Stage 4 Bone Met at 4 months Post Nephrectomy

rwmiller56
rwmiller56 Member Posts: 41 Member
in Kidney Cancer #1

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

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Comments

  • Footstomper
    Footstomper Member Posts: 1,237 Member
    #2
    Roger

    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

  • APny
    APny Member Posts: 1,995 Member
    edited November 2016 #3
    So very sorry to hear this.

    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
    rwmiller56 Member Posts: 41 Member
    edited November 2016 #4
    APny said:

    So very sorry to hear this.

    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.

    Thank you for the reply. No,

    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!

  • rwmiller56
    rwmiller56 Member Posts: 41 Member
    #5
    Footstomper said:

    Roger

    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

    Thank you Footstomper. Yes, I

    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
    Footstomper Member Posts: 1,237 Member
    edited November 2016 #6
    rwmiller56 said:

    Thank you Footstomper. Yes, I

    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

    Not bone

    Lung

  • foxhd
    foxhd Member Posts: 3,181 Member
    edited November 2016 #7
    I had

    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.

  • firedude21
    firedude21 Member Posts: 52
    #8
    Bone mets

    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
    rwmiller56 Member Posts: 41 Member
    #9
    foxhd said:

    I had

    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.

    Thanks Foxhd. You've done

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

  • foxhd
    foxhd Member Posts: 3,181 Member
    #10
    dx

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

  • rwmiller56
    rwmiller56 Member Posts: 41 Member
    #11
    firedude21 said:

    Bone mets

    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

     

     

    Thanks fd21. All these

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

  • Footstomper
    Footstomper Member Posts: 1,237 Member
    edited November 2016 #12
    foxhd said:

    dx

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

    Abbreviation

    Well, 'short' is a fairly short word.

  • rwmiller56
    rwmiller56 Member Posts: 41 Member
    #13
    Thanks everyone for the

    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.

  • Steve.Adam
    Steve.Adam Member Posts: 463 Member
    edited November 2016 #14
    Footstomper said:

    Abbreviation

    Well, 'short' is a fairly short word.

    But it is

    Longer than long

  • lobbyist0724
    lobbyist0724 Member Posts: 515 Member
    #15
    I am sorry to hear about the

    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
    foxhd Member Posts: 3,181 Member
    #16
    years back

    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.

  • foroughsh
    foroughsh Member Posts: 779 Member
    #17
    rwmiller56 said:

    Thanks everyone for the

    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.

    I am so very sorry that you

    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
    rwmiller56 Member Posts: 41 Member
    edited November 2016 #18
    foroughsh said:

    I am so very sorry that you

    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

    Agreed. They waited 2 months

    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.

  • Jojo61
    Jojo61 Member Posts: 1,309 Member
    #19
    I am so sorry to hear your

    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
    rwmiller56 Member Posts: 41 Member
    edited December 2016 #20
    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.

  • rwmiller56
    rwmiller56 Member Posts: 41 Member
    #21
    Jojo61 said:

    I am so sorry to hear your

    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

    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.

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