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Renal Vein Invasion

GSRon's picture
GSRon
Posts: 1220
Joined: Jan 2013

Hi All..!  OK, so a few of us have had Renal Vein Invasion.  So, I thought this should be discussed a bit and maybe we and others may learn about our experiences.   First I will say that thanks to a great surgeon at Stanford, my surgery went well.  What he did was to have me do multiple Scans so that as he said.. "not find any surprizes when he opened me up."  This turned out to be the right methodology for me and maybe others.   A bit of history, I had was was thought to be Kidney Stones in January, 2012.  But after about a month, my Urologist thought that an MRI was in order to see how many stones and how big... Surprize..!!  A huge tumor was found.. and the "trip" started.  So that first scan was only looking for Stones (No Keith Richard..)  but the Doc that did the scan review noted several other concerns.  One was some Renal Veing blockage, a couple of spine issues, a couple of cysts in the other Kidney and a spot(s).?) in my left lung.  So when I got to my Surgeon he wanted better pictures and to KNOW what was going on inside me.  Smart doctor..!

So, yes I had Renal Vein Invasion - Cancer of course.  I had Cancer on it's way to both my Heart and Liver, but luckily it did not get there at that time. My back issues indeed were bike / car adccient related, the lung spots were undefined but not considered to be Cancer.  My Kidney Surgeon postponed my surgery to get a second "hand" a Liver surgeon to handle the Renal Vein issue.  My Doc told me he sees a case like mine about twice a year.  Most other hospitals may not know what to do should they come across such a case and it could end up being really bad or a second surgery or.???

To "fix" me up, of course my left Kidney with a large 14 by 12 CM tumore was removed (late stage 3), and the Liver Doc did a procedure where he opened up the Renal Vein and scraped the Cancer out of it.  This part of the procedure was very long and was dangerous to my remaining Kidney.  In fact they were worried my remaining (right) Kidney could / would fail.  Luckily my Kidney bounced back, no Dialysis neded.. whew..!  I was 10 days in the ICU waiting for my Kidney to respond.  OK, so I did have some unclear area in my Renal Vein post surgery for several scans.  Then came the news of Mets to my Lungs and Adrenal Gland.  Now that I had a few months of Votrient treatment the latest scans showed no more concern about my Renal Vein..  Not sure if that is connected or not, but thought it was worth mentioning..

So, I ask those that have also had Renal Vein Invasion to tell me (us) your story.. how did that part get handled..?  Do you know how much invasion you had..??  Were your follow up scans clear in that area..??

Be Well All..!!

Ron

Phoenix Rising's picture
Phoenix Rising
Posts: 154
Joined: Jul 2012

Please excuse my lack of knowledge regarding the names and positions of veins, but this MAY apply to your question. If not, it makes for good reading anyway. 

 

I had invasion in the inferior vena cava. The ivc is the large vein  that carries blood from the lower half of the body to the right atrium of the heart. The renal vein on the left side drains into the ivc. My right kidney, however, was the one with all the cancerous tumors, complete with a cyst that burst and bled, which lead me to the emergency room.  So ends my knowledge of veins and venas and cavas.

 

All of those those problems, as well as some affected lymph nodes, were alleviated in one surgery after a series of escalating imaging   scans including an x-ray, CT scan, MRI, and biopsy (and I will NEVER agree to another biopsy). My husband said the surgeons must have been elbow deep in my abdomen trying to get to everything. My follow up scan showed a single lung spot about the size of a pin head that was worth watching.  It grew and became "suspicious" so it was removed via thoracoscopic surgery. More lung mets began popping up like daisies after that, so here I sit.

foxhd's picture
foxhd
Posts: 1901
Joined: Oct 2011

I was diagnosed because of urinating blood but at same time having tremendous pain. Discharged home with pain meds since it was a weekend, but forced my way back into being admitted due to severe pain. ER doc determined the pain was from renal vein thrombosis. I did think that I would die. My surgeon removed it with my kidney to start this journey. Of course, initially we thought it was kidney stones also.

Farriswifey
Posts: 3
Joined: Feb 2013

This might be the least helpful post ever. But thought I should finally jump in. First time posting....eeeek! I found about my cancer in September. I was peeing blood. Had an ultrasound, ct scan and MRI. I feel like I didn't know what was going on. I still don't know what is going on lol on October 10,2012 I had an open radical. 12 hour surgery. Clamp failed and needed a transfusion. Was in the ICU for three days. In the hospital for a week. I had a 7 cm grade 2 clear cell tumor that had grown into the renal vein and IVC. Doctor told me he got it all. I feel like I have very minimal follow up. Blood work and ultrasound every six months. Asked for a chest X-ray and the doctor said it wasn't necessary and ct scans were just exposing me to unnecessary radiation. That we only needed to monitor the remaining kidney. That if and that's a big if it comes back that will be the spot. I said okay dokey and that's it. I'm waiting for an ultrasound in October but wondering if thats adequate follow up.  Since i had such a small tumor and low grade thinking its probably right. Feeling good, almost feel a little guilty for wasting time being worried and stressed out about it.  Not sure if any of this was useful or helpful. Just thought it was about time I stop lurking:)

TillieSOK's picture
TillieSOK
Posts: 233
Joined: Jul 2013

I, and my family doctor, thought I had gallbladder problems, so they ordered a full (which saved my life, I think!) abdominal ultrasound.   The gallbladder was perfect, as were the rest of my major organs, with the exception of the right kidney.  Had a 6.7 cm tumor on the midline of the kidney... this was April 3, 2013...following week CT and visit with urologist then visit with surgeon and an MRI...then a laporoscopic radical nephrectomy on April 22, which delivered me of a bouncing 499g kidney and Chromophobe Tumor. I had "gross invasion of renal vein" plus invasion of renal sinus fat. Stage 3a tumor Grade 2. Surgeon said, and path report verified, that there were clear margins. He said that he got it all and no more worries.  He wanted to do a chest X-ray only, but an oncologist I consulted said, with the lesion on my liver, I needed either ct or pet scans every three months.  I've had two ct's and the last one shows the spot on my liver has grown significantly and, instead of being a possible hemangioma, they are now saying it is probably a complex cyst.

GSRon's picture
GSRon
Posts: 1220
Joined: Jan 2013

Hi All..  OK I did a little homework... the Renal Vein conects to the Inferior Vena Cava.   Renal Vein is where the blood empites in to from the Kidneys.  http://en.wikipedia.org/wiki/Renal_vein    So, if the Cancer got all the way to the IVC.. woa... it was really truckin...!!   One of the reasons I started this thread is to share our experiences... and it seems that different doctors have different opinions..  Wifey.. I wonder what kind of doctor you are seeing that thinks your follow up is correct..?  I am no doctor, but I share your concerns about your follow up.  I was hoping that someone else would of chimed in with more knowledge on your circumstances.    Tillie dear, glad to hear your Liver growth is a cyst and not a Met...  Keep diligent..!

Ron

Kidneycancer@35
Posts: 14
Joined: Aug 2013

Hi Tillie

 

My tumour was also found after pain, which the dr suspected was caused by the gall bladder. I also had abdominal ultrasound which picked up a 4cm mass which they initially thought to be angiomyolipoma. It was chromophobe rcc. I am interested as all along I've been told it is unusual to have pain (one idiot went so far as to tell me it was in my head -not sure how that works as the pain was what led to this being found). Since joining this forum, I've heard from a few women with similar symptoms who also ended up with a chrcc diagnosis.

I was told my tumour was very close to the renal vein so I'm anxious to get my pathology report next week.

Take care, everyone

 

 

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

For the purposes of my database building,  I'd be grateful if you could put me in touch with everyone you know who has chRCC.  It may well be that they are all already in my db but given the rarity of our pathology I'm anxious not to miss any cases that could come my way!

 I hope your path report turns out to be as good as possible and I look forward to hearing the finer details once you have them to hand.

Kidneycancer@35
Posts: 14
Joined: Aug 2013

Hi TW,

 It was Fizziwizz a

nd Tiffanyz. They commented at the bottom of the chromophobe rcc thread I started the other day.ll

 

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Thanks, Lorna.  Please correct me if I'm wrong but I don't think Tiffany has chromophobe RCC?   If I'm misremembering, I hope that she'll give me her personal data for inclusion in my database!

Farriswifey
Posts: 3
Joined: Feb 2013

Thank you Ron for bringing up this topic. What little I do know I've gathered from lurking on this board. My urologist hasn't been too forthcoming and seems to just think everything is going to be peachy. So I guess I just follow that lead. But I also don't want to be dumb. Maybe too late for that. You posed so many questions I never thought to ask. He just keeps thinking that with my age (37) I will be fine and have nothing to worry about. Hope he's right lol. And I hope to learn a lot more from all you smart people. And thankful for all the examples of strength and kindness. Thinking I'm pretty lucky to have gotten off so easy. Thanks for being so welcoming:)

GSRon's picture
GSRon
Posts: 1220
Joined: Jan 2013

Oh Wifey...  there are no dumb questons here..  ask away...  the answers may not always be correct or may not be what you "want" to hear.. but we all try to be helpful. 

First, the more info you give us, the better we can offer suggestions.  You mentioned a Urologist..  OK, here is comes.. you would not see a Proctologist for a dental issue... so go see an Oncologist, make that a Kidney Oncologist if possible and have that Dr review your case.  Even a general Oncologist may not be up to date on the latest RCC scoop...   Yes I hope there is nothing bad in your future.. but early detection is huge...  Oh yes, feel free to tell us your general location... someone here may have a Dr recommendation for you...

Be Well All..!!

Ron

Phoenix Rising's picture
Phoenix Rising
Posts: 154
Joined: Jul 2012

Hi Farriswifey,

The urologist who performed my radical nephrectomy, etc, saw fit to tell me it was time to move on to a physician who was more suitable for my condition.  He then referred me to a kidney oncologist.  So you can feel more comfortable with the feedback regarding your condition, you may want to ask your doc to give you a referral. 

Gordon Charles's picture
Gordon Charles
Posts: 91
Joined: Jun 2012

I thought it would be easier to simply cut and paste from the report:

" The patient presented with acute shortness of breath in the very beginning of May. In the course of workup, he was found to have a pulmonary emboli and a mass on his right kidney. The tumor measured 6.6 x 5.6 x 4.3 cm. There was a right renal vein thrombosis present and multiple pulmonary emboli. The patient had a resection of the primary tumor mass in the right kidney on 05/23. There was presence of a Fuhrman grade 2 tumor. The tumor size was 7.3 x 4.5 x 4.9 cm. There was no involvement of dartos fascia, but there was involvement of the renal vein with infiltrates into the renal vein. There were 2 regional lymph nodes removed, none of them were involved with tumor. The patient therefore was staged with pathologic T3 N0 disease. In June we started Denosumab for bone metastases, but no other therapy. Patient had a disease recurrence in lung documented with CT scan on March 19. During first cycle of high dose IL-2 therapy, he was able to get 6 injections. Therapy was stopped due to renal insufficieny and thrombocytopenia. During second admission on 4/23/2012 he was able to get only 2 infusions of IL-2. Therapy was stopped for renal insufficiency. During visit with me in in March we decided to start Sorafenib 400 mg twice a day because of progression of disease in lung. Patient could not tolerate Sorafenib and therefore we stopped this medication and started Axitinib 5 mg , but at reduced frequency once daily."

My lungs were full of blood clots spit out of the tumor and into my vena cava so it was no surprise when the cancer came back in my lungs....my 2 cents worth for the renal vein discussion....

Farriswifey
Posts: 3
Joined: Feb 2013

Thank you Ron and Phoenix. I had asked after surgery about an oncologist and he said that I was cancer free and so I wouldn't be need an oncologist. I wish I had come here before surgery and after but everyone warned me to not google and get myself all freaked out. Found this awesome place after the nerves of the first check up were hitting me hard. I'm just wondering if its too late to go to oncologist now. And worried I'll be wasting theit time and they will think I'm a spazz. I have the tendency to not want to bother anyone with questions and just think they will tel me what I need to know. Thanks so much for listening to my complete ramble. Oh i did remember after my surgery having a really awful burning pain right down the middle of my abdomen. Like fire. Don't know what that was from. Just curious if anyone else had anything similar. I'm in California, the Bay Area. I have been curious about surveillance strategies and stuff. Figured the renal and IVC involvement were no biggie. does that make a difference even with a small and low grade tumor. thank you guys for everything. Hope you all have a wonderful healthy weekend. Thank for all the info. Much appreciated:)

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

It's never to late to seek expert advice and you owe it to yourself to be more active in maintaining your own health.  Go get a consultation and ask all those questions!

GSRon's picture
GSRon
Posts: 1220
Joined: Jan 2013

Hey Wifey..!  OK, TW is correct... find a proper Oncologist and get that second opinion.  Yoou said "Bay Area" but that still is a huge bit or real estate...   I am south of San Jose in Salinas, so I go up to Stanford.  But if you are further north there are some great Docs in San Francisco...   Suggest you check out what your insurance covers, and find the best Dr you can get...   Come on back and let us know how you are doing...

Ron

GSRon's picture
GSRon
Posts: 1220
Joined: Jan 2013

Hey Wifey... is your middle name Bueller by any chance..??  :)

Galrim's picture
Galrim
Posts: 274
Joined: Apr 2013

Theres macroscopic renal invasion and microscopic. Just mentioning this to clarify and avoid confusion if someone looks in their path report and see the word renal invasion.

When it comes to the distinctions, then to put it short: Post surgery macroscopic invasion is an independent prognostic factor. Whereas microscopic invasion is a dependant one (and actually occurs in up to 35% of all RCC cases disregarding the stage and grade).

/G

TillieSOK's picture
TillieSOK
Posts: 233
Joined: Jul 2013

What does it mean when both the macroscopic and microscopic are identical?

Galrim's picture
Galrim
Posts: 274
Joined: Apr 2013

By identical? location?

/G

TillieSOK's picture
TillieSOK
Posts: 233
Joined: Jul 2013

On the path report under both Macroscopic Extent of Tumor and Microscopic Tumor Extension, it says exactly the same thingTumor extension into Renal Sinus.

and on the Pathology Staging (TNM) it says:

Primary Tumor (pT) : PT3a: Tumor grossly extends into the renal vein.  Tumor invades perirenal and/or renal sinus fat, but not beyond Gerota's fascia.

 

sorry for being so ignorant.  This is still all pretty new to me.

Galrim's picture
Galrim
Posts: 274
Joined: Apr 2013

And theres no question in here that will be read as such :-)

As for your path report its as you indicated, identical invasion site as for the renal invasion. When you have a macroscopic invasion the microscopic one is a detail that doesnt have much weight in your prognosis.

/G

TillieSOK's picture
TillieSOK
Posts: 233
Joined: Jul 2013

 

Ok, so 'splain it to me, Galrim (Lucy  Wink).  Why does the macroscopic carry more weight in prognosis than microscopic? And....what generally is the prognosis with renal vein invasion?  

Galrim's picture
Galrim
Posts: 274
Joined: Apr 2013

When your prognosis is done, in terms of estimating your risk for recurrence, the oncologists work with a range of prognostic factors.

Some of these independently poses an increased risk for recurrence, others only if they are present in conjunction with other, or very specific, factors.

Some of the primary factors which independently results in an increased risk of recurrence:

Metastatic disease at time of diagnosis

Large tumor size

Tumor grade 3 or 4 (Fuhrman scale 1-4, the lower the better)

Macroscopic invasion of the renal vein, renal fat tissue or the gerotas fascia (macroscopic renal vein invasion increases the risk of spreading to other sites in your body quite a lot, sorry)

Involvement of lymph nodes

Specific agressive sub-types of kidney cancer

Extensive necrosis in the tumor tissue

Sarcomatoid features in the tumor tissue

 

Dependant factors, which doesnt by themselves increase the risk of recurrence but is considered as a part of the "full picture":

Microscopic renal invasion

Age and general health condition

Tumor grade 1 and 2

Less agressive RCC subtypes

 

I probably missed one or two.

 

As for your own prognosis you should sit down with your oncologist and get a detailed breakdown of everything. Obviously macroscopic vein invasion is a quite negative factor, but it is still only a part of the full picture, and statistics are only numbers, not a reflection of your individual case.

/G

 


 

 

 

TillieSOK's picture
TillieSOK
Posts: 233
Joined: Jul 2013

Thank you for breaking it down to an understandable level.  Makes much more sense now.

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