Residual tumor left in vena cava

Paw,

They missed a 2 cm tumor in your vena cava?  Um... how?  I know it's not a perfect science, but that's a little ridiculous.  Are they 100% sure it was connected to the original tumor to begin with?  I don't think I've ever heard of a new tumor arising in the vena cava, but I'm just trying to rationalize them missing it, I guess.  I mean, didn't they look at the scans before the surgery?  

I would seriously push getting as much out of the hospital as possible, considering it was their mistake.  Get as many scans as necessary to make YOU feel like it is all out, and it should be on their dime.  2 cm is a big chunk to miss.

- Jay

jason.2835 said:

2 cm???

Paw,

They missed a 2 cm tumor in your vena cava?  Um... how?  I know it's not a perfect science, but that's a little ridiculous.  Are they 100% sure it was connected to the original tumor to begin with?  I don't think I've ever heard of a new tumor arising in the vena cava, but I'm just trying to rationalize them missing it, I guess.  I mean, didn't they look at the scans before the surgery?  

I would seriously push getting as much out of the hospital as possible, considering it was their mistake.  Get as many scans as necessary to make YOU feel like it is all out, and it should be on their dime.  2 cm is a big chunk to miss.

- Jay

Hi ya, just to ket you know recurrence in the ivc and the renal bed occurs in about 2 to 4% of cases. If it invades the ivc wall you are almost guaranteed that it will reoccur and

the long term prognosis is not great. If it doesnt invade the ivc wall,   you have a better chance. Aggressive surgery to remove ivc invasion does provide good outcomes for people but you are more likely to have reoccurrence. 

In terms of an MRI, im not aware that that is standard treatment. Everyone seems to have different scanning protocoks. As a stage 3 i would expect you to have 3 monthly CT scans of chest and pelvis for 1st 1 to 2 years. And then yearly. But it seems to change at different hospitals and in different countries

angelsnls said:

ivc recurrence

hi b1, thank you for that answer, do you know what the treatment options are for ivc recurrence, I have had 3 monthly scans since nephrectomy and have been t3 grade iv since outset with mets to lungs, each ct scan says recurrence in kidney bed with IVC invasion noted again. So I dont know if it is actually invaded the IVC or just close to it or through it, I see onc next week so have loads of questions written down to ask any ansswers much appreciated. I live in Scotland 

Lots of love

Angela x

Hi angel,

Im no expert, but i think it depends where in the ivc it recurs. If its before the liver its better (Level 1 or 2). Higher up and it gets a lot harder.  I have read that sometimes they try radiation to the site but cant remember where i read it. 

They may offer to reoperate but a number of factors come into play such as previous  scar tissue, your age, other issues you may have, your overall health status and if you have other sites where it is spread. Surgery would also carry a much greater risk the 2nd time around. 

You may want to ask about any clinical trials currently available. They may take you off votrient and try something else. Sorry, i hope this doesnt sound to depressing. 

paw1218 said:

Pretty sure it is residual

I'm pretty po'd.  I went with a Boston teaching hospital that my husband works at since it gives more access, ets.   Both my urology and vasucalr surgeons are top in Boston.  They did a large 'chevron' incision in case they neede to lift the liver, but then said they got it all and did not have to lift the liver.  I've had tons of scans post surgery, but the mri was the first one done post-op and that's what showed the 2cm piece. My husband and an oncologist co-worker compared the before and after surgery MRI's and are quite convinced it is residual and not recurrent.   I really question why an MRI was not done instead of just CT's up till now post-op since MRI is apparently much better at lookng at the surgical site.   Needless to say I'm defintely going to another hopstial for the second surgery.    In terms of the first hospital,  I'm wondering how I can properly determine what proper protocol is for post-op in terms of the MRI.  I think I'll try talking to my insurance company first to see if they have any insight.  The surgeon I'm having do the next surgery talked about a scope in my vena cava after he pulls the tumor out and also some sort of sonogram I think he said.  Neither of these was done for the first surgery.  

we have found that MRI is the best tool for follow-up; the only time a CT scan is better is for chest since an MRI requires absolutely no movement and it's hard not to breathe.

a ct scan will show mets when they are large enough (3 cm). The MRI costs more and takes more time.

after multiple requests for MRI instead of ct scan, they have finally agreed to do this for my husband. The last ct scan showed a "slight" something on the left pedicle where he'd had a laminectomy 2 years ago. No one was concerned but I contacted the surgeon who called the radiation/oncologist and she did an MRI. That test showed the "slight " something to be residual 3.5 cm disease and a very small spot on the right pedicle. He had 5 cyber knife treatments and will have MRIs from now on.

our family recalled my saying "they got most of it" after the laminectomy although I couldn't remember; checked it out with the surgeon and indeed that is what he had told me.

we have a great team but it takes vigilance to stay with it; in our family, my relentlessness (otherwise a major flaw) to monitor.

my husband had an MRI (WITHOUT CONTRAST) and provided the radiation/oncologist with a very clear picture.

Sarah