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  • Need RPLND?

    Hi everyone,

    In about my 9th month of battle now. NSGCT - found in June, Stage 1, downgraded to stage IS in October, EPx4 chemo Nov 5-Jan 11.

    AFP - 1.9 as of Jan 7
    Highest AFP - June 4 (day before surgery) - 492

    Last CT scan was 10/22: Most significant finding:

    "
    There are a few small scattered periaortic lymph nodes which are stable in appearance and too small to be considered significant. There is no evidence of pelvic lymph node enlargement."
    Went in for CT today to being regular follow ups. CT was at 9:30. Got call from my Urologist at UPMC.

    Doc tells me that lymph node that was 0.8cm on 10/22 is now 1.8cm. He suggests, because of my path report from orchiectomy (posted below), that he performs the RPLND within next 2 weeks. Teratoma is the reason he sights. Sounds fast to me, but what do I know? That's why I'm here.

    I'm pretty darn scared of this surgery. I would love to hear your experiences and what I should suggest. Will this finally put this to rest? After each step the doctors have told me "there's a good chance this is all you need." Orchiectomy gave me that false hope for 4 months. Chemo only gave me that false hope for 3 weeks. But I REALLY thought I was done. I've said in previous posts that I had it pretty darn easy in my EP chemo (barely any side effects). Now I feel like this is punishment.

    Any ideas thoughts or anything would be greatly appreciated. I even reached out with my whole story to Dr. E during my 2nd round of chemo. He told me 95-97% cure. That was truly a let down...just very frustrated right now. I'm 25 and my fiancee and I literally just started moving into our first apartment together and we get this news. Poor girl is freaked and I feel so bad. And powerless. Just so very frustrating....



    My pathology:

    FINAL DIAGNOSIS: TESTIS AND SPERMATIC CORD, RIGHT, ORCHIECTOMY: A. MIXED GERM CELL TUMOR COMPRISED OF APPROXIMATELY 45% EMBRYONAL CARCINOMA, 30% TERATOMA AND 25% YOLK SAC TUMOR. B. THE TUMOR MEASURES 4 CM IN GREATEST DIMENSION. C. THE TUMOR APPEARS CONFINED TO THE TESTIS. D. DEFINITE LYMPHOVASCULAR INVASION IS NOT IDENTIFIED. E. GERM CELL NEOPLASIA IN SITU IS IDENTIFIED. F. THE SPERMATIC CORD MARGIN IS FREE OF TUMOR. G. BACKGROUND TESTICULAR PARENCHYMA SHOWS COMPLETE SPERMATOGENESIS, FOCAL HYALINIZATION OF THE SEMINIFEROUS TUBULES, AND FOCI OF ARTERIOLAR HYALINOSIS. H. TNM PATHOLOGIC STAGE (AJCC 8TH EDITION): pT1 NX MX.

  • #2
    Chemo only gave me that false hope for 3 weeks.
    HUH? what do you mean, you are on a 16 week program, no way to know if its working in 3 weeks. please explain?
    Jan, 1975: Right I/O, followed by RPLND
    Dec, 2009: Left I/O, followed by 3xBEP

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    • #3
      I finished chemo, all 4 cycles, 3 weeks ago. For 3 weeks, I thought wow I'm done with this bull****. That was what I meant by false hope. Everyone said oh that chemo will do the trick. 4 cycles later and my lymphs are enlarged and I'm scheduling surgery within the next 2 weeks.

      Comment


      • #4
        I had 3 x BEP and rplnd in September and I can tell
        You the surgery was much easier than the chemo
        For me. Teratoma can be chemo resistant and needs to come out. My doc said they usually like to do the rplnd within six weeks of finishing chemo. I was playing golf again by end of November and pretty much back to normal currently(running, weights, yoga, etc.) don’t let the rplnd scare you just get it over with and move on just make sure your doctor is experienced it will make a big difference.

        Comment


        • #5
          My guess for this would be teratoma as well. Mixed tumors, especially ones with teratoma, eventually require RPLND from what I’ve seen on here. I never had it, but the consensus is if you can do chemo this is easier. So sorry to hear that though. Luckily odds are after the surgery you’ll be good to go for good.
          3/29/17 Diagnosed 100% Embryonal 4/10/17 Left I/O CT scan shows a few suspicious lymph (biggest 1.9 cm) 5/8/17 - 7/3/17 3xBEP 7/20/17 CT Scan Clear, AFP has uptick to 19 8/16/17 AFP Drops in half to 10, ALL CLEAR! 3/20/19 All clears up to here!

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          • #6
            I’m currently writing you this thread from UCLA and had my RPLND done Monday morning at 7:30am. This was the only one I hope I ever have to go through and I was super scared just like you. Don’t be scared but definitely be smart. If you are not confident in that hospital or surgeon then find someone else. Fly there, drive there. It’s too important to get it wrong. I learned this with my first battle 5 years ago. I’m a 2x guy. I presented a lump in my neck and the first few places I went to wanted to cut into my neck first and then take the testicle second. Thank god I found Dr. Mark Litwin at UCLA. The BEP chemo melted it away and his skills with the RPLND were unreal. I’m walking around the hospital.

            What this surgery comes down to is experience. If you can financially afford to do so and have the means for the time off work find a doctor (Sloan in NYC maybe) or elsewhere that will put your mind at ease. They are correct. This should be it. You will be cured. Chemo sucks. RPLND isn’t easy but I felt confident at a center of expertise with a surgeon who did 2 of these back to back on Monday. Mine was first.

            I have an epidural which I think is making a huge difference right now. Ask them if you would be getting one. If not, I would maybe consider elsewhere. I press the button and my pain is gone. It will get much harder when I get it taken out but I’ll be healing much more by then too. Feel free to ask any questions. Both of us just want to move on with our lives. Let’s do that.

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            • #7
              Dr. Tarin, my urology surgeon, did his fellowship at Sloan and is highly experienced with the RPLND (after consulting with him). He has already mentioned giving me epidurals. I feel very confident in his abilities. Nor do I have the finances to be able to travel.

              That is fantastic to hear you are already up and walking after 2 days! I hope this will put your fight to rest and you are able to continue life!! How long do they estimate you being there and how long will you have the epidural?

              I have read about residual masses and if they come back cancerous (not just teratoma) that additional chemo is required. Does that mean high dose chemo and stemcell or just more EP / BEP?

              Thank you to everyone for your comments. My surgery is on Feb 19. My CT scan came back and said I have 1 node that went from 0.8 to 1.4. That is why we are headed this route. As of Monday AFP went from 1.9 during 4th cycle of EP to 2.9 (not a large increase).

              Comment


              • #8
                Originally posted by CPOS55 View Post
                Dr. Tarin, my urology surgeon, did his fellowship at Sloan and is highly experienced with the RPLND (after consulting with him). He has already mentioned giving me epidurals. I feel very confident in his abilities. Nor do I have the finances to be able to travel.

                That is fantastic to hear you are already up and walking after 2 days! I hope this will put your fight to rest and you are able to continue life!! How long do they estimate you being there and how long will you have the epidural?

                I have read about residual masses and if they come back cancerous (not just teratoma) that additional chemo is required. Does that mean high dose chemo and stemcell or just more EP / BEP?

                Thank you to everyone for your comments. My surgery is on Feb 19. My CT scan came back and said I have 1 node that went from 0.8 to 1.4. That is why we are headed this route. As of Monday AFP went from 1.9 during 4th cycle of EP to 2.9 (not a large increase).
                Confidence in your surgeon is important. I’m glad you have that. My surgery was on Monday at 7:30am. I woke up about 11. The first day was the hardest not because of pain but because of the tube in my nose that goes to my throat. Tuesday morning they removed that and I really started making progress. 10 laps around the hospital hallway 3 times a day. Today they removed the epidural and cathader. I’m being discharged tomorrow. No staples just seri-strips (not sure how to spell it). I had a pain management team and was never really ever in pain. I am amazed. Centers of excellent make a big difference along with the skills of your surgeon. This surgery should not be feared at all. It sucks and I’m sure the next 8 weeks will come with challenges but we are working towards a cure and not a better quality of life. You will be cured. Count on it.

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                • #9
                  Discharged today? That is fantastic news. Keep me updated on your progress. If you don't mind me asking your age and physical condition? I would love to see how we compare to see what I can expect a little more.

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                  • #10
                    I don’t mind listing it but I don’t think it’s going to matter. 4 or 5 days in the hospital and a 2 weeks off your feet and I think almost anyone can do this.

                    I am an athlete surfer and ocean lifeguard. Very fit with low body fat (9%). 36 years old. About 170lbs but when I got rediagnosed I went into a dipression spiral and lost 10 pounds. So going into the RPLND 160lbs 6ft-0”.

                    Maybe your physical condition will save you a day or two but it doesn’t matter. They are discharging me today but I wouldn’t care to stay another or even 2. I have my own room with bathroom and shower, 8th floor with a great view and super nice people always checking in on me. Centers of excellence make a difference in my opinion. Things you need to bring once again in my opinion.

                    Bathrobe and slippers
                    iPad or laptop
                    Portable battery charging pack
                    I brought my own water jug because I always drink alkaline speciality water and I didn’t have to bother the nurses to make sure I was staying fully hydrated.
                    Noise canceling headphones not just ear buds if possible.
                    Sleep blindfold
                    Face wipes

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                    • #11
                      Alright complete opposite of me LOL. I'm 25 and 5'11" 280LB. I was 260 lbs before chemo but I was a gainer. I was a former collegiate offensive lineman so its not entirely out of shape. Just a few years removed from the game lol.

                      That is a fantastic set up you had. While I doubt my stay will be THAT comfortable, UPMC facilities are still excellent and I am sure I will be very comfortable.

                      I was already starting to prep my list of things to bring. Laptop will be key so I can still "work". Face wipes was something I found interesting. And how does showering work? Were you able to right after surgery? Can you get the steri's wet? Not sure how my cut will be taken care of - forgot to ask that.

                      I'm sorry to hear about your depression after the re diagnosing. It seems you have a much better outlook now and it has been very encouraging in the coming days to my surgery. 12 days away, kind of eager just to get it done with, but I am going to be sure to enjoy these days!

                      Comment


                      • #12
                        Definitely the opposite but you have 2 weeks to put your body into fighting shape and being an athlete you know how to do that. I highly recommend alkaline water, organic teas, and juicing (vegetables drinks that is). These were easy for me because I was already doing them from my first battle daily 5 years ago. Thought they were my good luck charm. But I don’t regret them at all. They made me healthier. In my view of this when I finally accepted it, I was backed into a corner. Nothing else left to do but fight. So I had the same exact time frame as you. I worked out hard everyday, vegetable juices, good foods that you know will help you heal faster. I’ll help you get an edge on this. I’ve studied diet, nutrition and exercise since I was 18 years old. That was my plan. Any edge possible even if it was a little or most likely not going to do anything, I did it. The mental part for me is always the hardest. Do you want to look back and say I should have done this? No. So go out tonight and eat all the ****ty foods that you like and have some beers with the boys and wake up tomorrow like you are headed into battle in a few weeks. You can easily loose that weight and put on muscle within the time frame. I always did lemon waters when I woke up and before bed. Double protein shakes to put some weight back on for me. I super carb loaded days before the surgery. Went and got a deep tissue massage the day before. Ask questions. I’d love you help you kick this ****s ass. I plan on making a post of everything I’ve done. As a 2x now I hate this hand that I’ve been delt but I highly respect the guy on here DavePet and a few others. We are not dead. We have a long life to live. I’m at a hospital right now watching people fighting for their lives with organ transplants ect.... this is minor compared to some of the **** they are going through. Everyone has to go through something in their lives and I never believed that until I was 31 and my first cancer struck. Since then I have stepped up my game in everything and I tell minimal people about it. No go fund me pages, FB why me posts ect. Head down and go to work. I got your back. Post back and I’ll check back daily to help.

                        Let me tell you something you already know. The world ain't all sunshine and rainbows. It's a very mean and nasty place and I don't care how tough you are it will beat you to your knees and keep you there permanently if you let it. You, me, or nobody is gonna hit as hard as life. But it ain't about how hard ya hit. It's about how hard you can get hit and keep moving forward. How much you can take and keep moving forward. That's how winning is done!

                        Sylvester Stallone, Rocky Balboa

                        I woke up listened to that quote and put my music mix on everyday and went to work on this.

                        Comment


                        • #13
                          Everyone is different in regards to post chemo RPNLD. My son was 17 when he had his post chemo RPNLD. He is now 19 and would tell you that Chemo was harder. He was only in the hospital 3 full days- had surgery on a Monday, home Thursday morning before 11am. The big thing is to WALK afterwards. My son also was able to attend Scout overnight week long camp 4 weeks after his surgery (no strenuous activities). the biggest surprise was lack of appetite- he lost weight. He also does have retrograde, at least the last time i asked him. No something a 19 year old wants to discuss with his mom.
                          Good luck
                          Son Grant
                          dx 12/21/16 at age 17

                          BEP x3
                          Post Chemo CT Scan on 3/28/17 still showed a few nodes over 2 cm
                          2nd Post Chemo CT Scan on 4/27/17 showed all nodes still over 2cm
                          Post Chemo RPLND 5/8/17: Periaortic Teratoma, Intraaorticaval Teratoma, and Paracaval Teratoma found.

                          Comment


                          • #14
                            Originally posted by Trekga View Post
                            Everyone is different in regards to post chemo RPNLD. My son was 17 when he had his post chemo RPNLD. He is now 19 and would tell you that Chemo was harder. He was only in the hospital 3 full days- had surgery on a Monday, home Thursday morning before 11am. The big thing is to WALK afterwards. My son also was able to attend Scout overnight week long camp 4 weeks after his surgery (no strenuous activities). the biggest surprise was lack of appetite- he lost weight. He also does have retrograde, at least the last time i asked him. No something a 19 year old wants to discuss with his mom.
                            Good luck
                            I read your sons story before my surgery. It really helped me. Home by day 4 and at a summer camp a few weeks later. Thank you for sharing that. It really did help.

                            Comment


                            • #15
                              Personally, I wouldn't bother with the laptop. After my RPLND, between the meds, being tired, and not having any focus I pretty much just watched TV and putzed on my phone. Didn't even touch my laptop.
                              6/5/15: bHCG 27,AFP 8.66, LDH 361, 5.6cm lymph node - Stage IIC
                              6/16/15: Left I/O 85% EC, 10% chorio, 5% yolk sac opinion 2 (mayo) 90% EC, 10% yolk sac
                              7/7/15: bHCG 56, AFP 42, LDH 322
                              7/13/15: begin 4xEP, end 9/18/15
                              10/1/15: bloodwork normal, ct scan shows 2 lymph nodes 1.0cm
                              10/26/15: 2nd opinion on CT results - lymph nodes normal. Surveillance!
                              4/6/16: 1.7cm X 1.5cm lymph node found with markers normal.
                              4/20/16: RPLND @ IU - teratoma only!
                              4/15/19: all clears up to this date!

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