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  • My Case

    Hi guys,

    I am living Canada.
    At the beginning of April 2007, maybe about 10th, I found my left testicle a bit bigger than usual. I didn’t know at all what and how to check, but I felt something unusual there.
    Few days later I went to the local clinic and the doctor sent me to the urologist on next morning (04/16/2007) and here are the facts:

    04/16/2007 Ultrasound shows 4cm mass in left testis. Tumor markers AFP=95 HCG=2300
    04/17/2007 Chest x-ray clear; CT scan found NO abnormal things
    04/18/2007 Left Orch;
    05/07/2007 Some Pathology data (first discussion with my urologist): 60% Embroynal Carcinoma, 35% Seminoma,5% Teratoma
    Relatively big tumor mass.
    Vascular invasion? yes or no - i had no answer on this question ???
    (Maybe not or not evident ???)
    New blood tests (1st after surgery), waiting the results
    New CT scan will be done next few days too.
    The Doctor said, after these 2 tests they will be more acurate on my case.
    Next appointment - 05/23/2007 ( I HAVE TO WAIT 16 DAYS !!! )

    How do you think, is it normal to wait so long ?
    What are your feelings for my future, guys ?

    Thank You.

  • #2
    Hi, Oscar, and welcome to the family. Waiting is tough, but your appointment schedule doesn't sound unusual. As for your future — it's so bright you have to wear shades. Seriously, you'll come through in great shape. The most important thing is to see your tumor markers drop back to normal and get your CT scan results, so you and your doctors can make decisions about the best treatment approach.
    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!


    • #3
      Welcome Oscar! You are going to be fine.
      One thing I would suggest is to see if you can get a second opinion on your pathology- You really want closure on the vascular invasion question. You may be a canidate for RPLND- that will be determined by future marker and CT results.
      You should be ready to ride in Philly in August!
      Stage III. Embryonal Carcinoma, Mature Teratoma, Choriocarcinoma.
      Diagnosed 4/19/06, Right I/O 4/21/06, RPLND 6/21/06, 4xEP, All Clear 1/29/07, RPLND Incisional Hernia Surgery 11/24/08, Hydrocelectomy and Vasectomy 11/23/09.

      Please see a physician for medical advice!

      My 2013 LiveSTRONG Site
      The 2013 Already Balders


      • #4
        From what you posted it seems you have as normal (if that's even possible) a form of tc as you can get. If you blood markers keep comming down and the scan and x-rays are clear you may be done with treatment. Joe is right about a second opinion to make sure the staging is done right. Don't worry about hurting the doctor's feelings most of them understand the need/desire for a second opinion and take no offense when it's suggested. If you post the results of the lab work we may be able to give you some guidance as to what course of treatment each of us followed. In any event with proper treatment and not missing any follow-up exams you have every reason to expet a complete cure.
        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.


        • #5
          Hey man,
          Scott, Joe, and Dadmo have pretty much covered everything quite accurately. The two key things are making sure that your markers come down and that the radiology remains clean; however, you do need a clearer answer on your pathology. Try to get a copy of the report. It should indicate the precise borders and potential spread of the tumor (i.e. rete testis invasion?, epididymis infilatration?, presence of tumor at the surgical margin?); that will determine your staging more accurately. Once all these pieces are together, including your most recent radiology, you will have a better picture of what you can expect. Thus far, though, the data look good. The waiting sucks, but you should be able to retrieve your newest results prior to your appointment with the doc. In the meantime, focus on completing your recovery from the surgery.
          Last edited by Fed; 05-08-07, 11:10 AM.
          "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.


          • #6

            I am so impressed of your quick response!
            Forgot to tell you, I am 39, I have 15-years old son.
            I passed trough different fights in my life, but this one is very special. Unfortunately, I am divorced and I am living alone.
            But …. I think TC is not disease. It is just different condition of your mind that could make you even stronger.
            The orch. surgery went very well. I had no problems with it. The tumor is out.
            Now, I have some information. More details are coming soon.
            I will post the results as soon as possible.


            • #7

              I have some questions about post orch surgery period.
              Is it normal 3-4 weeks after the surgery to have some light and variable heaviness in abdominal area, sometimes to the back, then again changes somehow, but not strong feeling?
              I am concerned about eventual lymph nodes reaction.


              • #8
                I had my I/O 4/27, and now 11 days later I feel like I'm almost fully recovered. I had some back pains the first few days after the surgery, but I think they were caused by laying/sitting around most of the day. Despite my pants rubbing against the scar, I haven't had any discomfort since the middle of last week. I hope that makes you feel better!

                4/26/07 - mass confirmed w/ no elevated markers
                4/27/07 - left I/O
                5/2/07 - Dx: 100% seminoma stage 1A
                Surveillance: CT/blood (6 month cycle)
                4/27/13 - 6 years cancer free!


                • #9
                  When your scar starts getting itchy, use white vinegar to get rid of the itch. I have a med-tech buddy who I was complaining about the itch too...I mean, it can itch like crazy sometimes, and he gave me that tip. Besides smelling funny (I only do it at home) takes the itch away.

                  Just my two cents!


                  • #10
                    Good results. What is next? I need Help.


                    Today, I had discussion with my urologist and he showed me the results of my last tests.
                    The blood work (results from May-07-2007) are very good:
                    AFP dropped from 95 to 4.5 and HCG from 2800 to 5. That means, the half-life times about 4-5 days for AFP and about 2 days or less for HCG.
                    I was concerned slightly about the HCG decreasing speed, but my doctor said it was good, because the initial blood tests were 2 days before the I/O surgery.
                    We discussed the vascular invasion, based on pathology report, and this time I’ve got the answer – There are NO any signs of invasion.
                    The new CT scan, done in other clinic, last week (May-16) almost repeated the findings of my pre-surgery CT scan (APR-16). Generally, no abnormal things.
                    However, the new results were more detailed regarding the nodes measurement. The “biggest” suspected 2-3 nodes in the area were about 3-7 mm, only one about 9-10 mm. Does anybody know what does it mean?
                    All the rest looked clean.
                    I asked my urologist what size of nodes is “normal” and when you could say the node is big, but again, he didn’t give me some exact digits.
                    So, based on these results, it looks like non-seminoma, clinical stage I.

                    Then, the doctor said “in meanwhile” when he received the post surgery blood results, he discussed ?! already my case with group of specialists and they decided that following treatment should be RPLND surgery.
                    I tried to ask some details about the names, the reasons and so on, but finally, I’ve got only an appointment next week with another doctor - Jordan Steinberg who should answer my questions, because my current urologist had no enough experience with next steps.
                    Now, I have the good news – blood tests were good.
                    But, I have big uncertainty what is next?
                    Nobody discuss any chemo variant. Is it applicable?
                    The surveillance was not discussed neither.
                    I am a bit confused.
                    I checked some information about RPLND. Looking at the eventual schedule, in my case, there will be certainly delay more than 6 weeks after I/O surgery.
                    I am also concerned about the required experience for this operation. Who will make it here in Canada, where to find some information?
                    And… the most important … I am living alone.
                    I am divorced and actually I have no family or friends. Just 2-3 people but they are not able to stay with me and help me for recovery period.
                    I don’t know what to do.
                    I was thinking something like 2 doses chemotherapy will be a reasonable choice for me, or I am wrong?
                    If the chemo is so effective, according to some articles, why this option is not so popular and RPLND is always the most suggested in such cases.
                    EC might skip the nodes, why is not good to apply the 2-chemo right now, if something small was still really there or even somewhere else in the body?
                    RPLND will give more accurate diagnostic but is it a real treatment?
                    Thank you guys.
                    Any help appreciated.


                    • #11
                      Chemo is the nuclear weapon of medical treatment and should not be used unless there are no other options. I think your doctors feel that you are cancer free with one big question. What's in those lymph nodes? The only way to find out is to have them removed and examined. If it should turn out to be cancer then you will get the required chemo. If you get chemo first and the nodes are still large the RPLND will still be requied and it's much more difficult after chemo.
                      I do have to commend you doctor for getting your case reviewed. It's the sign of a good doctor when he knows something beyond his knowledge.
                      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.


                      • #12

                        Dadmo, thank you for your comments about chemo.
                        You are right for reviewing my results, and having some additional opinion just I don't know how to do it.
                        It takes time to find the right specialists and I have no names or places where to go.
                        Next Tuesday I have to see the RPLND doctor and the discussion will be on this subject only. What will be my choices, to say yes or no?
                        How long RPLND could be delayed after I/O?
                        Do you think I might have any other option in this short timeframe?


                        • #13
                          Originally posted by oscar666
                          I am also concerned about the required experience for this operation. Who will make it here in Canada, where to find some information?
                          Hi oscar666,
                          I had RPLND done in July 2006 at Toronto General Hospital by Dr Michael Jewett. He is supposed to be an expert in these kinds of surgeries. Great guy.
                          TC 1 - Jun/1998
                          Pathologic Nonseminoma Stage I (AFP over 600, HCG over 100),
                          Right Orchiectomy,

                          TC 2 - Feb/2006
                          Nonseminoma Stage III (AFP 851, HCG 167),
                          germ-cell (embryonal carcinoma, yolk sac carcinoma), tumors in abdomen and lungs,
                          Left Orchiectomy,
                          Tandem HDC/Autologous HSCT,
                          Surveillance (clear since Dec/2006)


                          • #14

                            Robert2112, I did not see an oncologist yet.
                            I am trying to find some way to get it.
                            Actually, for me, any access to the doctors is not easy at all, and my test results had some "standard" delays. For the second CT scan, I went to another (private) clinic, because the "standard" delay would be up to 2 months in public hospital (Jewish General Hospital, where is the place of my urologist).
                            I don't want to compare US vs Canadian health system.
                            The truth is, that I have no enough information, family, friends, relatives or anything else that could help me to clarify where am I and what to do.
                            I am asking my colleagues at work, here, there but as you know is not easy to discuss cancer problems.


                            • #15
                              CT-scan real report. Please give me advice !

                              Hi all,

                              I finally received a real copy of my last CT scan.
                              In my previous message I just improvised about “the nodes” based on the information I remembered after urologist’s discussion. Apparently, they measured “mesenteric nodes”
                              Here is the real report. Please take a look and give me your advice.

                              Radiologist’s Final report
                              Exam #X 2007 May 16 CT Abdomen /Pelvis (C+)

                              CT-CSAN OF THE ABDOMEN AND PELVIS:

                              Ct-scan of the abdomen and pelvis using oral and i.v. contrast and delayed sequences have been obtained.

                              Clinical Information: post testicular surgery for embryonic cell carcinoma, operated May 18 2007.

                              Apparently there is a previous CT-scan a month ago. We do not have this examination for review at the moment.


                              There is a tiny dot size hypodensity in the segment VII of the liver probably incidental and there is another one in segment III. I suspect those are not highly significant. They should be compared with the previous study.

                              Gallbladder, biliary tree, pancreas, spleen, kidneys and adrenal glands are normal.

                              There is no sizeable retroperitoneal adenopathy identified. However we see some mesenteric nodes. Some of them are not size significant. I , however, measured the most important ones: one of 8mm (image#), one of 10mm, one of 7mm and one of 8mm in the ileo-caecal region. Although they are not in the lymphatic drainage of the testicle, in the clinical context, they have to be surveyed I believe.

                              GI tract unremarkable.

                              No inguinal adenopathy. There are a post-surgical changes in the left inguinal region. There is slightly elongated left iliac node lateral to the external iliac vein to compare and survey on the next appointments.

                              Lung bases and bones are unremarkable.


                              No sizeable retroperitoneal adenopathy in the renal hilar region.
                              An intermediate node in the left iliac region.
                              There are some mesenteric nodes as mentioned above. They might be incidental findings, but in the clinical context they need to be surveyed.
                              No other abnormality.

                              Reported by … May 16 2007


                              Note that Doctors somehow decided the RPLND as only suggested treatment BEFORE this report! No other possibilities were discussed so far.
                              They seem to be based only on my returned blood markers after surgery.
                              I really don’t know if RPLND is the right way, assuming that:

                              - My pathology shows 60%EC (and no evident vascular invasion)
                              - Apparently, my case is both tumor marker’s sensitive
                              - This CT scan shows other things but, no sizeable retroperitoneal adenopathy
                              - The delay between I/O and eventual RPLND will be > 6 weeks
                              - Not clear who and when will make this surgery in Montreal

                              What is the advantage of RPLND in this situation?

                              According to my urologist – “You should discuss RPLND details next Tuesday” with another doctor (who doesn’t seem to be exactly the surgeon he is an oncologist BTW) and somehow, he will try to insert my case in some other’s, say RPLND doctor’s schedule. What I could say on this meeting? Is there any choice, you think?

                              Regarding the timing, I am really concerned, because any eventual new appointment with known TC RPLND specialist from Toronto or US for me seem to be almost impossible or at least too late. I have some private insurance (Canada is OK for sure) and I could spend some additional money, I am ready to go, but the big problem is that I am alone.

                              English is not my mother language, so probably I still have problems to explain what is my situation. I've never touched the health system services since I have been in Canada (8 years). I am already Canadian Citizen, but I still don’t know how to deal with so many things. I am not complaining, I just work, pay my taxes, enjoy the weekends and try to get some new friends in meanwhile. Now I need help. At least to make this decision.
                              Actually, what I might say on next Tuesday’s appointment?
                              A)No, thanks (What next? Maybe surveillance? But who will take care of it?) No joke. This is a real issue with all delays, CT scans etc.
                              B) Let’s push the RPLND “as soon” as possible. (Other details like nerve sparing? Lap? Oh boy)
                              C) ???

                              Thank you.

                              I schedulled sperm banking for Monday.
                              Organizing this simple thing needed at least 2 days for me.