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

Strictly CT with Contrast and x-rays!

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

Texas_wedge said:

PET scan

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?

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".  

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.

a.oakley said:

thank you for responding

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.

 

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

NanoSecond said:

Just making sure

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.

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

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 said:

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

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

dhs1963 said:

Chest X-ray will not see small mets

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

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