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Stage 4 Bone Met at 4 months Post Nephrectomy

rwmiller56's picture
rwmiller56
Posts: 40
Joined: Nov 2016

Hi, all,

I am new to this forum. This is my first post. I wish this post could be under better circumstances.

In May 2016, I had a TIA stroke (mini-stroke), at which time a 7 cm tumor was detected in my left kidney. I underwent endartarectomy surgery on my left carotid artery for the TIA. I had to wait 2 months to recover before they would perform the nephrectomy, which was done at the end of July 2016. At that time, my cancer was staged as 1B.

I had my first post-op CT scan in early Nov 2016, and they have detected a 1.7 cm mass on my pelvic bone, in the front, near the pubic area. The bone is very thin in that area. The CT scan shows significant erosion to the bone. I am going in next week for a biopsy, followed by a complete body bone scan, and also a PET scan. There was no bone met 4 months ago when I had the nephrectomy performed.

My oncologist says he is quite certain this is a stage 4 metastasis to the bone. At this point, I am shocked, numb and completely devastated to learn this news. I have gone from stage 1b to stage 4 in only 4 months. I am concerned about the rapid growth, and the short time between the nephrectomy and the metastasis.

At this point, I am strong, working every day, and have no symptoms or pain in the affected area. I'm 60 years old. I just turned 60 on Nov 10, and received this news on Nov 11. Nice birthday present :-( I am terrified of the short amount of time (statistically) that I may have left.

My oncologist mentioned targetd therapy. But, since I'm strong, I am also possibly interested in IL-2 immunotherapy, since from what I have read, it is the only treatment that offers a chance, although small, of a total cure.

I am also considering switching my treatment over to the Stanford Cancer Center here in the South SF Bay Area, since they are a "one stop shop", are world renowned, and have all the doctors available, plus a surgey center, under one roof. Right now, I am having to coordinate between a few provate doctors. Also, I will say that my oncologist rubbed me the wrong way when he took a phone call during my last visit, only seconds after telling me that I likely have stage 4 kidney cancer. He also seems very rushed, and did not spend a lot of time with me. It's a good thing that my wife was with me, as I broke down and completely lost it (was in tears) during that visit.

Thank you all in advance for your support.

Roger

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

Sorry to hear of your travails. Switching your treatment sounds like a great idea. Always take someone with you, because as I'm sure you know, once you hear the word 'Cancer" you hear nothing else.

Dont look stuff up on the internet, its old, out of date, and often totally insane. 

I was diagnosed stage 4 grade 4 in mMay 2013 and I'm still going strong and actually feeling very healthy. So dont Panic!Anyone who has done IL2 will tell you it can be tough. Having said that, they all say they would do it again at the drop of a hat

Enjoy Thanksgiving

rwmiller56's picture
rwmiller56
Posts: 40
Joined: Nov 2016

Thank you Footstomper. Yes, I bring my wife with me to all of the appointments. That is good advice. I'm glad to hear that you are doing well 3 years down the road. Is yours a bone metastasis? I have heard that a bone met is the worst type.

I'm not using the Internet for information. I bought a couple of recently published books (2016). "100 Q&A About Kidney Cancer" is a good one. I'm hoping that Stanford will be up to date with the latest treatments, and provide easy availability to clinical trials.

Thanks, and Happy Thanksgiving to you and yours!

Roger

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

Lung

APny's picture
APny
Posts: 1934
Joined: Mar 2014

So very sorry to hear this. You must be devastated. You say you had no bone mets four months ago. Did they do a bone scan back then? Because otherwise I don't think they could know for sure. I didn't have any bone scans when I was diagnosed and I'm not sure it's protocol unless indicated by pain, etc. But in any case, hope the targeted therapy works. It's a good thing you're strong and that will help you regardless of the treatment you choose. And yes, I'd switch too. Wishing you the very best.

rwmiller56's picture
rwmiller56
Posts: 40
Joined: Nov 2016

Thank you for the reply. No, they did not do a bone scan 4 months ago. This bone metastasis was discovered by CT scan. I had a CT scan back 4 months ago, and nothing was detected in the same area. But maybe the tumor was too small to be detected by CT scan at that time. That's what I'm hoping, at least. Thanks for the best wishes, and Happy Thanksgiving!

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

very painful bone mets withih 6 months of dx. Some come, some go. Many have been radiated. Radiation to my bones has worked wonders. It is almost 6 years. My first painful met was in my right iliac. (pelvis). I got to needing a cane and oxicodones just to get around my house. That met disappeared, and another dozen or so from participating in the phase 1 trial of nivolumab.

You didn't get great news but you're not dead yet. Do what is needed. You'll be closely monitored from this point forward. Hopefully you'll stay a step ahead in this game.

rwmiller56's picture
rwmiller56
Posts: 40
Joined: Nov 2016

Thanks Foxhd. You've done very well in your treatment. What does "dx" mean in your comment?

RosielouFaith
Posts: 1
Joined: Jan 2017

Diagnosis

firedude21
Posts: 52
Joined: Sep 2014

Roger - I had my right iliac bone met radiated in 2014. It has been stable since then.  Many of us here are still plugging along with numerous bone mets. UCSF is also an outstanding cancer hospital in your area.

fd21

 

 

rwmiller56's picture
rwmiller56
Posts: 40
Joined: Nov 2016

Thanks fd21. All these comments give me new hope :-)

foxhd's picture
foxhd
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Joined: Oct 2011

medical abbreviation for diagnosis. How come abbreviation is such a long word?

Footstomper's picture
Footstomper
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Well, 'short' is a fairly short word.

Steve.Adam's picture
Steve.Adam
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Joined: Oct 2016

Longer than long

rwmiller56's picture
rwmiller56
Posts: 40
Joined: Nov 2016

Thanks everyone for the comments. I know that I should be forward looking, but I'm having a really hard time understanding how my situation could have degraded so quickly, when I was given an 85% chance of total cure at time of the nephrectomy, and I was literally told that it would be a piece of cake! Did they wait too long after detection (2 months) to do the nephrectomy? Should I have been placed on targeted therapy drugs during that time? Was there a scan that was omitted? Difficult questions to answer, for sure, but it sure seems like something went very wrong in the process.

foroughsh's picture
foroughsh
Posts: 775
Joined: Oct 2014

I am so very sorry that you have to face such news one after another but as you'll see we have some wonderful supportive stage four members who are fighting with it and are here to give us their wisdomand about your question, two months wait is really long time for a tumor considered to be stage one as they usually grow .8 cm yearly.

Wishing you best luck and effective treatment

Keep us posted

Forough

rwmiller56's picture
rwmiller56
Posts: 40
Joined: Nov 2016

Agreed. They waited 2 months so that I could recover from a carotid artery surgery (I had a TIA mini-stroke). They were talking about putting me on targeted therapy during that time, but it never happened. I have to find out why.

lobbyist0724's picture
lobbyist0724
Posts: 383
Joined: Sep 2016

I am sorry to hear about the met. I am sure other knowledgeable members can give you more advice. I would only suggest that you should get a copy of your operation report and pathology report incase you are going for a second opinion. you can also understand more about what you are fighting with. Keep fighting!

Best wishes.

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

we had a discussion about rapidly going to stage 4. It seems that for some people when they have a significant primary tumor, it is like the mother ship. It grows slowly. Sometimes a lymph node or few near the tumor test positive but thats about it. But once the primary tumor is removed, mets pop up like dandelions in your yard. It is as if they were kept in check or inhibited from explosive growth. I went from a 7.5 cm tumor with a couple local lymph nodes involved to around 20ish identifiable tumors within 6 months of nephrectomy. That was back in 2011. Dig your heals in and hang on. It's a long ride.

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

I am so sorry to hear your story. Yes, the bone mets popped up very quickly. However, as Foxy indicated, every cancer story is different. But treatments have come a long way! Don't be discouraged - we are here to support you in any way possible!

Hugs

Jojo

rwmiller56's picture
rwmiller56
Posts: 40
Joined: Nov 2016

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.

lobbyist0724's picture
lobbyist0724
Posts: 383
Joined: Sep 2016

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's picture
Footstomper
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Joined: Dec 2014

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's picture
lobbyist0724
Posts: 383
Joined: Sep 2016

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/

rwmiller56's picture
rwmiller56
Posts: 40
Joined: Nov 2016

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.

rhominator's picture
rhominator
Posts: 232
Joined: Nov 2015

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.

rwmiller56's picture
rwmiller56
Posts: 40
Joined: Nov 2016

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's picture
rwmiller56
Posts: 40
Joined: Nov 2016

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

rhominator's picture
rhominator
Posts: 232
Joined: Nov 2015

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

CSN_Simone's picture
CSN_Simone
Posts: 62
Joined: Nov 2013

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

 

sblairc's picture
sblairc
Posts: 586
Joined: Feb 2014

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's picture
rwmiller56
Posts: 40
Joined: Nov 2016

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.

donna_lee's picture
donna_lee
Posts: 893
Joined: Feb 2009

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

ktbcapitola's picture
ktbcapitola
Posts: 4
Joined: Dec 2013

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's picture
rwmiller56
Posts: 40
Joined: Nov 2016

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's picture
rwmiller56
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I read your profile. You are doing well. Are you still able to work 3 years later?

ktbcapitola's picture
ktbcapitola
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Joined: Dec 2013

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's picture
rwmiller56
Posts: 40
Joined: Nov 2016

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

rwmiller56's picture
rwmiller56
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Joined: Nov 2016

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.

sblairc's picture
sblairc
Posts: 586
Joined: Feb 2014

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's picture
rwmiller56
Posts: 40
Joined: Nov 2016

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's picture
sblairc
Posts: 586
Joined: Feb 2014

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

rwmiller56's picture
rwmiller56
Posts: 40
Joined: Nov 2016

I got the results of the biopsy today. As suspected, it is confirmed to be a RCC bone met. The PET scan, as well as the bone scan, show no other mets. My new Dr at Stanford wants to start me on radiation therapy ASAP.

hardo718's picture
hardo718
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I'll keep you in my prayers.

Donna~

foxhd's picture
foxhd
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Joined: Oct 2011

has helped me immensely. I do things painfree that were impossible before. So thankful.

rhominator's picture
rhominator
Posts: 232
Joined: Nov 2015

Radiation and Xgeva worked for me. I got the use of my arm back.

rwmiller56's picture
rwmiller56
Posts: 40
Joined: Nov 2016

Thanks all for the best wishes. I think that I am finally getting to the point where I've had enough of feeling sorry for myself, along with the "why me?" attitude. These are difficult feelings to overcome, but I can see how they can get in the way of my progress. I'm ready to close that door and move on. As I said, I will be starting radiation therapy soon. Also, I am meeting next week with Dr Srinivas, the head of Urologic Oncology at Stanford, to speak about advanced treatment. In the evenings, instead of having a pity party for myself, I'm browsing the KCA website, watching the videos from the 2016 conference, and learning about the latest treatments. I've decided that I am going to fight this thing in a big way. I will not go down easily!

rwmiller56's picture
rwmiller56
Posts: 40
Joined: Nov 2016

Update: I met with the radiation Dr today, and he recommended holding off on radiation therapy. The main reason is so I am not excluded from any clinical trials which may be available at this time. The fact that the bone met is small, there are no other visible mets, and I have no pain (it's not a weight bearing bone) had bearing on his decision. I'm completely in agreement with this. If I had come in with several mets and a lot of pain, then the plan would be different. Next week I meet with the Dr to discuss the trials and immunotherapy.

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

Sounds to me like they might be going for the abscopal effect. Good luck.

rwmiller56's picture
rwmiller56
Posts: 40
Joined: Nov 2016

But I don't think it will be radiation. I think it will be immunotherapy. I'll know more next week, after my next appointment.

mrou50
Posts: 389
Joined: Mar 2013

It sounds like you have a good plan but keep an eye one the bone met mine spread quickly.  You might want to discuss with your ONC about doing xrays periodically through out the treatment in key areas where mets spread just to make sure that nothing is spreading.

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