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Introduction & the story thus far

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  • Introduction & the story thus far

    Hi Everyone,

    First off, I want to thank you all for contributing to this site, it has been immensely helpful to me the past few weeks!
    My name is Drew and I'm a newbie uniballer. I work for a world renowned cancer research foundation in Seattle (though my job is totally unrelated to cancer), and am generally pretty comfortable with dealing with cancers of all sorts. Here is where I'm at today:

    Just before thanksgiving my Mother in law was diagnosed with breast cancer and scheduled a lumpectomy, followed by chemo etc. Being so comfortable around cancer, I committed myself to being her cancer ally, and going to all of the appointments and such. On the day of her surgery, which is an 8 hour wait at the hospital, I noticed a lump on my right testicle while showering. I didn't feel the testicle with my hand, I could feel the difference when water ran over it, it was that sensitive.
    Now for some back story, I have had an ultrasound done a few years ago on the left testicle when I felt a lump, that turned out to be nothing, just a hydrocele or something, it went away. However, when I had that u/s the radiologist pointed out to me that I had tiny calcifications all throughout the right ball, and basically told me I was a ticking cancer time bomb, so be sure to get an ultrasound done very 3 months. Well, that u/s cost me $1000 out of pocket, so naturally I declined to schedule the followups, and rather just check the boys (then) religiously for changes.

    So while I'm waiting at the hospital for MIL in surgery, I thought "I wonder if I can get someone here to check this lump out super quick and be really efficient?".
    The answer is yes! Long story, less long, I saw a doc who gave that ball the squeeze of a lifetime, got an ultrasound, and had a positive diagnosis by three different doctors for the two very large testicular masses in righty. ALL BEFORE SHE WOKE UP. lol Life is funny. That was a fun conversation, believe me!

    So I went to the urology consult, was informed of the I/O and did all the bloodwork. All of my tumor markers were within the range of normal, no part of the bloodwork raised alarm or made a strong case for any type of cancer. The Chest X-ray came back free and clear (Whew!), But the CT came back with two "positive" lymph node readings. Gulp!

    So fast forward to today, and I'm five days post I/O and have to say "@#$*!%& ouch!". They really undersold me on how much this would suck. I was expecting a little slice here, a stitch or two there, instead it felt like they cut out my ball with an electric hedge trimmer. Anyway, five days out, and I'm starting to feel better and getting back to myself. My pathology should be done tomorrow, which ironically, is the MIL's first chemo appointment, so I'll be sitting there with her when I get the report. Sensing a pattern here? I think I'm sensing a pattern...

    I know that nothing can be done or decided until I have that report in my hands, so this is really just more of a vent than anything, but thanks for reading. I'm really tired of everyone giving me the sad cancer eyes. Just knowing that you guys are all too familiar with this is comforting in some way.

    I will end with one question that I can't seem to find an answer to. Are enlarged lymph nodes with testicular cancer ever NOT a spread? Or does it mean the cancer has reached the nodes every time?

    Thanks all!

  • #2
    Drew,

    Sorry to welcome you to this elite club. You are taking all this in stride and that's a good thing !

    So far we don't know where these "positive" lymph nodes are located and what size they are. Typically if they are in the retroperitoneal or mediastinum area and > 1cm then they are highly likely to be from TC. I only say TC given your recent TC diagnosis and those are the likely lymphatic landing zones for mets coming out of the testes.

    Chemo is by no means "fun", but it could be entirely more "fun" going through it with your MIL....particularly if you get along very well and can find ways to make it fun, laugh at yourselves, laugh at the cancer, etc. I met wonderful people going through my chemo and met new friends there, however I was not going through it with someone else...I wish I had a "chemo buddy" then. Basically what I am saying is that if you have to go down that path, make the best of it for both of you.

    Any ways, until you get the pathology and know more about what the CT is showing there is nothing to do until then...and you already know that.

    Keep us posted, we are here for you.

    - 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 !

    Comment


    • #3
      Thanks Matt,

      I totally second the sentient there! My MIL and I get along very well, and are pretty close friends, I scored in that department. I'm not thrilled about treatment and neither is she, but we have both fully taken advantage of teamwork thus far, and will keep it that way.
      I'll definitely post an update onceI get the report back, but in the meantime, below are the pertinent findings from the CT: Narrative

      [HST]: testicular mass, evaluate for metastasis

      CT ABDOMEN AND PELVIS, with contrast, : 12/20/2016 3:55 PM.

      HISTORY: testicular mass, evaluate for metastasis.

      TECHNIQUE: Multi slice spiral CT, with image acquisition in
      contiguous axial sections through the abdomen and pelvis following
      oral contrast administration and during uneventful intravenous
      administration of [125 cc's non-ionic Optiray 320 ]contrast, followed
      by saline flush. Sagittal and Coronal reformations performed.

      COMPARISON: None.

      FINDINGS:
      LUNG BASES: Unremarkable.

      LIVER AND SPLEEN: Normal in size with no focal masses.

      GALL BLADDER AND BILE DUCTS: Unremarkable with no gall stones and no
      biliary tract dilation seen.

      PANCREAS: Unremarkable.

      AORTA AND IVC: Unremarkable.

      LYMPH NODES AND PERITONEAL SPACE: There are lymph nodes in the
      retroperitoneum at the level of the renal hilum most of which are
      normal in CT measurement criteria. The largest between the aorta and
      left kidney measures 13.9 x 6.9 and 15.1 x 7.2 mm..

      BOWEL: Unremarkable.

      ADRENALS AND KIDNEYS AND URETERS: Unremarkable.

      BLADDER AND PROSTATE: Unremarkable.

      ABDOMINAL WALL: Unremarkable.

      BONES: Unremarkable.




      Comment


      • #4
        Your two nodes on CT sound suspicious for sure. They are in the exact same areas as mine were. Makes me wonder about it being Seminoma....that's the typical landing place for it.

        That's awesome that you and your MIL get along that well !

        Did your blood work include bHCG, AFP, and LDH ?

        - 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 !

        Comment


        • #5
          I don't want to play doctor here, but from that report, I would be expecting that chemo will be prescribed. Enlarged node in that area tend to be assumed to be TC spread.

          Dave
          Jan, 1975: Right I/O, followed by RPLND
          Dec, 2009: Left I/O, followed by 3xBEP

          Comment


          • #6
            Agree with Dave. You are in a very good place though, catching it at stage 2a your chances of full cure are very good.

            <- is currently drinking contrast for my 18mo follow up CT/bloodwork.
            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!
            5/10/17 all clears up to this date!

            Comment


            • #7
              I am surprised that you guys have to drink down the contrast. That's not something I've had to do. Instead I get hooked up with a catheter in my arm which is hooked up to a Power Pump that then pumps the contrast in while you are getting the scan.

              +1 on the likelihood of chemo Stage 2A.

              Did you get your pathology report yet ?

              - 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 !

              Comment


              • #8
                Thanks for the input guys! Path report is in and reads pretty good I think. One pure seminoma measuring .98 inches! That's one heck of a lump
                Blood markers were all normal to begin with, I'm guessing now I'll repeat all of that again. Off to see my doc this morning, I'll post an update after.

                P.s. On contrast, I still have to drink it and get the jet pump, I hate that thing! It makes my mouth taste like horseradish for a minute afterwards

                Comment


                • #9
                  Originally posted by JeskiM69 View Post
                  I am surprised that you guys have to drink down the contrast. That's not something I've had to do. Instead I get hooked up with a catheter in my arm which is hooked up to a Power Pump that then pumps the contrast in while you are getting the scan.
                  My recreational understanding is that oral+iv contrast is used for abdominal CTs while just IV would be used for chest. That's been my experience (at multiple facilities)

                  Comment


                  • #10
                    I guess each place just does it differently and it may be based on the type of contrast used, etc.

                    I hope it tastes ok

                    - 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 !

                    Comment


                    • #11
                      Thanks for sharing the great news man !

                      Comment


                      • #12
                        Update: Saw the Oncologist yesterday and the prescription is surveillance. That's great I think?
                        Apparently in his opinion the lymph nodes aren't suspicious enough to start chemo unless they measure over 1 cm in both length and width. Mine only exceed 1 cm in one direction, so its constant CT's for me until or unless they change size.
                        I also took the liberty of scheduling a second pathology work up with Seattle Cancer Care Alliance, since they are accessible to me, I figure it couldn't possibly hurt to have a whole second team double check the details.

                        Has anyone else heard of the 1cm x 1 cm rule? That was news to me, I was completely expecting him to ask when I'm available to drop a port in, not even consider surveillance. Perhaps it's a unique function of pure seminomas and wouldn't apply to the other types.

                        Comment


                        • #13
                          There's various "rules" around the 1 cm mark. Since you are just barely over 1 cm you are still highly suspicious for mets. (IMHO).

                          You need to do what's best for you. If at this time you are good with surveillance based on all your results, research, and you oncologists advice then go for it.

                          When is your next scan scheduled for ?
                          When is your next set of bloodwork scheduled for ?

                          Did the onco. mention a PET scan since you are Seminoma ? ... PETs have some utility with Seminoma, particularly with Staging.

                          - 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 !

                          Comment

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