Bilateral RCC...updates - first surgery complete

13

Comments

  • LMCRJB13
    LMCRJB13 Member Posts: 84
    #42
    Thanks again to all!  I will

    Thanks again to all!  I will continue to keep you in the loop and look forward to coming out on the other side...offering advice, insights and support to others like you all have done for me here.  

    My abdominal discomfort remains - pretty much constant...could be RCC related?  The tumors are small so I don't think it's them pressing anywhere, but who knows?  First things first and that's getting these nasty monsters out!

    It helps that there are so many success stories here and that we're in it all together!  Best to all dealing with this awful nightmare.

  • LMCRJB13
    LMCRJB13 Member Posts: 84
    edited October 2017 #43
    Still waiting for the chest

    Still waiting for the chest CT appointment - talk about scanticipation, ugh.  The chest x-ray showed NED, but I'm worried about the CT picking up something.  Better sooner than later though, right?  Abdominal CT showed the tumors contained to each kidney with no evidence of mets around them...so, I'm remaining hopeful that there's nothing else.   

  • sandy23
    sandy23 Member Posts: 143 Member
    #44
    Chances are that the chest CT

    Chances are very, very good that the chest CT will be clear as well.  Abdominal CT scans actually go pretty high so I think it would have caught anything else or the xray would have.  We definitely learn a lot about what true "waiting" feels like in times like this, don't we?  I will never complain about waiting in the line at the bank, post office, etc. again!!

  • Rachel_Kind
    Rachel_Kind Member Posts: 4
    #45
    New diagnosis- would love any support or advice

    On August 5 2017 I was involved in an auto accident that caused extensive injuries. I received 8 weeks of chiropractic care but when I still had several painful areas I was sent for MRIs of the shoulder, ankle and lower back. After telling me all the results (torn ligaments etc would require surgical consults) he said and there’s this last thing- they see a “shadow” on your kidney. 3 days later I got an ultrasound of the kidney deemed  inconclusive. Yesterday I went for an MRI of the abdomen with and without contrast at 8am, by 2 pm my chiropractor called and said the report said I have a 5.5 cm rcc on right kidney - probable Clear Cell, and what looks like a mastitis or shunt on my left kidney (I have never had a shunt put  in). I made an appt w my PCP who I have never seen she was just chosen for my insurance card, to get a referral to an oncologist. I’m concerned that my chiro cried his eyes out when he told me- should I be worried? My PCP appt is today with Hopefully an oncologist referral.

  • Rachel_Kind
    Rachel_Kind Member Posts: 4
    #46
    LMCRJB13 said:

    Thanks again to all!  I will

    Thanks again to all!  I will continue to keep you in the loop and look forward to coming out on the other side...offering advice, insights and support to others like you all have done for me here.  

    My abdominal discomfort remains - pretty much constant...could be RCC related?  The tumors are small so I don't think it's them pressing anywhere, but who knows?  First things first and that's getting these nasty monsters out!

    It helps that there are so many success stories here and that we're in it all together!  Best to all dealing with this awful nightmare.

    Also in both of my kidney

    diagnosed this week. I have random bouts of vomiting, and Lower back discomfort. I am concerned (for both me and you) that it is in both kidneys. I joined this thread today. I have a 5.5 by 3.9 mass at the top of the right  kidney not affecting blood flow, and the radiologist noted what looks like a “shunt” on the left. He noted that it is probably a mastitis but the abdominal MRI showed bones bowls and lymph nodes clear. I am a 42 year old Female with a 10 year old girl who I will fight untill I lay down my sword to be there for.

  • LMCRJB13
    LMCRJB13 Member Posts: 84
    #47
    Hi Rachel - I am early along

    Hi Rachel - I am early along my journey with bilateral RCC.  Best thing to do is seek out the best urologic oncologist you can find...one with expertise managing RCC - potentially bilateral.  

    I complete understand the worry and feelings...I'm right there with you. You might want to move your message from just my thread and post it for all to see...there is some great advice, insights and support out there from the awesome people in this forum.

    Good luck with everything...hoping for the best possible outcome for you.  Keep us updated with your journey and I'll do the same!

  • Wehavenotimeatall
    Wehavenotimeatall Member Posts: 488 Member
    edited October 2017 #48
    RachelL

    Start your own message as LM said.  

    You wll do doubt be full of fear and anxiety so your own message will jump out more at the old timers

     

    It’s a bit redundant now but confused as this why the ultrasound was inconclusive

    Ite important you push to move as fast as you can.  if you end up with  one confirmed mass you have a very good chance of a full and fast recovery although some rough times 

     

    Two is obviously more of a a challenge but from reading some of the many stories here still very doable and it sounds like they are unsure about  the left kidney So try not to jump to the worst conclusion.  Easier said than done I understand

     

    Speedy action    

     

     I understand how you feel but that little girl will have her Mummy for a long time yet

     

    AnnIe.  Sending love and hugs

  • Rachel_Kind
    Rachel_Kind Member Posts: 4
    #49
    New to the thread

    im new to the thread and can’t tell if I’m posting to the thread or the individual. My second opinion today I was told that they interpreted the radiologists results wrong and the shunt is in the liver, not kidney. Which worries me that there are blunders happening with my care and makes me question which doctor is correct (One is a chiropractor so I’m gonna go out in a limb and say it’s him). The doctor I saw this afternoon referred me to a urologic oncologist that specializes in Kidney Surgery. I am lucky enough to live near Moffit Cancer center in Tampa FL and that my insurance considers them in network. 

     

    Im wondering if anyone else experienced headaches? 

  • Rachel_Kind
    Rachel_Kind Member Posts: 4
    #50
    How do I start a thread?

    How doni start a thread?

  • Wehavenotimeatall
    Wehavenotimeatall Member Posts: 488 Member
    edited October 2017 #51
    Oh dear

    There is a huge difference between a liver and a kidney that most people qualified or not would be able to tell the difference 

    if you go back to the main page where it lists all the difference cancers in alphabetical order 

    Select the kidney cancer and if you look about one third down the page just below the search boxes you will see

     

    ”Add  NEW Forum Topic”

     

    Annie

     

     

  • hardo718
    hardo718 Member Posts: 853 Member
    edited October 2017 #52
    LMCRJB13 said:

    Thanks again to all!  I will

    Thanks again to all!  I will continue to keep you in the loop and look forward to coming out on the other side...offering advice, insights and support to others like you all have done for me here.  

    My abdominal discomfort remains - pretty much constant...could be RCC related?  The tumors are small so I don't think it's them pressing anywhere, but who knows?  First things first and that's getting these nasty monsters out!

    It helps that there are so many success stories here and that we're in it all together!  Best to all dealing with this awful nightmare.

    Abdominal discomfort

    Could be lots of reasons.  Your body knows these little bas****s don't belong and is letting you know something is amiss.  Albeit they are small, maybe pressing on a nerve center. The emotional roller coaster....from my perspective, since it's all connected, I get nausea, discomfort etc with all the anticipation that goes with this adventure.

    Wishing you the best,

    Donna~

  • AnnissaP
    AnnissaP Member Posts: 632 Member
    #53
    Rachel_Kind said:

    How do I start a thread?

    How doni start a thread?

    Hi Rachel. Click Discussion

    Hi Rachel. Click Discussion Boards, then choose Kidney Cancer. At the very top it will say Add New Forum Topic..... Click that!!!!

  • AnnissaP
    AnnissaP Member Posts: 632 Member
    #54
    So glad you will have the

    So glad you will have the best team caring for you!!!! Makes things a lot easier. Good luck!!!!

  • LMCRJB13
    LMCRJB13 Member Posts: 84
    #55
    Thanks again to all!  Happy

    Thanks again to all!  Happy for the insights and support this site brings!  Should have the chest CT this week - optimistic that it will show nothing.  

    Surgery on 11/13 will be here before I know it...should be 50% RCC free after that.  

    Cheers to success for all!

    Ryan

  • Gtngbtr58 @aol.com
    Gtngbtr58 @aol.com Member Posts: 206 Member
    #56
    Good luck-13th is around the

    Good luck-13th is around the corner.

  • LMCRJB13
    LMCRJB13 Member Posts: 84
    edited November 2017 #57
    Chest CT now scheduled for

    Chest CT now scheduled for Friday, 11/3 ahead of my surgery on 11/13.  I am super nervous about the CT and what it could reveal even though the chest x-ray was clear.  Trying to remain calm, but the stress and anxiety are causing a heavy feeling in my chest.  Damn nerves.  Amazing how much our minds try and play tricks on us.  

  • medic1971
    medic1971 Member Posts: 225 Member
    #58
    I had two also, but...

    Welcome to the group and sorry you are here.  I had two tumors also, but there were both in my right kidney.  One on each pole.  The lower one was 2.2cm and the upper one was 0.8cm.  It's rare to have more than one tumor, but not ultra-rare.  The most important thing is that you caught this early.  I doubt to CT chest is going to show anything is the chest x-ray was clear.  At MD Anderson they did not CT my chest because my chest film was clear.  Something you may want to consider is after you are recovered is to get genetic testing done just to make sure you don't have something genetic going on.  I am heading back to Houston next week to do my genetic testing since I had two tumors.  I will post anything helpful I learn about multi-focal tumors.

     

    You have peace with your doctor and that is the best thing in the world.  You’ll get past this and live a full and long life.

    Keep us posted and ask any questions you have. 

     

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    #59
    Chest CT

    A Chest xray can only notice larger noodules like 8 mm which could be a sign of mets. A chest ct will also show smaller nodules which aer ver often bbenign and are typically followed up a year later.

     

    Icemantoo

  • LMCRJB13
    LMCRJB13 Member Posts: 84
    #60
    Thank you, Medic and Iceman -

    Thank you, Medic and Iceman - trying not to let the nerves get the best of me...sometimes easier said than done though.  I do appreciate your input, insights and guidance.  My doc did mention that he'll most likely want to proceed with genetic testing for sure.  Rare to be so young with bilateral RCC.  Wants to see the tumor pathology first.  

    Hopeful to post a NED update next week regarding my chest CT.

    Pre-op appointment was today...staff kept raving about my doc...stating that they'd send their own children and families to him.  That feels good!    

  • AnnissaP
    AnnissaP Member Posts: 632 Member
    #61
    So glad things are moving

    So glad things are moving quickly for you. It is a huge relief to have things in place. A cpl of weeks from now this will  be done and you will be on to the healing phase. Happy you found a great team. Seems as though I have too. My surgery is on Tuesday. Take care!!!

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