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Back and looking for advice

Farriswifey
Posts: 8
Joined: Feb 2013

Well, Unfortunately I am back to ask for some advice. Last Friday after lots of tests and not feeling well my oncologist discovered a 5x3 cm mass on my hip bone that a biopsy revealed to be clear cell renal carcinoma. My nephrectomy for my stage 3 tumor was almost two years ago. I had a PET CT scan and they said it was the only spot. They told me to see an orthopedic oncologist. I needed an easy surgery followed by either Sutent or Voltrient. Now I'm waiting for my appointment with the ortho guy and it's not until the 16th. So now I wait. And I guess I want to be sure I'm doing what I should be doing. I was so stunned I didn't know what to ask and they didn't tell me much. I am hoping this is as easy as they say it is. And I'm doing the right thing. I'm just kind of wondering if I need a bone scan or what questions to ask. I don't know what I'm doing. I feel totally stunned. I keep saying I'm stunned stupid. Any advice would be greatly appreciated. Thank you. 

firedude21
Posts: 52
Joined: Sep 2014

I wish I had some advice for you but I don't at this time. I was just diagnosed with a mass on my hip bone and a mass in the lower pole of my right kidney. I have an appointment on the 11th at UCLA Medical Center when I hope to get some answers. At this time I feel fine but I do have some pain in my hip and upper leg. I am just hoping that there is something that they can do for me. Like you I feel kind of lost.  I wish you all the luck in the world.

 

firedude21 

Farriswifey
Posts: 8
Joined: Feb 2013

Hoping your appointment answers all your question and you get some peace of mind. Thank you for responding. It means a lot. It all seems mind blowing and confusing. Wishing you health and happiness:)

firedude21
Posts: 52
Joined: Sep 2014

Just curious if you are experiencing any pain in your hip or upper leg? Or any other symptoms? The pain in my hiip and upper leg is bearable but I know that it has to be treated. Take care.

 

Thank you 

Farriswifey
Posts: 8
Joined: Feb 2013

Leg pain was one of the symptoms that brought me in. My leg was numb and stiff. But since the biopsy it's been acting up. Could also just be in my head. Don't know why I had those symptoms maybe nerves are involved? I feel like I dont know anything. I'm so sorry I'm no help to you. Really hoping you get some answers and some relief:)

Positive_Mental_Attitude's picture
Positive_Mental...
Posts: 454
Joined: Jul 2014

Farriswifey and firedude21, please let us know what happens with your next appointments.  I don't have anything to offer as far as your specific problem with the hip, but I am curious about what they discover.  Good luck to both of you. firedude21, I am guessing you are firefigther, and it appears there are a few of on here.  Stay strong.

Farriswifey
Posts: 8
Joined: Feb 2013

Thank you so much. Just coming on this board helps me wrap my head around everything. I love your username. I will update. Thanks again:)

firedude21
Posts: 52
Joined: Sep 2014

Just wondering how everything went with your appointment. Hope all went well. I am going back to UCLA next Thursday to have a biopsy done on my hip. I don't know what it could be except cancer. Sometime in the future I will have to have the tumor removed from the lower pole of my right kidney. This is the only kidney I have left as I lost my left one to cancer in 1990 and part of my right in 2004. I thought after 10 years I was done with this cancer stuff but it was not to be. Please let me know what they decide to do with your hip issue. Keep the faith.

 

firedude21

todd121's picture
todd121
Posts: 1449
Joined: Dec 2012

Hi. I'm sorry you've had this come back. I'm sure the orthopedic oncologist will be a help to you and you'll know more after that appointment. Is your regular oncologist experienced with RCC?

I had a spot on my femur when my kidney tumor was found. My RCC specialist ordered a nuclear bone scan to check for other spots. I thought I'd heard that's the test to have, but, I should be up front and say I didn't go to medical school. :) I do trust my RCC oncologist, though. He's top notch. He had that nuclear bone scan done and he also had the radiologists at the City of Hope look at the original CT. According to him, radiologists that see a lot of cancer are better at telling if a spot is likely cancer or not. Not an issue for you, since you've had the biopsy. They decided my spot wasn't cancer and it's remained stable.

I'm not sure if they would give you sutent/votrient if the tumor can be resected. I thought they usually don't. Although, there may be a study you'd be eligible for. For that you should check with an RCC specialist or ask your oncologist if there are any studies that look helpful for you. I participated in one. I took everolimus for a year after my nephrectomy as part of a study.

Wishing you the best. Please update us on how you're doing.

Todd

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

All I have to add is that radiation worked well for me. I did not expect it to, but like everything else so far, I've been lucky. I think many people have been lucky too, but we don't hear from them.

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

Yes, radiation may be an option and worth getting looked at.  If this is the only Met, then I would question why Votrient..?   That said, usually a bone agent such as Xgeva or Zometa is used to help the bone heal.  So suggest you find a proper radiologist, one that also does SBRT / Cyberknife.  This is said to be better than low dose radiation and it takes a lot less treatments.  I had only a single Cyberkife treatment about a month ago..

Good Luck..

Ron

Farriswifey
Posts: 8
Joined: Feb 2013

Thank you guys so much for your replies. Firedude, I'm so sorry you're dealing with this again. And waiting is so hard. I hope you're in excellent hands. As for me and what I think I've found out I'm absolutely ecstatic. Went to the ortho my oncologist sent me to and no one had sent my images. His demeanor was defensive and dismissive and as I explained how much pain I was in he actually replied, "what you want crutches or something" I walked out. I had been waiting for this appointment for three weeks so I decided on a second opinion from Stanford. Went yesterday and I have to say that place is a well run machine. Saw a urologic oncologist and she advised that if the ortho there thought resection was possible to do that and if not we will do cyberknife. Met with radiologist oncologist and he was so helpful. He found a fracture while he was showing me my images. They ordered an MRI and a bone scan just to have a better  picture. But they disagreed with needing any treatment after. So i am feeling beyond lucky and happy. if I can walk away from this with no surgery and no meds I will be ecstatic. They seemed to think the cyberknife would ease my pain a lot quicker too. Who doesn't want to hear that? Feeling so positive. I don't see any reason to choose surgery. The recovery didn't sound fun. And I have way too many kids sporting events coming up to miss out on any for this dumb cancer that I plan on kicking to the curb ASAP. Thank you guys for everything. i really value your thoughts and opinions even if you haven't been to medical school:)

todd121's picture
todd121
Posts: 1449
Joined: Dec 2012

That's one of the weird things about this cancer. I've been more aware since having cancer how things that don't go my way can, in fact, be a blessing if I just hold out and wait (withhold judgement). Look at this! You got this crappy ortho doc, but it led you to Stanford and what looks like great advice. If he'd been half-*** ok, you might've not ended up there.

Hope a cyber-knife treatment takes care of this and you're done done.

Todd

P.S. Maybe you should send him a thank you note for being an ***? That'd sure irk him. Hahaha.

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

Cyberknife is a breeze.. I had the one treatment, took about 2 hours... they gave me two pills after and sent me home..  I drove myself both ways.  They also made sure I had plenty of pain pills, which were needed.  The treatment often caused the Cancer to get inflamed before it gives up, so the pain pills are sometimes (often..?) needed.  Oh yes, and Stanford invented Cyberknife.. should that be your treatment, they will give you a video that literaly walks you through the while process, from entering the front door to exiting out...

You are in the right hands for sure...  Stanford is a great place.. they do not second guess an area they are not sure of, just refer you to that doctor that has that expertise.  Plus they always ask about "me"..

Good Luck..!!

Ron

firedude21
Posts: 52
Joined: Sep 2014

It sounds like things are starting to look up for you. I don't think you can go wrong at Stanford. Please keep us informed on how things are going.

Wishing you nothing but the best forever -

firedude21

 

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