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Shocked by what's going on but starting to get my head around it.

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  • Shocked by what's going on but starting to get my head around it.

    Hi All,

    I came across this site today and must say that I am very glad I found it. The last two weeks have been a little bit crazy for me and hoping sharing with fellow sufferers and survivors will help me through.

    I am 33 guy who over the last month noticed a growing and firmness in my left testicle. I had no pain during this but I went to the doctor two weeks ago who sent me the next day for an ultrasound. The ultrasound showed a lump inside my testicle which was bigger than I thought it could be. 3.9 x 2.7 x 2.4cm. As part of the ultrasound they also checked my epididymes, para-aortic region and my left kidney which the report said appeared normal and showed no sign of lymphadenopathy. They scan appeared to show the mass was contained within the testicle.

    The next day my doctor sent me for a CT scan of my Chest, Abdomen and pelvis. I got the results of this from my urologist last monday. The rough details of it said that for the chest region lungs and pleural spaces are all clear, no focal pulmonary lesion, no lymph node enlargement or pleural or pericardial effusion seen.

    For abdomen & pelvis it said there was no lymph node enlargement no abnormal free fluid or solid focal lesion. The liver, spleen, kidneys, pancreas, adrenal glands outline normally. The abdominal aorta is normal and no focal destructive bony lesion is seen.

    The final statement of the CT scan said there is no evidence of metastatic disease.

    Straight after the urologist discussion on the Monday I was taken for blood tests and Tuesday morning (Less than 24 hours later) admitted for surgery for a radical oridectomy. I have spent the last 4-5 days recovering at home.

    So now after I can take stock of what has happened I would really like to know what I face going forward. I have another appointment with the Urologist who will have the results of the pathology of the removed testicle. I have just moved to Australia literally a month ago so this is not how I planned on starting my life here. I would appreciate if people could give me some rough guide as to what I should expect going forward with regard to treatments and timescales. I know it depends on results but just rough would do.

    I also have just started a job so I need to work as much as possible over the next few months but I have a feeling this could be difficult depending on treatment. Were other suffers able to work throughout? If not I may have to consider going home to family.

    Its all too much to take in but burying my head in the sand is no answer.

    Looking forward to hearing from you and making new friends.

    Best wishes,

    Dave Hanson
    Dave Hanson
    Found lump 18/02/2011
    Ultrasound confirmed mass 23/02/2011
    CT Abdomen, pelvis, chest (clear) 24/02/2011
    Left I/O 1/03/2011
    99% Seminoma <1% Unknown germ cell 10/03/2011
    Staging T1 - 1A 10/03/2011

    2 month - 27/04/2011 - All clear!
    5 month - 16/07/2011 - All clear!
    9 month - 22/12/2011 - All clear!
    14 month - 22/12/2011 - All clear!


    Yesterday was history, tommorrow a mystery, but today is a gift. That's why it's called the "present"

  • #2
    Hey Dave,

    So far the test results look positive, but you will need those blood results (AFP, HCG and LDH) as well as the pathology to put all the pieces together.

    I would not quite jump and buy a ticket home yet. Waiting for results is the toughest part, but you need those results to make effective decisions.

    Keep us in the loop.
    Best,

    Zsolt


    Friendship is born at that moment when one person says to another; "What! You too? I thought I was the only one." - C.S Lewis

    “Experience: that most brutal of teachers. But you learn, my God do you learn.” - C.S. Lewis


    Mass found 11/20/08
    Left I/O 11/25/08
    Pathology: Seminoma, Stage 1
    Surveillance: All Clear since

    Comment


    • #3
      Similar situation here. Surgery scheduled for Monday. I started a new job 3 weeks ago. Had to tell my new boss I have (probably) cancer and need time off. That was very uncomfortable. In regards to your question, I have no clue. But I will be following this thread along with you. Good luck!

      Sam

      Comment


      • #4
        Hey Sam,

        Good to hear from you. Looks like we are both at similar stage in the process. Not sure what your thoughts are on the surgery but given as I had mine less than a week ago I can tell you that there was not too much pain and recovery for me at least has been fairly quick. I do a desk job so going back to work tomorrow maybe its the same for you?

        If you fancy a buddy to chat to and discuss stuff with then please shout me and we can exchange details email. Although I would wish this on nobody its nice to know there are others.

        Good luck for Monday and let us know how you get on!

        Dave
        Last edited by davidhanson90; 03-06-11, 01:21 AM. Reason: Just comment of good luck for surgery.
        Dave Hanson
        Found lump 18/02/2011
        Ultrasound confirmed mass 23/02/2011
        CT Abdomen, pelvis, chest (clear) 24/02/2011
        Left I/O 1/03/2011
        99% Seminoma <1% Unknown germ cell 10/03/2011
        Staging T1 - 1A 10/03/2011

        2 month - 27/04/2011 - All clear!
        5 month - 16/07/2011 - All clear!
        9 month - 22/12/2011 - All clear!
        14 month - 22/12/2011 - All clear!


        Yesterday was history, tommorrow a mystery, but today is a gift. That's why it's called the "present"

        Comment


        • #5
          Hi Zsolt,

          Yes the wait for the blood test results and pathology are a struggle but hopefully I will know in a few days. From what I have read there are 2 outcomes.

          1.) Its not cancer. Although I cannot see any information of what it could be if its inside the testis and I was told 95% inside are usually cancerous.

          2.) It is cancerous and it will be Seminona, Non-Seminona or both. Is the preferred of these two seminona?

          Dave
          Dave Hanson
          Found lump 18/02/2011
          Ultrasound confirmed mass 23/02/2011
          CT Abdomen, pelvis, chest (clear) 24/02/2011
          Left I/O 1/03/2011
          99% Seminoma <1% Unknown germ cell 10/03/2011
          Staging T1 - 1A 10/03/2011

          2 month - 27/04/2011 - All clear!
          5 month - 16/07/2011 - All clear!
          9 month - 22/12/2011 - All clear!
          14 month - 22/12/2011 - All clear!


          Yesterday was history, tommorrow a mystery, but today is a gift. That's why it's called the "present"

          Comment


          • #6
            I can't recall exactly, but I believe they refer to non-seminoma as teratoma over there in AUS. Might just be the UK, but regardless. Seminoma, when staged at 1A or 1B can normally pass with surveillance, as it's one of the slowest moving forms of this disease. However, should it have spread, which to me it sounds like you caught it very early, it's difficult to treat, and normally radiation therapy is required. Typically speaking radiation therapy will be suggested, but you don't necessarily need to undergo adjuvent treatment unless you feel uncomfortable about surveillance.


            I chose surveillance myself after having been diagnosed with seminoma stg 1A, in which the cells were confined to the testicle, and no cord involvement, or metastasis had been noticed. I have to keep up with a MRI/CT scan regiment every 3 months for the next few years, but I definitely opt'ed out of radiation/carbo treatment as a safeguard. I don't feel like adjuvent chemo or rad therapy would be necessary.

            Eager to hear about the blood results and pathology. Best of luck, and don't overeat if you can help it. You have a long way till you can fully exercise, and weight gain does pose an issue.
            Dx: 10/4/10
            Blood Results for tumor markers came back Normal.
            Surgery/ Left I/O: 10/26/10
            11/2/10 - Pathology report came in, 100% seminoma with no evidence of cord invasion. 3 foci, 1.1cm, 0.6cm, and 0.3cm.
            11/3/10 - CT scan of Pelvis and Chest is clear, no abnormalities.
            11/18/10- Surveillance
            10/26/11 - All Clear

            Comment


            • #7
              Hey all,

              So the results are in. I went to see my urologist about an our ago and here is the news he gave me.

              With regards to the pathology report he says its has come back as non-seminona which I must admit made feel very sick when I heard the words. He gave me a copy of the pathology report for me to review and here is the rough outline.

              Pathology

              The testicular tumor is a mixed germ tumor, composed of classical seminona (99%) and immature teratoma (1%) (See comments). The tumor is confined to the testis and does not invade the tunica, albuginea, the epididymis or the spermatic cord.

              The teratoma component comprises only 2 small foci of immature cartilage. Within the seminona there are rare small glandular formations, some well formed but others poorly formed. The cells lining the glands have nuclei not dissimilar to that of seminona. No other germ cell elements are seen. No somatic-type malignancy is seen.

              Comments - The rare glandular formations seen microscopically comprise less than 1% of the tumor and are of uncertain germ cell type. Seminona can rarely have glandular structures, and this is felt most likely in this case due to variability in the formations of the glands (some of which seem to blend into the seminona) as well as the similar nuclear features. (I REALLY DONT UNDERSTAND THE LAST LINE). Alternatively, the cytokeratin and CD30 staining suggesr embryonal carcinoma as a possibility. Yolk sac tumor is also a possibility however there is no staining for AFP.

              Blood results

              All blood levels appear to be within normal range apart from an elevated LD5 which is 26. Looking at the guide it should be within the 5-17 range.

              Elevated LD5 may be of hepaptic or skeletal muscle origin.


              What my Urologist has said.

              Basically my urologist is refering me to a Oncologist who will be able to review the pathology and blood tests and recommend treatment. He has warned me that it is likely that Chemo will be recommended as this can reduce the chances of further cancers. He said that a large number of people choose to go for survielance instead but that the reoccurring oncologist will be able to discuss treatments and there long term effects. He has arrange for me to get blood tests in 2 weeks in order to check my tumor markers which should hopefully be normal on all tests.


              So now I feel a little numb to be honest. I can certainly see that I have caught it early but was so praying that it would be 100% seminona. I have not looked at chemo yet as it scares the life out of me so feedback from all of you would be greatly received. Also any thoughts on the pathology report would be useful as I am reading that its pretty much seminona but that there is a very small germ cell element that is not even 100% clear what it is.

              Looking forward to hearing from you.


              Dave
              Dave Hanson
              Found lump 18/02/2011
              Ultrasound confirmed mass 23/02/2011
              CT Abdomen, pelvis, chest (clear) 24/02/2011
              Left I/O 1/03/2011
              99% Seminoma <1% Unknown germ cell 10/03/2011
              Staging T1 - 1A 10/03/2011

              2 month - 27/04/2011 - All clear!
              5 month - 16/07/2011 - All clear!
              9 month - 22/12/2011 - All clear!
              14 month - 22/12/2011 - All clear!


              Yesterday was history, tommorrow a mystery, but today is a gift. That's why it's called the "present"

              Comment


              • #8
                wow that doesnt sound too bad since it was confined to the testis. good thing you caught it early.

                wondering if you're going to do any other treatments?

                good luck

                Comment


                • #9
                  I don't know about other treatments. My urologist mentioned the chemo but I am unsure how often people go for this and the long term life expectancy effects.

                  I forgot to say the staging has been classified as T1.
                  Dave Hanson
                  Found lump 18/02/2011
                  Ultrasound confirmed mass 23/02/2011
                  CT Abdomen, pelvis, chest (clear) 24/02/2011
                  Left I/O 1/03/2011
                  99% Seminoma <1% Unknown germ cell 10/03/2011
                  Staging T1 - 1A 10/03/2011

                  2 month - 27/04/2011 - All clear!
                  5 month - 16/07/2011 - All clear!
                  9 month - 22/12/2011 - All clear!
                  14 month - 22/12/2011 - All clear!


                  Yesterday was history, tommorrow a mystery, but today is a gift. That's why it's called the "present"

                  Comment


                  • #10
                    I'm sorry you have to find yourself here. I really don't know enough about the 1% teratoma thing to give you an opinion. My husband has 60% embryonal carcinoma, 40% seminoma and had vascular/lymph invasion and just started BEB X 2 this week. So far he is doing pretty good with the chemo. Teratoma can be tough to deal with as I've heard it doesn't usually respond to chemo and can change characteristics. I think it may require surgery but with such a small amount I'm not sure how significant it is, sorry Hopefully your oncologist can tell you what the risks are and help you make the right decision for you. Where parts of your report are questionable, you may want to get a 2nd opinion on the pathology and the possible treatment options. Let us know how things are going and hang in there.
                    Tina, wife to Gene
                    Right I/O 2/21/11
                    60% embryonal carcinoma- 40% seminoma with L/V invasion, Stage 1B, Cat Scan- clear
                    HCG- 1.2, AFP-1.5, LDH-normal
                    BEP X 2 started 3-7-11
                    Bleo canceled for 2nd round, lung issues
                    EP 3-28-11 X 5 days, finished chemo 4-1-11
                    F/U cat scan 4/14/11 - Stable
                    3rd round EP as precaution because Bleo was cancelled, start 4-25, finished chemo 4-29-11, pneumonia 5-6-11
                    6-1-11, 8-3-11, 9-7-11, 10-19-11, 11-16-11, 12-18-11, 1-18-12, 5-8-12 Clear

                    Comment


                    • #11
                      Hey Mrs,

                      Been a bit emotional my end this afternoon. Feel lost in all this and scare myself so much with the what ifs. I know I should be positive but it plays over over and over in my mind.

                      The pathology report says that the germ cells are of an uncertain type and at one point say's "Alternatively, the cytokeratin and CD30 staining suggesr embryonal carcinoma as a possibility." I suppose there are no hard details on such a small result.


                      Dave Hanson
                      Found lump 18/02/2011
                      Ultrasound confirmed mass 23/02/2011
                      CT Abdomen, pelvis, chest (clear) 24/02/2011
                      Right I/O 1/03/2011
                      99% Seminona <1% Unknown germ cell 10/03/2010
                      Staging T1 - 1A 10/03/2010
                      Dave Hanson
                      Found lump 18/02/2011
                      Ultrasound confirmed mass 23/02/2011
                      CT Abdomen, pelvis, chest (clear) 24/02/2011
                      Left I/O 1/03/2011
                      99% Seminoma <1% Unknown germ cell 10/03/2011
                      Staging T1 - 1A 10/03/2011

                      2 month - 27/04/2011 - All clear!
                      5 month - 16/07/2011 - All clear!
                      9 month - 22/12/2011 - All clear!
                      14 month - 22/12/2011 - All clear!


                      Yesterday was history, tommorrow a mystery, but today is a gift. That's why it's called the "present"

                      Comment


                      • #12
                        I get my results next week. I am on pins and needles. I'll post what they find so we can compare. I am tired all the time now, and worry about going back to work next week. How has your work been?

                        Sam

                        Comment


                        • #13
                          I know what you mean about being tired. I went back to work on Monday and after the first day I was exhausted. I'm a software developer by trade and thought sitting down all day wouldn't have been so bad. I was going to bed at around 8pm each night and sleeping through to 7am which is unusual for me.

                          As the week progressed I have found myself with more energy however and more like myself. After the news yesterday I am wondering how much stress will play a factor in my energy levels today.

                          Do keep me posted on your results. I wish the best for you. I still feel cheated that I missed out on a full seminona by less than 1%

                          Good luck,

                          Dave
                          Dave Hanson
                          Found lump 18/02/2011
                          Ultrasound confirmed mass 23/02/2011
                          CT Abdomen, pelvis, chest (clear) 24/02/2011
                          Left I/O 1/03/2011
                          99% Seminoma <1% Unknown germ cell 10/03/2011
                          Staging T1 - 1A 10/03/2011

                          2 month - 27/04/2011 - All clear!
                          5 month - 16/07/2011 - All clear!
                          9 month - 22/12/2011 - All clear!
                          14 month - 22/12/2011 - All clear!


                          Yesterday was history, tommorrow a mystery, but today is a gift. That's why it's called the "present"

                          Comment


                          • #14
                            Shocked by what's going on...

                            Hi Dave:
                            Sorry you had to join the forum, but you will find great support here. My son is also 1A (diagnosis was 2 months ago) and according to all, that's a great spot to be in. He's chosen surveillance and he has no seminorma, only non-seminoma; 35% EC, 5 Chorio, 50% Teratoma and 10% Yolk Sac. So, although he has a 75% percent chance of not relapsing, there is always that chance. Still, it looks like you are in a very good position, given that you have TC, and I will only echo what someone else mentioned in an earlier thread. STart researching the options before your visit with the oncologist and try to figure out what will make you the most comfortable- with primarily seminoma, I am not too familiar with the options, but figure out where you are in your life and what you think you'd rather handle, as well as when. My son is only 19 and he felt comfortable with surveillance, although granted, all three doctors we took him to recommended that. He asked all of them what they would do in his case, and they were unanimously honest, I believe.
                            And, of course, a second opinion is always paramount in my over researched mind, but that is just me.
                            Best of luck to you with your decision,
                            Astrid
                            Astrid
                            Son Tyler (age 19) diagnosed 1/6/11-Surgery 1/11/11- 2.5 cm. mixed germ cell (EC, chorio, teratoma and yolk sac).
                            Elevated HCG -over 600, Elevated AFP - over 150
                            Markers returned to normal by 2/7/11
                            Stage 1a (no vascular invasion)
                            Surveillance since-
                            last CT check -8/15/11 - clear 7 months
                            last marker and lung xray check- 10/10/11 - clear 9 months
                            CT, xray and blood check - 12/12/11 - all clear -almost one year

                            Comment


                            • #15
                              I work in IT myself, so I pretty much sit most of the day too. I am finding it hard to concentrate -- not only because I am tired, but because my mind constantly wanders. I hate to say it, but sometimes I think things like: "Why should I learn this new software, I don't know how long I'll be here to use it."

                              I am still at home until Monday, but I take two naps a day, before and after lunch. Each nap is about 3 hours! I hope it is just recovery from the surgery and not a long term thing. My scar feels inflamed too. I can't wear underwear or pants yet. I wear some soft pajama bottoms that I pull up over my belly button so as not to rub my scar.

                              My appointment in on Wednesday, and it can't come soon enough.

                              Sam

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