Has anyone had a mass around the Renal artery/vein area?

GSRon said:

Hi Jan..  OK, I will try to

Hi Jan..  OK, I will try to help you.. but if you would please give more details.. including where you are at and what Hospital, etc.. this all helps.

First, I am very concerned that your details may not be accurate..  It would be rare for such a small tumor to go anywhere.. but then I am also concerned that your first scan may not be good enough.  And if your surgeon has not ordered more scans with contrast then perhaps you have the wrong surgeon as well. I do not mean to alarm you, but IF you do have Renal Vein invasion then this is a bit more difficult.  Was that first scan with contrast..?  (sometimes they can not use contrast if your Kidney function is not good enough, but you need to know that as well).

I digress a bit.. keep in mind that Kidney Cancer is about 8% of all Cancers.. IF  you have Renal Vein Invasion, then the rarity alone mandates careful selection of a surgeon.   If you do have Renal Vein invasion the number one question to ask your surgeon...  "How many surgeries have you done with Renal Vein invasion this year..??"  If the answer is none, then move on to someone with more experience.  It does not matter if you like this Dr or not..

So, here is a bit of my story.. my tumor was about three times your's.  Oh yes, the true size will not be accurate until after surgery...  OK, my initial scan was an MRI looking for Kidney Stones.  My Urologist immediately got me to the right surgeon.. one of the best in the country that specializes in Kidney surgery.  I got lucky..!!  So he knew that the first scan left more questions than answers so he ordered up two new scans, a CT and an MRI both with contrast (different types of dye used in each one).  Plus more blood tests, etc.  Once he verified Renal Vein invasion he got a second surgeon involved.  I actually had three surgeon teams work on me... and the results were the proof I did the rigtht thing...

OK, so in case I did not make myself clear.. I suspect your initial scan is not good enough to give the best details.  And as you are still a Newbie, I hope I have given you enough info.. I am sure others may chime in to either correct me, or further help you..

Feel free to ask questions here... there are NO silly questions.. we all wish to be helpful...

Ron

foxhd said:

risks

The biggest risk, I believe it that it changes your staging as the tumor is not contained in just the kidney. I'll be corrected if I am wrong. Mine invaded the renal vein. I was in mucho pain. My admission thhrough the ER was for "Renal vein thrombosis." It quickened my surgery. Step right up! No waiting time! I forget if I was given dilaudid or morphine. I was glad it worked.

As to poor reading of scans, one time the radiologist remarked on my coronary stent. WTF? I don't have one. I questioned him and his response was that the transcriptionist erred. Transcrptionist my arse. Do your job right.

No the mass IS contained in kidney without invasion into the artery/vein as far as we know now. He is going to staple off the artery/vein.

This does bring up more questions, like what ARE the risks given the placement is between the artery/vein.

Do they take out lymph nodes automatically?

I must say this surgeon's demeanor was much more serious after he finally got the CT report then how he played it down with the MRA report.

But tell me where and what kind of pain are you in? I have a deep aching in my back for months now to the point I often need to lay down. My MS neurologist says its the tumor, but my surgeon says no. Hmm..

Thanks again for your kind response.

Continue good health to you. Sorry about your erroneous report..geez.

Jan

Jan4you said:

No the mass IS contained in

No the mass IS contained in kidney without invasion into the artery/vein as far as we know now. He is going to staple off the artery/vein.

This does bring up more questions, like what ARE the risks given the placement is between the artery/vein.

Do they take out lymph nodes automatically?

 

I must say this surgeon's demeanor was much more serious after he finally got the CT report then how he played it down with the MRA report.

 

But tell me where and what kind of pain are you in? I have a deep aching in my back for months now to the point I often need to lay down. My MS neurologist says its the tumor, but my surgeon says no. Hmm..

 

Thanks again for your kind response.

Continue good health to you. Sorry about your erroneous report..geez.

 

Jan

Oh and I DO have a coronary stent! Though not mentioned.

It occured to me today that because I'll only have one kidney after surgery that my rare, genetic kidney DISORDER (not disease) might improve now somewhat?

This disorder is called "Gitelmans." My Urologist kept saying, How do you spell that? I could not believe that working with kidneys he would not have heard of it. Its more of a deformity. My tubules spill out electroylytces, mostly potassium so its risky, but has been stable of late. If there is a stressor my kidneys read it the stressor as "fight or flight" and spill out way too much electrolytes.

Jan

Jan

GSRon said:

Hi Jan..!  OK, your latest

Hi Jan..!  OK, your latest description does not make sense to me..  if there is tumor in between other organs, that it may be a lot bigger than you think...  However if you have the right surgeon it should be OK.  I still suggest you aks him how many surgeries like yours he has done this year...

OK, I looked up that Gitelman's.. you may want to ask questions about diet post surgery...

On Lymph nodes.. it depends.. they do not always remove them... and in my case I was told they could not find any (near the Kidney), which happens.  Doing the scans with contrast is supposed to make anything with Cancer light up, including the Lymph Nodes.  Again sometimes they do not know for sure what they will find until they get there...  (I thnk when they said they could not find any, they must of been looking for my brains..).

Oh yes, and do not panic during the surgery prep, like I did... the nurse stated to shave and clean me on the wrong side..!  Then she told me, don't worry she will be doing both sides and more...  In my case my incision is like an upside down "Y".. going from the breast bone to just above the navel down both sides..  I am pretty sure your incision won't be anywhere near that big..!

Yes, it WILL hurt the first few days.. do not try to be a hero, take the drugs..!!

Ron

HI Ron, thanks for your response, can always count on you! Not sure what you mean when you say you my description doesn't make sense to you. Couldn't be how I expess myself=duh!! LOL

This tumor is contained in the kidney, in the middle of the kidney, between the Artery/vein which would make doing a partial very precarious. I certainly agreed to doing a "radical" instead.

Gitleman disorder just needs to be monitored for potassium/magnesium levels mostly and its treated via IV drips anyway. But thanks for checking.

As far as surgery prep I have had a C-section and was shaved DURING labor contractions !! I also just had a gastrectomy done laproscopically 7 incisions.

I did very well post surgery, even the "gas" they use to blow up your abdomen so they can see didn't bother me. My spinal stenosis and muscle spasticity in my legs causes enough pain..then add vomiting following stomach surgery..still it didnt hurt. Trust me I was just plain lucky!

I heard the incision for "open" goes around the side, front to back. At least now  I think that is it. He is going to try to do the small incisions but because I have a long vertical incision and 7 smaller ones, he says it depends on the scar tissue. If they cannot get through that scar tissue they cannot get their instruments (robatic) through. All I want is to hope for a laproscopic procedure, but will accept he'll do what is best once he gets here. I'll have no choice at that point, now will I?? LOL

Was that TMI? LOL

And YES I will not try to be a hero..but I never needed any narcotics after having my stomach surgery.

Thanks again, Jan

Minnesota Girl said:

My tumor was in a similar position

Hi Jan -

My tumor was about 2.5 cm and similar in position to yours - less than 1 cm from the renal vein. The nearness is just one of the many reasons I was blessed to get an 'early, accidental' diagnosis. Because of the position, my doctor (the top in my area) was not willing to attempt a partial. He offered to send me to Cleveland Clinic, but told me even there it would be a game day decision. If the whole kidney was likely to go, I decided to stay close to home for surgery and recovery.

I wound up with a hand-assised laparoscopic full nephrectomy. I think they always tell you they might have to go open - just like any lap surgery. They said the same thing when I had my gall bladder and hysterectomy. One thing my surgeon did that I really liked - he always has a top vascular surgeon in surgery with him. As he told me, he is willing to split his fee to assure that his #1 choice is right there if he ever needs him.

The dictation on my first CT was wrong, too. Stating the tumor was in my right kidney when it was only in my left. The urologist was mad, too. He made them correct it and printed a copy for my records. I joked I was going to have my husband write instructions on my tummy.

Keep your chin up. We are here for you!

Thanks, Minnesota Girl (We're-Packers) playing you right now~your response is helpful.

May I ask where and how long your incision was? About how long was your recovery time? The reason is I have other chronic conditions and already on disabilty, mostly for my MS.

And did you have any back pain with yours?

I plan to write to the Medical director of each place about the errors. Never thought to have them re-write it. Thanks for that idea!

Minnesota Girl said:

Your questions

My incision was about 6 inches long, from my belly button down. Plus a bunch of other small ones for the other instruments/gas/etc. Between the swelling and the incision, I wasn't able to wear real pants for a couple of months. The worst part was that I gained 8 pounds because I didn't have my real pants to keep me honest.

I work in a professional setting and was back after 7 weeks, but only part-time for the first two. I did a lot of standing the first weeks back because it was uncomfortable to sit. It took about 6 months to fully get my energy back.

I had no symptoms before my surgery. My back ached for some time after surgery, I think because the doctor had a hard time getting the adrenal gland out.

I hope this isn't too much information - I like a lot of INPUT, so don't let me make you nervous. You'll do great!

Thanks Minnesota Girl for your response. I too like to know it all, so I am prepared. I already have an vertical scar from belly button down. My only dread is having the OPEN cut.

So your back ached AFTERWARDS?

And I wonder if you had any trouble getting into/out of bed?

Thanks again, Jan