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My 15 year old is newly diagnosed, 3 days post-op.

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  • My 15 year old is newly diagnosed, 3 days post-op.

    Hi everyone! Things have been mostly a blur for the last 12 days. Late on May 7th my 15 year old (he will be 16 in a month) told me he needed to see a doctor because his left testicle was enlarged. First thing Monday morning I was calling his pediatrician to schedule an exam - I was thinking some sort of infection, maybe a cyst. At 3pm Monday we met with his doctor and by 4:30 we had an ultrasound scheduled for the next day & urology the day after.

    Ultrasound showed a 5cm mass, and after meeting with urology surgery for a radical orchiectomy was scheduled for the following Tues, 8.5 days after I first learned of the enlargement. Apparently my son had noticed a slow growth on that side for about 2.5 months before finally realizing it wasn't just going to "go away" like he hoped. He remembers a day he was home from school on break the week of Feb 20th where he said he had horrible pain in "his balls" for about 2 hours, but then it just went away and never any more pain.

    Surgery was a success and he's recovering nicely. We are headed to see a different urologist today for some post-op concerns, since his surgeon is doing surgeries today and not available. Last night he noticed some bright red blood after a BM and he says he wasn't having to strain to go. He also sees some red streaking on his penis and a rash on the underside of his scrotum which is painful to touch. The doc on call last night wasn't concerned, but today his surgeon's nurse advised we have him seen just to be sure with it being Friday and no one available after today to see him until Tues. He also cannot feel anything near the side where the testicle was removed - not the surgery site, but close to where it once was. I assume that will go away as he heals. Any one have a similar experience there?

    After surgery his surgeon told me that his tumor markers were "highly elevated" and that chemo would be needed. But so far that's as far as we have gotten. I'm hoping to get a copy of the lab report today while at his appointment to see his baseline numbers. We have a CT scan and an oncology appointment on the 31st. His biggest concern is preserving his fertility.

    I'm so happy to have found this forum. I work in cancer clinical research, but testicular cancer is totally new to me. I knew nothing before last Monday, this forum has been a wealth of information already. Thank you!
    Mom to Zachary - dx. at the age of 15 - Stage IIIC mixed germ cell
    5.10.17 - Initial diagnosis
    Baseline markers: BhCG: 43,882 AFP: 138 LDH: 328

    5.16.17 - Left Radical orchiectomy (total tumor size 7x5x4cm)
    5.31.17 - CT Scan showed mets to retroperitoneal LNs (5.7x6.4x9.4cm, 1.7x2.6x3.5cm, 3.1x4.5x6.1cm)
    PATH: Mixed germ cell (75% teratoma, 15% embryonal ca, 8% yolk sac tumor, & 2% trophoblastic tumor) Spermatic cord margin, neg. Germ cell neoplasia in situ present.

    Post-op markers: BhCG: 73,837 AFP: 38 LDH: 412

    BEP#1 6.9.17 BhCG:77,721, AFP 34
    BEP#2 7.3.17 BhCG: 210, AFP: 6
    BEP#3 7.24.17 BhCG: 19 AFP: 3
    BEP#4 8.14.17 BhCG: 4.59 AFP: 5

    8.28.17 BhCG 2.46, AFP 6
    9.7.17 BhCG 1.78, AFP 3

    RPLND 9.14.17 - path report showed 100% teratoma in nodes removed! ALL CLEAR!

  • #2
    TC MOM: Sorry you have to be here, but this site is a wealth of TC info and support! First, you need to know what the tumor markers were if they were taken prior to his l/o, than your son's doctor should have Zachary have his tumor markers drawn again to see if they are indeed falling. Depending on the numbers, Zachary might have to have more bloodwork for the next few weeks to follow the tumor markers. The CT Scan was not done yet? Than not only the tumor markers, but what the CT Scan shows, and what the pathlogy shows will figure into treatment plan.

    As far as the numbness, common after the surgery. My son had very little pain, but the same type of "numbness", "discomfort" while things healed for the next couple of weeks. The other concerns are not something my son had, hopefully someone can help.
    I'm so grateful your son finally let you know something was not okay with his testicle.
    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.
    6 months Cancer Free

    Comment


    • #3
      So sorry to hear you're having to go through this with Zachary!! But the main thing it's being taken care of... Doesn't sound right, whatever is happening post op, hope you sort it out soon.

      Comment


      • #4
        Sorry to welcome you and your son to the forum. As you probably know by now, the unknown and the waiting is the worst part. Just hold on to the fact that this cancer is very treatable as you wait for all the answers.

        When it comes to the numbness it probably varies from person to person, but my incision area is numb and along with the crease of my leg/groin and a small part of my inner thigh. Some probably have more, some less. As far as the rash, I cant really help there, hope you get answers quickly.

        As far as what the doctor said about chemo, I think thats a bit harsh to say when the doctors havent gotten all the information yet. Your sons tumor markers may or may not return to normal after the orchiectomy. If they do and theres nothing showing on his ct scans, no chemo . The next step is a ct scan of his chest and abdomen. That will really give you the answers of whether it has spread or not. You'll also need the pathology results. So don't fret just yet. Focus on keeping a good attitude. I feel the urologist over stepped his bounds a bit in telling you your son needs chemo. Leave that to the oncologist . Keep us posted with how your son is doing, theres lots of knowledge and comfort to be found on this forum!
        11/16- Pain/lump in R testicle 11/16- US finds multiple masses 11/16- Right I/O path multifocal largest nodule 2.1cm 100% EC with LVI/rete testis invasion. 12/16- Ct/markers normal stage 1b 12/16- Ct/markers normal 1/17- rplnd pN1 2 nodes 1.8/1.4 cm EC Stage IIA 2/20 ct/markers clear! 3/1/17 started androgel for low T 4/27/17 Relapsed. Multiple lymph nodes in mesentary and few nodes in retriperitoneum. Start 3x bep. Ct after 2nd cycle revealed all masses already resolved! Continue last cycle! 6/26/17 Finished 3x bep!

        Comment


        • #5
          Also, what were your sons bhcg, afp and ldh levels?
          11/16- Pain/lump in R testicle 11/16- US finds multiple masses 11/16- Right I/O path multifocal largest nodule 2.1cm 100% EC with LVI/rete testis invasion. 12/16- Ct/markers normal stage 1b 12/16- Ct/markers normal 1/17- rplnd pN1 2 nodes 1.8/1.4 cm EC Stage IIA 2/20 ct/markers clear! 3/1/17 started androgel for low T 4/27/17 Relapsed. Multiple lymph nodes in mesentary and few nodes in retriperitoneum. Start 3x bep. Ct after 2nd cycle revealed all masses already resolved! Continue last cycle! 6/26/17 Finished 3x bep!

          Comment


          • #6
            HI TC Mom

            Here is a great video on Testes Cancer by Dr. Friedlander of UCSF. https://www.youtube.com/watch?v=RJyvJO3nMLk&t=1071s

            If your son needs to have chemo make sure to ask his Urologist to do a semen analysis before banking. I only found out after I paid and went to bank that my sperm production was shot. It was a costly mistake. I can tell you that if his body is producing little to no sperm certain Urologists can do testicular biopsies to harvest sperm. It is procedurally similar to a vasectomy but obviously more involved. If you're in the Boston area take your son to see Dr. Robert Oates at Boston Medical Center, he is the top Doctor for those kinds of procedures. But, to be honest, your son hasn't even finished puberty, I'm wondering what this will all mean for his hormonal/biological development.

            I wish your family lots of patience during this time and please keep us updated on his progress!

            Daniel

            Comment


            • #7
              Hi from another TC Mum. Good luck with the chemo. sounds like Zachary is a sensible lad so hopefully he will take it well. Take care and keep us posted.

              Comment


              • #8
                Hi TCMum, Sorry to hear Zachary's gotta go through this unpleasant journey. There's a site full of people here who've traveled this path before, and we would love to help.

                Post orchectomy, I had some strange stuff going on on the site where the testicle was. I wouldn't call it a rash. More like a bruise and lump. Streaking on the penis sounds strange to me. If your doctor is not readily available, remember that you can always drop by an ER. Every hospital has a urologist on call that will come take a look immediately. After my second surgery, I made a couple visits to the ER when things didn't look or feel quite right. They called in both urology and surgery consults to check me out. Eventually, they said it was no big deal, but the peace of mind of being looked at is priceless.

                One thing I wanted to add: After the orchiectomy, the tumor marker numbers should start to drop (you just took the tumor out, after all). The decision of chemo or no chemo should be determined by how far they drop, not where they were at or near the time of orchiectomy. These have a half-life of 5-7 days, so it may be several weeks before you can be sure if they have dropped enough. The next steps are to get a pathology and CT. Also, redo those tumor markers until they stop dropping.

                Also, TC is rare. Rare enough that most urologists don't see many cases. Often their knowledge is not complete. I had an oncologist tell me quite wrong information about treatment options, and my urologist, though not as wrong, kept shifting his numbers about risk-profiles under various treatment options. I can't blame them for not being 100% well-versed in this rare disease, but I was happier getting my info from the medical journal articles and from this site, where people have seriously done their homework (and can provide references). So, if your doc is jumping to chemo too quickly, get a second opinion. Get a third. If needed, bring an article printed out to discuss with your doctor. What I'm saying is: Keep them honest.

                Best wishes,
                ​Uno
                11/16/16 Went to primary care complaining of testicular pain. Wrongly diagnosed with epididymitis. Told not to worry, it'll go away on its own.
                12/8/16 Diagnosed with TC in left testicle.
                12/9/16 Left I/O.
                1/5/17 Tumor Markers officially back to normal -- Stage 1A with 70% EC.
                1/26/17 Robotic RPLND using left MSKCC template as primary treatment.
                2/2/17 Pathology results: pN0. No current evidence of cancer. They say I still have a 10% relapse chance.

                Comment


                • #9
                  Also, sperm banking is super easy. Call the place and do it soon (they should already know to test it before freezing, but make sure), so it's one less thing to think about later if you are ready to treat in some way (either chemo or surgery). It's literally as easy as wanking into a cup. That said, you may want to freeze several samples, and you have to wait 2-3 days between each go, so it can take some time.
                  11/16/16 Went to primary care complaining of testicular pain. Wrongly diagnosed with epididymitis. Told not to worry, it'll go away on its own.
                  12/8/16 Diagnosed with TC in left testicle.
                  12/9/16 Left I/O.
                  1/5/17 Tumor Markers officially back to normal -- Stage 1A with 70% EC.
                  1/26/17 Robotic RPLND using left MSKCC template as primary treatment.
                  2/2/17 Pathology results: pN0. No current evidence of cancer. They say I still have a 10% relapse chance.

                  Comment


                  • #10
                    After my orchiectomy I had insane bruising near the inscision and base of my penis, it was black, blue, and purple. This starts going away after about a week and is nothing to worry about. There is a lot of trauma during the procedure that your body is not normally used to in that area. I also was numb underneath the inscision for about a week and as the feeling started coming back I experienced some intermittent nerve pain on my groin, inner thigh, and scrotum. I've read this is common due to trauma to the illiguinal nerve firing surgery but it will return to normal.

                    You're past the first step in this process and I am not too far ahead of you so I know how difficult the waiting can be. It's tough but there is no substitute for waiting, it's a very important part of the staging and will help guide your treatment options. The pathology report will be key, as will the subsequent post op blood tests and CT scan. These things take time. I found that researching helped to keep my mind occupied (just stick to reputable sites) and made me more prepared to make treatment decisions once all the test results were finally back.
                    26 Cleveland, OH
                    3/01/17 - Found lump on right testicle
                    4/21/17 - Went to ER. 4x3.7x2.5 cm tumor in right testicle
                    4/22/17- Pre/op LDH 194, AFP 41, HCG 46, CT scan clear, X-ray clear
                    4/27/17 - Right I/O. Non-seminoma with LVI. 70% EC, 20% Yolk Sac, 10% Teratoma
                    5/16/17 - Markers normalize, CT clear. Stage 1B
                    5/22/17 - Start 1xBEP

                    Comment


                    • #11
                      Originally posted by Joe.shupe22 View Post
                      Also, what were your sons bhcg, afp and ldh levels?

                      First - thanks to everyone for our comments and support! We saw urology Friday evening and the streaking was gone and the "rash" he said looked like abrasions, from them being too rough with the prep. As of last night Zachary is feeling great, and just bruised. His appetite is greatly diminished since surgery, but he is still eating.

                      I did get his baseline tumor markers: BhCG: 43,882 LDH: 328 AFP: 138

                      And yes - I know we need the repeat markers and CT scan first - those are all scheduled for the 31st. I am hoping we can avoid chemo. His urologist was just insistent that his baseline #s would certainly mean chemo is necessary. He knows more than me, but oncology will make that call next week.
                      Mom to Zachary - dx. at the age of 15 - Stage IIIC mixed germ cell
                      5.10.17 - Initial diagnosis
                      Baseline markers: BhCG: 43,882 AFP: 138 LDH: 328

                      5.16.17 - Left Radical orchiectomy (total tumor size 7x5x4cm)
                      5.31.17 - CT Scan showed mets to retroperitoneal LNs (5.7x6.4x9.4cm, 1.7x2.6x3.5cm, 3.1x4.5x6.1cm)
                      PATH: Mixed germ cell (75% teratoma, 15% embryonal ca, 8% yolk sac tumor, & 2% trophoblastic tumor) Spermatic cord margin, neg. Germ cell neoplasia in situ present.

                      Post-op markers: BhCG: 73,837 AFP: 38 LDH: 412

                      BEP#1 6.9.17 BhCG:77,721, AFP 34
                      BEP#2 7.3.17 BhCG: 210, AFP: 6
                      BEP#3 7.24.17 BhCG: 19 AFP: 3
                      BEP#4 8.14.17 BhCG: 4.59 AFP: 5

                      8.28.17 BhCG 2.46, AFP 6
                      9.7.17 BhCG 1.78, AFP 3

                      RPLND 9.14.17 - path report showed 100% teratoma in nodes removed! ALL CLEAR!

                      Comment


                      • #12
                        If that is a comma, and not a period, that bHCG is pretty high and IMHO (I am *NOT* a doctor lol) there is a good chance the CT scans find something. Everyone hopes to avoid chemo, but I would start mentally preparing for it.
                        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 - 9/18/15: 4xEP
                        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!
                        9/18/2017 all clears up to this date!

                        Comment


                        • #13
                          Originally posted by biwi View Post
                          If that is a comma, and not a period, that bHCG is pretty high and IMHO (I am *NOT* a doctor lol) there is a good chance the CT scans find something. Everyone hopes to avoid chemo, but I would start mentally preparing for it.

                          That is indeed a comma. It was actually "43882.08" on the report. We are preparing for chemo, but hoping for the best.
                          Mom to Zachary - dx. at the age of 15 - Stage IIIC mixed germ cell
                          5.10.17 - Initial diagnosis
                          Baseline markers: BhCG: 43,882 AFP: 138 LDH: 328

                          5.16.17 - Left Radical orchiectomy (total tumor size 7x5x4cm)
                          5.31.17 - CT Scan showed mets to retroperitoneal LNs (5.7x6.4x9.4cm, 1.7x2.6x3.5cm, 3.1x4.5x6.1cm)
                          PATH: Mixed germ cell (75% teratoma, 15% embryonal ca, 8% yolk sac tumor, & 2% trophoblastic tumor) Spermatic cord margin, neg. Germ cell neoplasia in situ present.

                          Post-op markers: BhCG: 73,837 AFP: 38 LDH: 412

                          BEP#1 6.9.17 BhCG:77,721, AFP 34
                          BEP#2 7.3.17 BhCG: 210, AFP: 6
                          BEP#3 7.24.17 BhCG: 19 AFP: 3
                          BEP#4 8.14.17 BhCG: 4.59 AFP: 5

                          8.28.17 BhCG 2.46, AFP 6
                          9.7.17 BhCG 1.78, AFP 3

                          RPLND 9.14.17 - path report showed 100% teratoma in nodes removed! ALL CLEAR!

                          Comment


                          • #14
                            Originally posted by unotesticulo View Post
                            So, if your doc is jumping to chemo too quickly, get a second opinion. Get a third. If needed, bring an article printed out to discuss with your doctor. What I'm saying is: Keep them honest.

                            Best wishes,
                            ​Uno
                            Thanks Uno - we have a team of 3 oncologists to assess his case already. Two in peds and 1 adult that I work with. So while he will see one, the other two will review his case as well. I may ask to have them present his case in an upcoming tumor board too. I don't want to jump too fast, but don't want to drag our feet either.
                            Mom to Zachary - dx. at the age of 15 - Stage IIIC mixed germ cell
                            5.10.17 - Initial diagnosis
                            Baseline markers: BhCG: 43,882 AFP: 138 LDH: 328

                            5.16.17 - Left Radical orchiectomy (total tumor size 7x5x4cm)
                            5.31.17 - CT Scan showed mets to retroperitoneal LNs (5.7x6.4x9.4cm, 1.7x2.6x3.5cm, 3.1x4.5x6.1cm)
                            PATH: Mixed germ cell (75% teratoma, 15% embryonal ca, 8% yolk sac tumor, & 2% trophoblastic tumor) Spermatic cord margin, neg. Germ cell neoplasia in situ present.

                            Post-op markers: BhCG: 73,837 AFP: 38 LDH: 412

                            BEP#1 6.9.17 BhCG:77,721, AFP 34
                            BEP#2 7.3.17 BhCG: 210, AFP: 6
                            BEP#3 7.24.17 BhCG: 19 AFP: 3
                            BEP#4 8.14.17 BhCG: 4.59 AFP: 5

                            8.28.17 BhCG 2.46, AFP 6
                            9.7.17 BhCG 1.78, AFP 3

                            RPLND 9.14.17 - path report showed 100% teratoma in nodes removed! ALL CLEAR!

                            Comment


                            • #15
                              Thanks for the update, while his markers are pretty high, it's important to see the CT scan as well. I would also suggest including a urology oncologist if you haven't already. They will usually be able to explain the surgical options better than a medical oncologist. No matter what ends up happening with his staging this is VERY curable and the treatment is very well laid out. Check out NCCN website which is very helpful. https://www.nccn.org/professionals/p...testicular.pdf
                              26 Cleveland, OH
                              3/01/17 - Found lump on right testicle
                              4/21/17 - Went to ER. 4x3.7x2.5 cm tumor in right testicle
                              4/22/17- Pre/op LDH 194, AFP 41, HCG 46, CT scan clear, X-ray clear
                              4/27/17 - Right I/O. Non-seminoma with LVI. 70% EC, 20% Yolk Sac, 10% Teratoma
                              5/16/17 - Markers normalize, CT clear. Stage 1B
                              5/22/17 - Start 1xBEP

                              Comment

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