my grandmother was just diagnosed with renal cell carcinoma today. she has a cyst in one kidney and 3 other masses outside around that kidney that are interfering with the aorta and nearby organs (liver, spleen, pancreas). the masses are so big that they have pushed up and flipped the kidney over. the doctor says it doesn't look good. it has spread, is "nasty, aggressive, and fast". they have a ct scan from 2 years ago that shows part of that kidney and none of what is there now shows up on it. there is some lymph involvement. surgery is most likely not possible, but she is going to duke for a 2nd opinion (and surgery there if they think they can).

does anybody have experience with this kind of diagnosis? anybody know anything about VEGF therapy/treatment?

i'm trying to gather all of the information possible, including personal experiences.

5/20/2008 2:45:33 PM

cancer and VEGF therapy don't make much sense to me, as cancers are highly vascularized why would you want to encourage more vascular growth.... or do you mean anti-VEGF therapy?

5/20/2008 2:50:49 PM

yeah, that. i don't know much of anything about it beyond the 4 letters. sorry, i was just told about this over the phone like 3rd hand.

5/20/2008 3:01:28 PM

That type of cancer at the stage you described is usually fatal. I have a friend who lost his Dad, age 55, in less than a year who was diagnosed with a much less severe case that what you described. I'm very sorry. I'd go spend some time with your grandmother while you can.

5/20/2008 3:14:41 PM

thanks for all the support (via PMs).

grandmommy did ask the question "what if i do nothing?" to the Dr. and it sounds like she doesn't want to go extremes to fight this thing. she'll take chemo and whatnot i think as long as it adds meaningful time (where she won't be spending it all sick and miserable). the drs have made it sound like this will take her no matter what she chooses to do. i still have hope in duke. we'll see what they say.

are there better places for treatment? like the mayo clinic or something?

5/21/2008 9:58:53 AM

I don't know much about that cancer specifically. But from what little I've read, the best route of treatment seems to be removal first. They said cryoablation is pretty efficacious in older patients or those that are not good candidates for surgery. It sounds pretty neat they actually can freeze the tumor, oftentimes with just one treatment. Chemotherapy is not usually helpful with this type of cancer and it seems oncologists go for immunotherapy. One drug that seems to be a moderately new treatment has had success in treating patients without a good prognosis. It seems by "treating" they mean extending life and not necessarily curing the tumor. It's called Sunitinib, it seems to work like anit-VEGF. Cut off blood supply to the tumor and you stunt it's growth, or even stop it's ability to grow. Blood supply is one of the key components of malignancy.

As far as hospitals, I've always been told hospitals are NOT created equal and if you don't do your research you'll never be told by them where their limitations are. Find the cream of the crop for this type of treatment and get your grandma there pronto. It could mean the difference in quality of treatment and her quality of life.

5/21/2008 11:59:21 AM

from what you have posted it doesnt sound good

this is why most of the nre dept at tech is doing medical physics

5/21/2008 12:23:22 PM

I'm sorry to hear about your grandmother,

I poked around on pubmed and web of science, I figured you wouldn't have free access to the databases. I'll PM you some stuff I found. It doesn't look good even with the drug therapy and removing the kidneys, remission for about a year or extending life for 6-12 months.

5/21/2008 12:41:05 PM

i've been copy/pasting all of this to email to my mom. tww was extremely extremely helpful back when mom's dog had a huge liver tumor. this is what she said in response to the last couple of things i've sent about cancer treatments:

Quote :

"The letters written to you were extremely supportive & helpful, particularly given these people don't even know you. I'm very impressed with those wolf-packers."

last night she told me over the phone "the wolf web is definitely a valuable resource. i'm glad you have it."

see? this place isn't all shit.

thanks everybody.

[Edited on May 21, 2008 at 2:32 PM. Reason : e]

5/21/2008 2:29:57 PM

How old is she? What kind of medical shape is she aside from this?

I can help with the renal failure/dialysis side of the problem. What is her renal function like?

I am sorry for you and your family.

5/22/2008 9:32:45 AM

she's 73. she just had a knee replacement maybe 7-8 months ago and has had recurring urinary tract infections with an on-and-off slight fever since then. she has been overweight in the past and has done the yo-yo dieting thing repeatedly, although she's lost significant weight recently (getting in better shape before and after the knee replacement). she eats relatively healthy, drinks lots of water. the dr said her renal function is only slightly impaired and they are now more worried about how the tumors have pushed her aorta out of the way.

grandmommy, 2005:

5/22/2008 10:48:09 AM

I am really sorry to hear about your grandmother. I have not had first hand experience with the exact diagnosis that your grandmother has, but I recently went through a similiar situation with my own grandmother, I spent many a day in the ICU/ER with her and saw firsthand how much Duke did for her. I hope that things work out for the best, just keep positive!

5/22/2008 5:37:48 PM

Sorry about your grandmother's diagnosis. I don't have any experience, but wanted to pass that along!

5/22/2008 6:21:31 PM

she went home last night with a pain patch and some lortab. she was a little drunk but felt much better and could eat again. she looked much more like herself than she did a few days ago in the hospital and that made me feel a lot better. she didn't sound too interested in fighting earlier in the week, but she made the comment to my mom the other day "i've got a lot of living left to do. i'm not ready to go yet. i've got to fight this thing b/c i want to see megan and chris get married. i want to see matthew get married. i want to see my great-grandchildren." that made me feel sad but better at the same time. i want her to fight.

i'm trying to narrow down which hospital is actually the best one. i've read that johns hopkins, brigham & women's hospital, NY presbyterian university, and mayo clinic are all top rated. if anybody feels like helping me look into this i would be very grateful.

5/23/2008 8:56:43 AM

Not sure what hospital my mother-in-law went to, but they were shitty. She was diagnosed with stage 4 malignant melanoma, which obviously is a very grim and normally fatal diagnosis. She signed paperwork to get some experimental treatment because obviously that was about her only option for fighting it. They took absolutely forever to get her paperwork through even though they said it would only take a few weeks. It ended up taking 4 months and by the time they got it through, the cancer had grown tumors on her left and right bronchus. It grew so fast that it literally suffocated her within a matter of hours. I'm not saying that the experimental treatment would have worked, but it would've been nice for things with that to have gone faster. This is not to mention the fact that they refused to give her pain medication while she was in the hospital with tumors suffocating her. Whatever your family decides, make sure that the hospital has a good reputation and bedside manner (this can be extremely important in keeping everyone's spirits up). Also, everyone should obviously be prepared for the worst, but hope hope hope for the best. Good luck.

5/23/2008 5:17:26 PM

she wanted to stick with duke. her urologist recommended a specific doctor there who used to work at brigham and women's hospital (rated #1 for this kind of thing). she had an appointment there this morning at 9. mom just texted me and said there's an appointment for surgery now on june 18th.

they (at our local hospital) had said previously it was inoperable so now i guess they feel confident enough that they can remove a meaningful amount. it's operations-on-inoperable-tumors month at duke apparently. i think the goal is to take enough out to relieve pressure on the surrounding organs and especially to get the aorta back where it's supposed to be (it's bowed out or something right now).

so it's not looking so grim now thankfully.

6/3/2008 1:13:16 PM

most surgeons at local hospitals arent ballsy or experienced enough to try to resect or even just debulk these complicated tumors.

duke surgeons seem to have balls of steel

6/3/2008 1:40:14 PM

10Ni-8Co Ultra-High-Strength Steel Balls to be exact

6/3/2008 1:58:50 PM

the procedure is a radical nephrectomy. we're now researching any journal articles that would help us understand the risks fully. if anybody can get access to articles that the general public cannot, i'd really appreciate it.

6/4/2008 9:59:05 AM

Having researched a lot of renal issues, I have found that there is often two links to source to view an article or study. Science Direct typically will work, but try both links. Sometimes, you can get a study on one without paying that is subscription only on the other service.

A couple sites offer free registration.

6/4/2008 10:59:52 AM

the surgery is today at 1:45p. she went up to duke yesterday to have a kidney function test and some bloodwork done and then they admitted her for the night. she was very nervous when i talked to her last night. my mom, uncle, and grandpa are up there with her. my dad is going up today. i have to stay home to take care of my mom's puppy and grandmommy's house and plants. she has a caringbridge.com site but i'm not going to post the link here b/c there's no review process for comments and i don't trust tww. if you want the link, PM me.

6/18/2008 8:57:07 AM