Bilateral RCC...updates - first surgery complete

24

Comments

  • Jparra48
    Jparra48 Member Posts: 28
    edited October 2017 #22
    Jparra48 said:

    Actually yes I reached out to

    Actually yes I reached out to a few friends and then my regular urologist gave me some referrals. I “interviewed” all 3 of them before I made my final decision. Everyone had an opinion about what I should do or who I should see. I should go to a specific cancer center. I should see this doctor. I really love my doctor he is a urologic oncologis surgeon  and I will admit I didn’t get the support I may havent gotten from other cancer centers. Emotionally speaking but then I found this site and it really helped just reading everyone’s story and their strength and courage and I realized that’s really all I needed to help get me through. I read and share with my husband too. That poor guy has seriously been through the ringer with me. I tried to research as much as I could too but like you I found some really depressing 

    Oops sorry yes depressing

    Oops sorry yes depressing things! Keep your head up though it gets better!

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    edited October 2017 #23
    Well, I can already tell you

    Well, I can already tell you are a special person: have an open and generous spirit and willing to listen and learn. YESSS, WE will be here for you all the way if you choose us to be in your life. Hope you have outside support. And so glad you are already receiving such wonderful, helpful advice.

    Is this your first surgery? 

    I can honestly say, after 4 abdominal surgeries, 2 open incision, 2 laproscopic/robatic, I found it easier to recover with Lap/robatic. I also have other medical issues so I was glad my recovery and prognosis was good! Nearly 4 years, NED ( No Evidence of disease). Because my stage I tumor was only 4cm, I still had to have a nephrectomy due to the position of the tumor near the blood supply. 

    I can help you with more information regarding what to expect, how to prepare, how to best recover if you like me to. 

    But know that I appreciate how wonderful you are, so stay and we'll help you. Trust your surgeon. 

    Let us know what you need. Here to help!

    Sending you calming vibes of serenity and HOPE for the best recovery!

    Hugs, Jan

  • LMCRJB13
    LMCRJB13 Member Posts: 84
    Jparra48 said:

    Oops sorry yes depressing

    Oops sorry yes depressing things! Keep your head up though it gets better!

    Thanks so much for the

    Thanks so much for the information and insights!  I started reading your blog - I commend you for sharing your journey as it helps those of us who are just beginning ours.

    Be well!

  • LMCRJB13
    LMCRJB13 Member Posts: 84
    edited October 2017 #25
    Jan4you said:

    Well, I can already tell you

    Well, I can already tell you are a special person: have an open and generous spirit and willing to listen and learn. YESSS, WE will be here for you all the way if you choose us to be in your life. Hope you have outside support. And so glad you are already receiving such wonderful, helpful advice.

    Is this your first surgery? 

    I can honestly say, after 4 abdominal surgeries, 2 open incision, 2 laproscopic/robatic, I found it easier to recover with Lap/robatic. I also have other medical issues so I was glad my recovery and prognosis was good! Nearly 4 years, NED ( No Evidence of disease). Because my stage I tumor was only 4cm, I still had to have a nephrectomy due to the position of the tumor near the blood supply. 

    I can help you with more information regarding what to expect, how to prepare, how to best recover if you like me to. 

    But know that I appreciate how wonderful you are, so stay and we'll help you. Trust your surgeon. 

    Let us know what you need. Here to help!

    Sending you calming vibes of serenity and HOPE for the best recovery!

    Hugs, Jan

    Jan - what a wonderful

    Jan - what a wonderful message, thank you!  Your kind words are so nice.  I am a single guy - but have a lot of support from family and friends...I know that they'll help me get over this mountain.  I'm thankful for everyone that's in my corner as I begin this fight.  

    So happy that you're 4 years NED...what a great feeling that must be!  Keep being well.  

    I am still waiting on next steps and likely a couple of more opinions.  Luckily I am in an area of the country with access to great medicine/care.  Hopefully the plan starts falling into place soon...as I have said before, I just want this crap out!  I'll get there eventually with careful research and planning.  The tumors didn't grow overnight and they won't be removed that way either.

    The only other surgery that I've had was a gallbladder removal, two years ago...it was laparoscopic and the recovery was uneventful.  

    I welcome any insights and advice that you have.  Thank you, thank you, thank you!  So happy to have found you and others here.

    The journey continues...

  • NewDay
    NewDay Member Posts: 272
    Statistics

    I just want to caution those who google statistics to look at the dates the stats were pulled from.  Many are very old.  There have been 8 new drugs approved for RCC in the last 10 years, half of those in just the last 6 years.  The only statistics I put stock in are recurrence statistics by stage because drugs don't affect that and statistics for specific drugs.  There is a lot of hope now that didn't exist before.

  • Angie1496
    Angie1496 Member Posts: 154
    edited October 2017 #27
    LM,

    LM,

    Welcome to the club no one wants to be in!   Sounds like you are part of an even more exclusive branch that some of us!!  I hope you have good results from your visit to the specialist. I live in a small town so we have to travel a good bit for a research or large facility.  I was lucky to get in with a really good Urologic oncologist.  I’m almost 7 weeks post neph.  This is a great support group with a lot of wonderful people! I’m glad you found us before your surgery. I was so overwhelmed I didn’t even think about support groups until after surgery!  It’s nice to have a place to come where everyone knows what you are thinking and feeing that can offer advice on what to expect etc

     

    Angie

  • LMCRJB13
    LMCRJB13 Member Posts: 84
    NewDay said:

    Statistics

    I just want to caution those who google statistics to look at the dates the stats were pulled from.  Many are very old.  There have been 8 new drugs approved for RCC in the last 10 years, half of those in just the last 6 years.  The only statistics I put stock in are recurrence statistics by stage because drugs don't affect that and statistics for specific drugs.  There is a lot of hope now that didn't exist before.

    Thank you - I do pay

    Thank you - I do pay attention to the dates of studies, findings and statistics that I see...most are quite old, you're right.  I appreciate the word of caution!

    Lots of hope out there for sure!

  • LMCRJB13
    LMCRJB13 Member Posts: 84
    Angie1496 said:

    LM,

    LM,

    Welcome to the club no one wants to be in!   Sounds like you are part of an even more exclusive branch that some of us!!  I hope you have good results from your visit to the specialist. I live in a small town so we have to travel a good bit for a research or large facility.  I was lucky to get in with a really good Urologic oncologist.  I’m almost 7 weeks post neph.  This is a great support group with a lot of wonderful people! I’m glad you found us before your surgery. I was so overwhelmed I didn’t even think about support groups until after surgery!  It’s nice to have a place to come where everyone knows what you are thinking and feeing that can offer advice on what to expect etc

     

    Angie

    Hi Angie - thank you for

    Hi Angie - thank you for dropping by and leaving a note.  The club no one wants to be in - spot on there!  

    I am glad that I found this group as well...lots of advice, insights and support.  I'm confident that I can beat this and give back to others like all of you here.  Having bilateral RCC makes the mountain higher...but, I'll get over it.

    Much luck for your continued good post-neph recovery!

  • Angie1496
    Angie1496 Member Posts: 154
    LM...

    LM...

    With your outlook I KNOW you will do great!  I am praying for your recovery and that your surgery is scheduled very soon!

    Angie

  • LMCRJB13
    LMCRJB13 Member Posts: 84
    edited October 2017 #31
    Update - feeling some great

    Update - feeling some great relief today...a plan is beginning to fall into place.  I met this afternoon with the chair of urologic oncology at Upstate Medical University who is also a known researcher on genetic cancers.  I emailed him last evening and he got back to me immediately (himself) and got me in to see him today!  Wow, I couldn't believe that.  He completed his fellowship (6 years) working alongside kidney cancer leaders at the National Cancer Institute in MD.  He's performed hundreds of successful kidney surgeries and is current on research and methodologies.  He's right in my backyard at Upstate and has also successfully managed bilateral kidney masses in the past.  I'm feeling good.

    It looks like we'll be scheduling a partial neph on the right kidney to remove that 3cm mass first.  The mass will be sent to pathology to determine the plan moving forward for the left kidney mass depending upon the right mass presenting as genetic or environmental (staging, type etc.).  Hoping genetics are not involved.  

    The care, concern, compassion and bedside manner the doc emanated was unlike anything that I've received from any other specialist I've ever met with.  The doc spoke in layman’s terms, was very thorough, calming and answered all my questions.  He was confident and made me feel very comfortable.  You know when you just have that "feeling" about someone?  I know this doc and his team are the best for me.  I'm lucky to have found great care, quickly! 

    I'm young, we caught it early, no mets and as of now all signs point to success.  I know that there is a long road ahead, but I'm confident that all will be fine in the end.  Get those damn things out of me!

    Thanks to all for your continued guidance and support!

  • Angie1496
    Angie1496 Member Posts: 154
    Awesome news!  I also had

    Awesome news!  I also had that same feeling about my Doc. Nothing like trusting the person that is going to save your life!

  • BoondockSaint
    BoondockSaint Member Posts: 242 Member
    Sounds like things are lining

    Sounds like things are lining up to get these little demons out and sent straight back to Hell where they belong.

    Like I have said in prior posts, it takes a team to beat this mess. I can see an All-star cast is being assembled.

    Well wishes and good vibes to you.

  • APny
    APny Member Posts: 1,995 Member
    Wow, sounds like you found a

    Wow, sounds like you found a gem! I'm so impressed he got back via email right away and you got to see him today. I bet you're feeling so much more relieved. He's certainly a keeper!

  • stub1969
    stub1969 Member Posts: 966 Member
    edited October 2017 #35
    Hold on...

    Once things start to fall in place, the process moves pretty quickly.  Sounds like you are in good hands with some excellent surgeons.  

    Good luck

    Stub

  • LMCRJB13
    LMCRJB13 Member Posts: 84
    Thanks to all!

    Things will move quickly from here and that's okay.  I am keeping a journal of the process from the start as to not miss anything.  I'm very pleased with my medical team and have heard nothing but awesome, gold standard comments about my doc.  Heck, he's even Syracuse basketball coach Jim Boeheim's prostate cancer surgeon.  Again, this feels good - this feels right.  

    Chest CT has been ordered as my next step with the hopes that the chest x-ray didn't miss anything/mets.

    Surgery for right partial neph. now scheduled for 11/13/17.  

    Thanks for the continued good vibes, luck and prayers.  I have lots of hope.

  • Wehavenotimeatall
    Wehavenotimeatall Member Posts: 488 Member
    This Sends you

    Many messages of hope and love

    Have not replied to you yet as  I have no experience of your particular problem but it looks like you are in the right place with a great team who will be  make your very bumpy road as smooth as possible

     

    Wishing you the very very best of the luck as you began  this saga  and looking forward to the day  you are on the road to healing and recovery

     

    Annie

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    WOW so impressed and happy

    WOW so impressed and happy for you! A doctor who emails you and answers ALL your questions is amazing!

    Glad you trust that "feel good" connection as that is important to trust your doctor and team.

    You are on your way to get that bugger out and to see what the next step is for the Left Kidney.

    Keep us posted. We're here for you, all the way!

    Sending you HOPE and Serenity!

    Hugs, Jan

  • Jparra48
    Jparra48 Member Posts: 28
    Good for you!

    LMCR good for you! I’ll be praying for you and wishing you a speedy recover. Remember to have lots of help the first few weeks. A pillow over your Belly for when you drive  home...it’s amazing how you seem to feel every little bump in the road..and an ice pack to help you stay Comfortable. Best wishes to you! 

  • love_of_my_life
    love_of_my_life Member Posts: 77
    Praying for you!

    Been watching this thread over the past few days.  Good luck on your journey.  You are in our prayers.

  • hardo718
    hardo718 Member Posts: 853 Member
    Praying for you

    Glad there is a plan in place.  Keep us posted.

    Donna~