Milestones....

I'm always interested in how Stage 4 people do, being one myself.  So, it was great that you gave notice of your anniversary.  Good going!

After you had your met 4 years ago, did the docs put you on any chemo?  If so, are you still on?

Best wishes for more happy anniversaries.

Dutch

With the comments, "You had hematuria in your UA," and "the US found a mass in your kidney and your liver,"  what followed was you have Stage IV cancer and perhaps 5-7 months to live if nothing can be done.  Lot's of swear words later, I asked, "what can be done?" In quick succession, there was a CT, a full bone scan to detect any bone mets, many calls back and forth between my Onc. and Oregon Health Sciences U. to get an appt. set up with 2 surgical specialists and an Onc. Dr.

My husband and I came out of the conference meeting with hope that a lengthy and radical surgery to remove the cancer would work.  In an 11 1/2 hour OR visit, the urologic surgeon removed the cancerous right kidney and set of nodes posterior to it, then the thoracic surgeon removed the left lobe of my liver, multiple questinable wedges from the right lobe (all neg,), a defective gall bladder and bile duct; and for good measure, pawed and looked through the rest of the organs they had on display. (For those who wonder why their guts hurt inside and out, that is why.)

Once out of recovery and onto the ward, the lead surgeon indicated "we think we got it all."  If you're new here, that is Dr. speak for "we didn't see anything else that was out-of-the-ordinary, or looked  like mets."  The follow up with the Medical Oncologist in 2006 wasn't disappointing.  But the bottom line was that I didn't meet the qualifications for any drug trial they were doing; and unless I had an active site that could be monitored, I wouldn't be given any type of drug.  Hooray, I think!

Wait a year, 2007, and the difference between a 9 mo and a 12 mo. CT showed an enlarging node.  Biopsy positive.  Surgery to remove it.  Wait another year, 2008, and the difference between a 6 mo and 12 mo CT showed an enlarging node.  Couldn't be biopsied but PET scan made it light up.  Surgery, again.

Here I am, late 2016, no radiation, no drugs.  There have been full sets of tests following finding enlarged nodes in my thyroid, call backs on mammograms, and an assortment of other health related issues that come with the seasons or a fall down steps; but I think I can honestly say there is NED.

What have I learned in 10+ years? Have Hope.  Take care of your health (weight, blood pressure, etc.).  Don't sweat the little things.  Say I love You more often. Eliminate tasks-people-meetings where you feel like you are wasting your time, and don't let them guilt you into doing more than you want to do.  Be more selfish with the time you have.  Be generous and be anonymous.  Spend more time with your family and close friends. Laugh. Take time to relax your body and your mind.

And most of all, LIVE ON!  We need people to communicate with us on this board and we want you around.

Merry Everything Wishes-Christmas, Hannuka, Kwanza, Eid and a Happy New Year.

donna_lee

dhs1963 said:

No chemo

It was a solitary met.  They cut it out.  After that, I was told that, without any disease, there would be no way of telling if the treatment was doing anything.  In addition, it is possible that any microtumor I had remaining would grow resistant to whatevery they gave me.  So, I should not get chemo until I need it/there is something they can see.

 

So far it has worked..

Thanks for the info on your chemo treatment (or lack thereof).  I've had a good run for someone at Stage 4 and I'm even getting a little greedy in that I'd love to get off of chemo.  I have one small met that can be seen on the scan.  I am starting to think about whether it'd be possible to get off chemo.  You're saying maybe "yes" if the one existing spot can be removed via surgery.  At my next visit to my oncologist, I think that I will start up that discussion.  I would like to hear his thoughts on the subject.  Thanks for sharing.

Dutch

donna  Your story is inspiring and uplifting to us who have just started the journey. Thank you to everyone who contribute in this board. Some of  us live in countries where rcc is rare and even the medical team aren't up to date with the new treatments and best way to deal with this ugly beast.  Happy holidays  

Jay

I love these stories and this attitude so much! They give hope, joy and belief in strength of human spirit and will and possibilities of modern medicine...