Stage 4 Bone Met at 4 months Post Nephrectomy

I believe your doc was correct. They don't treat you with targetted therapy unless you have metastic disease. There is currently no therapy to prevent the possible spread of disease that is currently going undetected. Unless they saw the lesion, you would not have any treatment other than the surgery. 

Sometimes you get targetted therapy prior to surgery to shrink a very large and dangerous tumor so surgery can actually be performed. But not to prevent possiblity of mets. 

rwmiller56 said:

Thanks Jojo. Yes, I have

Thanks Jojo. Yes, I have heard that the treatments have come a long way, but it seems that they only extend life by a few years. What is the chance of a cure, or even a 15 year survival? Not trying to be negative, but just looking at the reality of the situation.

Diagnosed May 2013. Just had my 3rd Thanksgiving and looking forward to Christmas. Great new treatments coming online so your question is impossible to answer. For what its worth, I think cancer is likely to become a chronic treatable disease in the not to distant future. Wether we make that stage personally is unknowable.

As for thinking 15 years ahead, I think that would drive me crazy even if I didnt have cancer. I'm still here and I dont feel bad, thats enough to be getting along with

you checking it and looking for your intial headline/topic.  Try to remember who posted the last one and if there is a different user name, you have something added to your thread. I lists the date of the post, so you have 2 clues.

I agree on the previous comment.  No treatment or drugs are given to a patient unless there is a diagnosed, active site.  I had a massive surgery to remove the kidney, half the liver and a set of nodes-all positive, and a defective gall bladder at the first surgery.  "We got it all," the Dr. said.  Which means, they got what they could check under a frozen slide biopsy, or examine physically with their eyes.  One year later, and again 2 years later, the changes on CT's said, "I'm back!"  They were just undetectable during the first surgery.  That is called a recurrence, because they never said it was cured.

Be willing to fight a good fight.

Hugs,

donna_lee

rwmiller56 said:

Side topic. How can I get

Side topic. How can I get email notices when a post has been added to my thread? I have added the thread to my favorites, but I don't see any way to enable email alerts. Thanks. Roger

I've looked for that option before, but couldn't find it.

Hi Roger,

You are smart to go to Stanford.  It is a fantastic hospital.  Currently there is no treatment for stage 3 as I understand it and at the time of your diagnosis I believe that is where you were.  It does suck for sure but I would just close that door and think ahead.  Get yourself up to date on current treatments.  The Dr. at Stanford can guide you thru that. There is also a library at Stanford on the same floor as the clinic.  It is small but they will pull information for you and send it out to you gratis.  Don't look at the statistics on line for your disease.  As Footstomper says and my Dr. at UCSF has said we look at this as a chronic disease.  It is no piece of cake and for sure it can kill you but that may be a long time prior to that happening.  Some of the new drugs are fantastic.  There is some frustration with them because they are so new and pushed to market early because of how successful they can be. This is new territory. 

After my first surgery I was also told I was cancer free.  I think it is an illusion and Dr.s' need to be more realistic about cancer in general.  I think once you have cancer you are never truly cancer free.  Three months after my surgery I had a CT scan and the cancer was in my kidney bed. My second surgery was at UCSF.  I was still stage 3 and the only trial for my situation was at City of Hope.  I did that trial for about 9 months until the cancer went to my lungs and proceeded to really go crazy.  i had some involvement in my iliac bone also. With that I was now stage 4.  I did do another clinical trial with little successs.  I was then lucky enough to get on Opdivo prior to FDA approval on a compassion.  It did not work at first and we actullay saw increases again.  After 6 months it started to show some good results. 

There is always a threat of it returning and your job now is to be vigilent, educate yourself and ask a lot of questions.  I have been to my local Dr.s in Monterey Bay, UCSF, City of Hope and Stanford.  I would stick with the big guns for sure.  Kidney cancer is different from others and you need the best.

Good luck Roger.  You are coming to the right place.  You can do this, I have done it for 3 years and I am still feeling pretty darn good.  I do have good days and some bad.  I just do what I can and have learned to let a lot of stuff go. Take care of yourself and when you are tired, rest. 

rwmiller56 said:

I got the results of the PET

I got the results of the PET scan. The only indication of mets anywhere in the body is at the posterior ramus in the pelvic bone, which is the same result as the CT scan. Size is 1.8 x 1.3 cm. Also, the kidney bed where the nephrectomy was done looked very good, with no sign of disease. No lymph node involvement anywhere. I guess this is actually some good news, since there is only one met and it is small? Hopefully this makes it easier to treat? Can it be removed and the bone strengthened with surgery? Does this sound like a hopeful situation?

I had a bone scan done on Friday, but I don't have the results yet.

I meet with my new Dr at Stanford on Monday.

Just wondering if you heard the results yet. Clearly they see the need to biopsy it, so there might be some hope there. 

Good luck, keep us posted. 

rwmiller56 said:

No, I haven't seen the biopsy

No, I haven't seen the biopsy results yet. But there was clearly bone erosion evident on the CT scan, i.e. a semi-circular area that was eaten right through the bone. I'll know more on Monday. Thanks!

I like your avatar. My thoughts exactly.

I will be hoping for favorable biopsy results for you. Let's hope it's something else that mimics bone mets.