a cure is basically 1% and that we likely will be treated differently, as the Kidney Cancer oral pills and so fourths doesn’t respond well. The problem is, neither does really Chemo, which is already extremely harsh on the Kidney’s (especially one) to do anyhow.

The doctor refused to give us a time-frame. He basically left with. “I am sorry. I hate to tell you this and I am so disappointed, I didn’t expect this, none of us did. We’ll know further more treatment when we see the pathology report but we are almost certain it’s transitional cell , potentially squamous, maybe a small combination of both.”

Now we wait for pathology, we wait for additional scans, we wait for potential treatment. We’ve been hit off and on with this a few times (bouncing from discouraged to full of hope) but I think this is the first time that we’ve been truly slammed into a wall in which now we are at a loss for words and emotion. It seems the prognosis for this type of cancer is even worse than that of metastatic kidney cancer of all the other types…

Has anyone here experienced this, or know anything about it? At the moment we are just enjoying that Dad is in relatively good health as we know it can always be worse! But it really sucks to have went into surgery with such high hopes and come out hit like that - as if it was almost a waste of his strength and general well being at the moment.

I'm so sorry things have taken a turn for the worse (?!) for your father and all of you there supporting him. I have no doubt you will find people on this forum and others that will be able to relate their experiences dealing with this rare cancer. It sucks. Doesn't hurt to take a moment to admit that. Then get up and help your dad figure out what he wants to do - even if at the moment he doesn't want to do anything but another fishing trip. I'm glad the surgery itself went well and will keep you all in my thoughts. Nina

Hobbs and dad:

First of all, let me suggest whatnotto do.  Don't run to the internet and start looking up statistics, 5 year survivability, etc about this latest development.  By definition, that's based on techniques/meds of the past, and doesn't reflect newest developments.  That stuff will just needlessly scare you.

Resolve to fight today's battle today, and tomorrow's battle later.  So much depends on the individual/their physical/emotional resilience/support system/their approach to adversity--all those individual factors that don't show up in statistics.  We're all in this for the long haul.

Not to be a Pollyanna, but ur report sounds like he's doing pretty well, so far.  Be thankful for "pretty well, so far".

Bob

Hang in there.  My mom has the kidney part but so far not the bladder part so I can't give you any experience there. :-{  I know that I have talked to many people who were given a certain amount of time and that was not accurate.  Doctors shouldn't give out time periods since they really don't know. They are coming out with new stuff all the time so keep searching.  I do know someone who had bladder cancer and had an oral medicine that she had to hold in her bladder as long as she could and then releasing it. Unfortunately I don't the name of the meds. Maybe it is something you can research?  I just joined this forum hoping to just release stress by talking and typing.  I hope you find the same.  You are definitely not alone.

Hello All,

Just wanted to reply to those of you who replied and keep my updates going, I write my own personal blog sometimes so my updates, but I like writing on here because I know it provides encouragement and even in times of sorrow it provides valuable information so others can fight this terrible disease.

Dad’s doing well today! Last night he took two laps around the entire cancer ward with me (pretty good for one day out of surgery) and today they already removed the drain and all of that. He has his appetite back and is demolishing hospital food (though he gripes about the no salt, butter, or pepper bland diet he is on). Unfortunately he will not be released today however, because his iron is really low, and they’ve called for a blood transfusion. It seems he’ll be he tomorrow though, which I really hope so, because tomorrow is my birthday and I’d just love to sit down at the dinner table at my parents house and enjoy a dinner with my family. I don’t think I could ask for no greater birthday present than to have my dad home with me so let’s keep our fingers crossed!

Just an update on some of the information, the day I wrote this initial entry, you could say I was quite emotional! We were less than 24/hours out from surgery and it took me a few to get my head back on straight. The doctor came back in and talking was a little bit easier the second time. There are still things I’d like to ask that I forgot, as it never seems like enough time with the doctor, but it was better than day one.

One thing I was wrong about was the cure statistic, it’s not 1%, but there is a 10%-20% chance that it will not return. That’s an 80-90% chance it will. That’s high, but it’s not 0%, and I don’t mind clinging to a little bit of hope! That’s all we have and we’ll do all we can to try to up those chances. We got a nutritionist working on meal plans for him, believe it or not my Dad told me to toss all of his cigarettes (hopefully he sticks to that) and to build Dad’s spirits he is basically going home to a brand new house! Newly painted, new furniture and stands, all his land outside cleaned up, new bed, and everything – thinking this will really boost his hopes and just get him feeling good.

I guess you can say I have my head back on and I am out of shock and right back into fight mode. My dad is as well and he is high hopes. We do have some worries such as the knowledge it’s in the lymph nodes, the upcoming pathology reports, the fluids that leaked in surgery (hoping they didn’t have cancer cells in them) and just in general the high reoccurrence rate. Right now though I think I’ll hold strong onto Robert’s words “Resolve to fight today’s battle, and tomorrow’s battle later.” That’s so fitting and helps a ton with worrying. I put it another way to my father once , “Right now we have a worry, not a problem. Let’s deal with the problem when it comes, that’s if it comes at all.”

Thanks for all your support! Still looking for anyone who has experienced this type of cancer, survivor tips, and so forth, we’d love to hear from you. Some individual responses to you each:

@NinaEH –

It was a rough day without a doubt. It’s been a rough last few days! I’ve made the long trip to the hospital everyday so far but I am super tired today so made sure to call and talk to him on the phone, not sure, I’ll make it there tonight but doing things for him at home (set up a new bed for him, a regular bed but thought it’d be comforting, wedge, and put some handles on it so he could use it to get up and out until he’s fully able to pull himself out of it while recovering). And yeah, it does suck! The chances of getting this cancer we’ve been told were 00.1% and most doctors have not even dealt with it. It’s 5-7% of Kidney Cancers. Still having a hard time finding people who’s had it, especially advanced stages or once spreading has started, which is discouraging. I’ve found a couple who had it but caught it in earlier stages. TCC of the Kidney is different in the since it usually does present symptoms earlier on. Unfortunately for my father, he was continuously misdiagnosed as Kidney Stones, and sent home with pain pills for years on end. As far as fishing goes, I think we without a doubt have some of those left in us, and intend to go camping and get on those as soon as he goes out. Too bad winter is fast approaching here in Ohio.

@Robertma

Hello Bob,

Wish I would have read your suggestion before I already had done that! Of course, I knew that was a bad idea myself, before doing it. In fact that was exactly what I told my dad not to do. I was more or less looking for survivors or other people who had similar stories, but, couldn’t help peak from time to time at what survival rates claimed. Of course I do know that every cancer patient differs greatly and that just because something happens in one case doesn’t necessarily mean it will in another. What my dad has going for him is, the very few people who get this cancer, are typically 70-80 males rather than men who are only 48 so he still has his youth. Our doctor had diagnosed someone the day prior with it who was 91! Dad’s just a baby compared to him.

The doctor gave us a little bit of statistics as well that were not quite as scary as things you’ll find on the internet that are outdated. Still scary, but, it’s cancer – of course it’s scary!

You are right though! Dad is doing great currently and we couldn’t be happier than that. I don’t intend to waste precious moments worrying too much (obviously I will and we all do) but I don’t intend to let it ruin our time that we do have – which none of us are promised tomorrow, with or without cancer in tow. I am thankful and appreciate your reminding me to do so!

@PWalker

Thanks for the encouragement. Does your mom have transitional cell? I think you are correct about the time-spans and I agree I don’t believe that doctors should really give people time spans on their lives either. I don’t believe it does much but discourage people but sometimes people like to know that stuff to get their affairs in order, still, statistics can only tell us what has happened in most cases but we have to remember that every person is so different and so are their individual cancers. There are things like age, treatments, general well being, and just so much that play a role in survival. I have lost everyone in my family who started their journey with cancer to the disease eventually – but all of them put up some great fights. My Grandmother was told 6-months, she lived for five years! She could have lived longer but prior to her last surgery she decided she wanted to cancel because she was ready to go home (we respected that decision) and she died three weeks later. My grandfather wasn’t gave a time but he sparred well with Stage IV Colon Cancer for 22months, it had eventually spread to his lungs, and his light breathing caused pneumonia which eventually he died of. I don’t know what the span given is, but, what I do know is he lived a normal life right up until the week he developed pneumonia and to me that was a win because it didn’t affect his lifestyle at all. My Uncle was diagnosed with Stage IV small cell lung cancer and the lifespan for that is 6-12 weeks and he ended up living 5-months, which doesn’t seem like a lot but he did almost live twice as long as what they said he would. Point being, people defy odds all the time, and right now I am trying to keep that in mind. I joined the forum for much of the same reason, feel free to message me anytime, and share more of your situation.