CSN Login
Members Online: 15

You are here

Recurrent in IVC

Floybrian
Posts: 8
Joined: May 2017

Hey all. Does anyone have any experience with recurrent RCC in the Vena Cava? Looking at my second surgery in a week to have a small tumor removed and the Vena Cava patched. Its been almost 2 years since my nephrectomy and I am trying to wrap my head around what may be coming. Any thoughts or advice?

a_oaklee
Posts: 424
Joined: Nov 2013

Hi FLoy.  I'm sorry you are going to have another surgery, but it is really good that the tumor is small and they are able to remove it.  I'm on this site for my husband.  He had a thrombus growing into the vena cava and it attached a little bit to the wall. The thrombus was an extension from the kidney tumor.  His nephrectomy included removal of the growth in the vena cava.  This was in 2013.  He didnt need a patch like you are getting.  His was basically scraped out.  Needless to say,  he spent the night in ICU just to be closely monitored after surgery, and was home on the fifth day.  This wasnt a recurrence.  It was found as a growth prior to his nephrectomy.  Our only advice is to go to a major medical center with experienced surgeons and staff.  Bigger places see more and do more of this kind of vascular surgery.  

You might want to check out smart patients.  I know theres a couple people over there that have had vena cava and/or aorta involvement.  

Do you mind telling me how they found your recurrence?  And did you have symptoms?   My husband had severe leg swelling that went away immediately post op.

Floybrian
Posts: 8
Joined: May 2017

Thanks for for your advice and info. The recurrence was found through a regular six month imaging check up. Watch and wait has been the biggest part of my treatment after my initial sugery.Mya cancer had grown into my renal vein but that was not dicovered until mid-nephrectomy. The surgeons got what they could see out but the margins were positive so we always new there was a chance it could come back. I have not had any symptoms that I can tie directly to my recurrence although I have had some unusual fatigue. Did your husband have any lymph nodes removed? I've been told to expect swelling if they take some of mine.

a_oaklee
Posts: 424
Joined: Nov 2013

I'm glad they found the growth through your regular 6 month imaging.  What kind of 6 month imaging do you have?

Part of my husbands pre-op orders were to have a MRI of the kidney surgical area.  That was how they found the vena cava involvement.  It did not show up on his CT scans.  They immediately cancelled his surgery and wouldnt give us another date.  We were highly disappointed.  They gave him targeted therapy in the hope of shrinking it.  First drug didnt work.  We only tried for 6 weeks.  Second drug started to shrink it.  They refused to do surgery where we were.  We found another surgeon at a major medical center who felt it was definetly operable.  My husband lived with than darn 5 cm tumor for one year.  Our regret is not going to another facility sooner.  So when they finally operated they did remove the kidney and thrombus, shaved off the surface of the vena cava, and one enlarged lymph node.  All were positive for Rcc clear cell.  After he recovered 2 months, he was put back on targeted therapy.   Another part of our preop lab work was a nuclear bone scan, and the results weren't good.  It made him stage 4.  I think that is why the first place wouldnt operate.  Actually they rudely told us that.

So, as you can see, his story is very different from yours.  You had a positive margin.  So in a weird way it's just like leftover growth, but not a completely new tumor or new site.  Seems more positive to me to think of it that way.  I'm no doctor though.

Anyway, my husband had no problems with the surgery or recovery.  He has had no new sites or activity.  He feels pretty good and is active and working.

You are going to be okay.  

The swelling in his legs was because the return of the blood, circulation, from his lower extremities was being blocked by the tumor in the vena cava.  Honestly that's why he went to ICU postop.  He was losing all that swelling from his legs after surgery very quickly.  

If you dont have leg swelling, I think that is very positive for you.

We also dont have confidence with scans re this area, and yet they dont approve of MRIs to check this spot.  

You can be tired because your adrenal gland was removed (most likely).  Maybe you should inquire about that.

When is your surgery?  I will be thinking of you.

Floybrian
Posts: 8
Joined: May 2017

Surgery is in a weekand yup we think it is probably left over from the original tumor. I'm sure the surgery will be fine and other than just the overal pain in the neck of another hospital stay/recovery etc. I'm not tooworried about all of this. My real stresscomes with knowing the tumor has been sitting in a major vein for a while. When I pressed my doctor said tha realistically I had a 50/50 chance of it metastisizing but there was know way to know when or if that might happen. Ever hear of the sword of damecles? Thats what this feels like. The two things I hate the most are waiting and not knowing. Thank you though for you thoughts and for listening. Believe me..it helps.

a_oaklee
Posts: 424
Joined: Nov 2013

To anyone reading this, keep in mind this was the treatment back in 2012/2013.   Treatment choices have dramatically changed.  At the time, immunotherapy wasnt available.  This is why people say not to really research stuff that's beyond 5 years ago.  

a_oaklee
Posts: 424
Joined: Nov 2013

Thinking about you Floy.  Hope you are recovering well.  

Wehavenotimeatall
Posts: 479
Joined: Aug 2017

hopefully all behind you and you are on the road to recovery

like Wonderful Annie said... yours does not sound like mets

 

take it easy

you will get through the bad days

Annie

Floybrian
Posts: 8
Joined: May 2017

Thanks for the support and good vibes, Surgery was a big success and recovery has been swift. The doctors patched my IVC and too out a couple of lymph nodes and a bit of my ureter for testing. Pathology says the tumor was RCC, probably left over from original tumor.  Glad to get it out and am now hoping this was the last. Still a 50/50 chance on future MET's but thats just something that I'll have to live with. I think pretty much everyone lives with that unknown on some level. 

a_oaklee
Posts: 424
Joined: Nov 2013

I'm so happy to hear from you...that all is well with your surgery and recovery!  Exciting news.  I'm so glad it's over, and behind you.  

Subscribe to Comments for "Recurrent in IVC"