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Found 8cm on my sons kidney an hour ago

blondy1975
Posts: 27
Joined: Jan 2015

I'm not sure I'm in the right place to be posting this, but my anxiety is through the roof and my husband is at the hospital with our son but i can't be with them because I am home with our other children. My son is 18. He went snow skiing yesterday and had a couple crashes and he woke up this a.m. with a pain in his back. I assumed pulled muscle but the pain worsened and he became nautious. Fearing he injured an organ my husband took him to ER. A cat scan revealed a 8 cm mass on his kidney that looks to be more solid rather than fluid filled. They are doing a MRI tomorrow. I'm reading on the internet that a tumor that large is likely malignant. Sorry if this isn't the right place to post I'm just beside myself. My son hasn't been very healthy the ladt few months. He has been in and out of the dr's office with illnesses... mono, flu, a respiratory infection that lasted so long they thought he had asthma.  

Dutch1's picture
Dutch1
Posts: 152
Joined: Mar 2014

You need to hold on some more.  Your son may be in for some surgery, but it may not be as serious of a situation as you might fear.  Give the doctors a chance to figure out what's going on.  Be persistent about getting the fullest examination and analysis that's possible.  Don't let your doubts go unanswered.  Ask questions.  There are some very good medical people out there who can deal with all sorts of problems.  If there is something there, it's good that it is being found out now rather than 6 or 12 months from now.

Dutch1

icemantoo's picture
icemantoo
Posts: 3273
Joined: Jan 2010

Blondy,

 

You are in the right place. Most often Kidney Cancer is found as a result of a totally unrelated event or a test to rule out something else. In my 5 years that I have been on this board we have only had a couple people as young as your son. But sometimes Cancer breaks its own rukes.

Unfortunately at 8 cm it probably is Cancer and if it had not been found and contiued to grow the prognosis would be anything, but good. However at 8 cm he is in the high average of those on this board. Many are here with initial tumors 10 cm or larger. At 8 cm it is hopeful that a full recovery can be had from the surgery alone.

 

The first thing that is likely to happen is that they will probably want to take out the kidney. This is called a nepherectomy. It is major, but otherwise routine surgery. Mine was 12 and 1/2 tears ago. They will due a biopsy on the tumor after surgery and follow up with scans. There are many people who have only 1 kidney to start with as well as most of us who have lost our kidney to this disease.

 

It is normal to be in shock when you are told that we had Kidney Cancer. Not words I ever expected to here at age 58 let alone 18. Things will get better although the ride is a little bumpy and unpleasant as first.

 

Icemantoo

blondy1975
Posts: 27
Joined: Jan 2015

I know I should give the doctors time, but they won't tell my husband anything.  They just keep saying they will know more tomorrow with the MRI.  And I know that isn't a good sign.  If they didn't suspect something bad they would say, "it doesn't look to be malignant". But they won't tell him anything.  God I just keep thinking... 8cm... that's over 3"!  They diagnosed my son with mono months ago but kept feeling what they suspected was an enlarged spleen, a syptom of mono, but now I'm thinking it was probably this 3" mass he has. I'm so heart broken.  He's been so sick with this and that.  He's lost weight, he always looks so pale. They did blood work for his mono and I remember them saying something was off but my mind is going a million miles a minute that I can't remember what it was they said.  Whatever it was I assumed they assumed it was due to the mono.  This just can't happen right now.  My husband will just lose it.  He just lost his step dad, his mom just had a stroke over it, and his dad has cancer and is in the hospital. 

Ree_Maryland's picture
Ree_Maryland
Posts: 158
Joined: May 2014

I am sorry to hear that your son is in such much pain . do not jump to conclusions ,could be just a cyst, this board is a great source of comfort and  hope . Keeping you and your family in my thougths and prayers. 

foroughsh's picture
foroughsh
Posts: 779
Joined: Oct 2014

Hi, I'm very sorry for the situation made you join Here. I was very frustrated with my own disease during first days and weeks so I can imagine it must be worse when you're talking about a child. Let's wish it's benign which is possible. As far as I know rcc which is the most common type of kidney maligensies happen in adults and usually elderies. In my case I was diagnosed at the age of 36. Jason, another member was 35, and also another lady member member was 36. We are the youngest ones. So it's probebly not rcc. There is another thing which is  called something like whilms tumor,that's for kids. The good point is that whilms tumor respond to chemotraphy and radiography. As far as I know if it's benign or maligent, in both cases your son must undergo nephrectomy to remove the whole kidney because this kidney doesn't work anymore. It's not easy but he will be OK becase he is young and as you described was sporting until the last day prior to diagnosis. So in case of surgery write a new topic and members will tell you what you should do. Try to relax and do your best to find a very good urologist whose experties is what you need , it's very important who is doing the surgery, i think prior the surgery they will know if it's benign or not. For rcc the best option is CT scan with contrast. I wish you come and say it was benign

blondy1975
Posts: 27
Joined: Jan 2015

They did the CT with contrast tonight, but they won't tell my husband anything.  They just keep saying they will know more with the MRI tomorrow.

Srashedb
Posts: 482
Joined: Dec 2013

you are definitely in the right place; a large mass on the kidney might or might not be cancer but thankfully you will get answers soon.

but for the skiing accidents, this mass might well have been gone unnoted but now, answers will be coming 

hang in and come here when you need to; the initial fears will find comfort here and if it is not cancer, we will rejoice with you

i am here because my husband has kidney cancer

Sarah

Allochka's picture
Allochka
Posts: 911
Joined: Nov 2014

Hello, very sorry for your situation. It always extremely scary to go through potential cancer diagnosis, when your loved ones are diagnosed.

But your son is too young for ordinary kidney cancer. As previous pisters said, younger people  here are around 35. My fiance, diagnosed last year, is also 35. So your sons tumor could be Whilms tumor indeed, which can be treated in more ways that simple kidney cancer. Or it could be benign. I recently found out that my friend's mother in law had a huge benign tumor removed together with kidney. So there is always hope.

And even this one is not benign, your situation is far from desperate . Stik to this board, ir is very helpful. 

Please let us know how things are tomorrow. 

Alla

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

Do you remember what was off on your son's blood tests? Anemia? Did they do a urinalysis? Has he had any blood in his urine?

At his age, it's unusual to get normal RCC. I hope you're seeing a urologic oncologist?

I'd try to get information on genetic RCC (for example Wilms tumors and others) before they treat him. They've done a lot of research on this type of tumors and they have some great techniques I believe for treating that. Some of them are even more treatable than normal RCC with chemo therapy. I'm sure you have good doctors and they'll figure it out.

I'm just a little surprised they've ordered an MRI. A CT with contrast is usually the best diagnostic tool for these types of masses in the kidney. Do you know if you're son is seeing a urologic oncologist or just a normal urologist? This is serious, but there should be time to get him to the best specialist you can find in your area. Second opinions are good. Take your time and get another one. I got 3 opinions and was glad I did. Usually, the docs are great about working you in for things like this. I got in very quickly with some really good doctors just by calling and explaining the situation with their nurses or schedulers on the phone.

Good luck to you. Please keep us up to date.

Todd

dhs1963's picture
dhs1963
Posts: 510
Joined: May 2012

It is rare to get the adult RCC that young, and Wilms tumors are rarely observed in peole over 6 years old.  Either way, it might be worth reaching out to NIH because of his age -- there must be a genetic component.  

If it is Wilms tumor, that responds to classic chemo....if it is RCC, he will have to have the tumor removed, which probably means removing the kidney.  The good news is if it is RCC, and has not spread, at stage II (8 cm is stage II), the majority of cases are cured by the surgery.

APny's picture
APny
Posts: 1984
Joined: Mar 2014

I am so sorry you're going through this. I can't even imagine what it's like when your child is facing the possibility of cancer. I think they hesitate to say anything because they want to be sure. Unfortunately the majority of instances do turn out to be cancer, however given his youth, it just may not be that. So they don't want to call it until very sure. There are benign tumors such as oncocytoma but as said above, regardless of whether it's benign or malignant it will have to come out before it starts interfering with kidney function. I'm keeping your family in my thoughts and hoping for the best. 

blondy1975
Posts: 27
Joined: Jan 2015

Did blood work urine counts are all off. My husband can sense tention.someone cominh to b with kids and im going to hospital. 

Jan4you's picture
Jan4you
Posts: 1326
Joined: Oct 2013

Sending you HUGS to you and yours! As a mother, this makes it more difficult than if it were you, correct? Of course this is alarming. Please use your faith to get your through as your son needs both of you to be reassuring. Of course you already know that.

As far as the doctors not telling you (yet) that is because they are still working on a diagnosis. AND they are ruling things OUT as well as in. Let them do their work. I know, I know, waiting and wondering is challenging.

Still, be aware that it will probably take more than one doctor to help your son. Again, they them do their job.

What I suspect is that, as the folks here said, it may not be RCC or renal cancer, but Wilms tumor. Regardless both are treatable and your son will get better and have a wonderful life. Whew..

Again, know that we're here for you. I hope you let us know what you find out. We'll walk this journey along side you.

Here's another hug~I am praying for all of you!

Jan, a mother of a son

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

Not saying anything sounds very sensible to me until they have examined the scans and all the evidence. Drs in the ER are unlikely to be the specialists you really want to talk to anyway.Try to keep calm. It maybe doesnt sound too good right now, but you havent got all the information in and it wont be something you cant deal with

Srashedb
Posts: 482
Joined: Dec 2013

my husband had MRIs, CTs, PETScans and bone scans for staging purposes.

Sarah

2015-01-25

Wings57's picture
Wings57
Posts: 8
Joined: Jan 2015

Very sorry your family is going thru this. Easier said than done but take a deep breath and try to relax. Don't get too far ahead of yourself and wait until you get a diagnoses from the Doc. I was diagnosed with RCC on Jan 15 and will be having my right kidney removed on Feb 4th. It is a bit overwhelming I know. Your family as well as your son are in my prayers.....

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

A lot of good information was shared...I can't add much to that - other than to say I am sorry to hear your sad news. Having your child go through this is really hard to swallow. I am thinking of you and your family and will keep you in my prayers. Please keep us posted!

Hugs

Jojo

blondy1975
Posts: 27
Joined: Jan 2015

Feeling some relief. Doctor says looks to be more of a cyst rather than a solid mass. The cyst has calcifications. MRI soon to see the cyst better. I hope this improves the likelyhood of his diagnosis

icemantoo's picture
icemantoo
Posts: 3273
Joined: Jan 2010

Blondy,

 

Hopefully I will be proven wrong about my initial thought that it is probaly Cancer. Whatever it is they may still need to get rid of it.

 

 

Icemantoo

blondy1975
Posts: 27
Joined: Jan 2015

Just read about the Bosniak scale on cysts. Based on info gained so far I think it puts him at a level 3 with a 50% chance of it being malignant. Fear has settled in again

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

I know the fear you must be feeling but try not to second guess the doctors if you can. They will inform you when they have a certain diagnosis. a 50% chance its malignant is also a 50% chance its not. It just means they dont know yet.

blondy1975
Posts: 27
Joined: Jan 2015

Won't hear anything from the MRI until tomorrow when radiologist comes in. They still keeping him at the hospital another night. 

jason.2835
Posts: 337
Joined: Nov 2014

Just seeing this post, Blondy very sorry to hear you're going through this.  But he's in the right place.  Hopefully they can remove whatever it is and be done with it.  At his age, they will probably want to do genetic testing for Birt-Hogg-Dube or Von-Hippel-Lindau syndromes.  They are genetic defects that have a high rate of kidney cancers.  More common in the younger patients from what I've read.  Whatever the case, the first order of business is to remove the mass, run it through pathology and see what it is.  Hopefully it is benign (he could have even been born with the darn thing).  Just stay positive.  There are a lot of treatment options out there these days.  

Dave418's picture
Dave418
Posts: 95
Joined: Aug 2014

Hoping for the best for your son. Keep us informed of the results of those tests tomorrow. I'm juste 38, but I have 2 kids and can't imagine what I would feel if...

I'm with you and your family, as everyone on this board surely is! 

aamdsi
Posts: 284
Joined: Apr 2014

Glad you at least found this board.  Hope "we" can help.

Keep us informed with the resuts and keep in mind, at least they caught it!

blondy1975
Posts: 27
Joined: Jan 2015

They just informed us 16 hrs after the MRI that the cyst and kidney are bleeding. They are transferring him via ambulance to children's hospital to be monitored to see if bleeding stops. They do not feel it is cancerous.

Jan4you's picture
Jan4you
Posts: 1326
Joined: Oct 2013

Glad you let us know. Many of us have been hanging on with you!

Still, this uncertainty is challenging to say the least, huh?

 

Again, this is a "working" diagnosis.. not certain.

Good he'll be monitored closely. But why Children's hospital if he is 18?

Just curious.. keep us posted, if you can.

 

Hugs, Jan

foroughsh's picture
foroughsh
Posts: 779
Joined: Oct 2014

Wish him luck and health, may the family finds strength and peace of mind to make the best desicion . It's wonderful if it's not cancerous.let us informed pls

blondy1975
Posts: 27
Joined: Jan 2015

He can still be taken care of at Children's even though he is 18. The urologist at this hospital can consult us on this because we came in the ER, not as a referred visit, but our insurance won't cover him after that. It was suggested to take him to Children's because he is still younger than most patience seen with a cyst this large, and a follow up MRI is necessary due to the blood being in the cyst that made it a little difficult to see everything.

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

Great news if its not cancerous. We're all rooting for you!

icemantoo's picture
icemantoo
Posts: 3273
Joined: Jan 2010

Blony,

 

I may have been a little thrown off when you used the word tumor in your initial post. If it is in fact a cyst he may get a free pass on this Cancer stuff which has no part in the life of an 18 year old. Hopefully the Kidney issues will resolve themselves, but if they do have to remove the Kidney because of the cyst or bleeding issues we can still offer hope and comfort on this board as each of us has faced the loss of a Kidney and knows what the surgery and recovery are like. Hopefully you do not need us.

 

Icemantoo

blondy1975
Posts: 27
Joined: Jan 2015

Another sleepless night as fear takes over again. They transferred him to Children's Hospital.  They reviewed his scans and are not for sure what it is... a cyst or a mass. He made it sound like it's a cyst but has a mass of some sort inside of it. He said a team of specialist are having a conference tomorrow to discuss it and see "what will be the plan of attack". This can't be good. I am in utter disbelief.  The doctor at the first hospital SPECIFICALLY said it looks like a cyst and didn't see anything of concern.  But that because of bleed that it was hard to see everything and would need a follow-up scan in a couple weeks when the blood clears out. Please say a prayer

Allochka's picture
Allochka
Posts: 911
Joined: Nov 2014

Even if it is not just a cyst - your son is obviously in good hands. Most probably there will be surgery, and. Your son will be tumor Free. Waiting is very hard, but even this hard time will pass, and things will get better!

hugs to you...

Alla

sblairc's picture
sblairc
Posts: 586
Joined: Feb 2014

I think the positive here is that they could be ruling out cancer. Many, if not most of us here heard "It's cancer" right away. No chance of anything else, which is what happened to me. The mass looking different, and the dilligence they are taking could in fact bring postive results. I think it's acutally a good thing they are forming a group to come up with a concensus of how to treat the issue, especially since preserving kidney function is important. Hang on to that thought, I will be hoping for you that this mass is just a cyst, and the impact of the skiing injury caused it to rupture. 

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

The not knowing and waiting must be so difficult for you! I hope you get the best answers soon so that you can move on to the best possible care. How is your son handling all of this?

Please keep us posted.

Hugs

Jojo

blondy1975
Posts: 27
Joined: Jan 2015

Heading back to hospital soon. Jojo, we haven't led on to our son what the negative possibility could be. Unfortunately he is in terrific pain just to move or breath deep and his temp keeps spiking

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

Hopefully they can give him something for the pain, and you get some good answers soon. Youre in our thoughts blondy

sblairc's picture
sblairc
Posts: 586
Joined: Feb 2014

I post here on behalf of my husband. Seeing someone you love in so much pain is so incredibly heartbreaking, I understand. Whatever the issue, cyst or something else (it could be cyst with calcifications, as you have mentioned) please know we are here to support you. 

APny's picture
APny
Posts: 1984
Joined: Mar 2014

You must be so stressed. Even knowing he's in good hands it's still so hard to see your child in pain and be uncertain. Hang in there and we're all thinking of you. Hoping outcome is just a cyst and it'll all be resolved quickly.

cran1's picture
cran1
Posts: 139
Joined: Mar 2013

You and your son are in my thoughts and prayers.

angec's picture
angec
Posts: 924
Joined: Mar 2012

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
Posts: 27
Joined: Jan 2015

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.... 

Positive_Mental_Attitude's picture
Positive_Mental...
Posts: 454
Joined: Jul 2014

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's picture
icemantoo
Posts: 3273
Joined: Jan 2010

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

a_oaklee
Posts: 523
Joined: Nov 2013

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
Posts: 27
Joined: Jan 2015

I really appreciate everyone's thoughts and prayers and for just being there to bounce my thoughts and fears off of. I should also state that there will be highly renowned specialist performing ultrasounds on him throughout our wait for this final MRI. They will be keeping an eye on his kidney and the rate of how fast the blood is dissipation. 

dhs1963's picture
dhs1963
Posts: 510
Joined: May 2012

Some of the information is not correct:  8 cm tumors probably have not spread...and with the bleading they may have mis-measured it.

I tend to think it is likely trauma related.  Cancer does not hurt in early stages...not like this.  I am not sure where you are located, but I would try to find a urologist from a top reseach school...they are more likely to think outside the box.  You do not need to worry about an oncologist until you have a cancer diagnosis, and hopefully, you will not need one.

The problem is, with blood obscuing the kidney, the only way to see it is surgery...but kidney surgery is a big deal:  the kidney is deep in the body and there is a lot of tissue to go through to get to it.  Most of us have had either radical or partial nephrectomies....they are not fun.  

 

blondy1975
Posts: 27
Joined: Jan 2015

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. 

APny's picture
APny
Posts: 1984
Joined: Mar 2014

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
Posts: 27
Joined: Jan 2015

APny... you don't think it's because they just don't know what it is that keeps them from doing anything now? Aren't there some cancers thar could spread easier/faster if cut into and not thoroughly removed? Does anyone else know about how blood shows up on these tests? If it does make it difficult to see whether there is tissue inside mass or other concerning factors? ??????

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