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Looking for input from both patients and caregivers - please!

MG1957
Posts: 8
Joined: May 2013

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!!

 

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

You have put many (good) questions.  This is a fine place to come but I think an even better place, in your situation, may be Smart Patients.  That's a site with lots of folks with many more years of experience in this domain than anyone here and there's a great deal more real expertise available there.  In particular, one of the key figures there, Robin Martinez, has infinite compassion, backed with extensive knowledge about RCC, born of many years of hard experience.   I strongly recommend that you join there, in addition to here, since you are plainly deeply committed to doing all you can for your Husband.

Meanwhile, I hope you start to get some helpful thoughts from all the fine people on this forum - a friendlier place is hard to find.

MG1957
Posts: 8
Joined: May 2013

Texas_wedge, thank you! NanoSecond also suggested Smart Patients and I had requested my invite but forgot to follow through. (A lot going on!)  I will re-post my questions there.  I did have a few minutes to look around and am impressed.  Again, thank you.  

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

I'm relieved (but not surprised) to see that Robin has already come up trumps with some very well-directed comments.  Also delighted to see that you've input some useful observations about mild depression and the need to avoid getting into behavioural ruts and losing the momentum of normal life.

DogRescuer's picture
DogRescuer
Posts: 50
Joined: Feb 2012

You can do this---one day at a time.  I just wanted to comment on the cancer vs arthritis verdict from the scans.  I understand that LOTS of things show up on scan--arthritis and old insuries besides tumors.  MRIs are especially notorious for lighting up anything and everything.   So try not to worry too much about identifying more mets.

I don't know where you live, but university hospitals over regular hosptitals usually have the cutting edge on treatments and trials.  My friend was diagnosed with kidney cancer and it soon went metastic to 4 other organs (including brain).  I'm happy to report that since being on Votrient for 3 mos, ALL of her exisitng tumors shrunk and no new evidence of disease.  BTW, I met her through ImermanAngels.org, which matches you with someone who has had your type of cancer.   http://www.imermanangels.org/

Keep us updated.  You're not alone in this journey!

Hugs,

Linda

 

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