Found 8cm on my sons kidney an hour ago

I am sorry to hear that your son is having issues.  Did they ever consider that maybe it is a bad kidney infection? Do they have him on antibiotics? Does he have blood in his urine?  Can it be hematoma from the fall?  All these are things to consider.  Why would it be bleeding unless he maybe injured himself.  Has he been having night sweats?  Get a copy of each and every report, blood tests, the scans, the mri.  Get the copies and come back here and post.  Also, run your ideas on this site, they are very knowledgable here at smartpatients.com  I am guessing if his kidney is bleeding then he has an injury that could be related to skiing.. why is that ruled out?  The only way they can truly tell what it is is by removing his kidney.  Be sure that he gets a full body work up with scans.  If it does turn out to be malignant, then that is a big size and he needs a full body ct/petscan combination.  I am thinking not though.  Try to relax so you can make the best decisons. If something doesn't feel right then question it, get second opinions if you have to.  Praying for you guys!! XXOO

blondy1975 said:

Answers... not all, but some.

Answers... not all, but some. The team of drs met with us today. The bottom line is we still don't know what it is. The urologist said that this mass suffered trauma during the skiing accident which caused it to bleed. The blood obscured the CT and MRI images making it impossible to see what the mass is (a cyst or a solid mass). She wrote us a list of the four most probable diagnosis 1. Simple cyst 2. Complex cyst (benign or malignant) 3. Neoplasm (benign or malignant) 4. Renal cell carcinoma (malignant). She said #4 is probable, but least likely, because if this is in fact a cancerous tumor then with it being so large (8cm x 9cm) then cancer would likely be in other places (lymph nodes, renal glands) but it's not. She said #1 is probable,  but less likely due to the possible presence of calcification.  But she said its possible that the trauma to the mass could have made it look as though there was calcification.  Next step... wait. 2-3 agonizingly months... wait. Wait until the blood has dissipated and an MRI can give a clear diagnostic image. My poor son has to walk around for at least two months with this foreign growth that has already turned his life upside down inside of him. Uhhh.... 

blondy1975, you can always seek a second opinion.  In my case, briefly, I was told that my entire right kidney would have to be removed due to a small tumor that was in a difficult location.  I went to a doctor at Sloan Kettering in NYC, and he was able to remove the tumor and preserve 95% of my right kidney.  I was going to wait to get my surgery for 2-3 months, and the doctor at Sloan Kettering said that it would be no problem--I ultimately decided to get the surgery over with.  But your situation is a little more complicated.  A second opinion may help.   Good luck.

icemantoo said:

Second Opinions

Blondy,

Obviously even your doctors are not sure. My thought would be to get a copy of all of yours son's reports and tests and get a second opinion as high up the food chain as possable such as a major university with a top noth Urology department. Tell us where you are and we can give you suggestions.This is not to suggest any doubt in your doctors, but it is your son that matters.

Our thoughts are with you.

 

Icemantoo

I just wanted you to know that my thoughts and prayers are for you and your son.  This has got to be enormously frustrating to not know exactly what is happening.  To watch and wait is a conservative approach and it sounds like you have a team of doctors giving you their best advice.  The only other advice I can give you is to utilize the services of the professionals ie. social workers to help you and to help your son moving forward.  I have young sons too, and your son is going to want to know what is happening to him, when he starts to feel better and gets to go home.  I hope he recovers quickly and is back at home soon.  

blondy1975 said:

Dhs1963, here is how they

Dhs1963, here is how they explained why they have decided this is the best plan of action. If they go in to remove it.. say just the cyst, and it ends up being cancer then there's a possibility of it spreading. The only safe way to it would be to remove the entire kidney, but they don't want to do that until they are sure they have to. We feel confident with their decision. It's so very scary, but keeping faith he is in the best hands. We are considering a second opinion though and will be looking into a teaching hospital as some have recommended.  We are located in Wentzville,  MO. 

Many of us had partial nephrectomies without doctors worrying about spreading the cancer. If that was the case and it was that easy to spread it then everyone would get complete nephrectomies. I'm not sure I understand the reasoning that the only safe way to remove it would be to take the entire kidney. Also, I can't comprehend how they can't differentiate a cyst filled with fluid from a solid tumor. Hopefully the US will answer that but I agree with others; I would get a second opinion before they did anything.

blondy1975 said:

With them not being able to

With them not being able to know whether it is fluid or solid is that the injury made what ever it is bleed and that if there was a mass there that it might be now surrounded by blood making it impossible to to see?? Does that sound right?

Blondy, I'm not doctor so of course they know better. And it's possible that the position of the growth makes a partial nephrectomy nearly impossible. But before allowing anyone to remove your sons kidney definitely get a second opinion. Perhaps your PCP could recommend a good urologic oncologist who specializes in kidney cancer. Or search online for one in your area and one covered by your insurance. I've heard of not being able to do partials because of where the tumor is but I honestly haven't heard of not wanting to do a partial because of fear of spreading. Of course that doesn't mean that's not the case; but I would want a second opinion before doing anything, especially something so drastic as taking a whole kidney. The ultrasound should be able to tell a fluid filled cyst from a solid tumor but I thought a CT scan with contrast could too. But again, I'm no doctor; I'm just so concerned for you and your son.

blondy1975 said:

So I got online and searched

So I got online and searched highest ranking urology dept. in the US and Barnes Jewish/Washinton University came up high on the list. So then I researched top ranking doctors for that hospital and wrote down the names of the urologists and radiologists.  After discussing this info with my husband he reminded me that that hospital,  Barnes Jewish Washington Univ. is a neighboring hospital to where our son is at, St. Louis Children's Hospital,  AND... that someone from that hospital is actually who partook in the conglomerated decision on how to best move forward with this. AND... that their highest ranking radiologists will actually be the one my son will be seeing to have his ultrasounds done with until its time for the MRI.  So now I have a call into his current doctor to find out who from that hospital was the one that partook in the conglomerated decision how to handle this. And whether they were able to see the CT and MRI results for themselves personally or was just a conference call without seeing it for themselves.  Still waiting on that info.

Blondy.  Just want to say that I think you are doing a great job of being on top of things, researching, wanting the best of the best for your son.  Good job.  I think it's a great thought to want to know who was part of the decision making process.  I encourage you to get copies of all the imaging studies.  They will give you a CD.  Also request copies of the written reports that go along with the imaging and written copies of the lab work, etc..  It just might make things go faster for you with the referrals to other doctors.