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  • Advice Please

    Hello all,
    My 17 year old son Jason was just diagnosed His surgery is tomorrow. The guilt is almost overwhelming for me. This all started in May with a breast lump on him. We took him to our family doctor who prescribed antibiotics. No blood test. I thought it was hormonal and hoped we could know for sure. A month later, his right testicle had a small lump. I could not get an appointment that week, so chose Urgent Care because they can do labwork there. The doctor once again said infection, gave him an antibiotic shot and put him on 14 days of antibiotics. Still no blood test, even though I asked!Fast forward to 2 weeks ago. My son had not mentioned it but did complain of stomache and chest pain. He runs and does push-ups, so I told him to ice it and of course he had muscle pain. Then for school shopping, we ended up in an arguement where he said "Im in constant pain and my lump has grown 4x the size as before". I was furious at him for using his health against me, as his mother. He said I make a big deal out of going to the doctor for "no reason" and thats why he didn't tell me. I obviously made an appointment for him. Our doctor examined him and with HUGE shocked eyes and an uncomfortable smile, he said we need this to be ultrasounded right now. He called around and got us an appointment. He called us 20 minutes later while we were driving home. He told my husband that he needed to talk to someone who wasn't driving. Then he told me "there is no easy way to do this".."it's a 7 cm solid mass". The next day, he had his catscans and bloodwork. LHD, HCG, AFP are all elevated. The urologist told us the CT showed 2 small masses on the opposite side in the lymph nodes, which he says is weird because the pathway for spread should be on the same side as the tumor. He called the other masses, unknown because they are not a full 2cm. He also said the breast lump and swollen-ness was hormonal caused by the testicle.

    Okay...so...I am obviously concerned about these "unknown" masses. Has anyone ever not followed the pattern of spreading? Should I not be concerned? To me this all sounds like the more aggressive cancer. We will know next week which type it is, then he says we wait 4 weeks for another bloodtest. Four weeks is so long! Most people say how lucky he is because he is strong, young, and its testicle cancer. Yes I know that is lucky, but I really feel the 2 doctors he first saw could have tested his blood. How hard is it to just make sure. We have now waited almost 6 months because of this. Is this considered "catching it early"?


    Thanks for letting me vent. He just started his senior year of high school...and why did it happen to the child I have the hardest time with? I have 5 kids and the other 4 don't push the same buttons with me. Now I feel even more guilty. Anyone else feel this?

  • #2
    Welcome to the forums, Beth. I'm sorry you had reason to join us, but I'm glad you're here.

    While crossover from the left testicle to lymph nodes on the right side would be very unusual, crossover from right to left is pretty common. Is it the right testicle being removed?

    Do you happen to have the blood test details so that we know how elevated Jason's tumor markers are?

    (By the time I had my orchiectomy over four years ago, my tumor's largest dimension was 9 cm.)

    Hang in there. We're here to support you.
    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


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    • #3
      I don't know exact numbers, but will ask for them. I assume the docs will give me a copy? Yes, his tumor is on the right side.

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      • #4
        By the way, what exactly does this crossover mean?

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        • #5
          Yes, you can get copies of all test results. It seems likely that chemotherapy will be coming. There are lots of members here who have been through it and will be glad to help.
          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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          • #6
            Originally posted by Beth
            By the way, what exactly does this crossover mean?
            It just means spread from one side of the body to the other via the lymphatic system. Spread from the right testicle to retroperitoneal lymph nodes on the left side of the body isn't so unusual.
            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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            • #7
              Dear Beth,

              Allow me to echo Scott's sentiment in welcoming you here. I can understand how overwhelming this must be to your son, to you, and to all of your family. What is important right now is that tomorrow he will be taking the first step towards recovery with the I/O.

              While you will have to wait for the pathology report in order to plot a course of action (which will require the CT scans and bloodwork), once that piece of data is produced, things will probably move very, very quickly. Chances are he will have to begin chemo almost immediately. My suggestion is that you get yourself informed about testicular cancer. A great starter resource is the Testicular Cancer Resource Center. We are here to help as much as possible through this trek. Don't think twice about posting your concerns, fears, and to vent. Everyone here has had experience with this, and you will surely notice that there are many moms in the forum who have done a tremendous job in paving the way for their sons' recovery.

              As far as tomorrow's surgery is concerned, ensure that he does no heavy lifting for 4-6 weeks, and to take the pain meds as needed but not to overdo it, as they can cause constipation. Frozen peas come in handy to alleviate swelling. The procedure itself is quite straightforward (45-60 minutes), and he will be able to walk, though with a wobble, soon after the surgery.

              Stay focused on the treatment, and let us know how things go. Best of luck to your son with the surgery tomorrow and contact us whenever you need,
              "Life moves pretty fast; if you don't stop and look around once in a while, you could miss it." -Ferris Bueller
              11.22.06 -Dx the day before Thanksgiving
              12.09.06 -Rt I/O; 100% seminoma, multifocal; Stage I-A; Surveillance; Six years out! I consider myself cured.

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              • #8
                Thanks

                Thank you Scott! It is nice to have such knowledge at my disposal...I can't imagine going through this now, but imagine 10 years ago before the internet was so vast. I appreciate your fast response. I'll hopefully know more tomorrow, but from what I was told, we won't know for sure for at least 3 weeks That seems so far away.

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                • #9
                  Beth,

                  A pathology report should take no more than a week to obtain (10 days tops). You definitely have to be proactive here, and your son should also push to get things going here. I noticed that you are in Rhode Island. Where is he being treated? I'm in Boston and work as a cancer biologist at the Dana-Farber Cancer Institute; great place to receive treatment.
                  "Life moves pretty fast; if you don't stop and look around once in a while, you could miss it." -Ferris Bueller
                  11.22.06 -Dx the day before Thanksgiving
                  12.09.06 -Rt I/O; 100% seminoma, multifocal; Stage I-A; Surveillance; Six years out! I consider myself cured.

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                  • #10
                    Thank you for your kind words....I wish more people knew more about this disease. It seems that boys are barely educated even though the most common age is 15-35. All our friends and family assured us that he was "too young". I feel this cause is not promoted properly to young men or their families.

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                    • #11
                      Sadly we are at Fatima (no offense to anyone, it's just not our choice hospital)- but only for tomorrow. We have told our docs that we don't want to ever go there if further treatment is required. Our choice is Dana Farber, if possible. I have assumed it wouldn't be needed, but it seems more and more that this won't be over tomorrow. We have fanastic insurance, or so we believe...so I am grateful for that.

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                      • #12
                        Originally posted by Beth
                        Sadly we are at Fatima (no offense to anyone, it's just not our choice hospital)- but only for tomorrow. We have told our docs that we don't want to ever go there if further treatment is required. Our choice is Dana Farber, if possible. I have assumed it wouldn't be needed, but it seems more and more that this won't be over tomorrow. We have fanastic insurance, or so we believe...so I am grateful for that.
                        This is good to know. In the meantime, try to get some sleep. I will drop you a PM shortly.
                        "Life moves pretty fast; if you don't stop and look around once in a while, you could miss it." -Ferris Bueller
                        11.22.06 -Dx the day before Thanksgiving
                        12.09.06 -Rt I/O; 100% seminoma, multifocal; Stage I-A; Surveillance; Six years out! I consider myself cured.

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                        • #13
                          Originally posted by Beth
                          It seems that boys are barely educated even though the most common age is 15-35.
                          You pegged that one right on, Beth.
                          I'm so sorry to read about your son- always remember, this disease is highly treatable.
                          I agree with Fed- you should get your path report ASAP, then go to the lab and get the slides. You will need them if you choose a second opinion.
                          I had my slides read three times. Put that insurance to work!
                          Best of luck with the I/O. And Beth, don't feel guilty- you are doing everything you can.
                          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

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                          • #14
                            Beth:
                            My son had tc on the right side and the left side lymph nodes were effected. As others said the I/O is not a difficult operation. You son will be home with you that evening. Just make sure you have seat pants for him to wear. A belt will be painful. Push hard to get the path report. It should only take about a week not three weeks. Get copies of everything and a second opinion on the pathology is a very good idea. If your son needs chemo, which it sounds like he will, you should consider sperm banking. Your urologist should have a list of places to do that. Good luck and I'll be watching for your posts.
                            By the way, my son was treated quite successfully and there is no reason to think anything different will happen with your son.
                            Last edited by dadmo; 10-02-07, 10:26 AM.
                            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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                            • #15
                              Hi Beth,

                              Why don't you gather your guilt and turn it into anger towards the doctors who missed the diagnosis in the first place! You're not the expert and you weren't the one who made the wrong call.

                              My son had his testicle removed on a Thurs. and the Wed. after he got the pathology report. You will have to be very aggressive with your doctors and push them for the report. While your son has a high probablility of being cured, it's still cancer and the doctors should have a sense of urgency about it.

                              Beth, read, read, read everything you can about this disease and you will know what questions to ask and what demands to make. Since your son is a minor, you can be completely involved in his treatment.

                              You're right--it won't be over today and I'm glad to hear you've already decided on Dana Farber for additional treatment. There are a lot of great posts on this site about how to handle chemo, and I think it's a good idea for you to read as many as you can since it's probable that your son will be facing it.

                              Since you have decided on Dana Farber, keep in touch with Fed. He's the coolest smart guy I've ever met!!!

                              Diane

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