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  • Confused and need HELP BAD!

    Hello Everyone,

    I am new to writing in the forum but I have read several threads and posts. So Here Goes,

    I am a 39 year old Caucasian male and have been recently diagnosed with stage one non-seminoa testicular cancer. I have been seen by an oncologist at the Cleveland Clinic ( Dr. Timothy Gilligan) who has suggested that I go through the nerve sparring RPLND surgery with Dr. Klein ASAP. Based on my following information do you agree that this is the best choice or should I look at other options i.e., Surveillance , chemo etc.

    03/15/2007 Ultrasound found a 4.6cm mass.
    3/19/2007 Initial bloodscreening LDH 437, AFP 1040, HCG 7
    3/20/2007 Ct scan showed no abnormal nodes with the largest at 8mm and the rest are smaller
    3/26/2007 Chest x-ray came back clear
    3/28/2007 Right orchiectomy to remove mass.
    4/12/2007 Received Pathology report. States Mixed germ cell tumor -75% Embroynal Carcinoma, 15% seminoma and 10% yok sac tumor and rare trophablastic elements? Tumor limited to the testicular parenchyma Also appears NO Vascular invasion.
    4/12/2007 Post surgery bloodwork LDH 259, AFP 119, HCG<1
    4/23/2007 More blood work LDH Unkown, AFP 32, HCG Unknown. For some reason only the AFP test was done. More blood work to follow.

    So based on the above information, would you also suggest an RPLND due to having the EC and keeping fertility issues in mind,(getting married in December and want children) or is there a better option in your opinion. I know there is a ton of knowledgable people on this forum and your opinions on this issue would be greatly appreciated. Thank you all for your time and responses

    Sincerely,

    Brad W.
    Last edited by Brad Whitfield; 04-26-07, 12:52 PM.

  • #2
    Welcome Brad.
    Your choices for further treatments are likely; RPLND, Surveillance, or 2xEP. Whatever you choose, you should be fine. It sounds like you are what they call "good risk".
    I was much like you, however my second and third pathology report did in fact indicate vascular invasion. (My first ws done at a local hosoital, the second at PENN and the third at Sloan-Kettering.) The Cleveland Clinic has a terrific reputation, however I always think it is a good idea to get additional opinions at centers of execellence when dealing with a rare cancer like tc.
    If you want children, you should bank sperm regardless of your treatment decision.
    Best,
    Stage III. Embryonal Carcinoma, Mature Teratoma, Choriocarcinoma.
    Diagnosed 4/19/06, Right I/O 4/21/06, RPLND 6/21/06, 4xEP, All Clear 1/29/07, RPLND Incisional Hernia Surgery 11/24/08, Hydrocelectomy and Vasectomy 11/23/09.

    Please see a physician for medical advice!

    My 2013 LiveSTRONG Site
    The 2013 Already Balders

    Comment


    • #3
      A couple things to consider:
      1. Embryonal carcinoma can spread through the vascular system, so RPLND may not prevent the need for chemotherapy.
      2. You need to see your tumor markers return to normal, or chemotherapy is a given.
      Keep us posted as you hear more from your doctors.
      Scott, [email protected]
      right inguinal orchiectomy 6/5/2003 > nonseminoma, stage I > surveillance > L-RPLND 6/24/2005 for recurrence, suspected teratoma but found seminoma, stage II > chylous ascites until 9/2005 > surveillance and "all clear" since


      Your donation funds Livestrong services for people facing cancer now. Please sponsor my ride!

      Comment


      • #4
        Scott is right about the EC, and I'm the example. It skipped my nodes and got into my lung post rplnd (which wsa negative). Given your situation I would still seriously consider the RPLND by an experienced uro. (like Dr. Klein).
        Your decision may be made for you based on your markers tomorrow.
        Don't over educate your self on the internet- it will just get your head spinning.
        Good luck tomorrow.
        Stage III. Embryonal Carcinoma, Mature Teratoma, Choriocarcinoma.
        Diagnosed 4/19/06, Right I/O 4/21/06, RPLND 6/21/06, 4xEP, All Clear 1/29/07, RPLND Incisional Hernia Surgery 11/24/08, Hydrocelectomy and Vasectomy 11/23/09.

        Please see a physician for medical advice!

        My 2013 LiveSTRONG Site
        The 2013 Already Balders

        Comment


        • #5
          Thanks Guys

          Thanks Joe, Scott,

          I will see what happens tommorrow when I get the blood work done. Joe you are right, this self education is making me go crazy, If doctors can't agree on the "best" treatment how do they expect the patients to!!

          I am leaning towards the RPLND, should my marker fall within the proper ranges, but I have heard great reasons to do the surveillance from TC experts hence "Being Confused". I will keep you updated and thanks again

          Brad
          Last edited by Brad Whitfield; 04-22-07, 03:40 PM.

          Comment


          • #6
            Brad,

            When you get all the information, the decision will be clear to you. The obvious decision is the one that YOU believe is the one that gives you your best long term solution. There is never any good reason not to get a second medical opinion. When you get second opinions, you should get 2 Urlogists and 2 Oncologists. Your insurance should pay for this, if you have a normal policy.

            Good luck and let us know what you find out!

            Rob
            Rob
            1st TC 4/23/1973, Left orchiectomy, Seminoma, Radiation, 33 years great checkups, 2nd TC, 9/12/2006, Right orchiectomy, Seminoma, surveillance

            Comment


            • #7
              .

              2 x BEP or surveillance [I think 2 BEP has no long term side effects and in case of EC it will really cure you. RPLND is a major surgery and the risk to not be cured is high [in case of EC]]
              2005-03
              Stage III EC 85% + Sem 15%
              AFP=2.6; HCG=10, 20,28 and rising
              FULL CAT scan:
              -abdominal lymph clear
              -subpleural lungs metastasis [bipulmonary lesions with diam <= 1cm]
              4 x BEP changed to 3 x BEP at my request
              from 2005-05....Surveillance

              Comment


              • #8
                Some Good News

                Hello,

                Well I went to bank sperm today and the Doc said that my swimmers are good and there are alot of them! That has been the best news yet. What a relief.

                Still have to wait a couple of days for my blood tests to make a final descision on which course of treatment to take. Thanks again to all that have posted.

                Brad

                Comment


                • #9
                  RPLND Appointment

                  I have an appoinment to meet Dr. Klein on May 9th at 3pm to discuss the possibility of the RPLND. This is exactly 6 weeks to the day after my I/O.

                  Question: If all my markers are in the appropriate ranges, and should I decide to have the surgery, which would be scheduled following this appointment, Is waiting this long (6-8 weeks) detrimental to the success of the RPLND?

                  Various articles I have read suggest that the RPLND should be done within 6-8 weeks of I/O.

                  Any comments would be appreciated.

                  Brad

                  Comment


                  • #10
                    Originally posted by Brad Whitfield
                    I have an appoinment to meet Dr. Klein on May 9th at 3pm to discuss the possibility of the RPLND. This is exactly 6 weeks to the day after my I/O.

                    Question: If all my markers are in the appropriate ranges, and should I decide to have the surgery, which would be scheduled following this appointment, Is waiting this long (6-8 weeks) detrimental to the success of the RPLND?

                    Various articles I have read suggest that the RPLND should be done within 6-8 weeks of I/O.

                    Any comments would be appreciated.

                    Brad
                    That seems like a good question for Dr. Klein. Also, your oncologist. Maybe Klein can see you sooner if your press his office.
                    I had the same questions for Sheinfeld at Sloan-Kettering, and he and my oncologist were okay with waiting 8 weeks post IO for my RPLND.
                    It worked out- my nodes were negative, however I did have a recurrence in my right lung, that came through my blood stream.
                    I understand you are in a tough situation... Your original pathology shows more EC than I had as well..
                    I suggest you push your Klein for a quicker visit, and I can't stress enough the importance of a second opinion on your pathology. I would even ask your oncologist where he would suggest you get a second opinion.
                    Best,
                    Stage III. Embryonal Carcinoma, Mature Teratoma, Choriocarcinoma.
                    Diagnosed 4/19/06, Right I/O 4/21/06, RPLND 6/21/06, 4xEP, All Clear 1/29/07, RPLND Incisional Hernia Surgery 11/24/08, Hydrocelectomy and Vasectomy 11/23/09.

                    Please see a physician for medical advice!

                    My 2013 LiveSTRONG Site
                    The 2013 Already Balders

                    Comment


                    • #11
                      Originally posted by Already Bald
                      That seems like a good question for Dr. Klein. Also, your oncologist. Maybe Klein can see you sooner if your press his office.
                      I had the same questions for Sheinfeld at Sloan-Kettering, and he and my oncologist were okay with waiting 8 weeks post IO for my RPLND.
                      It worked out- my nodes were negative, however I did have a recurrence in my right lung, that came through my blood stream.
                      I understand you are in a tough situation... Your original pathology shows more EC than I had as well..
                      I suggest you push your Klein for a quicker visit, and I can't stress enough the importance of a second opinion on your pathology. I would even ask your oncologist where he would suggest you get a second opinion.
                      Best,
                      I did speak (argue) with his office and that is the earliest they can get me in! My oncologist agreed as did yours that 8 weeks was acceptable and that it also depended highly on what my blood results showed this week and again the following week.

                      I did get two opinions on my path report the original one from the local hospital and the second from the Cleveland Clinic. the %'s were almost identical and both advised no vascular invasion. I was thinking about sending my slides to I/U for a third opinion?

                      I guess I have to see what the blood work is telling me before I jump to any further decisions.

                      Thanks Brad

                      Comment


                      • #12
                        Originally posted by Brad Whitfield
                        I did speak (argue) with his office and that is the earliest they can get me in! My oncologist agreed as did yours that 8 weeks was acceptable and that it also depended highly on what my blood results showed this week and again the following week.

                        I did get two opinions on my path report the original one from the local hospital and the second from the Cleveland Clinic. the %'s were almost identical and both advised no vascular invasion. I was thinking about sending my slides to I/U for a third opinion?

                        I guess I have to see what the blood work is telling me before I jump to any further decisions.

                        Thanks Brad
                        Brad,
                        Did you get your lab results yet? Too bad Dr. Klein can find 15 minutes for you this week- but don't stress over it.
                        If your insurance will cover I/U, I say go for it- you have nothing to lose but copays. I would just be upfront will all of your doctors- let Cleveland Clinic know you are seeking a consult, they won't take offence. It doesn't mean you will have your treatments at I/U...
                        Best,
                        Stage III. Embryonal Carcinoma, Mature Teratoma, Choriocarcinoma.
                        Diagnosed 4/19/06, Right I/O 4/21/06, RPLND 6/21/06, 4xEP, All Clear 1/29/07, RPLND Incisional Hernia Surgery 11/24/08, Hydrocelectomy and Vasectomy 11/23/09.

                        Please see a physician for medical advice!

                        My 2013 LiveSTRONG Site
                        The 2013 Already Balders

                        Comment


                        • #13
                          Originally posted by Already Bald
                          Brad,
                          Did you get your lab results yet? Too bad Dr. Klein can find 15 minutes for you this week- but don't stress over it.
                          If your insurance will cover I/U, I say go for it- you have nothing to lose but copays. I would just be upfront will all of your doctors- let Cleveland Clinic know you are seeking a consult, they won't take offence. It doesn't mean you will have your treatments at I/U...
                          Best,
                          I recieved my lab results but there is a problem. The Lab only conducted my AFP test and not my LDH or HCG. I have a call in to the doctor to find out why only the AFP was done? Anyway my AFP went from 119 to 32 in 10 days I hope that is a good thing and it is not falling to slow?

                          I called again about trying to get in with Dr. Klein and they said if there was a cancellation or if anything changes they would contact me.

                          I have decided based upon Joe's advice to send my pathology report/ slides to I/U for another opinion. My Doctors all advised that they do not have a problem and in fact encouraged me to get other opinions. Not sure if my insurance will cover it, and if not it is well worth the peace of mind. I have already done a brief consult with Dr. Einhorm at I/U via E-mail and he strongly suggests to wait and see if my AFP normalizes before I make a decision on surveillance, RPLND, or Chemo.

                          I guess now I just have to wait for my doctor to get me another blood test and wait and see if my blood results all normalize before I can make to right decision for me.
                          Thanks again to all.

                          Brad

                          Comment


                          • #14
                            New Information

                            Just and update,

                            Recieved my new blood results today, AFP 11, HCG >1, LDH 188. Blood work appear to be at the proper levels. Now I have to wait and see what the surgeon says on Wednesday.

                            I am leaning towards RPLND for several reasons, but I am scared to death of this surgery. I am also waiting to get back ( Tommorrow) My 3rd opinion, pathology reports from I/U to help with my final decision.

                            I will keep everyone informed and thanks again for all of the help.

                            Comment


                            • #15
                              What to expect from RPLND

                              Brad,

                              I am really impressed with your aggression and desire to educate yourself. That's a key success factor.

                              I had a bi-lateral RPLND (post-4xBEP chemo) in late November 2006. It IS major surgery, and that is just a fact. It is a common enough procedure that mortality rate is VERY low, however.

                              I was in the hospital (Sloan-Kettering) for a week, and then recuperated at home for another 10 days (in NC). I can't give you any real advice on what treatment option is best, but here's what the RPLND was for me:

                              1 day of fasting pre surgery
                              6 hours under the knife
                              Walked a mile the day after surgery (catheter and morphine pump attached)
                              It HURTS!
                              Your digestive kind of goes "quiet" since they move so many parts and pieces during the procedure, so you have to walk to get the bowels moving again.
                              No food or water at all for 5 days (my doc was more conservative than most, so standard is about 3 days)
                              Off the morphine at day 3
                              Off the catheter at day 4
                              Feeling Much better at day 6

                              Moving slowly and carefull for another week.

                              Please keep in mind that the goal for you is a Cure. The RPLND may or may not be curative for you, but it IS a whole whole whole lot easier to do pre-chemo than post chemo.

                              Take that for what it's worth and let me know if I can be of any help at all!
                              Stage III Non-Seminoma- 7/11/06
                              Right I/O 7/12/06
                              Completed 4x BEP 11/06
                              Bi-Lateral RPLND (Dr. Shenifeld)- 11/27/06
                              Surveillance since then

                              When you think about it, what other choice is there but to hope? We have two options, medically and emotionally: give up, or Fight Like Hell.
                              Lance Armstrong.

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