Looking for input from both patients and caregivers - please!

Hi,

I need answers! My husband diagnosed with RCC Feb., 2013.  Tumor was large. They removed 2 ribs and he had 53 staples from from near belly button around to near his spine. Mets to both lungs, some ribs and femur.  Developed a hernia along incision that cannot be repaired, but poses no danger (although is uncomfortable.)  Just finished 2nd cycle of 28 days of Sutent 50mg. He is doing amazing! He has been so fortunate to have very minimal side effects.  We know that can change, but so far so good.

I am the inquisitive one.  I have found the info on various cancer boards so helpful. My first comment to anyone new dealing with this is...Don't panic!!  We are so over the "death is right around the corner" phase. It is amazing how different our attitudes are just 4 months later.  I really believe educating ourselves has a lot to do with the calmer state of mind.  I just wish we had taken time to educate ourselves BEFORE making decisions early on.  I wonder if we had, would we have tried the Sutent before the surgery? My husband says he would not have been on board with a delay; I don't know.  I have read of many people that start taking Sutent immediately for the purpose of shrinking the primary tumor and THEN have the surgery. Doing so resulted in a much less invasive surgery.  On the other hand, many believe that just by removing the primary tumor, any tumors or nodules elsewhere begin to shrink. We know for a fact that in just one round of Sutent, the nodules in my husband's lungs shrank at least 50% and many disappeared completely.  (When he had the huge amount of swelling, we were fearful it was fluid.  They did a scan and it ended up being a hernia. The point is when they did the scan, they were able to compare it to a previous scan, keeping in mind that previous scan was taken prior to both beginning Sutent, as well as removal of the kidney.)  My point is we were under the care of an oncologist AFTER removal of the kidney. After the fact, we heard from two oncologists that we should have been under their care from the start.  Well, we can't go back.  

So now we are at the point of learning a little more about the mets to the bones. My husband has had 2 rounds of zometa. We know there is a risk to the remaining kidney with zometa. We know that xgeva is another option. We can't even getting a firm answer on how extensive the mets to the bones is.  From the full body scan, several areas (ribs, femur, hips, spine, neck, shoulders) light up, yet they only indicate ribs and femur.  Why only those two areas?  The only "close up" taken was of the ribs. When I questioned the oncologist, he off handedly said that it is extensive and throughout, and went on to say ribs, femur and hips, but when I questioned him further, commenting we had heard nothing about hip involvement, he back pedaled and said some areas could be arthritis. He seemed pretty annoyed when I asked how they can tell the difference between arthritic areas and mets.  My husband reads into it that the oncologist doesn't want to come right out and say exactly what he did say; that it is extensive. I contend it isn't the Oncologist's call to decide what to tell us.  I ask myself (and my husband) if this is just important to me to know and if so, does it even matter?  I guess one of my arguments in favor of knowing is that if it is just in the ribs, does the risk to his other kidney outweigh the benefit of the zometa. Is it inevitable that other areas within his bones will develop? Sorry...I am rambling!

I would really like to see an oncologist that specializes in RCC.  I have begun to wonder if maybe my husband would rather not know if the bone involvement is extensive. He says yes, but I am not really sure.  (After 25 years of marriage, I DO still sometimes have trouble pinning him down to get a definite answer!) I want to be the best support I can for him and make sure he gets the absolute best care, but I don't want to push him to know more than HE wants to know.  Having said that, it is too heavy a burden for me to make the decisions on HIS life. He and I have talked about these matters. No matter how often I reassure him that I will support whatever decisions he makes, I continue to wonder if he is going along with decisions because he thinks that is what I want or expect.  I can't believe we are the only couple that is muddling through these issues.

I know I have shared questions, thoughts and feelings, but am interested in the thoughts of both patients and caregivers. We don't get a lot of input from our physicians.  Maybe by considering some input from other patients/caregivers, we can better decide our next step (if any).  

Thank you!!