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Newly Diagnosed - Feeback wanted

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  • Newly Diagnosed - Feeback wanted

    Hello Everyone-

    I have been skimming these forums for weeks, since my ultrasound confirmed cancer. Seems like a great place for support/information. Below is a quick rundown of my case...

    Mid September - Felt slight pain, followed by a small lump on right testicle. Appointment with Urologist scheduled, who then scheduled ultrasound.
    10/17 - Ultrasound confirms solid mass, cancer presumed.
    10/20 - CT Scan shows no spread, AFP - 2.9 BHCG - 51
    10/27 - Right I/O
    11/6 - Pathology - Mixed Germ - 90% EC, 10% yolk sac. 4.2 cm at largest.
    PT2 because of LVI (Dr. said it wasnt all bad because it did not get to blood vessels, not sure what that means?)
    12/8 - will get blood work to see if the leveled off

    I guess I am just looking for feedback. My Dr. seems to think surveillance is the route to go if blood work comes back good. He spoke to me about the less is more approach treatment is headed in. I also realize that my chance of relapse could be 40-50%.

    Thanks for the feedback in advance!

  • #2
    Hi and welcome,

    Without evident spread on CT scan you are still good candidate for surveillance with the chances for relapse as you are mentioning (40-50%). Other possibility is adjuvant chemo (2x BEP). I would be fine with surveillance and ready for 3x BEP as a treatment upon recurrence - which is actually my current situation

    Good luck with any decision you choose !
    Last edited by JohanusEU; 11-19-14, 12:25 PM.
    07 Aug 2014 - USG showed 5mm mass, bHCG: 6,45 AFP: 4,58
    08 Aug 2014 - left I/O surgery - NSGCT (70% Mature Teratoma, 30% Embryonal Carcinoma), pT1N0M0, no LVI invasion
    22 Aug 2014 - Markers after I/O: bHCG: 0,05 AFP: 3,40 - CT scan negative
    --- on surveillance ---

    20 Oct 2014 - bHCG: 30 AFP: 8
    04 Nov 2014 -bHCG: 270 (!) AFP: 26, CT shown 2,5 x 1,5 cm para-aortic lymph node
    --- recurrence confirmed ---
    12 Nov 2014 - MRI of brain - clear, re-staged to IIB,
    3x BEP started, changed to 4x BEP
    08 Jan 2015 3x BEP finished (bHCG: <0,1 AFP: 4,88), 4th cycle cancelled
    21 Jan 2015 CT scan clear - para-aortic lymph node shrunk to 0,6 x 0,4 cm

    --- on surveillance ---
    [2015 - all clear]
    [July 2016 bHCG:<0,1 AFP:3,24, MRI scan clear]

    Comment


    • #3
      Depending on where you are and who your specialists are, you may also have the option of adjuvant 1xBEP (for which there is an increasing amount of research indicating good efficacy), which is what I went for to substantially reduce the chances of recurrence.

      I'd recommend having a look around the research for stage 1 NSGCT treatment options and discuss your options with your oncologist. In my case, surveillance or adjuvant chemo were given to me as options and I decided that the short chemo now rather than potentially long chemo at some later date worked better for me and my circumstances, but for others surveillance to potentially avoid any unnecessary treatment in any case could be preferable.

      Either way, your long term prognosis should hopefully be great.

      All the best,
      ​- T
      30 Jul 14: Discovered lump
      31 Jul 14: GP referral to specialist
      4 Aug 14: Clinical diagnosis of tumour, blood samples taken, CT scans, USS (confirming ~2cm tumour)
      8 Aug 14: Left radical orchidectomy (plus test results back: CT normal, no mets; blood markers slightly elevated: AFP 14.16, HCG 4.9, LDH 149)
      29 Aug 14: Pathology results: Stage 1A Mixed Non-Seminomatous Germ Cell Tumour (composition: Yolk-sac Tumour and Mature Teratoma)

      24 Sep 14: Started precautionary adjuvant 1xBEP
      23 Oct 14: All clear; on surveillance

      Comment


      • #4
        How did you handle X1 Bep? If that is presented to me, i will have to consider it.

        Comment


        • #5
          It was ok for me, fortunately. There's a long list of potential side effects, but the only things I really had were initial nausea (kept largely in check with the meds), tiredness (kept in check with lots of sleep), and some temporary taste changes and tinnitus. Oh, and hair loss, but I'm actually quite keen on my new hairstyle. :-)

          That said, it's no walk in the park, but I'm glad I only had to do one cycle rather than more (for which I gather the risks of longer-term side-effects also accumulate). And now I feel a little more comfortable about the remaining surveillance (though the worry hasn't really gone away)...

          - T
          30 Jul 14: Discovered lump
          31 Jul 14: GP referral to specialist
          4 Aug 14: Clinical diagnosis of tumour, blood samples taken, CT scans, USS (confirming ~2cm tumour)
          8 Aug 14: Left radical orchidectomy (plus test results back: CT normal, no mets; blood markers slightly elevated: AFP 14.16, HCG 4.9, LDH 149)
          29 Aug 14: Pathology results: Stage 1A Mixed Non-Seminomatous Germ Cell Tumour (composition: Yolk-sac Tumour and Mature Teratoma)

          24 Sep 14: Started precautionary adjuvant 1xBEP
          23 Oct 14: All clear; on surveillance

          Comment


          • #6
            Thanks for the feedback... It is comforting to know that people are doing well with stuff i will potentionally be going through. I'm sure you all already know, but the waiting and not knowing can be quite paralyzing mentally at times. Any thoughts on dealing with the times when it is the only thing that you have on your mind?

            Comment


            • #7
              Originally posted by jmb5026 View Post
              Thanks for the feedback... It is comforting to know that people are doing well with stuff i will potentionally be going through. I'm sure you all already know, but the waiting and not knowing can be quite paralyzing mentally at times. Any thoughts on dealing with the times when it is the only thing that you have on your mind?
              Just know that you will get through this, as so many of us have before you. While TC may be all you think about right now, in a year or so you will be hard pressed to even think to stop into this forum to say "hello world!"

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

              Comment


              • #8
                Ha Ha Dave! Well said and very true!
                Diagnosed 4/17/08
                Right orchiectomy 4/18/08
                Pure choriocarcinoma; HCG 715,000; lungs, lymphnodes, liver, and random other places
                4X VIP chemo at IU with Dr. Einhorn 4/25/08-7/4/08
                HCG down to 7.2 10/28/08
                HCG back up to 198 12/29/08
                1 X PVB 1/2/09-1/6/09
                2 X HDC w/ stem cell rescue 2/4/09-3/14/09
                Follow-up with Dr. Einhorn 4/22/09
                HCG 1.2
                3 rounds, 21 days, twice daily, VP-16 50mg 4/24/09-7/10/09

                http://www.caringbridge.org/visit/johncovell

                Comment


                • #9
                  Just a little update... My tumor markers returned to normal levels! I meet with my Dr tomorrow to see how to move forward.

                  Comment


                  • #10
                    Great news!
                    StevePake.com | Please follow me on Gab
                    (Social Media with actual privacy, cancer support groups, encrypted secure chat & more)

                    Feb 2011, Stage IIB, 4xEP, RPLND, PTSD
                    My Survivorship Thread | All of my Blogs
                    C
                    ONTACT ME ANYTIME! http://www.tc-cancer.com/forum/core/...lies/smile.png

                    Comment


                    • #11
                      Another update....

                      Went to my urologist to discuss my bloodwork

                      bhcg - went from 51 to undetectible
                      AFP - went from 2.9 to 4.4

                      I initilally thought this was great news, but my urologist is sending me to an oncologist between now and my next ct/bloodwork. The Afp that went up to 4.4 seemed to be his reasoning, because of the 10% yolk sac component. I was under the impression that an AFP at 4.4 was very normal and wouldnt be a cause for concern.

                      On the other hand i am kind of happy because i feel like i shouldve met with an oncologist from the beginning.

                      I guess i just feel in limbo again with not knowing what the oncologist is going to say to me. It feel like everytime i have an appointment i leave with a new worry. you could say i am just venting at this point.

                      ONCE AGAIN... just looking for feedback from a well educated community of people going through the same thing!

                      Comment


                      • #12
                        Anyone? is this AFP from 2.9 - 4.4 cause for concern?

                        Comment


                        • #13
                          I wouldn't be overly concerned with an AFP increase like this. Her is a recent commentary about AFP from Dr. Einhorn http://jco.ascopubs.org/content/32/1....full.pdf+html
                          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
                          Surveillance...
                          Founded the Testicular Cancer Society
                          6.29.13 Summited Mt. Kilimanjaro for 7th Cancerversary

                          For some reason I do not get notices of private messages on here so please feel free to email me directly at mike@tc-cancer.com if you would like to chat privately so as to avoid any delays.

                          Comment


                          • #14
                            Thanks... Judging by the article, it doesn't seem like an increase like that is much to worry about. I'm interested to see what the oncologist thinks.

                            Comment


                            • #15
                              Definitely see what the oncologist has to say and be sure to keep up with your check ups.
                              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
                              Surveillance...
                              Founded the Testicular Cancer Society
                              6.29.13 Summited Mt. Kilimanjaro for 7th Cancerversary

                              For some reason I do not get notices of private messages on here so please feel free to email me directly at mike@tc-cancer.com if you would like to chat privately so as to avoid any delays.

                              Comment

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