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  • New member - confused / questions about treatment

    I was diagnosed with TC in October 2006 and had a radical orchiectomy on 10/20. I am now seeing Dr. Sagalowsky at UT Southwestern Medical Center for treatment options. He is reviewing the original CAT scan and chest X-ray, but the initial report is that they were clear. So far it seems I have stage I non-seminomous TC. It was diagnosed as embryonal cell, but he thinks there might be another type as well. My tumor markers have returned to normal (HCG < 2, AFP = 6.3, they were HCG = 6, AFP = 51 if I remember correctly).

    I am confused about treatment options. According to the doctor, my options are:

    * 2 rounds of chemo and pretty much be done with it. Dr. Sagalowsky does not like chemo and does not recommend this due to the side effects
    * RPLND (which is Dr. Sagalowsky's specialty)
    * Surveillance

    The side effects of chemo are my major concern.

    I understand that chemo can cause heart problems later in life. I'm afraid of this, being overweight and having a lot of family history with heart disease. How much does my risk increase with 2 rounds of chemo?

    The doctor also says that chemo can cause nerve damage, especially in my hands. How bad is that? I'm a programmer - I sort of need to be able to type!

    If I have RPLND, what are the chances of recurrence? And if it recurs, how much chemo does that usually mean?

    If I do surveillance, and the cancer comes back, how much chemo should I expect? How much worse are the side effects then compared to preventative chemo now?

    Thanks in advance for any help or info.
    Oct 2006 - Right I/O - Stage I - 80% embryonal, 15% teratoma, 5% yolk sac - No lymphatic or vascular invasion.
    Dec 2006 / Jan 2007 - 2x adjuvant BEP
    Feb 2007 - 4th child (first daughter!) born
    Nov 2008 - 5th child (second daughter!) born

    "When you go through a trial, the sovereignty of God is the pillow upon which you lay your head." - Charles Spurgeon

  • #2
    Welcome, Robert! I like surveillance for stage I testicular cancer, because if you do end up having additional treatment later, you'll know it was truly needed.

    Be sure to read all about your options -- surveillance, RPLND, chemotherapy -- at the Testicular Cancer Resource Center.

    If you do have a recurrence while on surveillance, you will most likely be treated with 3xBEP or 4xEP.

    Did your pathology report indicate vascular or lymphatic invasion? That may be a factor in your decision. Note, too, that embryonal carcinoma can skip the retroperitoneal lymph nodes and spread directly to the lungs, and that may be a factor in your decision about RPLND surgery.
    Scott, [email protected]
    right inguinal orchiectomy 6/5/2003 > nonseminoma, stage I > surveillance > L-RPLND 6/24/2005 for recurrence, suspected teratoma but found seminoma, stage II > chylous ascites until 9/2005 > surveillance and "all clear" since


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    • #3
      Originally posted by Scott
      Did your pathology report indicate vascular or lymphatic invasion?
      Thank you, Scott. As far as I know, there was no vascular or lymphatic invasion, but I think the doctor wants to review everything to be sure.
      Oct 2006 - Right I/O - Stage I - 80% embryonal, 15% teratoma, 5% yolk sac - No lymphatic or vascular invasion.
      Dec 2006 / Jan 2007 - 2x adjuvant BEP
      Feb 2007 - 4th child (first daughter!) born
      Nov 2008 - 5th child (second daughter!) born

      "When you go through a trial, the sovereignty of God is the pillow upon which you lay your head." - Charles Spurgeon

      Comment


      • #4
        Robert, be sure to get a copy of the pathology report.
        Scott, [email protected]
        right inguinal orchiectomy 6/5/2003 > nonseminoma, stage I > surveillance > L-RPLND 6/24/2005 for recurrence, suspected teratoma but found seminoma, stage II > chylous ascites until 9/2005 > surveillance and "all clear" since


        Your donation funds Livestrong services for people facing cancer now. Please sponsor my ride!

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        • #5
          Robert:
          From what you have written it would seem that surveillance would be a good option. The embryonal cell can skip the lymph nodes and go directly to the lungs so doing an RPLND at this point would not be curative and you show no signs of spread so I would skip the chemo unless it is a must and then get either 3BEP or 4EP.
          Son Jason diagnosed 4/30/04, stage III. Right I/O 4/30/04. Graduated College 5/13/04. 4XEP 6/7/04 - 8/13/04. Full open RPLND 10/13/04. All Clear since.

          Treated by Dr. Rakowski of Midland Park, NJ. Visited Sloan Kettering for protocol advice. RPLND done at Sloan Kettering.

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          • #6
            My wife is making all the phone calls today so I can get copies of everything. We are going to M D Anderson in Houston for a second opinion, too.

            I finally found some information on the increased heart disease due to chemo, which doesn't look all that bad, but I haven't seen anything yet on the nerve damage. Does anyone have any info about that?
            Oct 2006 - Right I/O - Stage I - 80% embryonal, 15% teratoma, 5% yolk sac - No lymphatic or vascular invasion.
            Dec 2006 / Jan 2007 - 2x adjuvant BEP
            Feb 2007 - 4th child (first daughter!) born
            Nov 2008 - 5th child (second daughter!) born

            "When you go through a trial, the sovereignty of God is the pillow upon which you lay your head." - Charles Spurgeon

            Comment


            • #7
              Use the search tool for this forum and look up posts that have to do with neurothopy, you'll find lots of information.
              Son Jason diagnosed 4/30/04, stage III. Right I/O 4/30/04. Graduated College 5/13/04. 4XEP 6/7/04 - 8/13/04. Full open RPLND 10/13/04. All Clear since.

              Treated by Dr. Rakowski of Midland Park, NJ. Visited Sloan Kettering for protocol advice. RPLND done at Sloan Kettering.

              Comment


              • #8
                click on my name, and see some of my posts...

                Same situation as you...I chose surveillance...and ended up having to have chemo as it did show up later in the lymph nodes...all fine now 6 months post chemo...

                if I had to do it again I would choose survellance as the odds favor that...why have chemo if you do not need it most of the time...

                of course, some pople can not take the mental aspect of the tests...but better to deal with that, then chemo...

                you really need to keep on the monthly surveillance though as embryonal will move fast if it is still there....but do get the 2nd opinion on the pathology and the scans.

                you will be fine....just get super educated as the other posters wrote. This is by far the best site out there for info, links etc...
                - lump first noticed 11/20/2005
                - I/O right Dec 8, 2005
                - 95% embryonal / 5% seminoma
                - normal markers PRE surgery
                - no vascular invasion, tunica free of cancer, epididymis free of cancer, lungs free, lymph free
                - Stage I diagnosis
                - surveillance
                - mid feb '06, beta hcg slightly elevated = 4.6...small enlarged lower node seen on CT scan...
                - 3BEP began feb 20, 2006
                - finished 3 BEP, last bleo, april 17, 2006
                - CT scan, blood markers, chest..all clear
                - back on surveillance

                Comment


                • #9
                  Originally posted by robertwilliams
                  The doctor also says that chemo can cause nerve damage, especially in my hands. How bad is that? I'm a programmer - I sort of need to be able to type!
                  I went through 3 rounds of chemo, just finished on November 1st. The only signs of nerve damage are a slight ringing in my ears and occasional "pins and needles" feeling in my feet. It's very minor and my doctors tell me it'll probably go away in time. I'm also a programmer, I type 87wpm and I play guitar. Nerve damage affecting my hands was really my biggest worry as far as long-term side effects, but I haven't noticed any problems.

                  Comment


                  • #10
                    Originally posted by Rover
                    Could someone please point me in the direction of a reference for the embryonal carcinoma / lung mets connection? I've heard this mentioned a couple times but haven't found much.
                    There's one related reference at this link, in Dr. Nichols' answer to question 5: "The two dominant pathways are: 1) Through the lymph node system. This is a primary modality of spread from the testis primary to the retroperitoneum and in some cases to other lymph nodes along the mid-line of the body. 2) Thereafter, spread is usually via the blood stream (hematogenous). This is most common in patients with advanced germ cell tumors or those patients with choriocarcinoma or embryonal carcinoma elements. The most common sites for blood borne metastases are the lungs, followed by the liver, bone, and brain."

                    It has come up more explicitly several times on the TC-NET mailing list. I'll have to check the archives...
                    Last edited by Scott; 11-22-06, 09:33 PM.
                    Scott, [email protected]
                    right inguinal orchiectomy 6/5/2003 > nonseminoma, stage I > surveillance > L-RPLND 6/24/2005 for recurrence, suspected teratoma but found seminoma, stage II > chylous ascites until 9/2005 > surveillance and "all clear" since


                    Your donation funds Livestrong services for people facing cancer now. Please sponsor my ride!

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                    • #11
                      I still find it odd to meet this prevailing idea that EC somehow makes an RPLND less practical, especially if it's only based on this one interview (and I can't find anything in the primary literature, either, and it's never been suggested to me by doctors).
                      The interpretation of that sentence is also ambiguous -- it seems to me that embryonal carcinoma and choriocarcinoma are aggressive, as in, they're more likely to be associated with Stage III cancers, which spread to the lungs. This doesn't mean that they're likely to take the hematogenous route with major frequency (relative to the lymphatic route) -- just that they're likely to take it sometimes, relative to the other cancers. If you look at the rates of lung metastases relative to retroperitoneal metastases, the lung incidences are quite low (I think in the order of 10% or less).

                      Again, if anybody has a better reference than an interview, I'd love to see it!
                      And note that this is my interpretation -- I'm not a doctor, and I could be proven wrong!

                      Thanks.
                      2/14/10 - Ultrasound suspicious, AFP 248, hCG 166, LDH normal
                      2/17/10 - Left Orchiectomy
                      Pathology - 90%EC, 10% teratoma with yolk sac elements, LVI+
                      Markers normalized post-orchiectomy
                      4/27/10 - Bilateral nerve-sparing RPLND
                      Lymph node pathology negative

                      Comment


                      • #12
                        Originally posted by lenny View Post
                        Again, if anybody has a better reference than an interview, I'd love to see it!
                        I can find others references to back this up by searching Google Books, such as here and here.
                        Last edited by Scott; 04-14-10, 08:15 AM.
                        Scott, [email protected]
                        right inguinal orchiectomy 6/5/2003 > nonseminoma, stage I > surveillance > L-RPLND 6/24/2005 for recurrence, suspected teratoma but found seminoma, stage II > chylous ascites until 9/2005 > surveillance and "all clear" since


                        Your donation funds Livestrong services for people facing cancer now. Please sponsor my ride!

                        Comment


                        • #13
                          Thanks for the references, Scott.
                          However, what they show is that EC and choriocarcinoma have the *potential* to spread hematogenously, not that this is a preferential or guaranteed thing. If that were true, RPLND for EC would almost never be done, because it would be a needless risk.

                          While I agree that there is a risk that an RPLND won't be curative, I think the case of high-EC with LVI is the only situation where RPLND *is* a practical first-line treatment alternative to surveillance. Here, we have an invasive tumour type that's more likely to spread from the testicle via micrometastases compared to other pathologies, and where the majority of these micrometastases (~70%) are likely to end up in the retroperitoneum (vs. ~10% for the lungs). See this figure (I'm lucky in that I have university access to primary journal fulltexts), from kakiashvili, zuniga and jewett 2009 (http://www.springerlink.com/content/7552n7n242256722/): http://imgur.com/tBFgV

                          This figure reflects the experience of the Ontario group, who are very skilled at RPLNDs. Results vary, with up to 25% lung relapse at other centres (this is discussed in the paper).
                          2/14/10 - Ultrasound suspicious, AFP 248, hCG 166, LDH normal
                          2/17/10 - Left Orchiectomy
                          Pathology - 90%EC, 10% teratoma with yolk sac elements, LVI+
                          Markers normalized post-orchiectomy
                          4/27/10 - Bilateral nerve-sparing RPLND
                          Lymph node pathology negative

                          Comment


                          • #14
                            I should note that the percentages I gave are actually misleading! Those represent all tumour types, not just the relapse types for EC-predominant only. However, the relative difference in retroperitoneum vs. lung relapse still illustrate my point that lung relapses are relatively rare, I think.
                            2/14/10 - Ultrasound suspicious, AFP 248, hCG 166, LDH normal
                            2/17/10 - Left Orchiectomy
                            Pathology - 90%EC, 10% teratoma with yolk sac elements, LVI+
                            Markers normalized post-orchiectomy
                            4/27/10 - Bilateral nerve-sparing RPLND
                            Lymph node pathology negative

                            Comment


                            • #15
                              Originally posted by lenny View Post
                              However, what they show is that EC and choriocarcinoma have the *potential* to spread hematogenously, not that this is a preferential or guaranteed thing.
                              Of course it's not guaranteed. It's just more likely, reducing the odds that RPLND will be curative and increasing the likelihood that chemotherapy will also be required.
                              Scott, [email protected]
                              right inguinal orchiectomy 6/5/2003 > nonseminoma, stage I > surveillance > L-RPLND 6/24/2005 for recurrence, suspected teratoma but found seminoma, stage II > chylous ascites until 9/2005 > surveillance and "all clear" since


                              Your donation funds Livestrong services for people facing cancer now. Please sponsor my ride!

                              Comment

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