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My Experience (So Far)

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  • My Experience (So Far)

    Hi everyone, I'm back after not posting for a while. Those of you who remember me might remember my earlier posts; if not, I will recap.

    I'm 25 years old, I live in Canada. I felt a strange, hard mass in my left testicle at the end of December and about two weeks later wound up on the operating table to have a left inguinal orchiectomy (on January 8th). Recovery from the surgery went well, there were no infections, and I was even well enough to go vacation a week after the procedure. The week I came back from vacation, I had an appointment with my urologist where I received my diagnosis:

    - Invasive non-seminomatous germ cell tumor
    - The tumor consists of a relatively pure embryonal carcinoma
    - Tumor measures 1.4 cm in greatest transverse diameter
    - Tumor extends into but not through tunica albuginea
    - There is no evidence of lymphovascular invasion
    - Rete testis, epididymis, and spermatic cord are clear of tumor

    From there, this is what happened:

    - Went to the urologist before my meeting with the oncologist (which was on February 9th)
    - Meeting with the oncologist went well, was very knowledgeable, and stated the case for the nerve sparing RPLND over the chemotherapy
    - I had reservations about doing the RPLND, but if it needed to be done, it had to be done so I was ready to bite the bullet
    - After a blood test taken on February 9th at the Oncologist's, found out three days later on Monday, February 12th that my beta hcg levels were elevated to 4.-something
    - As a result, the oncologist said that the RPLND would not be the best option and thoroughly explained why and strongly recommended getting chemotherapy

    From there I went to cancer care and found out everything there was to know about the chemotherapy. After discussing everything at length, the word now was that I was to begin my chemotherapy, 3 X BEP, on Wednesday, March 7th. The side effects of the 3 X BEP can be terrifying. I was most scared about the scarring on my lungs that could potentially happen, as well as hearing loss (the loss of hearing of high frequencies). I am a musician so that was obviously not the best of news.

    Since then, I had a series of tests done, including an audiology test, pulmonary functions test, and blood tests. The pulmonary functions test and audiology test results were great.

    On March 6th, the day before chemo was to begin, I e-mailed Dr. Einhorn to ask his opinion (by the way, God bless whoever posted his e-mail on his forum, can't remember who). I received this e-mail back from his assistant:

    "The 1 cycle of chemo is not an option at this point. We would not treat
    you with chemo at this time just based on the lymph node that is .3 cm
    larger than normal, we would repeat your CT, markers and chest xray in
    4-6 weeks to see if it changed."

    Well, I was pretty much in shock at this point. Yes, you guessed it, the day before I was scheduled to start my 3 X BEP, I was now told there was a good chance I didn't need it. I followed up with tests in the weeks following, and everything normalized; the node size decreased on its own (it shrunk from 1.3 cm to .09 cm) and my tumor markers normalized. My oncologist said it might have been a reactive node.

    Which brings me to now. I have my first follow-up appointment tomorrow, after two months. I feel nervous as hell. Has anyone had anything similar happen to them, or heard of anything similar to my case? Is it possible that I am cured, or can I falter from this seemingly good prognosis? Any insight you have I would greatly appreciate. Thanks.

  • #2
    Any insight you have I would greatly appreciate. Thanks.


    • #3
      Hey Adam,

      Yours seems to be quite an interesting case. First off, your pathology seems to be that of stage I non-seminoma, which means that you caught it quite early. What is especially encouraging is that there was no L/V invasion; however, it was embryonal, which makes observation all the more important. Did you see an uptick in markers prior to your I/O?

      The bHCG of 4 taken in February is on the high end of normal, and that's probably why Dr. Einhorn suggested that you get re-evaluated after 4-6 weeks, essentially placing you on a tight surveillance schedule. It seems this turned out well, since you mention that your markers normalized and the suspicious node shrank. Most importantly, it is quite commendable that you went straight to the top and consulted Dr. Einhorn, who is an eminence in the field and really knows his stuff. Chemo should only be used when it is really necessary, hence the assessment from IU.

      I believe surveillance for stage I nonseminoma carries a 30% chance of a relapse within 2 years (someone please correct me if I have this stat wrong), meaning there's a fairly decent chance that the I/O alone cured you. Of course, you will have to stick to the bi-monthly surveillance schedule to ensure that if you do relapse, you can catch it and treat it promptly. Petep has a case somewhat similar to yours, so I'm sure he'll chime in at some point.

      Hope this helps out a bit. Having some apprehension on your surveillance appointments is quite normal (hey, this is my surveillance week, so I share the feeling). Keep in mind that you should take things as they come. If your labs come back clean, then follow your normal routine until next time. Good luck,
      "Life moves pretty fast; if you don't stop and look around once in a while, you could miss it." -Ferris Bueller
      11.22.06 -Dx the day before Thanksgiving
      12.09.06 -Rt I/O; 100% seminoma, multifocal; Stage I-A; Surveillance; Six years out! I consider myself cured.


      • #4
        hi -

        I had a similar case to yours early on - I even flew out top see einhorn, which was a great decision...

        I even saved an email from him, when my b hcg was at 2.6...when he said in my partcular case, he would never start chemo is the b hcg at 2.6 was the only indicator...

        yes, later on it rose and I showed lymph node activity...

        but at this point, for you, there is a 70-80% chance you are fine with just the surgery...

        but keep your monthly checkups....single most important thing.

        try as best you can to be very happy with your results to date...nothing wrong with being anxious though, it's normal...

        - 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


        • #5
          Thank you for both of your responses. I went today and had my chest x-ray, as well as a blood test. My oncologist noted that prior to the operation, my bHCG was at the same level it was after the operation, above normal. Over time it dropped. AFP and other tumor markers were always normal. And yes, I am so thankful I caught it as early as I did.

          Pete, I know what you mean about taking things as they come, but sometimes it is hard. It is hardest around checkup time. I guess I will have to get used to it, as I would much rather be on surveillance than any of the alternatives. This was my first official surveillance appointment, that's why I've been anxious.

          Thank you for telling me what my chances of relapse are, while I am happy with 70% - 80%, I still won't be able to rest easy until I get through this first appointment.


          • #6
            hey adam -

            glad to hear you made it thru the first appt...assuming you got the chest xray results right away??? markers always take a few days...

            like I said, nothing wrong with a bit of nervous energy....I just had my 1st appointment, in year 2, post chemo, on wednesday...I'm every other month now...still get a tad nervous calling for my markers...

            I know I've posted this before, so I apologize for the repetition...but I was told early on by my urologist "whatever it is, it is..and whatever it is, you will have to take the appropriate action"...just words I know...but somewhat empowering...helps let go a bit, because you really can not control things, other than your own actions.

            In the end, the serious consequence in life, is always death...let me post a response I rec'd from Dr. Einhorn, when my bhcg began to rise:

            "Agreed. The cure rate with 3 courses of BEP for you will be 100%, whether you are treated with an HCG of 4.6 or 146. I would NEVER start a patient on chemotherapy when the only evidence of cancer was an HCG <10, as occasionally it is not due to the cancer. "

            I always hesitate to repost an email as one should always defer to the experts, but our cases are so similar and I want to instill confidence in you...

            my point to you is, it is unlikely you will need chemo...but if the worst case happens and you get a recurrence, you will need chemo...and your outcome, nearly 100%, will be will be a bump in your life...that's about it....

            and I can promise you, like most things, the fear of 3xBEP is 100x worse than the actual event....sometimes, whenever you have fear, a great technique is to think about what is the worst that can happen...and most often the worst thing, is really not that bad.

            best wishes - I'll be rooting for you.

            - 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


            • #7
              Thanks for taking the time to write again, Pete. It is Friday now and they said they would call if there were any problems with the blood work or chest x-ray by the end of the day today. I have not heard from them so I assume that all is clear. Every two months I know I will have to go on this scary roller coaster ride of emotions, but with time I know I will get used to it.


              • #8
                From now on in this thread I will post about my surveillance experiences, so those who have similar pathologies might gain some insight. My June appointment came and went, and all my levels were within normal parameters. I also had a chest x-ray, and everything checked out just fine.

                I was told that I would not getting a CT every 2 months, just every 4-6 months. So I had another CT scan last Tuesday (August 14th) and will be seeing my oncologist at the end of month to get blood work done, and to go over the results of the CT scan. I will post the results once I get them. Keep your fingers crossed!
                Last edited by Adam25; 08-19-07, 04:15 PM.


                • #9

                  My case is almost the same with you.. even oncologist's opinion!!
                  I send you message and please read it..
                  I'm very glad to meet you coz we have very similar diagnosis..
                  dx 04/02/07, left I/O 07/10/07, Chemo started 07/24/07
                  80% Embryonal Carcinoma, 20% Immature teratoma with rete testis invasion, no vascular invasion, enlarged abdominal lymph node by CT but all clear by PET-CT


                  • #10
                    Lee, I sent you a PM with this information but I am reposting it here for those who might find it useful.

                    Dr. Einhorn's e-mail address is [email protected] -- either he or his assistant Jackie will get back to you. I am no doctor and I have not seen your pathologies so I wouldn't be able to venture a guess on what would be the best option for you.

                    Consult with Dr. Einhorn and do whatever he says to do, he is the foremost authority on TC cancer. Good luck, and I hope everything works out for you.


                    • #11

                      At first it was urgent thing for me to contact Dr. Einhorn so I asked some people and 3 people answered to me - Mommo, Pete and Adam .. Thank you all very much.

                      So some days ago I mailed to Dr. Einhorn and his assistant, Jackie, you know, answered.

                      She said if it is certain that I'm stage1, I have options-surveillance(already done), 1 cycle of chemo, or a node dissection.
                      CT scan said that my lymph node was enlarged like your case, I sent a mail again to ask if I should take CT again now to check the change of the lymph node. Because if I'm truly stage1, my enlarged lymph node would become normal without any therapy like you, Adam. I read that you really took one more CT after some time to check it and it became normal size naturally on your post.
                      But this time there was no response from her.. I wonder if there is something wrong.. I mailed again but no response too.. What can I do now..?

                      And Adam, wasn't it difficult to follow Dr. Einhorn's opinion, not your local doctor's? In my case, my family don't understand following the opinion with 'e-mail', not following Korean doctors - but there is no Korea TC expert on the experts list and my hometown doctors strongly insist that I should receive 3~4 cycles of BEP as adjuvent therapy, you know - although he is the most famous expert.
                      But I surely think that I'd rather follow Dr. Einhorn's opinion than the doctors' here.

                      I'll take CT scan again soon. Is it going right, now?
                      dx 04/02/07, left I/O 07/10/07, Chemo started 07/24/07
                      80% Embryonal Carcinoma, 20% Immature teratoma with rete testis invasion, no vascular invasion, enlarged abdominal lymph node by CT but all clear by PET-CT


                      • #12
                        Is there any chance you could get your doctor to give Einhorn a call?
                        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.


                        • #13
                          Good Advice

                          Adam - Great advice on calling or emailing Einhorn. I did the same thing and like Pete, flew out/drove out for all of my chemo at the IU center. A great investment indeed especially since hooked me up with seriously reduced hotel rates at nice hotels. Like you I had 100% embryonal, original tunor was 1.3 cm and I had one node. I had no markers, but my lymph node doubled in 4 to 6 weeks. Embryonal is a fast mover, it is very impatient. Stick to your schedule. Also, interestingly enough, I received a consult from a urologist in NJ that recommended nerve sparing RPLND - no way said Einhorn. Embryonal is ultra sensitive to chemo regiment should it come down to that. I am two years post clean CT at IU and feeling very good about things. The odd thing is that Einhorn only recommended chest xray and markers but no CT with my case. My local oncologist wanted to "sneak in" a CT, but I guess Einhorn believes if I relapse it will be in the lungs first as per typical path...

                          Good luck and PM me if you want to chat...
                          Left I/O 4/21/05
                          Stage IIA, Non Seminoma, 100% Embryonal
                          BEP X3 - 07/11/2005 - 9/6/2005
                          Surveillance - Negative CT, CXR & Markers
                          I love my life!


                          • #14
                            Apologies for the delayed report on my prognosis, was out of town the last two weeks. All CT results and tumor markers were normal, so everything's still in the green.


                            • #15
                              Congratulations on your "all clear," Adam. Keep 'em coming!
                              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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