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

Jan4you's picture
Jan4you
Posts: 183
Joined: Oct 2013

Hello again~

I only posted 1x as I am new here. I have a 4.2 mass in left kidney but it is in the middle and between(?) the renal artery and vein, so I have to have a radical nephrectomy. The surgeon is going to try and do this laparoscopically, but warned me he may have to do an "open" incision if need be. Seems this makes it riskier for bleeding? But now since he is removing the entire kidney wouldn't it be less risky? Or not?

Also, can you believe that not one but two radiology reports were erroneous? The first one (MRA) stated on first page the mass was in the right kidney with a cyst on the Left. In the next page he states the mass is in the left kidney. So I asked at the initial consultation apt which is it and if both kidneys showed some changes? The RIGHT kidney is fine!

Okay then the CT radiology report states that the Right kidney is unremarkable, BUT in the very next sentence says, there is a large mass (listing measurements) in the Right kidney. WHAT??

I want to report these two radiologists and glad they are NOT my surgeons taking out the wrong kidney. Geezlouize!! My Urology surgeon already "spoke" to them.. hmmm.

So my question remains, any risks to having this tumor within the area of the Artery/vein?

Thanks for any support!

Jan

GSRon's picture
GSRon
Posts: 1181
Joined: Jan 2013

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

Jan4you's picture
Jan4you
Posts: 183
Joined: Oct 2013

HI Ron~

No, I don't have invasion, its just that its positioned between the Artery and vein. So doing a partial is ruled out as too risky, however he had me make that final decision. If he was going to do a partial the risk of bleeding I believe is higher and riskier to remove..so..that is why he's NOT going to do a partial.

Sounds like invasion is much riskier..sorry for what you have been going through.

I originally had an ultrasound for liver when they found a "worrisome for neoplasm." So my primary ordered an MRI which turned out to be a MRA with contrast. But again, that was inclusive for some reason and incorrect in the report. So when I met with the surgeon (Urologist) he said I had a small, stage 1 cancer but needed to see it better with contrast from a CT to see where the blood supply was. That would tell him more definitively if it was cancerous.

So last night he showed me the mass. Its the position that concerns him for a partial. I also didn't ask about removing lymph nodes and such. I'll keep asking those questions.

BUT I am going to report on these two radiologists.

Thanks so much for your response~cont better health.

Jan

foxhd's picture
foxhd
Posts: 1873
Joined: Oct 2011

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.

Frank302's picture
Frank302
Posts: 71
Joined: Feb 2013

That is so funny , Fox  . After my last scan , three weeks ago , I  was also told that I have a coronary stent . I don't have one either . When questioned I got the very same answere you did .

Jan4you's picture
Jan4you
Posts: 183
Joined: Oct 2013

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's picture
Jan4you
Posts: 183
Joined: Oct 2013

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's picture
GSRon
Posts: 1181
Joined: Jan 2013

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

Jan4you's picture
Jan4you
Posts: 183
Joined: Oct 2013

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

GSRon's picture
GSRon
Posts: 1181
Joined: Jan 2013

OK Jan... yes as Hedrix would say... you are experienced..  Sorry did not know... thought you were a newbie to surgery.  I hear a few different versions of where the incision ends up.. I guess you get what you get..  Not sure if the robot is the way to go or not.. it all depends on the real size of that bugger..  Well, no matter what.. hope it goes well and you heal up fast and easy...

Ron

icemantoo's picture
icemantoo
Posts: 1477
Joined: Jan 2010

Jan,

Like you I had a 4.2 cm Tumor and had a left Neph 11 years ago. It was done Laproscopically, but the Surgeon said he may have to do a game day decision once he got in there to do open surgery. The other details I do not remember. Prior to the surgery I dai have back pain which occasionally shot down my leg. No connection was made before hand, but it did go away after surgery.

Does it hurt? You are in the big leagues now. This is not a procedure. It does however beat the alternative.

Hope the Surgeon gets the right, I mean left Kidney.

Icemantoo

Jan4you's picture
Jan4you
Posts: 183
Joined: Oct 2013

Thanks Iceman, I do agree that this pain which I have had for most of this year will go away following surgery. I am very well prepared for surgery as I have had a couple of abdominal surgeries. But I appreciate your response.

Jam

GSRon's picture
GSRon
Posts: 1181
Joined: Jan 2013

One more comment.. I looked up Gitelman because I never heard of it before and I was curious..  I have Gilbert's (pronounced Jill Bear).  They are totally different..  I learned something today...

Thanks..

Ron

Scottie22
Posts: 22
Joined: Apr 2013

Hi Jan

I don't post very often on here as there are so many wonderful people who offer advice and support.  However your case sounds very similar to mine although that said we are all individual and our conditions unique.  I was diagnosed back in April with a mass in my left kidney, similar size and positioning to yours.  My surgeon advised against a partial due to the risk of surgical complications and of not 'getting it all'.  I had my surgery on May 1st, it was open not laparascopic due to a previous large scar from a gall bladder removal years ago. The scar is diagonal about 7 inches long and all on front.  Looking back I recovered really well, healed up beautifully and was fit enough to travel alone from Phoenix to England in September for a 3 week vacation with family and friends.

On a really happy note I had my 6 month follow up last week and everything checks out great, NED.  I was thrilled when the doc told me that my labs were excellent and hard to distinguish from someone with two working kidneys.  So I am happy, continue as normal and check up again in 6 months. Doesn't get any better.

So stay positive, and all the best to you for your surgery and continuing wellbeing.

Joan

Jan4you's picture
Jan4you
Posts: 183
Joined: Oct 2013

Okay.. let me try this again, thought I already responded to Joan's post.

Hi Joan! Did your surgeon tell you ahead of time he was doing the "open" method or afterwards?

And I have a large abdominal scar plus little laproscopic scars from two previous surgeries. I better be prepared for an open method I guess. Were you anemic afterwards? And was your tumor between the artery/vein too?

Glad to learn you healed up fine and got to go on that great vacation!

Thanks for your response, much appreciated.

Warmly, Jan

 

Scottie22
Posts: 22
Joined: Apr 2013

Yes my surgeon did tell me beforehand that he was going to do the open surgery.  We were in his office (I took husband along for support) and he (surgeon) was showing us the CAT scan result on his computer.  He pointed out the position of the mass right in the center of my kidney (totally went over my head but hubby understood) and explained why he felt that a partial was not appropriate.  I seem to recall he said it was between the vein and artery and fully encapsulated within the kidney. I do clearly remember his words "lots of people live with one kidney"! He then went on to discuss open versus laparoscopic and asked if I had any previous surgeries.  When I mentioned the gall bladder op and showed him the long vertical scar from several inches above and to the right of my navel he shook his head and said it would have to be open. At the end of the day I have to say he did a really neat job given the circumstances. I was just so happy to have that out of there. No I wasn't anemic afterwards, all that bothered me was not being able to get around as quickly - I tend to rush everywhere - but I kept plugging away, walking around the house, then a little outdoors, then further afield you get the picture. Hope this is helpful, I tend to ramble on a bit sometimes.

Regards

Joan

Minnesota Girl's picture
Minnesota Girl
Posts: 115
Joined: Jul 2011

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!

Jan4you's picture
Jan4you
Posts: 183
Joined: Oct 2013

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's picture
Minnesota Girl
Posts: 115
Joined: Jul 2011

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. Embarassed

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!

Jan4you's picture
Jan4you
Posts: 183
Joined: Oct 2013

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

srbelle1
Posts: 123
Joined: Jul 2013

jan:

when are you having your surgery? Since you have had so many surgeries, I would suggest that you ask your surgeon about adhesions.

my husband had an appendectomy when he was 30 and I know that his surgeons were very mindful of that.

sarah

Jan4you's picture
Jan4you
Posts: 183
Joined: Oct 2013

Yes  my surgeon is aware of my surgeries which is why he mentioned I "could" still have an open incision. But my lap incisions are all above the belly button.. so I am still praying he can do the laproscopic.

Thanks for your response. My surgery is tentativly set for Dec 30th, but the scheduler won't be working on it till this week. We just spoke before she left for Thanksgiving break.

Jan

GSRon's picture
GSRon
Posts: 1181
Joined: Jan 2013

Hi Jan.. it is kind of amazing at what does and does not hurt after the surgery...  I have read multiple different stories here... some had very little pain, some lots of pain.. back pain, side pain, etc.  Guess you will find out soon enough..  The worst for me was the several days after surgery was moving the bed.  The nurses would come in and push the button...  Slow and easy worked. but just pushing the button was terrible.  Heck even standing was just fine, once I got upright..  The body is amazing, it will heal... just may take time.

Ron

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