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  • New to the forum...just been diagnosed.

    Well, this is not a group that I wanted to join (no offense intended) but I'm sure you all felt that too. My story is just beginning and I'll have a lot of questions. I've learned a lot by reading some of the posts already.

    My situation is that I just had an I/O last Wednesday...the Urologist has been saying from the first appointment that "nothing looks like cancer", "you're not presenting like cancer", "I'm sure this isn't cancer", etc. I was more pessimistic and unfortunately my intuition was right.'

    Pathological report came back in Tuesday....Cancer. Wow, that word just stuns you doesn't it? Moving on to an Oncologist tomorrow. Here are a few questions:

    The report leaves the "Pathologic staging" blank. But from what I've learned from this forum I think I'll be staged as IA. Is this right? Here's my info:

    Tumor Focality - Unifocal; Tumor size 9.5 cm ; confined to the testis; seminoma, classic type; intratubular germ cell neoplasia; margins = Spermatic cord = "uninvolved" by tumor; Lymphovascular invasion = "not identified". Primary tumor = pT1. Regional lymph nodes = pNX.

    Wow, what does all that mean? The medical oncologist I talked to today said to come see him in the morning, but that the "good news" is that you "won't need me" and that he's going to refer me to a radiologists tomorrow.

    This is going way too fast....I know I want to attack this thing, but is this the right path? What questions should I ask the Oncologist(s) tomorrow? HELP!

  • #2
    You should ask about surveillance (and adjuvant carboplatin) rather than leap straight to radiation therapy. Have you had a CT scan yet? What are your blood test results?

    That's a big tumor. You couldn't have been too comfortable before surgery!
    Scott, scott@tc-cancer.com
    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
      Blood work...pre-op

      AFP = 2.8 ng/ml
      HCG = 2.0

      They didn't do an LDH...not sure why.

      Comment


      • #4
        I also had an Ultrasound....scheduled by my Primary Doctor when he referred me to the Urologist. She then sent me for an MRI. And then sent me again for a CT Scan....all those scans were evidently "clear"....whatever that means. Still with the size of the tumor we went with the I/O to get it out of there. BTW, my primary doc mentioned the different size of my testicles during a physical 6 months ago, but didn't tell me to do anything. I kept monitoring it and eventually went back a month ago and said that this "different size" think just didn't seem right...that launched the referral to the Urologist and to where I'm as today.

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        • #5
          Originally posted by Rdgoode View Post
          Regional lymph nodes = pNX.
          The X means "not assessed," but since your imaging tests were clear, your body may well already be cancer free from the orchiectomy. Definitely talk through all the options, including surveillance.
          Scott, scott@tc-cancer.com
          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 Foundation services for people facing cancer now. Please join me!

          Comment


          • #6
            I don't know if I have missed this in the previous posts but you definitely meed a CT scan.

            Make sure you get one of these ASAP, not months later, the CT sacn will definetly tell you if the cancer has spread and if further treatment is neccesary.

            I know they will probably do this but from my own experiences and what I read here, I am starting to take a somewhat different perspective to some of the medical proffesion.
            Jan 2012 - Pain and swelling
            March 2012 - return to Doc
            March 2012 - Ultra sound detects 4 cm mass
            April 2012 - I/O
            April 2012 - Mature (differentiated) teratoma
            April 2012 - CT Scan no abnormalities found

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            • #7
              Staging

              Originally posted by Rdgoode View Post
              Well, this is not a group that I wanted to join (no offense intended) but I'm sure you all felt that too. My story is just beginning and I'll have a lot of questions. I've learned a lot by reading some of the posts already.

              My situation is that I just had an I/O last Wednesday...the Urologist has been saying from the first appointment that "nothing looks like cancer", "you're not presenting like cancer", "I'm sure this isn't cancer", etc. I was more pessimistic and unfortunately my intuition was right.'

              My GP said he didn't think it was cancer but the urologist told me straight away he thought it as probably a seminoma. You were right on to follow your instincts.


              Pathological report came back in Tuesday....Cancer. Wow, that word just stuns you doesn't it? Moving on to an Oncologist tomorrow. Here are a few questions:

              The report leaves the "Pathologic staging" blank. But from what I've learned from this forum I think I'll be staged as IA. Is this right? Here's my info:

              Tumor Focality - Unifocal; Tumor size 9.5 cm ; confined to the testis; seminoma, classic type; intratubular germ cell neoplasia; margins = Spermatic cord = "uninvolved" by tumor; Lymphovascular invasion = "not identified". Primary tumor = pT1. Regional lymph nodes = pNX.

              My tumor was 5cm supposedly older NCCN guidelines indicated that tumors > 4cm were more likely to spread but that has been debunked and its not part of the current NCCN guide.

              PT1 means you are stage 1, that's same as mine. Supposedly if you have to have TC pure seminoma is better than some of the other more virulent forms.


              Wow, what does all that mean? The medical oncologist I talked to today said to come see him in the morning, but that the "good news" is that you "won't need me" and that he's going to refer me to a radiologists tomorrow.

              My urologist is pushing me to radiation as well, but I am going to see an oncologist that doesn't have "radiation" in front of his name, seems to me he may only have one hammer in the bag, and one thing I have learned here is that one size does not fit all. For stage 1 cancer with a clear CT there are at least 2 other treatments bedsides radiation, that is 1 x carboplatin "chemo light" and simple surveillance.

              I want to make sure I have weighed all of the options before deciding. In my case I was originally told my CT was clear by the urologist but when I read the report for myself it said I had a single 1.2 cm lymph node, not sure if that changes my staging but I still am not ready to blast away with radiation since it is known to cause secondary primary cancers that are a lot nastier than TC.


              This is going way too fast....I know I want to attack this thing, but is this the right path? What questions should I ask the Oncologist(s) tomorrow? HELP!
              Ask about NCCN guidelines, check out some of the other treatment options.
              03/16/2012 Ultrasound Diagnosis TC (Tumor 5.5 cm)
              03/22/2012 Right I/O Pre-IO markers normal
              03/28/2012 Pathology Classic pure Seminoma, pT1/N?/M0/S0
              04/05/2012 CT Scan--Clear? (single 1.2 cm node External iliac)
              05/03/2012 PET Scan CLEAR. All markers Normal.
              05/04/2012 1 X CARBOPLATIN INFUSION (Chemo Lite)
              09/02/2012 CT All Clear! (1 cm External Illiac Node)
              04/04/2013 CT All Clear!

              Comment


              • #8
                Hi my friend, and a sad welcome also from me. I know, it's better not to have those kind of pathologies, but I also think that, once that something like a cancer is diagnosed to be inside ourselves, the only solution for us is to get our head up and prepare to fight it. As probably a lot of persons could have said it to you yet, the testicular cancer has a very high cure rating percentage, so don't feel lost and stay with us on the forum. All together we will beat it, always think positive!

                Regarding the informations that you have written here, I'm only surprised about the size of the tumor (9.5 cm) but, according to the other informations that you have written, your marker levels aren't very high (and are in the range btw), your CT scan came back clear, the doctors saw the tumor only limited to the testis, the spermatic cord is free from invasion, so I think that by now you are in a good state and there are no worrying elements. Probably (but I'm not sure, I'm not a doctor and I say this to you only with my logic sense) the lymphovascular invasion is not defined since the tumor is only located into the testicle. Talking about the parameters, the infos that you have now are pT1 and Nx. This means that the cancer is as its first stadium (and this is a good news) while the Nx value stands for "regional lympho nodes that could not be evaluated". This could mean that, when your orchiectomy was performed, the doctors didn't found any enlarged or damaged lympho node so they didn't send them to the histologic unit to explore them (very probably, also the third parameter, in this case, the M parameter would be marked with a x "Mx"). For example, my tumor was classified as a pT1,Nx,Mx on my histologic report, but, after a Pet scan, it was restaged as pT1,N0,M0 because this scan didn't found mets or suspected masses in the rest of the whole body. If you read some topics here in the forum, I have suggested to some other friends to talk with their oncologists about the possibility to have a Pet scan before deciding the best treatment. And I think that, for your case, with a 9.5 cm tumor mass, it would be the ideal to solve any doubt. While the CT scan, in fact, sees only the shape and the morphological building of the organs, the Pet analyzes also the metabolic activity of the cells inside them and gives you a complete picture of the situation at almost 100%. For example, my oncologist, after seeing me the first time had the path report in his hands and was forcing me to do the radiotherapy treatment because there were the "Nx" and "Mx" parameters. I requested him to do a Pet scan, I did it, it came up back all clear, and for this reason I chose the alternative way of surveillance Furthermore, if is a pure seminoma, you have the 99,9 percentage of being cured. (I have learned from the doctors not to say 100% because they explained to me that in medicine, unfortunately, things are never certain without doubts.)

                Good luck and please, even if I know it's difficult, try to remain calm and most of all stay strong!

                Frank

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                • #9
                  Diagnosed with pure seminoma

                  I am a 34 y/o Caucasian male living in Denver co. After detecting some hardness and swelling on 3/12/12 I was recently diagnosed with 100% pure seminoma in right testicle by a urologist on 4/12/12 after subsequent radical orchiotemy. Where they determined I had a t2 4cm tumor, with Vascular invasion. Blood markers were normal before and after surgery, cat scan and chest X-ray came back all clear as well. I guess becuase of the size of the tumor and the LV invasion I am a stage II. On Monday I will be scheduling an appnt with a chemotherapy specialist per my urologist recommendation , just wondering what I should do regarding treatment. God Bless to all! Thank you to whomever created this awesome help forum!

                  3/12/12 - swelling and hardness
                  4/5/12- 1st urology appnt
                  4/12/12 - I/O right testicle
                  4/20/12- lab results - 4" t2, pure seminoma with Vascular invasion
                  4/24/12 - ct scan, chest X-ray
                  4/27/12 - follow up appnt, ct scan, chest X-ray, blood work = all clear
                  Last edited by lifesbeautiful; 04-29-12, 08:29 PM. Reason: Correction

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                  • #10
                    NCCN Guidelines

                    @lifesbeautiful

                    I am currently facing treatment decisions as well, there is a wealth of info here. I am asking my oncologist to go by the NCCN guidelines for staging and treatment, the guidelines are here
                    https://subscriptions.nccn.org/gl_lo...testicular.pdf

                    you have to register to access but its free.

                    Typically for seminoma its radiation, 1x carbo, or surveillance
                    03/16/2012 Ultrasound Diagnosis TC (Tumor 5.5 cm)
                    03/22/2012 Right I/O Pre-IO markers normal
                    03/28/2012 Pathology Classic pure Seminoma, pT1/N?/M0/S0
                    04/05/2012 CT Scan--Clear? (single 1.2 cm node External iliac)
                    05/03/2012 PET Scan CLEAR. All markers Normal.
                    05/04/2012 1 X CARBOPLATIN INFUSION (Chemo Lite)
                    09/02/2012 CT All Clear! (1 cm External Illiac Node)
                    04/04/2013 CT All Clear!

                    Comment


                    • #11
                      @cbvance

                      Thanks for that NCCN link! Tons of super helpful information in here.
                      John
                      28 Years Old
                      Canada

                      March 15, 2012 - Discovered lump on LT.
                      March 30, 2012 - TC Cancer confirmed.
                      April 5, 2012 - Left I/O (AFP: 15.3 b-hCG: 47 LDH: 80)
                      April 20, 2012 - Chest x-ray clear! <3
                      April 28, 2012 - CT clear! <3 .. markers normalized
                      May 8, 2012 - 100% EC (1.4x1.1x1.1 cm) pT1, Nx, Mx
                      May 8, 2012 - On surveillance!

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