That black cloud keeps following me

Sslee723
Sslee723 Member Posts: 54

So I posted something the other day about my concern with starting votrient and returning to work. Well work is not going to happen yet.  I saw my doctors the other day after he read my scans from hospital visit this past Sunday I also have a metastatic lesion on my liver.  So i am now stage 4,  was told to still start the votrient which I didn't recieve yesterday due to a blizzard.  This is really blowing my mind because before surgery I was told the radical nephrectomy would get rid of the cancer.  I geuss that's why it has such a bad name, it's cancer!  My husband is very upset thinks the doctor missed it when he did surgery but scans before the liver lesion and also lung nodules I think I forgot to mention we're not there.  my children want me to get more opinions, but I am literally under the care of one of the best surgeons out of mount Sinai hospital. Oncologist from mount Sinai and another oncologist from stony brook.  I don't know why I am posting , I think I just need to feel like someone knows where I'm coming from.  My family is awesome very supportive but I don't it's just hard to explain.  Feel like I'm going crazy sometimes but I geuss it just goes with the territory.  Thanks for listening

Comments

  • Steve.Adam
    Steve.Adam Member Posts: 463
    Hi Sslee

    I am listening. I don't know what it is like to have mets and I hope I never find out. But maybe I will... It is scary.

    Please keep posting whenever you feel like it. This is a great place to vent.

    Steve.

  • rhominator
    rhominator Member Posts: 233
    Hello Sslee

    I remember being there three years ago: stage IV; matastises; positive margins; the trepidation of starting Votrient.  Definitely a shock, venturing into the unknown. But nothing was ever as bad as my imagination made it out to be.

    Look at me now, physically active and working. Matter of fact I landed a job with NASA while under Votrient. My faith in God has kept me strong.

    Sieze the day. The cancer might slow you down, but dont' let it hold you back.

  • Sslee723
    Sslee723 Member Posts: 54

    Hello Sslee

    I remember being there three years ago: stage IV; matastises; positive margins; the trepidation of starting Votrient.  Definitely a shock, venturing into the unknown. But nothing was ever as bad as my imagination made it out to be.

    Look at me now, physically active and working. Matter of fact I landed a job with NASA while under Votrient. My faith in God has kept me strong.

    Sieze the day. The cancer might slow you down, but dont' let it hold you back.

    Thank you !!! I'm trying to

    Thank you !!! I'm trying to stay positive, just wanna be me.  

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    edited March 2017 #5
    Yes, its so hard on you and

    Yes, its so hard on you and your family to hear the c-word. then to be told mets is harder. But.. there is HOPE as the treatments keep improving others odds.

    As FoxHD says: I am not dying from cancer, I am living with cancer! Will it be a challenge? Of course. BUT you won't be alone as we and others will be here for you all the way, if you want us to! ok?

    And there is also SmartPatients.com which is another good place to get newest information on treatments and support. But know please, that we care, we understand!

    I personally have witnessed how several folks in my life have been told the worst only to prove them wrong. No one, not even the doctors know the course of our lives for certain!

    Hugs, to you and yours,

    Jan

  • foxhd
    foxhd Member Posts: 3,181
    edited March 2017 #6
    Don't blame anyone

    This is the nature of cancer. Be happy you know now. During surgery they clear the primary tumor and regional nodes as indicated. They wouldn't be prepared to section your liver. Good luck with the votrient. Don't tolerate unmanageable side effects. Find a tolerable dose. This finding doesn't have to worsen your life. If the votrient doesn't come until next tuesday, take it then. No big deal. Don't torture yourself fretting about this. This is the nature of living with cancer.

  • Jojo61
    Jojo61 Member Posts: 1,309 Member
    Hi Sslee...I know all of this

    Hi Sslee...I know all of this is coming at you so fast. I am glad you found this wonderful forum. Feel free to come on here anytime and vent, and get support and information. Hang in there! We are here for you!

    Hugs

    Jojo

  • Sslee723
    Sslee723 Member Posts: 54
    foxhd said:

    Don't blame anyone

    This is the nature of cancer. Be happy you know now. During surgery they clear the primary tumor and regional nodes as indicated. They wouldn't be prepared to section your liver. Good luck with the votrient. Don't tolerate unmanageable side effects. Find a tolerable dose. This finding doesn't have to worsen your life. If the votrient doesn't come until next tuesday, take it then. No big deal. Don't torture yourself fretting about this. This is the nature of living with cancer.

    I got the votrient today,

    I got the votrient today, starting tomorrow.  Thank you so much for all your kind words and knowledge.    

  • Sslee723
    Sslee723 Member Posts: 54
    Jojo61 said:

    Hi Sslee...I know all of this

    Hi Sslee...I know all of this is coming at you so fast. I am glad you found this wonderful forum. Feel free to come on here anytime and vent, and get support and information. Hang in there! We are here for you!

    Hugs

    Jojo

    Starting my votrient tomorrow

    Starting my votrient tomorrow, I'm very nervous!  So glad I found this forum, it was so helpful with everyones knowledge.  

  • Abunai
    Abunai Member Posts: 173
    Wishing you the best

    Glad to hear that you received your votrient. Looking forward to hearing your experience with it.

  • Sslee723
    Sslee723 Member Posts: 54
    Jan4you said:

    Yes, its so hard on you and

    Yes, its so hard on you and your family to hear the c-word. then to be told mets is harder. But.. there is HOPE as the treatments keep improving others odds.

    As FoxHD says: I am not dying from cancer, I am living with cancer! Will it be a challenge? Of course. BUT you won't be alone as we and others will be here for you all the way, if you want us to! ok?

    And there is also SmartPatients.com which is another good place to get newest information on treatments and support. But know please, that we care, we understand!

    I personally have witnessed how several folks in my life have been told the worst only to prove them wrong. No one, not even the doctors know the course of our lives for certain!

    Hugs, to you and yours,

    Jan

    Thank you so much Jan for

    Thank you so much Jan for your reply.  Every day is a bunch of emotions for me and today really was rough, it was day one on votrient for me .  I feel like a big cry baby but I just re-read your reply and you are awesome.  Thank you for your kind words!  Just gonna take it one day at a time. 

  • donna_lee
    donna_lee Member Posts: 1,023 Member
    What did happen to me, was

    they had seen the Mets in the liver during the ultrasound for a possible gall bladder problem; which was along with the large mass on the kidney.

    Surgery removed the R. kidney and left lobe of the liver, and positive nodes, and the defective gall bladder and bile duct.

    Why doesn't the surgeon remove the section of affected liver?; or is the thought that there may be other small but undetectable mets that the Votrient might go to work on also?

    Protocol has changed a lot since 2006.  All I wanted to do was get it out of there.  You can read the whole story under my user name page.

    Have hope, and take care of yourself as you begin this new journey.

    donna_lee

  • Another Spouse
    Another Spouse Member Posts: 4
    edited March 2017 #13
    SmartPatients.com reference - Jan4you, thank you!

    Newbie here - spouse, not patient. Wanted to thank Jan4you for mentioning SmartPatients.com -- I'll put it onto my list of resources (a Word file into which I copy-paste info). I've been coming on here every 7 days or so to bounce around the discussion boards & soak up information. Spouse has been on votrient for 2 months. One of these days I'll post a longer introduction.

    While I'm here I'll salute the kindness & mutual support I see from others. Yes, we can choose to live with cancer rather be in 100% crisis mode 24/7, but it takes time and energy to accept the new situation.

    Have a good day, everyone. I'll be up for a while before logging out.

  • tracylev
    tracylev Member Posts: 17
    edited March 2017 #14
    Kidney cancer sucks!

    Oh Sslee, so sorry about the mets! Same thing happened to me. Had a left nephrectomy and doctors said that should stop it because my scans showed no evidence of mets. 1 month after surgery I was back in the hospital for a bowel obstruction, a complication from the surgery. They did a ct scan of my abdomen and it showed mets in my lungs only a month later! I was devistated and wanted to blame the doctors for not noticing it a month earlier but it just didn't show up a month earlier. I'm a nurse and I know doctors and I know they are not perfect. I wish I could blame someone for my problems and that's just normal in a situation like this. I totally get your husband. This is still so new to you both and so much to digest. Life is just going along like normal and you feel like things are manageable and somewhat under control and then wham, you're hit by a bus. I have been dealing with this for a little over a year now so I'm not in shock anymore. It takes time to get used to this diagnosis for everyone involved. A lot of well meaning people are going to give you advice and health tips. The latest, someone told me if I take frankinsence drops it will cure my cancer. People try to get me to change doctors cause they know someone better... I know people mean well and they just want to help. What I want to say to you is just go with your gut. If you are comfortable with your doctor there is no reason to change. If something sounds alternative sounds reasonable to you, just discuss it with your doctor and do a little research. There are a lot of cancer scams out there that just really want your money. I'll stop now this is too long of a message. I'm glad you have good family support and a husband standing by your side. Best wishes,

    Tracy

  • foxhd
    foxhd Member Posts: 3,181
    It has been loosely discussed

    It has been loosely discussed before. But it is not uncommon for mets  to set up shop and somehow to be kept quiet when the mother ship is present. After nephrectomy they seem to bloom like dandelions. From stage 2 or 3 to stage 4 with multiple mets within months from nephrectomy. They had to be there all along. Most mets just don't grow that fast.  Maybe if your tumor had not been found until 6 months later, more tumors would have been found when you were diagnosed. If that might be true your prognosis would be much worse. Ride the wave you caught. There is nothing you can do to change anything.