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chromophobe

gingersnaps
Posts: 22
Joined: Jul 2013

I have been reading here for 2 years now since my son was diagnosed with t1a renal cell chromophobe. All his scans have been clear,next one in May. He has had shoulder pain for 6 months and his dr. Called it rotator cuff without any tests. Two weeks in physical therapy and little change,therapist said he maybe needs an Cray. I am so scared because of some of the stuff I have read on this forum.  My son is 35 and asked me how could this have anything to do with his kidney cancer. I told him he needs the Cray. Can anyone give me any thoughts on this?  His surgery was at Cleveland clinic. I am so worried about this. Any thoughts would be appreciated.  Ginger.

angec's picture
angec
Posts: 626
Joined: Mar 2012

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's picture
NanoSecond
Posts: 551
Joined: Oct 2012

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.

foxhd's picture
foxhd
Posts: 1952
Joined: Oct 2011

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
Posts: 22
Joined: Jul 2013

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. 

  

a.oakley
Posts: 32
Joined: Oct 2012

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. 

gingersnaps
Posts: 22
Joined: Jul 2013

My son's gp sent him for the shoulder and arm x-Ray yesterday and it was normal. He didn't hear from Cleveland yet. After his surgery he started eating better,lost weight and joined the gym,maybe shoulder pain started there. Just glad he can enjoy his trip to Hawaii in December.  When he found out he had renal cell he had to flight out next day for Vegas. He still went,wanted to show his wife a good time before his surgery. God is good. 

gingersnaps
Posts: 22
Joined: Jul 2013

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.

sblairc's picture
sblairc
Posts: 144
Joined: Feb 2014

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. 

 

a_oaklee
Posts: 174
Joined: Nov 2013

The pain is different with a rotator cuff injury than bone mets.  My husband had a rotator cuff injury years ago.  It hurts, but there was times when it didn't bother him at all.  He also had some mobility problems re range of motion with his shoulder.  Time of day and positioning changed the level of pain.  If he used his arm alot the pain got worse and then would gradually subside to tolerable or almost gone.  In fact, he never had it repaired.  Years later with RCC diagnosis he has mets to bone.  The mets were in his spine and hip region.  It advanced to rib, shoulder, femur.  The pain of mets is really really bad.  Nothing makes it better except major drugs.  It doesn't change with positioning, time of day, activity level.  Nothing for my husband makes it better except the drugs.  He finally got radiation to a couple of the sites for pain control.  That helped quite a bit.  Currently his cancer is not metabolically active and the pain level has greatly reduced.  My thoughts are that this level of pain is so different than anything he has ever felt that you just know it's not anything familiar, as in muscle aches or arthritis etc..  I have to say that the pain level did start out small and progressed in severity, but it never went away while it was active. 

I hope in some way this helps you.  I'm so sorry that you and your son are on this journey.  I cannot begin to fathom what that must be like for a mother.  I pray for your continued strength and your son's good health.

vfelty's picture
vfelty
Posts: 21
Joined: Sep 2013

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. 

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