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IVC Wall invasion

b1
Posts: 17
Joined: Apr 2014

HI, Just wondering if anybody on here has experienced IVC thrombosis invading the wall. And also whether you went on to develop mets? 

GSRon's picture
GSRon
Posts: 1304
Joined: Jan 2013

Hi B1.. welocme to our little club here..   Yes and Yes.  Since you are new, you may wish to fill out your profile page a bit.  Have you had surgery yet..?  If so, what is the pathology..?  

My first Mets showed up almost a year after surgery.

Ron

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DonMiller
Posts: 109
Joined: Feb 2013

Grade 3 and 11 CM's but I'm Still NED - 20 month scans in July. No sysmtoms - had an MRI for back. With RCC the stats are not in our favor but you just never freaken know.

donna_lee's picture
donna_lee
Posts: 885
Joined: Feb 2009

My second recurrence did not invade the IVC, but was developing in a lymph node attached to the IVC and the duodenum.  That was 7 years ago.  A year later, another node had to be removed and it was attached to the bifurcation of the main aorta where it splits to decend each leg.  6 years and so far, so good.  It's a total of 8 years (actually, 8 years on june 26th) since my first surgery.

Grab for the gold ring on the Merry go Round and Hang in there.

Donna

b1
Posts: 17
Joined: Apr 2014

Thanks for letting me know there are others in the same boat. Im a carer but have been doing alot of reading on prognostic factors. We seem to have a quite a few of them so was just wondering how many others are in similar situation. To recap. 

 

Op in april. stage 3b. 10cm. Grade 4. Largely sarcomatoid and rhabdoid features with necrosis. Ivc wall invasion and perinephric fat invasion. It is present at inferior margin. Very Symptomatic prior to op but fairly well post op at this stage. As agressive features, follow up at 3 monthly intervals at this stage. Its the unknown that has me worried. Ive largelly ignored the statistics at this stage as each person is different but I have yet to see evidence that people with ivc invasion do not get mets. Unless they already had them of course. 

Phredswife's picture
Phredswife
Posts: 162
Joined: Apr 2014

Hi b1. Phred had a similar histology . It invaded adrenal gland and hilar fat. He didn't have clear margins and it was also clear cell with extensive sarcomatoid and  rhabdoid morphology. It was 13 cm. He had had a lot of anaemia and night sweats and coughing which made him really nauseous. We are havng mri next week because doctors are unclear if it has recurred or not. Think it was next to renal vein but not in it. It was an upper pole tumour.

b1
Posts: 17
Joined: Apr 2014

Yeah dont read up on sarcomatoids features if you want to sleep lol. Still not sure what rhabdoid is. There is not much info I can find apart from in children which is completely different. 

GSRon's picture
GSRon
Posts: 1304
Joined: Jan 2013

So, why worry..?  That won't change anything.. right now you are NED, enjoy it..!  Should it change.. then on to the next fight.  Actually worrying could make it worse... worry / stress can negatively affect the immune system..  I know, easy to say but hard to do... try to find something postive and move forward..  Lots of us with Mets that live each day...

Minutes ago, I found out one of my old racer pals passed on.. in his sleep..  He had no health issues... He is now racing up in the sky... will miss him.. RIP, J.P.

Ron

Phredswife's picture
Phredswife
Posts: 162
Joined: Apr 2014

Sorry for your loss Ron. Sounds like an awesome way to go though. You are right about trying not to worry.

B1 try not to read too much of the scarey stuff on the internet. I'm a great one to talk I did in the beginning of this journey. A lot of the info is old. It sounds like in USA they are really on to how to treat this now.

Hugs Melissa ( keep whistling!)

a_oaklee
Posts: 421
Joined: Nov 2013

When my husband was diagnosed he was a Stage 4.  The 5 cm tumor was contained within his kidney, but he had multiple bone mets.  When a person is Stage 4, they don't always do a nephrectomy.  The standard of care is different for this stage.  There are multiple factors considered.  In the case of my husband they chose to find a targeted therapy drug that showed promise by reducing the size of the mets, prior to considering surgery.    One did not work at all.  The second drug worked minimally.  With the second drug there was some shrinkage of the mets but the tumor board decided not to remove my husbands kidney.  (It did not matter what we wanted).  The tumor grew into the IVC.  We found another medical center that was willing to operate to remove the kidney and thrombus.  That was a year and a half ago.  My husband is doing ok.  Has side effects from Inlyta, but the drug is working well. 

b1
Posts: 17
Joined: Apr 2014

Thanks, sorry to hear about your friend.. It is true, you never know whats around the corner. Your right about not reading or looking at the internet to much, karma bites!

I had to laugh at myself last night, I was on my mobile, it was late, i was tired, i thought i would look at the Kidney cancer association conference on you tube, you know for a bit of light relief not. i think i got about 5 minutes in, and that was it, nighty night, i woke up a few hours later and it was still going!!!  Needless to say this was not a cheap exercise, it used all of my data! now i am on rations for the rest of the month lol. that will teach me!! When i did wake up, i saw that there was awoman on there video with very similar types and she is going well a year down the track. if i could only remove the worry gene it would all be good. its always interesting reading peoples stories on here

b1
Posts: 17
Joined: Apr 2014

posted twice doh!

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