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Bone Scan versus PET Scan

todd121
Posts: 564
Joined: Dec 2012

So I saw oncologist #2 yesterday. My CT scan prior to my nephrectomy had a questionable 1cm spot on my right femur. I had assumed it was nothing because my urologist/surgeon didn't menion it and hadn't planned to do anything special except, I suppose, have another look in 6 months.

Oncologist #1 last week thought we should check it out. He ordered a PET scan. At first he was planning to do another CT with contrast at the same time but he changed his mind when my creatnine came in at 1.8. He said something about if it turned out to be a met there's been success treating them with radiation. I hadn't even considered that I had anything outside my kidney, so I've been bummed since then. However, this fist oncologist calculated my recurrence probably at 13%, and that made me happy.

Oncologist #2 says that Oncologist #1 had a bad idea. That PET scans have a 50% false negatives on these types of tumors. Hmmm. I didn't enjoy hearing that. He said that I needed a bone scan and another CT, preferably with contrast to check this spot out. So I'm headed for a bone scan soon, but probably with a CT without contrast. He said we might be able to resect it if it's a met. I'm not sure he'd looked where it was, but it's not in a good location for surgery. It's right in the hip joint. I laughed and said, "Well, it's not in a good location for that. That might mean I'll have trouble walking." He just looked at me like, "Oh, well. You do what you have to do." and I was struck with how serious he was. I'm not sure he really means we'd do surgery on this spot at that location. Anyways, he's not surgeon, he's an internist. It is small, so maybe they could resect it.

Bothers me a bit regarding oncologist #1 decision on the PET scan. But I don't know my PET scans from my bone scans. I'm hoping these guys know this stuff.h

So I'm on pins and needles again wanting to find out about this spot on my femur. I need to know what it is before I can even consider the two clinical trials I'm looking at. If it's a met, I won't be eligible for the trials and will be looking at other scans, etc and other treatments I guess.

Maybe I'll get to the point sometime to not let my mood be determined by their numbers and their pessimism/optimism. But I'm not there at this point. His attitude really put me in a depressed and anxious state today. He also said Oncologist #1 grossly undercalculated my recurrence probability and that I'm closer to 30-40% maybe higher. He showed me the results of a study at UCLA that put it at 33%.

Anybody notice being more sensitive to alcohol or MSG or things like this after their nephrectomy? I had a little wine the other night, and it made me very dizzy. Of course it might be that I just haven't been drinking any alcohol for 2-3 months...

Todd

I am alive
Posts: 220
Joined: Jul 2012

Todd,

  I believe bone scans are better than PET scans for this. There was a recent discussion on Kidney-onc about this, and aboutwithe pros and cons of treating bone mets with radiation. You may want to look it up, or post your concerns over there, too. Someone, I think, pointed out the cons of radiatarea weight-bearing areas like the hip joint because radiation tends to weaken bones. On the other hand, if the bone met is small enough you might be able to get rid of it with targeted radiation and maybe then qualify for clinical trials. I had a small met on my vertebrae radiated with image guided radiation last year. It killed the met, which was in an early stage of growth. No recurrence so far........but now I've developed a compression fractuthen the area radiated b/c the bones did weaken. (but Ialso have a bit of osteoporosis.) so this radiation business is serious. It could have repercussions we're not aware of.  Definitely worth drilling down on. Next door at Kidney Onc I'd ask Robin about your concerns.

Good luck.

NanoSecond's picture
NanoSecond
Posts: 522
Joined: Oct 2012

Todd,

I have lesions on my sacrum (base of spine) and left femur (thigh).  I have been taking Xgeva (Denosumab) shots once a month plus Sutent (50mg/day 4wks on-1 wk off) since August.

If at all possible I would try to avoid any radiation.  Instead, either Xgeva or Zometa should be added to whatever TKI you are taking ASAP.

A nuclear bone scan is essential for investigating any bone mets.  X-rays may reveal even more resolution in a given area.  Do consult with a bone cancer specialist.

A recent bone scan followed by detailed X-rays showed "dramatic" improvement in my case.  There are no visible lesions on my sacrum anymore and all the lesions on my left femur are only showing new bone growth.

Good luck in whatever you do,

-N

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Nano,

What great and exciting news, you must be thrilled.  Your experience should help many others in similar situations, great info.

NanoSecond's picture
NanoSecond
Posts: 522
Joined: Oct 2012

Many thanks Garym.

I always enjoy reading your amusing (and other) posts. 

I have been reluctant to say much on this website - but I do participate a lot on the Kidney-ONC website (as Tex can attest).

One of the reasons is that I feel a bit out of place here.  You see I have been taking the maximum dosage of Sutent (50mg/day) since last August but have had no significant side effects from it at all. Not even slight fatigue (although my hair has turned white).

I feel the main reason that I have had such encouraging results is due to the special diet and certain supplements that I take.  I have described what I am doing in great detail on the Kidney-ONC website.  (Under the topic: "50mg Sutent with no significant side effects").  What I am doing is largely based on research described in the book: "Life Over Cancer" by Dr. Keith I. Block.

Best wishes,

-Nano

todd121
Posts: 564
Joined: Dec 2012

Glad to hear your improvement and thanks for the pointer. I'm going to be scheduled for a bone scan and ct soon to investigate this spot. I'll ask my oncologist about your advice. He's hoping they might be able to resect the spot (it's very small). I've been told by a nurse with prior bone cancer to avoid the radiation also if I can.

Todd

NanoSecond's picture
NanoSecond
Posts: 522
Joined: Oct 2012

Todd,

I forgot to add that you should make sure to get the proper dosage of either Xgeva or Zometa.  In the case of Xgeva (which I take) it should be administered by shot once a month.

I am not sure about Zometa but I believe it is given as a weekly infusion.

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