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Survey: Did your pre-op testing include Pet scans?

a.oakley
Posts: 32
Joined: Oct 2012

I've often read in the posts here that preoperatively patients aren't aware whether the tumor has metastisized.  They are hoping for the " got it all" postoperative declaration.  I understand we all have MRI CAT and chest X-ray, but who had a PET scan before planning surgery?  Thank you.

adman's picture
adman
Posts: 260
Joined: Jul 2012

...A few types of MRI's, MRA, Mag 3 Renal Scan, Nuclear Bone Scan, CT, XRay.

What would I have received, that I didn't already, with a PET Scan?

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

Strictly CT with Contrast and x-rays!

 

icemantoo's picture
icemantoo
Posts: 1512
Joined: Jan 2010

Neither I or Piper ever received a PET scan.

 

 

Icemantoo

dhs1963's picture
dhs1963
Posts: 373
Joined: May 2012

Before surgery, just the CT with contrast and chest x-ray. 

 

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

I've never heard of anyone having a PET scan in advance of a nephrectomy and I can't imagine any reason for having one.  I had a CT TAP scan for dx and I've been having CTs with contrast every twelve weeks since October 2011.  I've not had x-ray or MRI but have had a full nuclear bone-scan and a hybrid PET/CT.

What lay behind your question?  Do you have a problem that we might be able to help with?

DonMiller's picture
DonMiller
Posts: 95
Joined: Feb 2013

My oncologist advised that a PET scan is not generally  used and is not effective in Clear Cell Carcinoma cases.  So far I have had CT scans with and without contrast evey 4 months of the lung abdomen and pelvis.  My urologist wants to continue this schedule, but my oncologist wants to perform the scans at 6 month intervals with blood tests every three months.  My oncologist beleives that the contrast is hard on the kidney, scans equivelant to 1600 X-rays should not be taken lightly and the extra two months " dont matter that much".  

anmazon's picture
anmazon
Posts: 129
Joined: Jun 2013

Only CT, with and without contrast.  Plus one of chest without contrast, to see if it had spread (THAT one freaked me out).

Haven't gotten post-surgical scan schedule, will be doing blood work monthly.

Hope this helps.

Anne

Baaa-bs's picture
Baaa-bs
Posts: 50
Joined: Jun 2013

removing my left kidney. Since CT scan with contrast showed it had spread to my lung, the lung surgeon had me go in for a PET scan. That's how they determined RCC had spread to the lung and liver.

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

CT & Bone scans, no PET

a.oakley
Posts: 32
Joined: Oct 2012

I want to thank all of you for responding to my question.  I hoped to get even more response than I did.  I realized that I should have given some information about myself and why I asked the question, and that I should have at least answered my own question!  I'm very private and this is difficult for me. 

I am a caregiver to my husband.  He had xrays, ultrasounds, CAT scans, MRI's and PET scan prior to surgery.  The PET scan results are the reason why it was decided to not do surgery to remove his renal tumor.  Sometimes I think if he didn't have that PET scan, he would have been in your club with a nephrectomy.  We have been very upset trying to get a nephrectomy like all the rest of you here.  You wouldn't believe what we have been through, and the things that have been said to us.  I would like to add that yes, we saw RCC oncology specialists the entire time and also have been to medical centers that are top rated for RCC in the US.  All of the information here has helped us to fight.  The good news is that 14 months after initial diagnosis we found someone willing to do the nephrectomy, and my husbands health has improved. 

Adman:  I don't know the answer to your question. 

Don Miller:  With a preoperative PET scan, the oncologist did not know the pathology.  Now we know it is clear cell, and they continue to monitor my husband by having CT/PET scans every 8 to 12 weeks.

Tex:  Thank you for your offer to help.  I really was just wondering why people are not talking about PET scans preoperatively, and the fact that they don't know about whether or not they have metastasis in other areas of their body.  After our experience, I don't think I would recommend a person getting one before their nephrectomy.

I guess I've broken my silence now.  Time to write in the post "Am I The Only One"....started by someone much braver than me.  Thank you again for all your input.

 

todd121
Posts: 559
Joined: Dec 2012

It was my understanding that the CT of abdomen and pelvis and chest X-ray would catch most likely evidence of mets.

If you have mets, then I'm not clear about the decision to do surgery or not. I'm not so sure the direction is clear from there. It's not something I've dealt with. I've heard of various approaches (trying to shrink the tumors before surgery with medication, etc.) I have heard some oncologists say that reducing tumor load is good, so go ahead and do the surgery. But the decision also has to be made in light of the patient's health in general.

Best wishes,

Todd

dhs1963's picture
dhs1963
Posts: 373
Joined: May 2012

The mets have to be > 1 -1.5 cm, or so.  At least that is what my Dr's told me, regarding why my met did not show up on a chest xray

todd121
Posts: 559
Joined: Dec 2012

Neil,

Thanks.  I'm very glad my oncologist is doing CT scans of my chest/abdomen and pelvis for my followup care. However, my urological oncologist only wanted to do a chest x-ray, and the CT of abdomen and pelvis (which is what he did pre-surgery to determine staging). I asked, and was told that's the standard of care post-op, chest x-ray and CT of abdomen/pelvis every 4-6 months for 2 years, then yearly to 5 years. I'm glad I moved to a medical oncologist for my follow-ups. They are taking the possibility of mRCC very seriously and do their best to find it early. From the urological oncologist's point-of-view, he didn't seem too concerned. I think his thinking was that he had already "cured" me. What was all the fuss about? I do hope he was right about that!

Todd

NanoSecond's picture
NanoSecond
Posts: 519
Joined: Oct 2012

You do understand that PET scans rely on "the Warburg Effect" - the fact that all tumors primarily get their energy by glycolysis (fermentation) of glucose (most commonly) and/or certain amino acids.  Due to this fact tumors are forced to consume far more glucose than normal cells (because glycolysis is a very inefficient way for cells to get energy).  A standard PET scan looks for those areas of the body that are consuming abnormally high levels of glucose - they are tumors.

However, most renal cell cancers do not use glucose for their primary fuel.  Instead they mostly run on amino acids.  Therefore they generally will NOT light up a PET scan.  That is why PET scans should not be used to look for RCC.

todd121
Posts: 559
Joined: Dec 2012

This explains why I had heard it's not at all a first choice. I did have one oncologist order a PET scan when they thought I had a bone met. However, the more experienced oncologist said to forget that and have a nuclear bone scan instead. And the third oncologist (also experienced) said I didn't need either. He could tell from the CT scan that it was not a bone met (and he was correct).

Todd

todd121
Posts: 559
Joined: Dec 2012

CT with contrast of abdomen/pelvis and a chest x-ray.

Todd

LuckyDucky
Posts: 8
Joined: Jul 2013

I had x-ray, ultrasound followed by ct scan with contrast...followed by mri with contrast....

mrs_blkjak's picture
mrs_blkjak
Posts: 87
Joined: Apr 2013

My husband did have a pet scan prior to diagnosis (he is in the rare no nephrectomy group). However, his RCC presented in an unusual manner with a lot of lymph node involvement and a very small (2 cm) kidney tumor. They really thought he had lymphoma and kidney cancer was the third and least likely option based on his presentation. I don't know if they will do other pet scans or just ct scans. 

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

I have never heard of using a PET scan as the primary diagnostic tool prior to a possible nephrectomy (see Nanos post on why). Unless I completely misread your post it sounds as if they made the PET scan the determining factor?

My own experience with it was post nephrectomy due to 3 suspicious nodules in my lungs. I was told that PET scans in conjunction for RCC only was useful in roughly 30% of all cases, but that they wanted me to undergo it to "be on the safe side" and because the nodules were too smal for a reliable biopsy.

/G

donna_lee's picture
donna_lee
Posts: 399
Joined: Feb 2009

2006-Ultrasound to see if I had gallstones.  Nope! Had a masses in kidney and in liver, and in nodes.  Then the CT and bone scan for confirmation before appt with specialists. Surgery.

2007-recurrence in node, Dx'd with CT. Confirmed with biopsy. Surgery.

2008-recurrence in node. Dx'd with CT.  Impossible to biopsy due to location. Pet scan confirmed cancer. Surgery.

2013-Today. Smiley Face.

Donna

a.oakley
Posts: 32
Joined: Oct 2012

Hi.  Sorry it's taken so long to get back here.  I want to clarify and add information that was told to us by  specialists at 3 different facilities.  (I'm not a doctor, just a caregiver, but I will try to tell you my understanding re PET Scans.  I do take notes!). 

With a PET scan the information provided is not just anatomical as with MRI and Ct's, it is also functional.  It shows metabolism.  It can help differentiate RCC from benign tumors, and can help determine response to targeted therapy.  PET's combined with CT are the best tool for evaluating due to the use of FDG.  However, a PET scans role in the diagnosis of primary RCC of the kidney is limited because the FDG is primarily secreted by the kidney.  So the whole thing lights up.  The greatest benefit of PET scans are detection and monitoring of metastatic disease.  Doctors can tell the difference between a swollen lymph node and metastatic lymph nodes and a tumor thrombus from a benign clot.  CT's and MRI's are not good enough.  A PET/CT allows early prediction of response to targeted therapy, because it reflects changes in metabolic activity.

In the beginnning of my husbands treatment we had a PET done after just 6 weeks and we changed drugs.  He has a PET done now every 8 weeks.  I challenge the docs every time and they all have said the same thing to us. 

Disclaimer:  I'm not a doctor, just repeating information that was told to us by 6 different Renal Oncologists. 

 

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

You'll find a good, brief and authoritative treatment of the topic at

http://www.petscaninfo.com/zportal/portals/pat/my_pet_scan/faq

Hope your Husband is continuing to make good progress.

a.oakley
Posts: 32
Joined: Oct 2012

Thank you for the website.  I think I have visited it before.  I also use the library at the medical center and attempt to read nuclear medicine periodicals.  I think I understand a percentage of what I read. 

I still have not come to terms with the treatment that my husband received.  I keep hoping to come to an understanding of how a top notch renal cancer facility chose to leave my husbands tumor in him.  They let it grow until it was in the vena cava.  The stupid tumor board decided as a group not to operate.  They said "he will only live 4 months longer with it removed".  He felt like a guinae pig...lab rat..whatever...an experiment.  Our renal oncologist got so mad he quit.  But he referred us to another facility and another surgeon and oncology group.  He had his surgery in January.  Doing well.  And for the record, he was very active, healthy, no problems, 65 years old.  There wasn't a risk, other than Stage 4 prognosis. 

NanoSecond's picture
NanoSecond
Posts: 519
Joined: Oct 2012

I realize I have made this point earlier but nonetheless...

Most renal cell carcinomas are NOT "avid" for glucose.  That is, they do not consume high amounts of it for their metabolism.  As such, if the PET scan that your husband is undergoing every 8 weeks is using FDG as the PET radiotracer it may not "see" all or any of the mets related to RCC.  Unless, of course, he has a rare version of mRCC that happens to be avid for glucose.  Regardless, that is why it is imperative to combine the PET scan with a CT scan. But you say he is only undergoing the PET.

I don't where you found those 6 different renal oncologists but unless you are leaving out some vital information about your husbands particular form of RCC I would seek a 7th opinion about doing only PET scans.

Of course I am not a doctor either.  I just read the literature.

a.oakley
Posts: 32
Joined: Oct 2012

Sorry if I was confusing or misleading.

He had a bunch of tests to diagnose him in the beginning.  Ultrasound, CT, then MRI, then PETScan and some more xrays of chest, abdomen, hips, legs.  It was a PET/CT scan.  Then he went on targeted therapy and he has lab work every month and a PET/CT scan every 8 weeks. 

He has clear cell RCC.  It's my understanding its glycolytic and lipogenic.

Thanks for telling me that it may not see all of the mets.  This is exactly what I like and admire about you Nano.  I want to know everything...good or bad. 

6 different renal oncologists are from 3 different facilities.  2 at each place.  They keep quitting and moving up the career ladder.  I asked about the turn-over and was told it is quite common at the Mega-medical center teaching facilities.   

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

"The greatest benefit of PET scans are detection and monitoring of metastatic disease."

That one was actually new to me, but on the other hand explains why they insisted I had post-nephrectomy PET scan to determine what my lung nodules was. Where did you get that specific part of information regarding mets?

/G

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