chromophobe

Hi Ginger, it is good that his scans are clear.  They say rotator cuff, without taking an mri to confirm this?  Did he get a whole body scan or just the pelvis and abdomen? Is that done once a year or every six months?  I would say he needs an xray or better yet an mri.  It is probably nothing. I don't see any details about size, or what grade he had but stage 1 Chromophobe sounds like it was all taken care of nicely!   Is he seeing an Oncologist?  Don't worry too much Ginger, just have him take the xray or mri and get to the bottom of this. I would say it is very unlikely that it is anything to be worried about.  But the sooner you he takes the tests the sooner he will be sure.  I don't know how they give him therapy on a whim! What are they treating? LOL  Please keep us posted, try not to worry!  Others will chime in, I am sure!

NanoSecond said:

Precaution only

I concur with Ange.  It is likely nothing to do with his RCC but it needs to be checked via MRI or a full-body nuclear bone scan inorder to rule it out.

Bone metastases can pop up anywhere but it would be far more likely to see them appear on his spine or femur first.

a guy in his 30's who had mets in his femurs and shoulder which caused him much pain. That's how they found his kidney tumor. Most importantly, he is doing well.

gingersnaps said:

chromophobe

My son called his family dr near  Pittsburgh and asked for the x-Ray. He was sent for it today. Maybe we will get good news tomorrow. He was never given an oncologist,only down to yearly scans with contrast,chest x-Ray and blood work. He does not worry but I have a hard time with this since it happened 2years ago. His path report showed clear margins and no necrosis or theo other word that starts with s that my kindle won't let me type. Is was a grade 3 but it isn't applicable with this subtype. These 2 years I have been reading here I have grown to love you guys and cry along with you. 

  

Having shoulder pain for six months is a long time.  I'm somewhat surprised that he was sent to physical therapy without first having an MRI.  I would push for an MRI.  It's probably nothing.  Your son is young and perhaps he remembers something he did that caused pain to his shoulder and that's why he is being treated the way he is.  Please let us know how he is doing.  Best wishes.  Try not to worry too much. 

Hi Gingersnaps!
I am a Stage 1 Chromophbe RCC Survivor like your son!  I agree with the others that there is not likely any correlation between the correlation and the cancer.  Today an oncologist ran a nomogram on me and I am THRILLED it revealed I have a 0 -2% chance of recurrence.  He said I probably won't have it come back at all! Here is the link:  http://nomograms.mskcc.org/ You just have to agree to the terms, then go to the link for RCC Nomograms, and enter some basic information.  It will generate a percentage of recurrence! It is not exact science, but I found GREAT comfort in knowing my percentage is almost zilch.  I hope this helps you and your son.  I am only 39 and it is rare that people in their 30's get RCC anyways, let alone Chromophobe RCC...which only 5% of people with RCC have in the country!  I think that makes us pretty special! Take care. 

gingersnaps said:

chromophobe

The last time I posted about my sons shoulder pain he had just had a clear xray. He has had anti-inflammatory drugs and shots. Only the pills helped with the pain. Dr. Is. Sending him to orthopaedic dr. On Monday/ next step mri. I am worried because this has lasted so long.    He worked out a few times a week ,don't know if this could be irritating the rotator cuff or maybe his job. He had a stage 1  chromophobe. I know nothing is for certain but do mets seem likely? His next scan in Cleveland is in May. Thank you for any input.

My husband's oncologist told him "he'd know" if he had a bone met because evidently the pain is significant. I'm sure others can speak to this.  From what I read about your son's experience, it sounds like he has a manageble level of pain that hasn't progressed to "intense" so I would say that is a good sign. Maybe they can push his CT scan appointment up? I would probably have my husband do that if I was in your position.