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Newly Diagnosed and Scared (Washington, DC)

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  • Newly Diagnosed and Scared (Washington, DC)

    Hi Everyone,

    I had been a lurker for a while but decided to join after I received the dreaded phone call from my Urologist this morning.

    I've read through some of the personal stories other members have recounted of their experiences and I am encouraged and hopeful for the best.

    To give a brief background, I am 32 in the Washington, D.C. area, married with 2 little girls. I noticed a lump in my right testicle around January 2017 but couldn't distinctly tell if it was a "lump" or maybe my testicle was just deformed in a way. I never really remembered this anomaly before so I wasn't clear if this was pre-existing or a new issue. I had my wife check and she too said it doesn't really feel like a lump...maybe I'm looking into it to much? Over the next several months, I would continue to check and ask but I knew something was off when I would get random aches down on the side of the testicle. I had my annual physical in April and figured I'd just bring it up then. As soon as my doctor felt the testicle, I was referred for an ultrasound and then everything else just happened so fast.

    I am still recovering from my R I/O and am thankful that overall the healing process has been going smoothly. I am about 5 days in and able to lightly walk and drive myself around. I am planning to return to work tomorrow.

    Below is my timeline of the events:

    1/2/2017 - discovered lump on right testicle
    4/28/2017 - annual physical/GP checked lump
    5/5/2017 - ultrasound detected 3 masses- lower pole 0.6x0.8x0.4cm, midpole 0.5x0.5x0.6cm, upper pole 1.4x1.5x0.9cm
    5/9/2017 - met w/urologist to discuss ultrasound results/pre-op blood work - markers were normal
    5/11/2017 - I/O performed on right testicle
    5/15/2017 - pre-surgery blood work: afp=2, ldh=196, hcg= <5
    5/16/2017 - pathology confirmed seminoma
    5/16/2017 - chest xray done; waiting for results

    Scheduled for my ab/pelvis CT scan on May 23.

    I am scared and very anxious. I can't help but cry when I look at my 2 kids...thoughts of me not being around to watch them grow up scares me to death. I am trying to take it one day at a time, but it's just so hard. I know spending my time on Google is the worse thing I can do at this point, but I am glad I found this site. The information and support from this group is amazing.

  • #2
    Hey Joe, welcome and sorry to welcome you!

    Your pre op blood work is good, but with Seminoma in most cases it is good. Seminoma is also slightly better than non-seminoma in terms of cure rate and aggression which is good.

    At this point, there is a 75% chance that your CT will come back clear, and you will either have 1 cycle of Carbo chemo (which is more than manageable) or pure surveillance. The choice will depend on your pathology and LVI etc, but both are good options with 99% cure rates.

    Worst case is that your CT doesn't come back clear. If that happens you most likely would face 3xBEP, possibly 4xBEP. There are more variables in this case depending on the spread but the cure rates are still quite high, still over 90+% in most cases. The treatment is just harsher, but it is still manageable.

    At this point try to relax, as testicular cancer has come a long way in the past 40 years and is now quite curable in the vast majority of cases, so I wouldn't be thinking about not being around to see them grow up.

    Have you done any sperm banking yet?

    Lastly don't google things, you always hear worst case situations unless you look in reliable places. Remember, most people get away with light treatment so really don't have anything to post about so they don't. As a result you often read some of the worst case situation cases. Good luck with the results.
    24 year old diagnosed 6/11/16
    Pre/o markers 9/11/16 - HCG 15, AFP 210, LDH 539
    Pre/o CT Clear
    Non-seminoma (80% embryonal carcinoma, 10% yolk sac tumour, 5% chorea carcinoma, 5% seminoma)
    Post-op markers - 14/12/16 - HCG 35, AFP 1050, LDH 430
    Post-op CT with one enlarged lymph node - 1.5x1cm
    Borderline stage 2B/3B
    BEPx3 started 15/12/16 (Borderline BEPx4 - Advise of Dr. E to only do 3 rounds)
    CT and markers clear - in remission - 28/2/16


    • #3

      Given that your testicular masses are small I'd say that your recurrence risk will be low. Probably < 20%. Likely you will be Stage 1 A or B. If your CT comes back clear, and since you are marker negative, I would say you will be offered 3 options:

      1: Surveillance
      2: Adjuvant Chemo (1 or 2 cycles of Carboplatin)
      3: Adjuvant Radiation

      The choice will be up to you; and only you. You will have to weigh the risks and your tolerance of them and decide.

      You caught this early....far earlier than I did. I would not be afraid. Focus on the good points as you have far more of those then bad. I know that this advice is easy to say. I remember my experience with this crap 3 years ago. I am now stronger and better for it. Life is better now than before in many ways. Ultimately more good of it came than bad.

      We're here for you for advice, help, or just listen to you vent, etc. You’ve found a great group of guys and gals to hang with here in this most exclusive club.
      If you have any questions concerns about the next steps, etc in this journey don’t hesitate to ask away….we’ll answer.

      - Matt
      March 4th 2014: [AFP = 2.5; bHCG = 6; LDH = 618]
      March 13th: Left IO 100% Classic Seminoma
      6.3 x 5.1 x 3.8 cm, no invasion of anything
      LDH never fully normalized
      Stage: IS
      Watchful Waiting
      May 1st: promoted to Stage IIB with two PET active tumors in the para-aortic lymph nodes 2.5 & 2.4 cm
      May 12th: started 3xBEP
      Neupogen during Cycle 2 and 3
      July 8th: Last Bleo shot of Cycle 3 -- chemo completed !
      August 4th: Post Chemo CT/PET scan
      September 4th: Port removed
      January 11th 2017: 2 & 1/2 YEARS ALL CLEAR !


      • #4
        Hey Joe! We're in Fairfax. Give a shout if you need anything. Mom to 23 yo, stage 3c, 2 year survivor. Cathy


        • #5
          Thank you all for the warm welcome and words of encouragement. I think I just needed to vent; I had been bottling up my emotions trying to stay strong in front of my wife and kids. I am hopeful for an optimistic outlook and the support from this community is priceless.

          Cathy, I'm in the Sterling area. Are there any particular oncologists in the area you would recommend should the diagnosis progress that far?


          • #6
            Joe, I was in the same place as you with two young girls, 5 and 7 years old. Although I had a larger tumor at 5x7 cm, for I had waited some time before getting to the Dr.

            The hardest moments were at church. Our girls liked to sit with us during the service. I often teared up completely during the music. Needless to say, my wife and I had very focused prayers.

            Radiation treatments for seminoma followed IO and all is well these 7 years later.

            It is a hard road to travel for a while, but our journey did not end then. And our girls never really knew what was going on.


            • #7
              Prayers to you my friend. I'm sure you caught it early and you'll be fine. I waited a long time to go to the doctor after I notice something and kept thinking the pain and swelling would go away.


              • #8
                Thank you, Houtex and Risk235. I'm praying for a favorable outcome and making the most of each day now. This experience has certainly taught me to live life to the fullest and bring closer to heart those people who are most important in my life.


                • #9
                  JOE~ The waiting is one of the most difficult parts. Keep us updated.
                  17 year old Grant dx 12/21/16
                  pre/o markers 12/21/16- HCG:1065.15,AFP:298.8,LDH:1119
                  pre/o CT Scan 12/22/16 normal
                  r/o 12/22/16
                  Post r/o Elevated Markers with INCREASE 4 weeks post r/o;
                  PATHLOGY: mixed maligent germ cell 8.6 x 6.2 x 5.9 cm

                  -80% Embryonal, 10% Yolk Sac, 5% Teratoma, 5% Choriocarcinoma w/LVI within Spermatic Cord and invasion into Rete Testis
                  2nd CT scan on 1/24/17 3 nodes 2 over 2.5, one over 3.5
                  BEP x 3 1/27/17
                  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: pathlogy Teratoma , 3 large masses removed


                  • #10
                    Hi Joe,

                    Waiting can definitely be the hardest part. The CT scan should give you more information but as mentioned, even if it shows spread, your survival rates are over 90% so it is a matter of the crap you have to go through but not a matter of if you will live or not. If it was me I would be anticipating a long healthy future after I got over this initial hump.

                    If it was me and my CT was positive then I would head over to Johns Hopkins and see Dr. Phillil Pierorazio as I am not familiar with the doctors in DC and I know Phil is great.

                    Oct. 2005 felt lump but waited over 7 months.
                    06.15.06 "You have Cancer"
                    06.26.06 Left I/O
                    06.29.06 Personal Cancer Diagnosis Date: Got my own pathology report from medical records.
                    06.30.06 It's Official - Stage I Seminoma
                    Founded the Testicular Cancer Society
                    6.29.13 Summited Mt. Kilimanjaro for 7th Cancerversary


                    • #11
                      Hey Joe! I'm local! Where in the DC area are you? I'm in Rockville and know some good docs in the area. Dr Pierorazio that Mike mentioned is a GREAT guy and an established expert for testicular cancer. Give a shout, happy to help out in any way I can. I was 33 at diagnosis and had two young kids also, and felt all of the same things that you are right now.
                      Young Adult Cancer Survivorship by Steve Pake
                      Feb 2011, Stage IIB, 4xEP, RPLND, PTSD
                      My Survivorship Thread
                      All of my Blogs


                      • #12
                        HI Joe

                        Great to hear that everything is under control and those blood markers are a great sign. I can tell you that waiting is the hardest part.....after chemo! As long as you don't have any lymph nodes show up you should be good on surveillance. If you are looking for a great video on T.C. check this one out here, it goes into a good amount of detail and can answer any questions you might have. . Whether or not you have L.N. show up the treatments for T.C. will take care of it and you WILL be there for your girls!

                        Keep us updated!


                        • #13
                          Originally posted by S P View Post
                          Hey Joe! I'm local! Where in the DC area are you? I'm in Rockville and know some good docs in the area. Dr Pierorazio that Mike mentioned is a GREAT guy and an established expert for testicular cancer. Give a shout, happy to help out in any way I can. I was 33 at diagnosis and had two young kids also, and felt all of the same things that you are right now.

                          Hi SP, I'm in the Sterling area. Any recommendations for doctors out that way? Thank you!


                          • #14
                            I just received my chest x-ray results and all clear. Thank you, God! I am praying my CT scans come out all clear as well. Will continue to keep everyone posted and thank you again for all the support. This site rocks!


                            • #15
                              My son goes to Hopkins now. I think it's worth the time to drive there to see Dr Pieorazio. If nothing else, blood work is done in a matter of hours and scan results too. Please see a really good oncologist and keep up with surveillance appointments.