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Visit with Urologist today, about kidneys (UPDATED 4/6)

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Posted 3/20/2014 11:04 PM (GMT 0)
Spent about 35 minutes with my Urologist.  Hadn't seen him in a long time, 1 1/2 years?

He said the other doctors were right to be concerned about the MRI scan that showed my kidneys.

He is ordering the next step, as I expected.  A full-renal 3D CAT scan of both kidneys.  Said its the only way he can tell if he is looking cysts (beniegn) or tumors, or a mixture of both.  Did admit that there were a lot of them showing up on both sides.  He said he dug up a CAT scan from 3 years ago or so, that he had ordered, and none of these "objects" were in the prior scan, which made him more suspicious.

He said if the new scan shows any objects being solid, would indicate that they were tumors.  If so, he would ordered a higher level kidney scan, to focus on the solid objects (if any), to determine if they were cancerous or even pre-cancerous.  Said I was definitely high risk for secondary cancers from the radiation.  And that sometimes, a new cancer can form in as little as 2-3 years on an organ.  He doubts if it were cancer, that it would be PC spread.  Seemed pretty sure about that.

Also advised that my lungs be re-checked.  At the time of my RP, a nodule was found, investigated, and dismissed.  But he said he wants the assurance that nothing new has formed, or if the previous one has grown.

Sad if I needed kidney removal, would not be able to do it from the stomach side, too much scar tissue and radiation damaged material to deal with, plus the complications of my existing Urostomy.  Would have to do any removal from the back.  Said that type of surgery is much harder to recover from, and would be much more painful.

But one step at the time.  He said they really don't do kidney biopsies anymore, too much risk of spreading cancer if cancer was found.

He looked at the bone scans, and agreed with my other 2 doctors, that spine surgery or spine injections would be a bad idea, and doubted it would reduce any of my chronic pain, if anything, he said, probably make things worse.  Said to keep an eye on it in the future, and delay any thought of back surgery.

So, now I wait once again, for the kidney scan to be set up.  He wants to get it done next week if possible.

David

Post Edited (Purgatory) : 4/6/2014 2:53:51 PM (GMT-6)

Posted 3/21/2014 12:18 AM (GMT 0)
Well, David, you called that one. Good luck with the scan.

Can it possibly be scar tissue (not sure from what)?

Mel

Posted 3/21/2014 2:21 AM (GMT 0)
Hi David It sounds like the appointment went as well as it could have. I'll be waiting to hear the date of the scan. Take care. I hope you're having a normal pain evening.

love and hugs
Loretta
Posted 3/21/2014 2:40 AM (GMT 0)
My personal research on the subject almost matched up everything the doctor said, he was impressed with my insight. He also checked my stoma while I was there, still pleased with his work nearly 4 years later. No, no reason for scar material in my kidneys.

Worse part, still don't know what is really going on, and here I am on another weekend with a sword hanging over my head, But I am use to that situation. Not worried, concerned. Really need this to turn out to be a non-issue, hopefully.

Kind of got creeped out when he talked about the limited surgical options if it were to be kidney cancer. Rather not think about that part.
------------------------

Thanks Loretta. Went just about as I had predicted. Knew he couldn't make any decision based on a single MRI that just happened to show my kidneys clearly. Today was the only "normal" pain day I have had all week. The past 5 days or so have been horrific.

Suppose to be leaving for Charleston in the morning to visit our daughter, hoping I will feel strong enough and with only "normal" pain when I wake up. If I can't make it, wife is going on her own. I really want to go, but on the best of days, the 225 mile one way trip is almost more than my back and joints can handle. Just have to see how I feel in the morning, its so hit and miss with me on what kind of day I will have. Though, I can usually tell within 10-15 minutes of waking up whether it will be a "bad" pain day or not.

Hope you have been doing better. I miss a lot of my friends from HW CP, but still not comfortable posting there anymore. I am always open to e-mails or conversations here at HW PC.

David
Posted 3/21/2014 3:14 AM (GMT 0)
As a side note, my urologist reviewed my current PC situation, and still backs my oncologists position of continuing to "watch" it closely, but still feels that I shouldn't be doing any advanced treatments at this time. We both realize, that my window is slowly closing over time, but its serving the purpose of buying me some quality of life, even though its greatly diminishing over time. He said he's still inclined for me to do chemo, when and if its time to do something, as opposed to HT.


I like getting the different perspectives from the variety of doctors I see.

David
Posted 3/21/2014 12:09 PM (GMT 0)
David, sounds like you had an informative visit with the uro yesterday but I am sorry that the subject of surgery entered into your discussion so early in the process. Between the MRI and the CT scan, your uro should then have a very good idea of what is going on. Did he mention a sonogram by any chance or blood tests to check for anemia as well as kidney function?

Will keep you in our thoughts and prayers.
Posted 3/21/2014 12:24 PM (GMT 0)
purgatory

 sorry if I'm missing something you may have posted in a previous post but have they ruled out polycystic kidney disease? I have it but mine have stayed small and manageable, my nephrologist tells me that they should never give me trouble but if the body is stressed with other issues eg heart attack they could come out of dormancy and grow.  google it if you don't know what it is.

good-luck with what ever it is,

carl

 

Posted 3/21/2014 1:41 PM (GMT 0)
sephie, no blood work ordered at this time, but sure that may be part of the process.

river, he mentioned polycystic kidney disease as a possibility.

Until he gets the special CT scan in his hands, there is no way he can totally see what we are dealing with. I didn't expect any real answer on this visit, so the sword continues to hang over my head.

David
Posted 3/21/2014 2:51 PM (GMT 0)
David,

Just wondering - how is he so convinced the kidney issue is not related to the PC? Through other blood work? Can they do a biopsy if necessary?

I guess that will be an important piece of the puzzle as to treatment, if necessary. Here's hoping it is a non issue for you.

Hang in there,
Jerry
Posted 3/24/2014 4:30 AM (GMT 0)
thanks, jerry. said they rarely do kidney biopsies, as the biopsy can spread cancer if cancer is present. there are 2 levels of advanced scans to detect kidney cancer. I am having the first one this coming week, if anything looks solid in that one, will move on to more advanced test..
-------------

Sunday Night

Found out late Friday, the first kidney related 3D CT will be done this Tuesday at 0945 at St. Francis in Greenville. Doctor will call with results. If no solid tumors found, will have all clear. If some or any are found, go on to round two with an even more advanced kidney scan, that will determine if any solids found are cancerous or not.
---

Just got back from Charleston trip. May be my last long car ride this year. Took 4 hours to get there, vs the normal 3 hours or so, took over 4 getting back. Way beyond my limit of endurance.

No matter how hard I plan these trips, ends up being endless walking and standing. Parking difficult to find in Charleston, sidewalks and roads way too uneven and rough for rolling walker.

Came home totally wiped out, napped, got up, felt ill, laid back down. Got up again, entire lower half of body from waist down in severe burning pain, no relief even with max. doses of pain meds. Miserable, aching, sore.

Soon as we ate (ate out just prior to arriving home), got so cramped up, nearly collapsed, felt just like some one took a large hunting knife and was jabbing it into either side of my abdomen, just not worth eating anymore to me, not worth the cramp and pains. Yet doctors seem unconcerned about that part or all the weight loss.

I weigh less now than at any time in over 30 years, and still falling off. Averaging almost a pound a day on a regular basis.

Really frustrated with the whole medical process, real close to pulling the plug and just living with how I am, not convinced there are any real answers or solutions for me. Guess its my destiny to keep going downhill, being in intense pain, and suffering. Done about all I can do to help myself.

Sorry, turning into an unplanned rant, sure its the pain and exhaustion talking, so don't mind me.

I know how to end all this suffering, but fortunately or unfortunately, I have a moral conscious. Perhaps some do pass through purgatory in this lifetime. I don't know what I did that was so terrible. Far from perfect, but never really harmed a fly in my life, and I try to be fair to everybody in my path.

Signing out for now, cant' take anymore of this day, wish I would just pass out or could sleep for the next 12 hours, but as usual, serious sleep is just as elusive for me. When I do sleep, its usually 4-5 hours of broken light sleep, often waking up every 20-45 minutes from severe nightmares, then drifting back off again. Then its daytime again, and another 18-20 hours of hurt begin all over again. Its an endless circle. The every day is a bonus thing really doesn't work for everyone, nice thought, nice idea, but just isn't in the cards for every one, obviously.

David
Posted 3/24/2014 2:34 PM (GMT 0)
scan postponed till Wednesday, forgot about important va appointment at same time. easier to re-schedule the scan, than the va. have to fast before scan, didn't know that before

got some halfway decent sleep, but still feel physically shot from weekend trip.

d.
Posted 3/24/2014 2:47 PM (GMT 0)
David,
Sad to hear you had a bad day. I hope today is better for you.

You're still in my thoughts and prayers,
Andrew
Posted 3/24/2014 2:56 PM (GMT 0)
thanks, Andrew. not going to lie, starting to really lose my will to keep fighting all these issues, seems like I never get anywhere, never get any answers, never get any solutions.

david
Posted 3/24/2014 3:30 PM (GMT 0)
There is no advice I can give, even comforting words are hard to come by, but I and others pray for you that you may have some peace among all this pain. I have tasted a little pain myself; I just hate to see others go through it.
Posted 3/24/2014 10:04 PM (GMT 0)
thanks.

not much relief today. everything I did today, or tried to do, took all the effort I could muster. Got too much going on this week, and no real way to cancel anything or postpone. just have to keep pushing and pushing.

that one trip, to see my daughter, has triggered this new round of pain and agony. I knew this would happen, but felt I needed to go, hadn't seen her since Christmas, but boy ,what a price to pay.

really don't think I will be able to handle another car trip that long again. worried about our October cruise, last year's was hard enough on me, at this rate, will be confined mostly to our suite, that wouldn't be much fun or worth all the money. youngest son getting married in CA late October, as of now, no way I could endure an entire day of flights, lay overs, etc, and no way to lay down and rest in between, he's aware that I may not be able to make it, doesn't make any of us happy to consider.

david
Posted 3/24/2014 11:25 PM (GMT 0)
David,

I'm out here in the online world thinking of you and wishing you less pain...

Lisa
Posted 3/24/2014 11:56 PM (GMT 0)

David,

You have come far so don't give up. Easy for me to say, but I know your faith. Let's see what these scans show.  

Robert

Posted 3/25/2014 12:58 AM (GMT 0)
David,

I still check in to see how you are doing, even though I rarely post. Sorry to see you are wearing down. With all you have been through it is understandable. Pulling for you, and praying for a break of some sort.

Explorer
Posted 3/25/2014 1:56 AM (GMT 0)
David-- Take care and hang in there!
Posted 3/25/2014 2:09 AM (GMT 0)
David,

I'm so sorry to hear of your hurting and you having such a hard time. Just so you know, you're in my thoughts and prayers. You will make it because you're a fighter.

Dave
Posted 3/25/2014 3:20 AM (GMT 0)
thank you one and all. appreciate it.

been a rough evening. long day tomorrow. hope I can get it all done.

be so easy to give up, but fighting hard the temptation and impulse, trying to hang on, all I can do
Posted 3/25/2014 3:24 AM (GMT 0)
Keep fighting and pushing David. It's difficult to read what you're going through. I hope something is found from all this ordeal you've been having to go through.
Posted 3/25/2014 3:43 AM (GMT 0)
Everything of the best!

You remain in my prayers!

..
Posted 3/25/2014 4:00 AM (GMT 0)
David
I am sorry you have had a rough two days. It just seems the downward spiral continues. We are all sadden by your continued decline. As a person of faith, I know you realize this battle here will ultimately be won and you will have victory over the pain, have a new body and be in a setting prepared for you from the foundations of this earth. There won't be any flies there- not even the ones that you have let live-LOL.
The flies appreciate the kindness you have shown them by not hurting them! Hope your VA visit is good and then the scan is negative. Be strong and courageous- I continue to pray for you and your family.
David in Texas
Posted 3/25/2014 1:04 PM (GMT 0)
thanks, again. looking forward to that perfect body one day, and when all tears will be wiped away, but for now, I have to live in this body, and bear that until that day comes.

about to leave for the VA, to meet the dental team for the first time. Mixed feelings, but with a mouth full of crumbling teeth, I know it needs to be done. Hoping they will agree it will be best to pull what's left and recommend full dentures. not that I really want that, but I don't think I have a good tooth left in my head.

Wednesday morning at 0930, will have the 2nd kidney scan done, and will be hoping for a no "solids" found message. that will end the current sword hanging over my head. if not, it will be on for more sophisticated kidney testing.

david
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