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Am I Getting the Right Treatment?

daveyy12's picture
Posts: 2
Joined: May 2013

Really glad to find this forum.  In brief, I was diagnosed in October 2008 and underwent a partial nephrectomy.  After two years and some severe backaches, my annual CT Scan in 2011 showed that the RCC had spread to my adrenal gland and to my spine (golf ball sized tumor on my sacrum or tail bone).  Two spinal surgeons determined that the sacral tumor is inoperable and I underwent 30 sessions of radiation therapy.  The sacral tumor also has had some serious neurological consequences including loss of bowel control and most recently (January 2013) I found myself unable to urinate, and I have had suprapubic foley catheter installed.  All this time I had been taking Sutent with severe side effects.  My medical oncologist scheduled more scans early this month (May 2013) and found that presumably the RCC has spread to my lungs (numerous tumors ranging in size from 5 to 9 cm) and the tumor on my adrenal gland has grown by about 70%.  The Oncologist is now trying me out on Afinitor. 

I'm really concerned that I'm doing all that I can to treat this thing.  The Radiation and Surgical Oncologists have both said they can't do anything more.  The medical Oncologist says he will keep trying.  Even though I don't have anything specific, for some reason I don't trust this guy.  Is the Afinitor course of treatment the only strategy?  My wife thinks I'm getting the right treatment, but I'm not sure.  Can a well known hospital like Johns Hopkins, Mayo Clinic, or even the well advertised Cancer Treatment Center of America do a better job?   Regardless, it looks like I will be on treatment for the foreseeable future.    So far, I have gotten many opinions from Doctors, nurses, family members and friends on what I should be doing.  I would really like to know what those current RCC fighters think.

Thanks for reading.




NanoSecond's picture
Posts: 653
Joined: Oct 2012

You might want to discuss trying Cabozantinib (Cometriq) next with your oncologist.

It is FDA approved for treatement of Thyroid Cancer but it can be obtained off label.

Texas_wedge's picture
Posts: 2798
Joined: Nov 2011

The consensus here will doubtless be that you should get further opinion(s) from top RCC experts, at the likes of JHH, Mayo, Cleveland, MD Anderson, MSKCC, Beth Israel.  If a top expert endorses what you have been advised already, then well and good.  Do you live in Co or was that just a holiday snap?

If a further consultation yields conflicting opinions, you may want to tell us all so that we can all brainstorm the best way forward with you for more ideas.  I think you meant to say your lung mets are 5-9 mm. not cm.?

daveyy12's picture
Posts: 2
Joined: May 2013

Thanks for your response.  I will pursue another opinion, hopefully from a kidney cancer specialist.  Can you recommend one?

Actually, my pic was a holiday snap.  I live in Virginia near Washington DC, but Estes Park and CO are my favorite places to visit. 

dhs1963's picture
Posts: 513
Joined: May 2012

If there is some way you can qualify for a study at NIH, that is the best route.  I am also in the DC area (Northern VA).  I had my nephrectomy done at Fairfax Hospital, and was underwhelmed by my team.

I am now receiving care from NIH based on NIH's Familial Kidney Cancer study.

Knowing what I know today, without NIH, I would go to (in no particular order):  MD Anderson, UCLA, Mayo Clinic.

Basically, what I am reading is that your Dr is giving up on you (i.e., we have done what we can). 


Texas_wedge's picture
Posts: 2798
Joined: Nov 2011

I'm in Scotland but I've heard such universal acclaim for Hans Hammers at Johns Hopkins that I would make a bee-line there, if I were in your shoes.  Good luck.

alice124's picture
Posts: 898
Joined: Mar 2012

Sorry to have yet another member join this group, but let me piggyback on Tex's recommendation for Dr. Hammers at Johns Hopkins. He is my husband's (one putt) oncologist and a personal hero to us both. If we can help in some way, let us know.



AprilandChuck's picture
Posts: 110
Joined: Feb 2013

If for no other reason than to reassure yourself.. that you are getting the right treatment.. did your Oncologist set you up on a yearly scan after your partial or did you transition to the yearly after undering going 3 or 6 month scans...what was grade of your orig tumor.. was it clear cell... straight up or were there other features to the tumor.. Chromophobe.. or Rhabdoid...it sounds to me like you really need to find an RCC specialist to take a look.. there are so many options available today...I would just want to be sure all were being presented...if your not sure where to go.. esp since you live in the D.C. area.. you may try calling Cancer.Gov...and asking where the nearest Kidney Cancer Specialist is!! Good Luck and Hugggsss

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