Stage 4 Bone Met at 4 months Post Nephrectomy

rwmiller56

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

sblairc

If you are not with metastatic disease, you don't get treated

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. 

 

lobbyist0724

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.

Do you have more information

Do you have more information about your tumor, such as grade, or other features. I recalled reading a paper mentioned about a stage 4, high grade patient who is alive 28 years after diagonosis.The conclusion from the paper is that active follow up schedule is the key of long term survivor.

Footstomper

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.

Stage 4 Grade 4

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

lobbyist0724

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.

I am sure some of you have

I am sure some of you have read this before, but here is a new individualized immunotherapy that shows a pretty promising results for advanced RCC.

http://www.argostherapeutics.com/precision-immunotherapy/cancer/cancer-clinical-trials/

donna_lee

No notices are put on the site, other than

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

rhominator

rwmiller56 said:

I looked at a copy of my last

I looked at a copy of my last PET scan report that was taken about 1 month prior to my nephrectomy, and there was no indication of any bony mets. That means that this bone met has grown 1.7 cm in 6 months! That's crazy. The bone met was biopsied last Monday. I had another PET scan today, and I get a bone scan tomorrow. I am meeting with my new (not second opinion) Dr at Stanford on Monday.

I believe my previous Dr messed up in a big way by not putting me on targeted therapy meds during the 2 month wait period prior to my nephrectomy. The biopsy of the primary kidney tumor showed that it was very active, and there was even some necrosis.

PET/CT vs CT w/Contrast

Hi. I just talked to my oncologist yesterday about PET vs CT w/Contrast.  She described a PET as a functional scan, showing the active metabolism (update)--but unfortunately, bone mets don't show up well on PET scan.  I'm getting a PET every three months now.  Not ideal for bone mets, but with only one kidney, CT w/Contrast is not recommended for me anymore. 

Check out my profile. Seems we have similar cases.  Although the path we took to get here is different.  Like Footstomper, I've been cruzin' along for with this for three years now ... doing quite well and I'm not planning on slowing down anytime soon.  Keep your chin up.  :-)

Best wishes.

rhominator

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

dunno

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

CSN_Simone

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

Hi rwmiller56,

Hi rwmiller56,

There actually is a way to do this on the site. There is an orange box at the bottom right of each node that will allow you to subscribe to an RSS feed for the post. You will need to know how to use RSS feeds to utilize this feature, so if you do not, you might want to google how to use RSS feeds as this is not a feature unique to CSN.

Welcome to CSN! 

Simone

CSN Support Team

 

ktbcapitola

Stanford and UCSF Both Great!

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

sblairc said:

If you are not with metastatic disease, you don't get treated

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. 

 

Thank you. Thinking back, I

Thank you. Thinking back, I believe their thought may have been to try to shrink the primary tumor prior to nephrectomy. However, the urologist who did the surgery was confident he could remove it by surgery, which he did.

rwmiller56

ktbcapitola said:

Stanford and UCSF Both Great!

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. 

 

Thank you. My cancer was

Thank you. My cancer was staged as 1b after the nephrectomy. Thanks for the words of encouragement. I hope I can find the strength to move ahead. I'm still hung up on the "why"....

I'm going to the Stanford South Bay Cancer Center in San Jose.

rwmiller56

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.

rwmiller56

rhominator said:

PET/CT vs CT w/Contrast

Hi. I just talked to my oncologist yesterday about PET vs CT w/Contrast.  She described a PET as a functional scan, showing the active metabolism (update)--but unfortunately, bone mets don't show up well on PET scan.  I'm getting a PET every three months now.  Not ideal for bone mets, but with only one kidney, CT w/Contrast is not recommended for me anymore. 

Check out my profile. Seems we have similar cases.  Although the path we took to get here is different.  Like Footstomper, I've been cruzin' along for with this for three years now ... doing quite well and I'm not planning on slowing down anytime soon.  Keep your chin up.  :-)

Best wishes.

Thanks. Yes, similar cases,

Thanks. Yes, similar cases, except I never ever had any symptoms. The RCC was discovered as a result of my TIA mini-stroke.

RCC runs in my family, on my mom's side. My mother, 2 uncles and 2 cousins have had it. They all had nephrectomies done, and went 15+ years with no mets.

I am an idiot for not getting a CT scan or other type of kidney cancer screening performed once a year after I turned 50. I think insurance would have covered it if I had mentioned that RCC runs in my family.

Oh well. Trying to look ahead now.....

rwmiller56

ktbcapitola said:

Stanford and UCSF Both Great!

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. 

 

I read your profile. You are

I read your profile. You are doing well. Are you still able to work 3 years later?

sblairc

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.

Maybe the biopsy will be negative?

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

sblairc said:

Maybe the biopsy will be negative?

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. 

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.

sblairc

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'll keep my fingers crossed for something else

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

ktbcapitola

rwmiller56 said:

I read your profile. You are

I read your profile. You are doing well. Are you still able to work 3 years later?

I stopped working about a

I stopped working about a year ago.  I had a lot of appointments and treatments that just made it too hard to work my job any longer.  Stress is a killer for me and I knew I would not be able to put up the best fight while working.  I do go to the South Bay site when I can.  Are you able to see a urologist oncologist there?

Thanks,

Katy

rwmiller56

ktbcapitola said:

I stopped working about a

I stopped working about a year ago.  I had a lot of appointments and treatments that just made it too hard to work my job any longer.  Stress is a killer for me and I knew I would not be able to put up the best fight while working.  I do go to the South Bay site when I can.  Are you able to see a urologist oncologist there?

Thanks,

Katy

Katy,

Katy,

I have my first appointment at Stanford South Bay on Monday, 12/5, with a general oncologist. I suppose they also have bone and urology specialists there.

Yes, I'm worried about work, as well. My job is in customer applications engineering support, and is fairly high stress. My company has been great, though, with giving me the time off I have needed for the nephrectomy recovery, and also for all these medical appointments. They also have full, and free, STD and LTD coverage, which is unusual these days. I need to hang onto the job as long as possible to keep the excellent medical insurance. I think I would also find it hard to work if my treatment ever becomes very involved. Ideally, I would rather go on disability, if it could be approved, so I could keep the medical insurance.

Roger