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Tiny 4mm lesion in kidney, yet glowed on PET scan

Melisande
Posts: 27
Joined: Aug 2019

Hi all,

I am actually visiting from the head and neck and lung cancer forums. I have been diagnosed with stage IIIb squamous cell lung cancer with occult primary (they cannot find a primary tumor in my lung). I have a total of four oncologists (two at Moffitt cancer center and two locally) concur in this diagnosis. I am scheduled to begin concurrent chemoradiation in two weeks. 

But now this tiny spot in or near my kidney is complicating my life. I first heard about it two weeks ago when a surgeon in the head and neck department at Moffitt studied my PET/CT scan herself in detail and noticed the tiny spot (this spot was not mentioned in the report made by the radiologist who originally interpreted the PET/CT scan). She said that the tiny spot corresponded to a similar tiny spot seen on a CT scan and an MRI I had done two years ago. (I had had these scans in order to image my pancreas — which looked entirely normal, thankfuly — not for imaging the kidneys but of course they show up too.) I don’t have the August 2017 CT scan report, but the November 2017 MRI described this as a 4mm non-enhancing lesion in the upper pole of the left kidney which was most likely a hemorrhagic cyst. She told me that the good news was that this tiny spot has not changed in size in 2 years. However, the bad news is that it was definitely glowing on the recent PET.

This surgeon called me back on Friday. She had heard back from the urology department and since they cannot rule out cancer and since the spot may be in or near the collecting area, they want me to have additional testing done.

What I would like to know is if I should continue getting this tiny spot worked up. If I didn’t already have a serious cancer I am dealing with I would simply go ahead and continue with the workup. But having this other cancer is seriously clouding the picture for me. 

The main issue is that I feel I have psychologicalply reached my limit when it comes to tests and procedures. Although I am still 100% asymptomatic (thankfully), I have undergone 17 different tests or procedures in the last two months (standard work up; trying to find the unknown primary; ancillary tests of pre-chemoradiation fitness). Four of these tests were performed at Moffitt which is two hours from where I live and so basically took up at least an entire day, or sometimes more when I had to stay overnight). I have also had 15 different consultations. 

I feel like two month ago I sat down at the banquet of medical testing famished for an answer. But now two months later, I have had my fill. No, I do not just just one more alluring      little test. I want to just get on with the treatment.

So, this is mainly for me, I guess. But if anyone has some wisdom here, I would love to hear it.

Here are some arguments  for the additional testing and some against.

Pro: I still don’t have a primary for my squamous cell carcinoma and this may be the primary we are looking for. This was the original argument of my head and neck surgeon: “Look we may have found your primary tumor!”

Con: It is not the primary.  Or if it were, it would be the first recorded case in medical history of *squamous cell* carcinoma of the kidney or renal pelvis, in someone with no history of kidney stones, with a stable 4mm primary (most primary tumors are large in this very aggressive cancer) and with a cluster of lymph node metastases nowhere near my kidney (squamous cell carcinomas tend to spread locally, then regionally, then finally distantly; one reason my four oncologists all agree that I have occult lung cancer is precisely because of this pattern of behavior and the fact that all my involved lymph nodes are clustered together near the right upper lobe of my lung).

Con: If I did have this rare cancer — squamous cell carcinoma of the renal pelvis — what would I do anyway? It is described as being very aggressive and having a terrible prognosis and typically no treatment is offered. If they wanted to offer treatment, what would they do? They would just have to guess anyway since there are precisely zero studies done on this. 

Pro: I probably have some other kind of kidney cancer and this should be checked out.

Con: Well, if it is a renal cell carcinoma, it is tiny and it hasn’t grown in two years. There is no evidence of any involvement outside the kidney. The next test they want me to have is a CT-urogram. What are the chances that this test will conclusively tell us I have kidney cancer? Pretty low I think. We would need a biopsy for that, but can they even biopsy a 4mm lesion? Let’s say it was positive for renal cell carcinoma, what then? The standard of care for tiny tumors is either watch and wait or the equivalent of lumpectomy in the kidney (forget the precise term). So, let’s say that I went through all this testing and they did find out it was cancer, I still wouldn’t do anything because I wouldn’t want to have surgery on my kidneys right before I start a rather brutal course of concurrent chemoradiation.

Con: I am just so utterly sick of being tested. If I get the CT-urogram, it will mean another entire day of my life I will lose (since I will be having it at Moffitt two hours from my house; no one locally is suggesting I get this and I would have to establish myself as a new patient with a local urologist if I wanted it done here). If it is negative I will have spent a day of my life for nothing. If it is inconclusive, I will undoubtedly be asked to undergo further testing at Moffitt which will eat up subsequent days of my life for no real reward as I it is pretty clear I won’t be getting treatment for this any time soon, unless it turns out to be this missing primaru, which it won’t. Also, above and beyond the psychological component, I just do not want another CT scan. If I get the CT-urogram it will be my 6th CT scan in two month!. With all the scanning and the future chenoradiation, my body is already the object of a lot of carcinogenic intervention. Wouldn’t it make sense to limit this just a little bit?

So, at this point, I have caved and at least consented to a consultation with a Moffitt oncologis which will happen in two weeks. I have however refused the CT-urogram.

Can anyonevargue against my logic and tell me why I really should get this (18th) test done, in spite of all the above “cons”?

 

 

icemantoo's picture
icemantoo
Posts: 3230
Joined: Jan 2010

I think you neef a break ftom testing. Six CT's on what is the size of 1/ 5th of a small tumor could do more harm than good. Run that by the oncologist.

 

 

 

 

 

 

icemantoo

a_oaklee
Posts: 447
Joined: Nov 2013

You sure are going through alot and Im very sorry to hear that.  If I had faith in my doctor, I would most likely proceed with what is recommended.  You certainly are aware and educated, and have met multiple doctors.  Hopefully there is one you can trust.  I dont know anything about your type of cancer, but what I would want to know is how important is it to find the primary?  And whether or not they find it, does it change your treatment plan?  

A 4mm spot is really small if we are talking about renal cancer.  It would be a wait and watch situation.  

Perhaps you could work with the major medical center, but also have local treatment or tests.  We do this.  Thankfully our local oncologist works well with the treatment plans done by the expert at the major medical center.  Its about 2 hours away on a good day...sometimes 5 hours.

My husband has some areas that have always lit up on his pet scans.  Its been since 2012 with no change.  Weve been told that it can be inflammation or healing that can show the increased activity.  But yet again Im referring to renal cancer.

I certainly understand being sick and tired of the whole mess and feeling like a guinea pig for testing.  

I sincerely hope things work out well for you in making these difficult decisions.

Manufred's picture
Manufred
Posts: 239
Joined: May 2017

Melisande,

You've had it tough and I can see this sort of thing wears you down.  Unfortunately you need to find out what is really happening as they can only effectively treat what they know is there.

Not having found your primary makes it difficult.  Have they done a biopsy on the nodule in your lung?  Surely that would tell them what type of cancer it is and where they should look for the primary.

Once they do find out what the root cause is, there might be alternative treatments to traditional Chemo.  Kidney cancer does sometimes respond to immunotherapy which is a lot easier on a person.  That worked for me.

Try to stay positive and best of luck,

Fred

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