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  • Terrified and Overwhelmed

    The last 6 months have been a whirlwind of information. My 26 year old son has been diagnoised with State III TC. Below is the information from his scans and pathology report. We are to see Dr. Roth at Vanderbilt on Friday the 26th. Any information or questions which might prepare us for this visit will be welcomed.

    Diagnosis: Left Testicle with Non-Seminomatous Germ Cell Tumor, to Include Embryonal and Terato-Carcinoma Elements. Surgical cord margin free of tumor, inked surgical margins free of tumor involvement. Gross Description: Received in a fresh state is a left testicle which includes the attached cord structures. Overall dimensions are 8.4 x 3.8 x 3 cm. A proximal cord section is placed in cassette 1. Ink is applied to the external surface. Approximately 3 cm from the nearest inked margin is a discrete variegated mass which is yellow tan and hemorrhagic in appearance. This mass measures 1.7 cm in greatest dimension. Segments demonstrating the closes inked margin are placed in cassette 5. Sections containing epididymis are placed in cassette 6.

    When we went in to see the Oncologist for the first time, he told us that Derick's tumor markers we 60,000. As I have learned more, this is what they tell us. His Alpha Beta Protein was 14,346 and his Beta FCG was 177,000. After 16 weeks of BEP his APB is now 2.8 which we are told is normal but his Beta FCG is 12 which is not normal. They just did a PET Scan because the last MRI's findings were: Scan of the chest, abdomen and pelvis with contrast: A very thin slice axial slices were obtained with the Philips 64 Multi detector Spiral CT Scanner from the thoracic inlet to the pubis symphysis following oral and intravenous contrast administration (Isovue 370, 100 ml). The raw data was then used for axial and coronal reformation at 5mm intervals. Evaluation with lung windows again demonstrates metastatic nodules throughout both lungs too numerous to count. Some of these nodules present on the prior study of 9/21/06 have decreased slightly in size, others have increased slightly in size. There appear to be more nodules decreasing in size than increasing in size. There is no evidence of hilar or mediastinal adenopathy. No focal abnormalities are identified in a normal sized liver. The pancreas, spleen and gallbladder are within normal limits. The large lymph node masses, which have surrounded the aorta on the prior study, have generally been debunked, however, a large number of nodes remain particularly 1 lymph node mass on the left side abutting the medial surface of the kidney measures 4.49 cm. This lymph node mass is slightly smaller than on the prior study. Other lymph node masses show marked decrease in size and generally speaking there is much less riaortic lymph adenopathy than on the prior study. No new lymph node masses are identified. In the pelvis, there is no evidence of iliac adenopathy as such, but a few small shotty lymph nodes are visualized along the iliac chain. The seminal vesicles and prostate gland are within normal limits. No inguinal abnormalities are noted. Large numbers of metastatic pulmonary nodules some of which have deceased in size. A fewer number have increased in size. These changes have all been in the 10-20% range whether increasing or decreasing in size. Decreasing amount of periaortic lymph adenopathy with no new lymph node masses identified. Shotty iliac chain nodes without lymph node masses in the true pelvis.

    What we were told from the PET Scan is that there was no lighting up in the Abdomen or Lung area but there was significant lighting up in the Neck region. What that all means, I'm not real sure of but they have since done another MRI of the brain. We do not have those results as of yet. After the PET scan, Dr. Patel told us that Derick has three options. 1) To restart his chemo using the same BEP for two cycles and then repeat his tumor markers 2) To start chemo back up using a different chemo which is what normal protocol who call for or 3) To do a stem cell transplant. Dr. Patel did say that he would like for Derick to get a second opinion at Vanderbilt which is why we are seeing Dr. Roth on Tuesday, January 26th. Dr. Roth has asked that all Pathology slides, records, MRI and PET scan disks be sent to him for review.

    At this point I am a mother who is overwhelmed with information and questions. Please help.

    Renea
    Mother of Derick Danko 26 yr. old first diagnoised in July 06. Left Orchiectomy 9/28/06. Found to be Non-Seminoma mixed germ cell to include embroyonal and teratoma carcinoma. Began 4XBEP and finished in December 06. February 19, 2007, met with Dr. Roth at Vanderbilt for consultation re: stem cell transplant. Started VIP February 26, 2007, resulted in complications. Derick lost is battle with TC March 9, 2007.

  • #2
    Terrified and Overwhelmed

    Robert I did send you the pat report via email this a.m. did you receive it. I am still not able to get on the other site for whatever reason. It is the only one I am having trouble accessing. Thanks for all your great info and support. I look forward to talking to others on here.
    Mother of Derick Danko 26 yr. old first diagnoised in July 06. Left Orchiectomy 9/28/06. Found to be Non-Seminoma mixed germ cell to include embroyonal and teratoma carcinoma. Began 4XBEP and finished in December 06. February 19, 2007, met with Dr. Roth at Vanderbilt for consultation re: stem cell transplant. Started VIP February 26, 2007, resulted in complications. Derick lost is battle with TC March 9, 2007.

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    • #3
      Renea,
      Welcome. Those that come here are often confused and overwhelmed, and as a mom I can't even think of dealing with this in a child. If Robert is on your case and you have expert opinions on the next steps you will be in good hands. This site is a godsend for information, shared experiences and support. My thoughts are with you and Derick and please let us know what Vandy says. Have you thought of going to Sloan or Indiana?
      Retired moderator. Husband, left I/O 16Dec2005, stage I seminoma with elevated b-HCG, no LVI, RTx15 (25Gy). All clear ever since.

      Comment


      • #4
        Scared and Overwhelmed

        Hi Karen,

        Thanks for the response. Yes we have thought of Sloan or Kettering but so many people have told me that next to Dr. Einhorn that Dr. Roth is the next best thing so I thought we would start there. I will definately post the results from Vandy. We just got bumped from Tuesday a.m. to Friday the 26th in the afternoon so that delay will seem like forever.

        Renea
        Mother of Derick Danko 26 yr. old first diagnoised in July 06. Left Orchiectomy 9/28/06. Found to be Non-Seminoma mixed germ cell to include embroyonal and teratoma carcinoma. Began 4XBEP and finished in December 06. February 19, 2007, met with Dr. Roth at Vanderbilt for consultation re: stem cell transplant. Started VIP February 26, 2007, resulted in complications. Derick lost is battle with TC March 9, 2007.

        Comment


        • #5
          Praying for you

          That is definitely tough news to hear.

          Welcome to a really supportive group with a wealth of information and experience. I went to Sloan and saw Sheinfeld and was more than thrilled with the experience. However, I don't know Vandy other than by reputation which is great.

          I'm praying for you and we'll all help in any way possible!
          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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          • #6
            Rena:
            Robert is right on the mark about medical opinion from us. The medical issues are being addressed by some of the best in the business and we really can only wait. My only question is have they ruled out the slight elevation in HCG being related to possible extensive teratoma?
            drom was a frequent visitor while his son was being treated and I can tell you he had a long road. Chemo, RPLND and surgery on both lungs all of this was done in less then a year. Now all of his medical reports show his son as being clear of cancer in fact he is doing so well that that he has been able to return to an active college life. The course of treatment may be hard and long but this thing can be beaten and you are seeing the right people to make that happen.
            Son Jason diagnosed 4/30/04, stage III. Right I/O 4/30/04. Graduated College 5/13/04. 4XEP 6/7/04 - 8/13/04. Full open RPLND 10/13/04. All Clear since.

            Treated by Dr. Rakowski of Midland Park, NJ. Visited Sloan Kettering for protocol advice. RPLND done at Sloan Kettering.

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            • #7
              Thanks Boyce for the kind words of support. I'm glad I found all you guys cause I can use all the encouragement I can find. Renea
              Mother of Derick Danko 26 yr. old first diagnoised in July 06. Left Orchiectomy 9/28/06. Found to be Non-Seminoma mixed germ cell to include embroyonal and teratoma carcinoma. Began 4XBEP and finished in December 06. February 19, 2007, met with Dr. Roth at Vanderbilt for consultation re: stem cell transplant. Started VIP February 26, 2007, resulted in complications. Derick lost is battle with TC March 9, 2007.

              Comment


              • #8
                [QUOTE=dadmo]Rena:
                My only question is have they ruled out the slight elevation in HCG being related to possible extensive teratoma?

                No one has mentioned this to me or Derick that I'm aware of. Another issue that has recently been mentioned is THC possibly having something to do with the elevated HCG. They have had Derick on Marinol which has THC in it for the nausea, vomiting and substantial weight loss. Some have mentioned that his could in fact shown a false positive. We're waiting to discuss with Dr. Roth.
                Mother of Derick Danko 26 yr. old first diagnoised in July 06. Left Orchiectomy 9/28/06. Found to be Non-Seminoma mixed germ cell to include embroyonal and teratoma carcinoma. Began 4XBEP and finished in December 06. February 19, 2007, met with Dr. Roth at Vanderbilt for consultation re: stem cell transplant. Started VIP February 26, 2007, resulted in complications. Derick lost is battle with TC March 9, 2007.

                Comment


                • #9
                  Well you will have all of your answers soon enough, just remember your son isn't a lost case. He can still be cured just stay focused and keep doing what you're doing. A very good friend of mine told me something when my son was first diagnosed that annoyed me at the time but it is an absolute truth "all you can do is give your son the best chance you can at beating it", you appear to be doing that and for you son I thank you.
                  Son Jason diagnosed 4/30/04, stage III. Right I/O 4/30/04. Graduated College 5/13/04. 4XEP 6/7/04 - 8/13/04. Full open RPLND 10/13/04. All Clear since.

                  Treated by Dr. Rakowski of Midland Park, NJ. Visited Sloan Kettering for protocol advice. RPLND done at Sloan Kettering.

                  Comment


                  • #10
                    Renea,

                    Your story is very similar to my son's. He was stage 3 with many nodules in the lungs. He had a tumor the size of a grapefruit on his kidney that shrunk with the 4X BEP but was so wrapped around his kidney it had to b e removed.

                    We went through a rough period after chemo waiting for his markers to reach normal. The Pet Scan showed some light areas around the kidney and Dr. Motzer and Dr. Scheinfeld were taking their time with the surgery. We were frustrated but we put our trust in two of the best TC experts in the world and our faith was rewarded. As Dadmo said, he is back at school and doing very well. He just passed his 6 month Sloan check up with flying colors.

                    I so understand your pain and my eyes tear up when I read your story; it is so close to ours. It is so hard to believe but look how far you come, you and your son will make it, I promise. Last year at Christmas we were in the hospital with Alex on chemo not knowing what the future would hold. This year the whole family spent Christmas in Italy sightseeing and having a true Italian Christmas with relatives that live in Rome. It will happen for you, look at all the survivors on this site; you and your son will be one soon.

                    I still visit the site almost everyday and I read the stories and it so tough being so close to the completion of the treatment. But I read your story and I feel your pain but I also know you will win and next year the sky will be very blue for you and your son and the little things in life won't bother you so much.

                    When we were driving back from the airport Alex was talking about how great our relatives in Italy and America are. He mentioned my cousin Gail and how she stayed with him while he was vomiting after the first round of chemo, rubbing his back and helping him stand. I turned to him and said Alex, do you realize that was exactly a year ago today. I pray you have a moment like that, where you are remembering what happen but everything is over and your son is healthy.

                    It will happen, hang in there.

                    Domenic

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                    • #11
                      Originally posted by Robert2112
                      Also, I am not sure that I have the right to say this, but I am going to. As she has just recieved exact information on what needs to be done, from an impecable source, with the right questions to ask and the issues involved medically, that we limit discussions on the MEDICAL aspects of her sons case to those with direct experience to this type of situation until after your son see's Dr Roth .
                      I'd say that's completely fair. We aren't doctors here, after all, even though our personal experiences and knowledge are often relevant and helpful.
                      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!

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                      • #12
                        Renea,
                        Keep the faith- things will work out.
                        I know TC can get you down sometimes, just try to remember that this disease has an extremely high cure rate. Keep thinking about Lance and 7 wins.
                        Joe
                        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

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                        • #13
                          I am sure you are overwhelmed and exhausted but I want you to know that you are doing all the right things for your son. You have found a website with a wonderful & supportive group of people. You are getting care from a TC expert. Lots of good news stories are on this site too and I am sure that yours will be another. Meanwhile we are sending good wishes your way!

                          Spouse of Stage IIIB
                          2BEP, 1VIP, finishing 1 EP
                          Husband:
                          11/06 Left I/O
                          11/06 - 2/07 2xBEP, 1VIP, 1EP
                          2/08 Recurrence 2xTIP (second TIP reduced dose)
                          1xHDC - Cardiotoxicity (no second BMT possilbe)
                          11/08 - Thoracic Surgery to remove tumor (dead cancer)
                          1/09 Scans Clear - AFP Rising
                          4/09 AFP 1600
                          4/09 Thoracic Surgery (again) found yolk sac & teratoma
                          7/09 AFP at 3! & CT Clear
                          2/10 Tumors in chest (again) likely teratoma
                          11/10 Starting Trial Drug!... actually did not start trial. tumors shrinking
                          10/12 AFP 29. Scans clear.

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                          • #14
                            Your family will be in my thoughts and prayers!
                            Wishing you all the best,
                            Brian
                            diagnosed 01/15/2005 bi-lateral seminoma stage IIa,4cm lymph node, right I/O & partial left I/O mar/2005, 18 days of radiation, remaining left I/O- aug/2005, surveillance, Wife did IVF oct/2005, DAD OF BABY GIRL born 08-02-2006!!! testosterone implants May 2008

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                            • #15
                              Renea, I just read your post today.....in July my son Chris will be at his two year mark.....but when he was diagnosed with TC......I felt numb and terrified....but I learned so much on this site...and had so much support...I learned about Dr. Sheinfeld here...and we took Chris to NY....I cried for three months straight that it happened to a kid who is just starting his life at college...but the good news is...Chris had chemo, RPLND surgery and is a Senior in college....feeling great, looking great....keep the faith...ask questions...keep us updated....and you are not alone! Mary Ellen

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