concern about metastasis to rib

Jilgirl
Jilgirl Member Posts: 7

Hi this is my first post here so I`'ll give my history first. Diagnosed in June 2013 with probable rcc in left kidney 7cm and possible node involvement. Radical nephrectomy in Aug. Surgeon did not remove any nodes or adrenal gland. Tumor was contained and shrunk to 6 cm after surgery. T1bnxmx. I 've had a good recovery and have felt good . My ct scan is scheduled for Mar 17th.

My concern is I 've been having pain in my right side in back just above my waist and my left side has started to ache constantly above the incision.  This morning I discovered a visible protrusion of my left rib. It's quite large but no pain when you press on it. My husband thinks I should see the dr immediately but I m wondering if I should wait for scheduled scan? Has anyone else had a similar experience?

 

 

 

 

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Comments

  • NanoSecond
    NanoSecond Member Posts: 653
    Bone mets

    Jil.  If you suspect bone mets please discuss with your oncologist setting up a full-body nuclear scan as soon as convenient.  That is the only way to find out for sure.

    In addition, if it does happen to turn out to be bone mets, make sure you discuss starting on either Xgeva or Zometa in addition to whatever targeted therapy your oncologist recommends (assuming he suggests going in this direction).

  • foxhd
    foxhd Member Posts: 3,181 Member

    Bone mets

    Jil.  If you suspect bone mets please discuss with your oncologist setting up a full-body nuclear scan as soon as convenient.  That is the only way to find out for sure.

    In addition, if it does happen to turn out to be bone mets, make sure you discuss starting on either Xgeva or Zometa in addition to whatever targeted therapy your oncologist recommends (assuming he suggests going in this direction).

    radiation time

    Don't hessitate to have it radiated if appropriate. I've had the cyber knife on my spine and radiation to my ribs. Not a problem. I need to remind myself I had problems there. Go see your doc.

  • Srashedb
    Srashedb Member Posts: 482 Member
    foxhd said:

    radiation time

    Don't hessitate to have it radiated if appropriate. I've had the cyber knife on my spine and radiation to my ribs. Not a problem. I need to remind myself I had problems there. Go see your doc.

    Fox: I didn't know you'd had

    Fox: I didn't know you'd had cyber; great to know how well it worked! so far, it has been working for my husband's spinal met.

    Sarah

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    First of all, I am sorry you

    First of all, I am sorry you are going through this scare. I am sure your husband needs reassurance too. I wouldn't wait. Inform your doctor so he can order the proper tests.

    I have not had this, but feel for you. We'll walk this journey along side you if you want.

    I'll especially will be cheering you forward~

     

    Warmly, Jan

     

  • foxhd
    foxhd Member Posts: 3,181 Member
    Srashedb said:

    Fox: I didn't know you'd had

    Fox: I didn't know you'd had cyber; great to know how well it worked! so far, it has been working for my husband's spinal met.

    Sarah

    thoracic mets

    I had a couple thoracic mets that were intruding into the spinal canal approaching the spinal cord. Treated with the stereotactic approach. Regular radiation to the rib mets. This was sept. 2012. Yale referred me to the Lever cancer center in Waterbury ct. for this.

  • Srashedb
    Srashedb Member Posts: 482 Member
    foxhd said:

    thoracic mets

    I had a couple thoracic mets that were intruding into the spinal canal approaching the spinal cord. Treated with the stereotactic approach. Regular radiation to the rib mets. This was sept. 2012. Yale referred me to the Lever cancer center in Waterbury ct. for this.

    my husband had 5 sessions of

    my husband had 5 sessions of cyber to a T11 met and so far, it is working. 

    Sarah

  • GSRon
    GSRon Member Posts: 1,303 Member
    Jill.. welcome to our club...

    Jill.. welcome to our club... sorry you need to be here..  Hopepfully you are seeing an Oncologist that specializes in RCC.  And if so, you need to call tomorrow and get this looked at.  While your Pathology report is on the good side, your tumor at 7 cm is not that small.  And should your issue turn out to be Mets, then you will need a lot more frequent follow up.

    Good Luck..

    Ron

  • Jilgirl
    Jilgirl Member Posts: 7
    concern about bone met

    Thanks for all your comments it's good to have support.  I do not have an oncologist because urologist believed I wouldn't need one.  My pc keeps a close eye on me.  He sent me for a bone scan about 3 months ago because I had rib pain.  It did show a hot spot on left side but the xray showed nothing. Could something develop in just 3 months?  I don't want to become paranoid but this large lump is very freaky.

  • Jilgirl
    Jilgirl Member Posts: 7
    Srashedb said:

    my husband had 5 sessions of

    my husband had 5 sessions of cyber to a T11 met and so far, it is working. 

    Sarah

    T11

    Sarah what is a T11?

  • foxhd
    foxhd Member Posts: 3,181 Member
    Jilgirl said:

    T11

    Sarah what is a T11?

    thoracic vert.

    thoracic vertebrae number 11. Same answer, even if I'm not Sarah. We look the same except my whiskers are longer. Common mistake here.

  • a_oaklee
    a_oaklee Member Posts: 566 Member
    Hi Jil

    I don't think that you should wait til your scan date and the follow-up appointment to deal with this bump.  I encourage you to call your doctor and get an appointment as soon as possible.  Hope everything turns out well.

    I really hate to be the one to answer your question of "could anything happen in 3 months time?"   The answer to that question is yes.  Something could happen in 3 months.  My husband is Stage 4 at the time of diagnosis.  He has his scans done every 3 months.  So do other people participating on this site.  I am assuming that is because things can happen within a 3 month time span and the oncologists want to be on top of any changes in order to give the best care possible.

    Do not worry needlessly.  Just make an appointment.  Have it checked out in person by the doctor.  I am hoping for the very best for you.

  • foxhd
    foxhd Member Posts: 3,181 Member
    a_oaklee said:

    Hi Jil

    I don't think that you should wait til your scan date and the follow-up appointment to deal with this bump.  I encourage you to call your doctor and get an appointment as soon as possible.  Hope everything turns out well.

    I really hate to be the one to answer your question of "could anything happen in 3 months time?"   The answer to that question is yes.  Something could happen in 3 months.  My husband is Stage 4 at the time of diagnosis.  He has his scans done every 3 months.  So do other people participating on this site.  I am assuming that is because things can happen within a 3 month time span and the oncologists want to be on top of any changes in order to give the best care possible.

    Do not worry needlessly.  Just make an appointment.  Have it checked out in person by the doctor.  I am hoping for the very best for you.

    Jil, Jil, Jil

    Number1.....NEVER let your care be determined by your pc or urologist!! If you have cancer, you MUST get a renal cell oncologist. There is no exception especially if there are possible mets. This entire forum of members will agree. Your doctors are NOT qualified. This is not general health care. This is about saving your life. ....I am asking members who read this to post confirmation on this so that you realize just how important this is. OK members?

    Number2....as to "What can happen in 3 months?"..I had my tumor removed and they said they got it all. 6 months later I was told that I had over 20 mets and there was nothing they could do. Several oncologists agreed. I was terminal with 6 months to live. I tried one more time and found the doctor who saved my life.

    You may like your doctors and be afraid to hurt their feelings. They will do their best. All the way to your grave. They just will not be capable enough to take care of you properly. Please don't believe them when they say you do not need an oncologist.

    RUN.

  • Srashedb
    Srashedb Member Posts: 482 Member
    foxhd said:

    Jil, Jil, Jil

    Number1.....NEVER let your care be determined by your pc or urologist!! If you have cancer, you MUST get a renal cell oncologist. There is no exception especially if there are possible mets. This entire forum of members will agree. Your doctors are NOT qualified. This is not general health care. This is about saving your life. ....I am asking members who read this to post confirmation on this so that you realize just how important this is. OK members?

    Number2....as to "What can happen in 3 months?"..I had my tumor removed and they said they got it all. 6 months later I was told that I had over 20 mets and there was nothing they could do. Several oncologists agreed. I was terminal with 6 months to live. I tried one more time and found the doctor who saved my life.

    You may like your doctors and be afraid to hurt their feelings. They will do their best. All the way to your grave. They just will not be capable enough to take care of you properly. Please don't believe them when they say you do not need an oncologist.

    RUN.

    my husband was diagnosed with

    my husband was diagnosed with stage renal cancer; his general practitioner had x-rays of his spine which was my husband's first symptoms. An x-Ray taken on 6/29 showed nothing, an MRI on 7/1 showed 2 mets on his spine, one very close to fracturing.

    the local oncologist who had no experience with renal cancer gave him at most a year.

    Today, he has had a laminectomy, cyber radiation and a radical nephrectomy. He needs scans every 3 months because the doctors want to stay on top of anything.

    we left the local oncologist with the dire prediction after sending the MRI to the Mayo Clinic and being asked "where are the other tests?" they were astonished that the MRI was of one view only and nor hung else.

    Yes, in 3 months, the cancer can metastasize and any urologist who tells you that you need not have an oncologist and when you complain of pain asks you to wait for a bone scan in 3 months is.... Well, incompetent.

    Please follow the advice given to you by the board experts and get, not just an oncologist, but an oncologist who has extensive renal cancer experience.

    Sarah

  • sblairc
    sblairc Member Posts: 585 Member
    Our oncologist says to never wait.

    I can't stress enough about seeing an oncologist as some of the more experienced posters in this forum have said.  I loved our surgeon dearly, but I am so greatful my husband agreed with my suggestion to see an oncologist after the surgery "got rid of it all." The oncologist increased my husbands scan schedule. The oncologist also told my husband that bone mets can happen quickly and "you will know it when you feel it" because the pain does not lessen. When discussing this, he emphasised that my husband call and schedule an appointmet right away if he had any symptoms. 

     

  • GSRon
    GSRon Member Posts: 1,303 Member
    sblairc said:

    Our oncologist says to never wait.

    I can't stress enough about seeing an oncologist as some of the more experienced posters in this forum have said.  I loved our surgeon dearly, but I am so greatful my husband agreed with my suggestion to see an oncologist after the surgery "got rid of it all." The oncologist increased my husbands scan schedule. The oncologist also told my husband that bone mets can happen quickly and "you will know it when you feel it" because the pain does not lessen. When discussing this, he emphasised that my husband call and schedule an appointmet right away if he had any symptoms. 

     

    Now that I know you are not

    Now that I know you are not in the care of a proper Dr, I echo the Fox man's opinion.. big time..!  We are both going to act like aligators and snap at your heels until you get this looked at..  Keep in mind if that is a Met, it is NOT going to wait for you to get it checked out.. it will keep growing.. and possibly cause bigger issues...  Tomorrow morning, do it..!

    Ron

  • Jilgirl
    Jilgirl Member Posts: 7
    foxhd said:

    Jil, Jil, Jil

    Number1.....NEVER let your care be determined by your pc or urologist!! If you have cancer, you MUST get a renal cell oncologist. There is no exception especially if there are possible mets. This entire forum of members will agree. Your doctors are NOT qualified. This is not general health care. This is about saving your life. ....I am asking members who read this to post confirmation on this so that you realize just how important this is. OK members?

    Number2....as to "What can happen in 3 months?"..I had my tumor removed and they said they got it all. 6 months later I was told that I had over 20 mets and there was nothing they could do. Several oncologists agreed. I was terminal with 6 months to live. I tried one more time and found the doctor who saved my life.

    You may like your doctors and be afraid to hurt their feelings. They will do their best. All the way to your grave. They just will not be capable enough to take care of you properly. Please don't believe them when they say you do not need an oncologist.

    RUN.

    What test should i ask for?

    Fox thanks for the advice. It's 2 am here and I can't sleep. I don't know if it's anxiety or because of I can't get comfortable. Ive decided to call my pc in the morning and pray I can get an immediate appt.  What kind of test should I ask for?  I am scheduled for ct scan on the 17th but I could ask to move it up. Will it show bone mets? Would a mri be better? I had a bone scan and xray in Oct that was okay.

  • I am alive
    I am alive Member Posts: 315
    Jilgirl, absolutely go to an

    Jilgirl, absolutely go to an oncologist, preferably one with deep RCC experience. Do not put it off. You asked what tests to get.....every 3 months I get a CT of the abdomen, chest and pelvis, and a full body bone scan. CTs are better than MRIs at spotting RCC in soft body tissue. I know this is all scary as hell but you will begin to feel better when you get going in the right direction. Listen to that little voice in your head that questioned your pc's decision. It's your intuition and it's right on. There are lots of people on this forum - and on smartpatient.com - who have lived for years and years with metastatic kidney cancer. And live well. But the key - beyond the luck of the draw - is aligning yourself with a knowledgable oncologist. And as time goes on you may change oncologists to chase down clinical trials or newer thinking. Everything is fluid. One of the trickiest parts of all this is learning to live with uncertainty. But - and I think we can all testify to this - you do get the hang of it.  Please keep us posted on your progress. We are in your corner swinging!

  • I am alive
    I am alive Member Posts: 315

    Jilgirl, absolutely go to an

    Jilgirl, absolutely go to an oncologist, preferably one with deep RCC experience. Do not put it off. You asked what tests to get.....every 3 months I get a CT of the abdomen, chest and pelvis, and a full body bone scan. CTs are better than MRIs at spotting RCC in soft body tissue. I know this is all scary as hell but you will begin to feel better when you get going in the right direction. Listen to that little voice in your head that questioned your pc's decision. It's your intuition and it's right on. There are lots of people on this forum - and on smartpatient.com - who have lived for years and years with metastatic kidney cancer. And live well. But the key - beyond the luck of the draw - is aligning yourself with a knowledgable oncologist. And as time goes on you may change oncologists to chase down clinical trials or newer thinking. Everything is fluid. One of the trickiest parts of all this is learning to live with uncertainty. But - and I think we can all testify to this - you do get the hang of it.  Please keep us posted on your progress. We are in your corner swinging!

    Oops

    It's SmartPatients.com (I gave you singular above, not plural)

  • GSRon
    GSRon Member Posts: 1,303 Member

    Oops

    It's SmartPatients.com (I gave you singular above, not plural)

    Now Jill... don't make us get

    Now Jill... don't make us get real pushy and all that...  Remember the fear is far worse than the reality...  I just read a story on SP from a lady that is now a 30 year survivor of Kidney Cancer and Ovarian Cancer..  Yes it is rare to have more than one type of Cancer, but it does happen..  This lady is very inspirational, and has been living her life.. yes and dealing with Cancer, but living is the key word..!  The faster this is addressed the easier and usually better the result.  Holler back at us any time.. we are here for you... we all want to celebrate 30 years of more living... or more..!

    Ron

  • NanoSecond
    NanoSecond Member Posts: 653
    foxhd said:

    Jil, Jil, Jil

    Number1.....NEVER let your care be determined by your pc or urologist!! If you have cancer, you MUST get a renal cell oncologist. There is no exception especially if there are possible mets. This entire forum of members will agree. Your doctors are NOT qualified. This is not general health care. This is about saving your life. ....I am asking members who read this to post confirmation on this so that you realize just how important this is. OK members?

    Number2....as to "What can happen in 3 months?"..I had my tumor removed and they said they got it all. 6 months later I was told that I had over 20 mets and there was nothing they could do. Several oncologists agreed. I was terminal with 6 months to live. I tried one more time and found the doctor who saved my life.

    You may like your doctors and be afraid to hurt their feelings. They will do their best. All the way to your grave. They just will not be capable enough to take care of you properly. Please don't believe them when they say you do not need an oncologist.

    RUN.

    Agreed

    I am in full agreement with Fox on this.  Get thee to an experienced renal cancer oncologist ASAP.