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  • Post Chemo Advice Regarding Active Surveilance/RPLND

    Hey all

    I am 29 year old, who was diagnosed with TC in February, below is my exact diagnosis. On May 10th I finished 3x BEP, and just had my first scan post Chemo last week. As you can see from the CT scans it has been shrinking, but isnt the magic number <1CM? Would RPLND be something that I would have to do, and or has anyone had instances where it takes some time for it to shrink all the way to that magic number? Secondly, my concern is if it takes time to shrink or doctor suggests surveillance, could it spread to other areas during that time? Lastly, I had a lung nodule, which hasn’t changed, and doctors most likely say it could be from an infection, any concerns there?

    Diagnosis
    - Mixed germ cell tumor, stage IIB - Mixed germ cell tumor‐ 90% seminoma, 10% embryonal ﴾pT1b N2 M0 S0 possible IIIA 5 mm lung nodule

    CT Scan on Lymphnodes
    - Pre Chemo: 5.0 x 2.4 CM
    - After Cycle 1: 3.8 x 1.6cm
    - First Post Chemo Scan: 3.2 x 1.4cm


    AFP
    - 2/25: 2.1, 3/3: 2.3, 3/22: 5.5, 3/29: 7.9, 4/5: 3.7, 4/12: 11.7, 4/15: 7.6, 4/22: 7.1, 4/22: 7.1, 5/3: 20.7, 5/10: 10, 5/17: 6.8

    LDH
    - 2/25: 192, 3/3: 181, 3/22: 166, 3/29: 252, 4/5: 222, 4/12: 229, 4/15: 120, 4/22: 241, 5/3: 197, 5/10: 143, 5/17: 187

    HCG
    - 2/25: <0.6, 5/3: 6.5, 5/10: 0.8, 5/17: 0.6







  • #2
    Well, it is not unusual to still have some tumor visible that close to ending chemo ( I did at my 1st scan, & it disappeared by the next scan), yours is a bit larger than I'd expect, so certainly something to keep an eye on. It might just take a bit longer than most to shrink. Unless your markers start rising, I wouldn't think surgery would be needed at this point.

    Lung nodules are quite common, if it stays stable, I would not be con concerned.
    Jan, 1975: Right I/O, followed by RPLND
    Dec, 2009: Left I/O, followed by 3xBEP

    Comment


    • #3
      I noticed the blip in the APF/beta-hCG on 5/3. That seemed a bit unusual, although appears resolved, did they mention it or think it was a lab error or just cell lysis at the start of the third cycle? Just curious.

      Seminoma can take a bit of time to shrink but given the embryonal component and the still significant size (even for a pure seminoma cutoff of 3 cm), I would anticipate being told I may need an RPLND. Perhaps the doctors may decide to watch it but I am thinking RPLND may be, unfortunately, most likely.

      Mike
      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


      • #4
        Hi @Mke & @Dave,

        Thanks for your quick response, and input on this. Obviously, I am super nervous, and it helps to have a space like this to be able to learn and get support from folks who have gone through this. So after my first appointment post-scan, the Oncologist is going to get the advice of the surgeon, but also the Tumor Board, which will provide better guidance. He said that the textbook answer is RPLND but his gut feeling is similar to @Dave, that it would shrink and possibly just dead cells (necrotic). I will find out more, probably next week. My fear with active surveillance is having that in my body. @Dave how big were your lymph nodes after the first post-chemo scan?

        @Mike - I asked them about the HCG, and it seems the explanation was the start of the 3rd cycle, and the body was shocked by the Chemo.

        If RPLND is in the future, do either of you recommend any great surgeons? I am thinking about getting a second opinion on my case regardless of what my Onco says, from Memorial Sloan Kettering.

        Comment


        • #5
          Sorry, rpk, I don't recall the size, but I think my original tumor was smaller than 3cm so it wouldn't really be useful.


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

          Comment


          • #6
            If you are at MSKCC, then Dr. Joel Sheinfeld is about as good as they get and one of the handful of surgeons I would allow to perform an RPLND on me, if I needed it.

            Mike
            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


            • #7
              So I found out the board recommends to continue surveillance until the next scan (on July 16th), rather than do RPLND now, given it has been shrinking. Would you guys suggest going with that, or getting a second opinion? My concern is could it spread while doing surveillance?

              Comment


              • #8
                You've had 3xBEP, the chances of having any live cancer are very low, waiting a month & getting another CT will tell mus what is going on, odds are good they will be smaller Seems like a good plan to me.
                Jan, 1975: Right I/O, followed by RPLND
                Dec, 2009: Left I/O, followed by 3xBEP

                Comment


                • #9
                  Thanks Dave. Offtopic, but has anyone dealt with this after chemo. Its been about 7 weeks, and have had stomach cramps, bloatness, and looser stool, especially all in the morning right after I wake up. Ive started probiotic, but would love any other recommendations from anyone? Is this expected, as my gut goes back to normal.

                  Comment


                  • #10
                    It's been too long for me to recall, but I can't recall it being mentioned as a widespread problem. Keep in mind, not everything is going to be connected to your cancer or it's treatment. How long has this been going on?
                    Jan, 1975: Right I/O, followed by RPLND
                    Dec, 2009: Left I/O, followed by 3xBEP

                    Comment


                    • #11
                      Hi Dave - I would say probably mid June. Its just a full day of fluctuation in stool size and constipation with some stomach cramps and feeling of bloatness. Onco said it could just be the gut getting back to normal? does it take over two months for gut to get back to normal, do I need to be patient?

                      Also I had my Second post chemo second scan today. On the Good news side, the lymph node in question are stable/slightly decreased. I have my follow-up with Onco on Monday. See updated below, any thoughts on continued surveillance or RPLND.

                      CT Scan on Lymphnodes
                      - Pre Chemo: 5.0 x 2.4 CM
                      - After Cycle 1: 3.8 x 1.6cm
                      - First Post Chemo Scan: 3.2 x 1.4cm
                      - Second Post Chemo Scan: 2.9-3.0cm x 1.3cm (My estimate)

                      The tumor boards rec after first post chemo scan was surveillance given its significant shrinkage pre chemo, and majority seminoma component. Given that its shrunk a little/stable, and its below/around 3cm.

                      As always grateful for your support.

                      Comment


                      • #12
                        If I were you I'd talk to my primary doc, this could be something unrelated to chemo
                        Jan, 1975: Right I/O, followed by RPLND
                        Dec, 2009: Left I/O, followed by 3xBEP

                        Comment


                        • #13
                          Thanks. So I had my follow-up today with the Onco. They said to continue monitoring instead of RPLND and wait to do the next scan in 3 months given its continued to shrink and predominant seminoma component. Here is also the update blood work. What does HCG signify, thats the only one that spiked out of no where. I am worried about that plus that the next scan isn't till 3 months from now.. Any input would be helpful.


                          AFP
                          - 2/25: 2.1, 3/3: 2.3, 3/22: 5.5, 3/29: 7.9, 4/5: 3.7, 4/12: 11.7, 4/15: 7.6, 4/22: 7.1, 4/22: 7.1, 5/3: 20.7, 5/10: 10, 5/17: 6.8, 6/7: 6.3, 7/19: 3.6

                          LDH
                          - 2/25: 192, 3/3: 181, 3/22: 166, 3/29: 252, 4/5: 222, 4/12: 229, 4/15: 120, 4/22: 241, 5/3: 197, 5/10: 143, 5/17: 187, 6/7:185, 7/19: 155

                          HCG
                          - 2/25: <0.6, 5/3: 6.5, 5/10: 0.8, 5/17: 0.6, 6/7: 0.8, 7/19: 8.6



                          CT Scan on Lymphnodes
                          - Pre Chemo: 5.0 x 2.4 CM
                          - After Cycle 1: 3.8 x 1.6cm
                          - First Post Chemo Scan: 3.2 x 1.4cm
                          - Second Post Chemo Scan: 2.9-3.0cm x 1.3cm (My estimate)

                          Comment


                          • #14
                            When will they redo bloodwork?

                            Also note that low T and MJ can cause hcg to rise
                            Jan, 1975: Right I/O, followed by RPLND
                            Dec, 2009: Left I/O, followed by 3xBEP

                            Comment


                            • #15
                              Whats T and MJ? I asked the Onco about that 8.6, he said that it would be checked again in a week. Said its possible for some other reason reasons. And I was actually curious when they say <1cm is the magic number, is it at the individual lymph node or the total mass. Based on my doctor, my two nodes together are around 2.9cm, with one around that 1cm, and the other around 1.8 cm size.

                              Comment

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