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on the same path

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  • on the same path

    First and foremost....I love the site, the support and the education that I have enjoyed since viewing this site last night have been great.

    My story... I am 37 years old and my wife and I wanted to have a baby. Fertility testing has yielded some results that put me on the same path as many of the registrants to this and these forums. I'll try to make a long story a short one.

    I was born,.....LOL, no seriously, it does start that way...I was born cryptorchid (only 1 testicle, not undescended, completely agenesis) so I have feared this pathway my whole life, and wallah! here it is.

    3/5/07 Ultrasound results as follows; "The left testicle is very abnormal. It contains foci of increased echogenecity widely scattered throughout it compatible with testicular microlithiasis. There is one area within it which measures up to 1.8cm which has a mass like shape and there seems to be a fewer number of calcifications within this area than elsewhere. Microlithiasis has a strong association with testicular carcinoma. There is concern that testicular carcinoma may be present with the microlithiasis."

    3/8/07 Markers;

    3/8/07 Semen Analysis

    Test = 217ng/dL
    Test,Free=29.6 pg/mL

    3/16/07 Urologist Appointment.....being referred to Shands, Univ. of FL

    5/8/07 Shands Urologist re-orders Ultrasound test

    5/17/07 2nd Ultrasound Appointment
    5/17/07 2nd Semen Analysis

    5/31/07 Appointment with Urologist to review findings
    mass has grown to 3cm...orchiechtomy scheduled for next Thurs 6/7/07

    6/1/07 CT chest,ab,pelvic
    6/1/07 AFP, bHCG, LDH retested

    It seems from reading the threads of others, that everyone's timelines were managed with much greater urgency, but I think that my original urologist's hesitations arose from my only having 1 testicle to begin with and the obvious fertility issues that correspond. I will say that I was/am discouraged by the length of time that elapsed in receiving the appointment with Shands, but was repeatedly told that since, "they are the experts, it takes time."

    I'm fairly concerned about the HRT that will follow my surgery and how I might change as a result......additionally I'm concerned about the pending results (pathology, CT, markers) but there's no sense in worrying about what I don't know yet.......regardless of the results, I'm confident from reading the threads/stories of others contained herein, that I'm gonna be fine.

    I don't really have any questions at this time as there isn't anything concrete to work with 'til after my surgery and the results come back, but I would welcome any commentary that would come my way, as I already feel a sense of comfort knowing there are many others out there who have had this surgery, survive and carry on.

    Thanks to all of you who contribute to the well being of others, unselfishly and with great concern and kindness.

  • #2
    Welcome, slimjim, I'm glad you found us here.

    I know your count was low, but are you banking sperm before your surgery next week?
    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
      My wife has blessed me with her son from a previous relationship....with only 2 potential deposits possible, ridiculously low numbers and my urologist's strong recommendation not to postpone surgery, we have decided that we're okay going forward without was/is a difficult door to close....we're a strong couple/family...we're going to be fine...


      • #4
        At least it's a conscious, informed decision you're making. I have no doubt that you will be fine!
        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!


        • #5
          Welcome slimjim, sorry you had to join us but we will do all we can to help, encourage and support. Given your markers and age you are most likely dealing with seminoma...the most highly cureable of cancers. You sound like you're in a good place with regard to having the support of family and going.

          A wealth of information can be found on the home page of this site as well as
 Read all you can to prepare for the questions you'll need answers to. Please keep us updated when you get your results from June 1. You will be fine.
          Retired moderator. Husband, left I/O 16Dec2005, stage I seminoma with elevated b-HCG, no LVI, RTx15 (25Gy). All clear ever since.


          • #6
            I have nothing to add other then to let you know we're here for you. As you get the results of your tests please post them and we can try and help you understand the process of curing whatever you have.
            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.


            • #7
              Thanks Karen, Robert2112 and dadmo.... I wasn't surprised about the length of time between appointments until I got here (the site, last Friday....)so many of others' stories have such rapid turn around times.....I think everyone was hoping that we'd be able to bank or delay surgery and Shands Urology is just swamped.......

              My testerone levels were taken in early March (posted in original thread)...should I have them redone before Thursday? I'm supposed to have an appointment with an Endicrinologist soon to discuss the HRT, but I have not heard from the scheduler yet. I'll jump off that bridge when I get to it....I don't want to think about the issues with t supplementation until after this initial round is over....

              I was told my CT and my markers should be complete by Wednesday...I'm thinking that if it's good news my doctor will want to discuss them before my surgery Thursday.....if not so good I bet he says he hasn't got them yet!! We'll have to wait and see....I'm mentally prepared for whatever comes my way.....

              Thanks again for the responses....I'll be posting my "report card" as soon as I have the surgery and can get to a keyboard!!!!


              • #8
                Hi Slimjim, and welcome... This is definitely the place to find people that understand, get plenty of excellent information, advice, and expert contacts.

                Son Anthony DX 12/11/06
                L/O 12/20/06 Stage IIIA, 95% EC, 5% Yolk Sac
                4XEP 1/29-4/6/ 07
                AFP started increasing3 wks later
                Residual abdominal mass found on CT
                RPLND 6/8/07
                Cancer in pathology-
                80% mature teratoma, 20% Yolk Sac. --
                No adjuvent chemo and
                AFP normalised

                July 22, 2010 ---- 3 years all clear!


                • #9
                  update and questions

                  Well, my surgery has been moved to Monday instead of Thursday due to recent aspirin usage....(i saw something in a thread and questioned my Urologist's PA about my concern having taken apsirin prior to exercise on Sunday...good thing I guess, but just more waiting).

                  I have some questions that maybe someone can shed some light for me....

                  I have not heard or seen in many threads the term or involvement of microlithiasis in relation to I common or uncommon? Is this an indication of anything in particular?

                  Also, I havn't seen many incidences where removed masses (I/O) were not cancer. Obviously, I feel that my surgery is the right avenue, but I can't help thinking about what else it could [email protected]#....

                  Lastly, having been born with only 1 nugget, I had a prothesis installed at 13 (1983), and up 'til now I have had no issues with it whatsoever, but I can't help wondering (after reading pros and cons from another site) if it somehow may have contributed to my condition....anyone have any insight, background or comments? My urologist and I have agreed to replace both my existing prothesis and my ill-nad, with replacements faux-nads, however I'm still digging for research/opinions etc...


                  • #10
                    I'm ready for surgery....I've been mentally and emotionally preparing for it since I intercepted my first CT's results in March. I hadn't questioned the urgency until I began reading this site last week. I expressed my concerns today about the aspirin because of something that I had read over the weekend and was met with grave concern. I also asked about my markers retest and CT from last week, but "no results have made it to them yet." They (Shands-Gainesville, Florida) don't seem concerned about the rescheduling. Until I read the threads of others, I thought I was moving through the process with normal definitely doesn't seem that way to me now. Although Monday was what was they said would be the day, I will call tomorrow to see if sooner arrangements can be made. Nevertheless, i remain "gloves up". Thanks for the feedback.


                    • #11
                      When the urologist told my husband it looked like he had TC from the ultrasound Ray also needed to wait for the surgery because of the 81mg aspirin he takes each day. The surgical team all wanted him to wait ten days but we ended up waiting eight....and that was hell, so I can't imaging how you feel with your wait. The doc said if it wasn't for the aspirin they would have taken it out the next day, but concerns about bleeds are very real.
                      Hope you can get the damn thing out soon and move to a cure!!!!
                      Retired moderator. Husband, left I/O 16Dec2005, stage I seminoma with elevated b-HCG, no LVI, RTx15 (25Gy). All clear ever since.


                      • #12
                        Hi Slim, glad you found us, but hate that you have to be here...if that makes any sense.

                        So many things to touch on in your posts. Many people here have struggled with the desire to have more children and your outlook is really something special. And there are some creative ideas out there for having another child if that is where your heart directs you. I am glad first that you are taking an active role in getting the surgery done.

                        I thought a lot about the fact that you were born with one testicle and then you also asked about the implant. I asked my husband's doctor about possible connections as to why some people get this cancer and he always told me that it was random. I am not sure myself. I know my husband had a hernia that he was born with and he had it operated on when he was in his late 20's. They said it was the worst one they had ever seen. It was on the same side as the cancer. They told me there was no relation, but I still wonder.

                        I hope everything goes well for you. This is a great place for advice and support (these guys are really smart )! You and your family will be in my thoughts.

                        Co-survivor with husband Boyce, Diagnosed 7-11-06, orchiectomy right testicle on 7-12-06- Stage 3A: Mixed germ cell tumor with inguinal seminomatous and kartotypic carcinoma. One tumor over 10 cm, second tumor 4 cm, Chemo 4xBEP: Bi-lateral RPLND Dec 2006, nerve sparing but left sterile.
                        Current DVT
                        Current testosterone replacement therapy, Testim.

                        "You must abandon the life you planned, to live the life that was meant for you" ~wisdom I have learned from my family on this forum


                        • #13
                          Being born with one testicle or an undecended testicle are risk factors. Being born with a hernia is a risk factor. My husband was born with one testicle and a hernia. When he was five he was operated on to "bring down" the testicle and to repair the hernia. He was operated on at Philadelphia's Children's Hospital by a former US Surgeon General. We had fertility problems that stemmed from a low sperm count. Again, it was a sign. He was diagnosed at 35 with TC. We then learned that he was a "text book" case for TC. I guess no one read the book or paid attention to what it said. However, this was 1980 and no one talked about it. My son was diagnosed 24 years later, he had no risk factors except that his father had the disease. Had we known there was a genetic factor (which we were told repeatedly that there was none) we might have been able to spare my son a lot of pain, both physically and emotionally. I do not think having a prosthesis implanted has anything to do with your diagnosis. My husband has been on TRT since 1980 and he has done fine. It will take a while to get the right dose but losing this testicle will not make you less of a man in any respect. You are going to be okay, Slimjim. Dianne
                          Spouse: I/O 8/80; embryonal, seminoma, teratoma; RPLND 9/80 - no reoccurrence - HRT 8/80; bladder cancer 11/97; reoccurrence: 4X
                          Son: I/O 11/04; embryonal, teratoma; VI; 3XBEP; relapse 5/08; RPLND 6/18/08 - path: mature teratoma


                          • #14
                            Just to add my two cents worth. I am an "old guy", who was taking low dose (81mg) aspirin when I had my ultrasound. It was Good Friday, so the main reason my surgery was postponed until Monday was the holiday weekend, not the aspirin. My surgery was 4 days after taking a low dose of aspirin, and my urologist was glad to be aware of it, but not overly concerned about it.

                            I agree with the others that it is not a good excuse to postpone your surgery further. I also can't understand why it is taking so long to get your CT results and bloodwork results.

                            Anyway, I hope your surgery goes well and the results of the bloodwork and CT come back clean.
                            Right I/O 4/17/06, Seminoma Stage Ib
                            RT (15 days) completed 6/1/06
                            All clear as of 5/8/09


                            • #15
                              some good news...i think

                              Well, some good news..i think...CT's "clear" and markers as follows;
                              afp March=2.1....afp now=2.4
                              bHCG Mar=2......bHCG now=3
                              didn't have LDH in Mar, but now it's 176.

                              Does this mean no invasion? No metastisis? No spreading?

                              Additionally, I've finally gotten an appointment with an Endicrinoloogist...unfortunately,..the day after did everybody do traveling the next day? I'll be logging about 240 miles between going home from surgery and returning the next day. Maybe a hotel would be good idea?

                              Regarding the soon after surgery does the replacement need to begin?

                              I didn't have any success in moving the surgery, so Monday is the day!