RPLND - Retropertineal Lymph Node Dissection Surgery

Tbuck1971
Tbuck1971 Member Posts: 50

I have been advised by my Dr that I need an RPLND and suggesting to have this within a month, by the end of July. I have not received the exact date, but advised within one month. I am having this done at UNC Lineberger Cancer Institute and my Dr advises he does approximately 30 of these a year and he will be utilizing robotic assisted technology. Method will be full cut, not laparoscopically as my nephrectomy was done.

I have type 2 fuhrman grade 3 Papillary Renal Cell Carcinoma in what I thought was 5 lymph nodes, but in review of my images appears to be 3-4, 5th was iffy, may be more. I am being advised will operate to remove the enlarged lymph nodes and any surrounding tissue that looks postive plus review other nodes.

I guess I am looking for advice, suggestions, thoughts on what they are going to do, the success of removal of the cancer, best guess at outcome and or recovery/surgery stories of others. Also any recovery advice/suggestions would be appreciated.

I am very nervous but they basically adivsed this is my best option and something I should get done quickly. A month seems to be a long way out if it took the entire month to have scheduled, thoughts? Also post surgery(6 weeks) I will be going on a drug therapy to help stymy the growth and or development of new cancer cells. Which drugs based off of genetic testing I am slated for at time of blood work will be determined.

Thoughts, advice?

Thx again to all and hope you all are feeling better each day!

Comments

  • Srashedb
    Srashedb Member Posts: 482 Member
    Surgery

    what I know is that, if possible, surgery is the best way to treat mets (if possible); in your case and according to the doctor, it is possible.

    surgery removes the mets and according to research, lowers or slows progression.

    if you are uncomfortable, seek a second opinion from renal cancer expert in your area but do it quickly. I think the speed here is to make sure there is no further spread.

    Sarah

  • Tbuck1971
    Tbuck1971 Member Posts: 50
    Srashedb said:

    Surgery

    what I know is that, if possible, surgery is the best way to treat mets (if possible); in your case and according to the doctor, it is possible.

    surgery removes the mets and according to research, lowers or slows progression.

    if you are uncomfortable, seek a second opinion from renal cancer expert in your area but do it quickly. I think the speed here is to make sure there is no further spread.

    Sarah

    Thank You

    Yes, I am anxious to get the surgery done, I feel every day is an opportunity to let more opportunity for spreading.  A month out seems a bit far for my comfort, I was hoping for 1 - 2 weeks tops.  I am trying to be patient, getting a second opinion, but had the second opinion arranged prior to this suggestion.  I am hopeful we can get this done quickly.

     

    Thx again!

  • cheatinlil
    cheatinlil Member Posts: 197
    Tbuck,
    My thoughts are

    Tbuck,

    My thoughts are prayers go with you.  Sorry, I'm too new to offer any advice.  I'm still learning myself!  Second opinion sounds great though!

  • donna_lee
    donna_lee Member Posts: 1,041 Member

    Tbuck,
    My thoughts are

    Tbuck,

    My thoughts are prayers go with you.  Sorry, I'm too new to offer any advice.  I'm still learning myself!  Second opinion sounds great though!

    Been There, Done That

    is not just the name of our Relay for Life Team since we are from the Cancer Survivors' Support Group; but one of my personal experiences.

    I recently addressed the issue of lymph node involvement in someone else's question.  If you can't find it (within the past week), refer to my personal About Me page by clicking on my name.  I had 2 recurrences of the original cancer, both in single nodes and each one and two years following the first surgery.

    My original Dx was Stage IV, T2N1M1, and an upgraded Fuhrman to III/IV.  Having a 4 inch incision both times is never easy, and especially when they overlaid about 1-2 inches on top of a previous surgery.  The first time was a breeze-I even helped drive home from the hospital (which was a 4.5 hr drive).  Went out to lunch the next day and went to work the day later.  No complications.  Nada.

    The second node removal was a little more delicate to get to, and from my subsequent questioning found out they'd had to bring the crash cart in for me as my heart reacted poorly to one of the meds.  It took me longer to recover and get any energy (more like 3-4 weeks).  But I did heal OK, got back to normal and am here still, 6 years after that round in 2008.

    Good luck on the upcoming surgery.

    Donna

  • Galrim
    Galrim Member Posts: 307
    Surgical resection...

    ...of metastatic rcc is always an option that should be exhausted before moving onto systemic therapies. That said, the jury is still out on the specific value of rcc lymph node resection. A lot of articles out there on that subject, this one examplifies the overall debate quite well.

    http://www.hindawi.com/journals/ijso/2011/816926/

    /G

  • Tbuck1971
    Tbuck1971 Member Posts: 50
    Galrim said:

    Surgical resection...

    ...of metastatic rcc is always an option that should be exhausted before moving onto systemic therapies. That said, the jury is still out on the specific value of rcc lymph node resection. A lot of articles out there on that subject, this one examplifies the overall debate quite well.

    http://www.hindawi.com/journals/ijso/2011/816926/

    /G

    Thank You everyone

    Thank You for the support and advice from all.  My surgery is currently set for July 18th.  I will continue to hope and pray, listen to my Dr's and try and formulate the best possible approach to beating this dreaded adversary. 

    G - I assume the debate is so intense due to the varied differences within us all and the fact that we know far too little about cancer and what may be the eventual defeat of it.  The only consistency we can count on is that we all hate it, want it out of our body and wish that we would all get well soon.  I get my second opinion on Thursday and continue to be anxious about that consultation as well as the distance I must cover between now and July 18th.  Plus what may come afterwards and the continuation of this and or additional challenges.

     

    I feel blessed to at the very least have a fighting chance and optimistic on what can be.

     

    Thx again to all!

     

    Tom

  • I am alive
    I am alive Member Posts: 315
    I had the RPLND

    Tom,

      I had an RPLND in '08 and it bought me three years before the next met appeared, so for me it was worth it. The surgery was a biggie but I healed well and on schedule. Couldn't drive for a month. Docs got me up and walking the day after surgery, in the hospital halls. It was hard and painful and I didn't go far - a lap around the ward was a HUGE accomplishment! When I got home I had to force myself to stand and walk up and down the driveway each day. But each day it got a teeny bit easier. I can barely remember the particulars.....time heals allthings (well, , a lot of things). I had a mass near the aorta which they removed along with 30 non-cancerous lymph nodes  "to buy me time."

     You'll feel better about having it done once you get clarity on the situation. Good luck, Tom.

  • cheatinlil
    cheatinlil Member Posts: 197
    Tbuck1971 said:

    Thank You everyone

    Thank You for the support and advice from all.  My surgery is currently set for July 18th.  I will continue to hope and pray, listen to my Dr's and try and formulate the best possible approach to beating this dreaded adversary. 

    G - I assume the debate is so intense due to the varied differences within us all and the fact that we know far too little about cancer and what may be the eventual defeat of it.  The only consistency we can count on is that we all hate it, want it out of our body and wish that we would all get well soon.  I get my second opinion on Thursday and continue to be anxious about that consultation as well as the distance I must cover between now and July 18th.  Plus what may come afterwards and the continuation of this and or additional challenges.

     

    I feel blessed to at the very least have a fighting chance and optimistic on what can be.

     

    Thx again to all!

     

    Tom

    Hi TOm,
    Do you have an update

    Hi TOm,

    Do you have an update for us?  How did the second opinion go?  I'm keeping you in my prayers!

  • Jojo61
    Jojo61 Member Posts: 1,309 Member

    I had the RPLND

    Tom,

      I had an RPLND in '08 and it bought me three years before the next met appeared, so for me it was worth it. The surgery was a biggie but I healed well and on schedule. Couldn't drive for a month. Docs got me up and walking the day after surgery, in the hospital halls. It was hard and painful and I didn't go far - a lap around the ward was a HUGE accomplishment! When I got home I had to force myself to stand and walk up and down the driveway each day. But each day it got a teeny bit easier. I can barely remember the particulars.....time heals allthings (well, , a lot of things). I had a mass near the aorta which they removed along with 30 non-cancerous lymph nodes  "to buy me time."

     You'll feel better about having it done once you get clarity on the situation. Good luck, Tom.

    Hey Tom,
    I am thinking about

    Hey Tom,

    I am thinking about you and wishing you a successful surgery with speedy recovery! Keep us posted!

    Hugs,

    Jojo

  • Tbuck1971
    Tbuck1971 Member Posts: 50
    Jojo61 said:

    Hey Tom,
    I am thinking about

    Hey Tom,

    I am thinking about you and wishing you a successful surgery with speedy recovery! Keep us posted!

    Hugs,

    Jojo

    Thank You again to each of you!

    My second opinion was basically a duplication from the first suggested treatment plan.  My Dr. at Dana Farber in Boston advised that they suggest surgical removal of the lymph nodes, then review in 6 weeks to determine where we stand, new growth, treatment, etc.  I was pleased to hear that the medical teams at two different cancer centers were both on the same page.  At the end of my visit in Boston I advised my Doc I was working with folks at UNC Chapel Hill and that my surgery is planned for the 18th of July.  I told him who I was working with at UNC and he called him on the spot and spoke to him while I was in the room.  It was comforting to hear the Doctor tell me that he agreed.  They did have a differing opinion on which drug treatment might work the best with my situation if/when the cancer may return.  I guess I will have to cross that bridge when and if I come to it, fingers crossed and prayers welcomed!

     

    I was also told by both to get genetic testing done ASAP!  My genetic counselor at UNC could not find a direct link between what I have and my family tree (no previous link to kidney cancer, rcc HLPRCC, etc.), so I was referred to a panel screening which tests for 25 different cancer related genes.  I was advised the genes do not cause cancer they just cause the body to not fight cancer mutations which can lead to cancer growth, etc.  I am not a rocket scientist, nor a genetics professional but that is what I understood from the counselor.  It will take 4 weeks to get my report and at that time may have a better idea of how to treat me if links are connected to what I have. 

     

    So on the 18th I go to UNC for the RPLND, I was able to watch a video on this, robotic assisted, which is what they will use on me.  The video was on Youtube, wow, I wouldn't suggest doing that!  I am kind of freaked out.  My wife is interested in watching the video, I advised her not to.  So off to the beach on Saturday, back to work on Monday through Thursday, then the big day next Friday.  Again, prayers are very much welcomed!

     

    God bless you all and thank you for being supportive and handing out the knowledge you all have!  I am so terribly sorry that we are all in this fight, but very much appreciate the time, energy and paricipation in these conversations that you all make!  Thank You!

     

    Take care!


    Tom

  • foxhd
    foxhd Member Posts: 3,181 Member
    Tbuck1971 said:

    Thank You again to each of you!

    My second opinion was basically a duplication from the first suggested treatment plan.  My Dr. at Dana Farber in Boston advised that they suggest surgical removal of the lymph nodes, then review in 6 weeks to determine where we stand, new growth, treatment, etc.  I was pleased to hear that the medical teams at two different cancer centers were both on the same page.  At the end of my visit in Boston I advised my Doc I was working with folks at UNC Chapel Hill and that my surgery is planned for the 18th of July.  I told him who I was working with at UNC and he called him on the spot and spoke to him while I was in the room.  It was comforting to hear the Doctor tell me that he agreed.  They did have a differing opinion on which drug treatment might work the best with my situation if/when the cancer may return.  I guess I will have to cross that bridge when and if I come to it, fingers crossed and prayers welcomed!

     

    I was also told by both to get genetic testing done ASAP!  My genetic counselor at UNC could not find a direct link between what I have and my family tree (no previous link to kidney cancer, rcc HLPRCC, etc.), so I was referred to a panel screening which tests for 25 different cancer related genes.  I was advised the genes do not cause cancer they just cause the body to not fight cancer mutations which can lead to cancer growth, etc.  I am not a rocket scientist, nor a genetics professional but that is what I understood from the counselor.  It will take 4 weeks to get my report and at that time may have a better idea of how to treat me if links are connected to what I have. 

     

    So on the 18th I go to UNC for the RPLND, I was able to watch a video on this, robotic assisted, which is what they will use on me.  The video was on Youtube, wow, I wouldn't suggest doing that!  I am kind of freaked out.  My wife is interested in watching the video, I advised her not to.  So off to the beach on Saturday, back to work on Monday through Thursday, then the big day next Friday.  Again, prayers are very much welcomed!

     

    God bless you all and thank you for being supportive and handing out the knowledge you all have!  I am so terribly sorry that we are all in this fight, but very much appreciate the time, energy and paricipation in these conversations that you all make!  Thank You!

     

    Take care!


    Tom

    Go get'em

    Go get'em Tom. Your targets are nicely aligned.

  • Tbuck1971
    Tbuck1971 Member Posts: 50
    foxhd said:

    Go get'em

    Go get'em Tom. Your targets are nicely aligned.

    Update

    So sorry since my last update, I have been in recovery and not much following the CSN site. 

     

    My surgery was supposed to be 3-5 hours and it turned out to be 7.5 hours, 37 staples and 10 days in the hospital (was supposed to be out by day 5).

     

    Surgery was longer due to a mass extremely close to the Vena Cava.  Took 1.5 hours just to clear this group of/lymph nodes out. I lost a liter of blood and woke up in the operating room, I guess because the surgery went longer than expected??  First thing I heard was "he needs a blood transfusion".  I was in panic mode right out of the box.  However Dr said eveything was where it needed to be, every day I got better and better, but was so incredibly weak. I pulled out two IV's tossing and turning in the bed, got two shots every day in back of my right and or left arm.  Had blood drawn every 12 hours and had one vein in left hand so damaged that my pinky finger and ring finger on left hand is still partially numb but getting better, assume they got a nerve.   Total 11 lymph nodes removed 3 enlarged but 5 (including the three) with signs of cancer.  Dr claimed he picked me clean, no more tissue on right side of body and man I feel it.  My gut is like I boxed with Tyson and my stomach took all the beating.  One month yesterday was my surgery date July 18, I still cannot stand erect as I feel like I am tearing myself apart.  I try to sleep on my stomach to stretch myself out, but no good!  Good news is day 4 in hospital they pulled me from the pain meds, I was done with them, asked to get them away I could make it without them.  Good choice I assume I have not been in any pain since then that requires the heavy stuff. 

    The next day, day 5 I was off pain meds, off drips, not hooked to anything, they asked me to eat and that is when all heck broke loose.  I began having projectile vomit and couldn't eat anything.  My belly was distended, after a ct scan they found I had way too much fluid in my abdomen.  A quick procedure to insert a drain tube and 4 liters later I felt like a new man, but for the next 4 days I couldn't eat without getting violently sick.  Day 9 Dr's walk in and tell me if I do not eat tomorrow I am getting tube down my nose for food, I was back on fluids (IV) again so that was ok, but they were really concerned about my not eating.  I lost 28 pounds in 10 days.  Day 9 I woke up demanded food (mostly sweets danish, sweets etc. which they found odd).  I killed them, and asked for more and more food.  By middle of the day my bowels were back going again.  That seemed to be the issue, the bowels were exposed to air too long and basically shut down.  Day 10 they pulled my 37 staples and they sent me packing. 

    Day 5-9 I didnt sleep.  Watched Velocity TV for like 96 straight hours, it was AWESOME!  But I would have preferred to sleep.  The minute they came in and told me I was going to go home that my bowels were working good and I am now eating well, I almost passed out.  I was operating on adrenaline and seriously dropped back and almost past out.  I slept all the way home 2 hour drive, then slept for 36 of the next 48 hours, again with Velocity TV on!

    Back to work on 8-12, follow up appoint on 8-11 and after discussion with my Dr he advised if I wanted to try work I could. I have been so incredibly tired, want to sleep all day, or at least 4-5 naps a day for 15 mins to 1 hour, but now I take nap as soon as I get home.  Wake up in time to go to sleep.  Weekends still taking many naps Sat and Sun.  I feel that I am getting stronger each day, but my digestion is still crazy and not always comfortable, but managable. 

     

    What next - I have follow up appointments with Oncologist coming up soon and will need to follow a close regiment of CT scans and watching, drug therapies, etc as directed by Oncologist, additional surgeries if necessary.  I am optimistic but realistic.  My time away from work, recovering, etc has made one thing perfectly clear, I need a mid 1960's british convertible and many, many sunny days with the top down driving through central/western VA!

     

    Thx and hope each of you find today better than yesterday but not as nice as tomorrow!

     

    Take care!

    Tom B.

  • todd121
    todd121 Member Posts: 1,448 Member
    Tbuck1971 said:

    Update

    So sorry since my last update, I have been in recovery and not much following the CSN site. 

     

    My surgery was supposed to be 3-5 hours and it turned out to be 7.5 hours, 37 staples and 10 days in the hospital (was supposed to be out by day 5).

     

    Surgery was longer due to a mass extremely close to the Vena Cava.  Took 1.5 hours just to clear this group of/lymph nodes out. I lost a liter of blood and woke up in the operating room, I guess because the surgery went longer than expected??  First thing I heard was "he needs a blood transfusion".  I was in panic mode right out of the box.  However Dr said eveything was where it needed to be, every day I got better and better, but was so incredibly weak. I pulled out two IV's tossing and turning in the bed, got two shots every day in back of my right and or left arm.  Had blood drawn every 12 hours and had one vein in left hand so damaged that my pinky finger and ring finger on left hand is still partially numb but getting better, assume they got a nerve.   Total 11 lymph nodes removed 3 enlarged but 5 (including the three) with signs of cancer.  Dr claimed he picked me clean, no more tissue on right side of body and man I feel it.  My gut is like I boxed with Tyson and my stomach took all the beating.  One month yesterday was my surgery date July 18, I still cannot stand erect as I feel like I am tearing myself apart.  I try to sleep on my stomach to stretch myself out, but no good!  Good news is day 4 in hospital they pulled me from the pain meds, I was done with them, asked to get them away I could make it without them.  Good choice I assume I have not been in any pain since then that requires the heavy stuff. 

    The next day, day 5 I was off pain meds, off drips, not hooked to anything, they asked me to eat and that is when all heck broke loose.  I began having projectile vomit and couldn't eat anything.  My belly was distended, after a ct scan they found I had way too much fluid in my abdomen.  A quick procedure to insert a drain tube and 4 liters later I felt like a new man, but for the next 4 days I couldn't eat without getting violently sick.  Day 9 Dr's walk in and tell me if I do not eat tomorrow I am getting tube down my nose for food, I was back on fluids (IV) again so that was ok, but they were really concerned about my not eating.  I lost 28 pounds in 10 days.  Day 9 I woke up demanded food (mostly sweets danish, sweets etc. which they found odd).  I killed them, and asked for more and more food.  By middle of the day my bowels were back going again.  That seemed to be the issue, the bowels were exposed to air too long and basically shut down.  Day 10 they pulled my 37 staples and they sent me packing. 

    Day 5-9 I didnt sleep.  Watched Velocity TV for like 96 straight hours, it was AWESOME!  But I would have preferred to sleep.  The minute they came in and told me I was going to go home that my bowels were working good and I am now eating well, I almost passed out.  I was operating on adrenaline and seriously dropped back and almost past out.  I slept all the way home 2 hour drive, then slept for 36 of the next 48 hours, again with Velocity TV on!

    Back to work on 8-12, follow up appoint on 8-11 and after discussion with my Dr he advised if I wanted to try work I could. I have been so incredibly tired, want to sleep all day, or at least 4-5 naps a day for 15 mins to 1 hour, but now I take nap as soon as I get home.  Wake up in time to go to sleep.  Weekends still taking many naps Sat and Sun.  I feel that I am getting stronger each day, but my digestion is still crazy and not always comfortable, but managable. 

     

    What next - I have follow up appointments with Oncologist coming up soon and will need to follow a close regiment of CT scans and watching, drug therapies, etc as directed by Oncologist, additional surgeries if necessary.  I am optimistic but realistic.  My time away from work, recovering, etc has made one thing perfectly clear, I need a mid 1960's british convertible and many, many sunny days with the top down driving through central/western VA!

     

    Thx and hope each of you find today better than yesterday but not as nice as tomorrow!

     

    Take care!

    Tom B.

    Wow

    You've been through a lot! I hope they got it all and that you're done for good with this crap.

    Thanks for updating us.

    Todd

  • foxhd
    foxhd Member Posts: 3,181 Member
    todd121 said:

    Wow

    You've been through a lot! I hope they got it all and that you're done for good with this crap.

    Thanks for updating us.

    Todd

    I've said it before.

    Who says cancer isn't fun? Glad you are improving. Soon enough, it will all be a memory.

  • Tbuck1971
    Tbuck1971 Member Posts: 50
    foxhd said:

    I've said it before.

    Who says cancer isn't fun? Glad you are improving. Soon enough, it will all be a memory.

    Thx Todd and Fox!

    Thx Todd and Fox!

  • donna_lee
    donna_lee Member Posts: 1,041 Member
    Tbuck1971 said:

    Thx Todd and Fox!

    Thx Todd and Fox!

    No one said...

    it was fun to be initiated into this exclusive club.

    Most of us have some really wild tales that could be told because cancer does strange things to our bodies.  Glad you came thru the "ceremony" and are on the road to recovery. This is when you become a survivor, with a capital "S".

    All best to you both.

    Donna

  • Tbuck1971
    Tbuck1971 Member Posts: 50
    donna_lee said:

    No one said...

    it was fun to be initiated into this exclusive club.

    Most of us have some really wild tales that could be told because cancer does strange things to our bodies.  Glad you came thru the "ceremony" and are on the road to recovery. This is when you become a survivor, with a capital "S".

    All best to you both.

    Donna

    Thank You Donna

    Thank You Donna!