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  • Cant stand the waiting

    Well, after spending an hour typing a previous post and losing it, I'll try again.

    New to the forum obviously.
    I'm 41, married for 18yrs with 3 kids 12, 10, 8.

    Brief history.
    Since I was a kid, I have had what i believe is called a retractible testicle (right) , that is after it decended, it would pass back into the abdomen and then back into the scrotum. Usually when I would sit down it would pass back up, then back down when I stood. Don't know why, but that was the way it was. Since it would pass back and forth, apparently, it never developed properly. I has been about 1/2 the size of my "normal" left testicle, and always sensitive and tender to touch and pressure. About 13 years ago, when the wife and I first tried to have children, we had difficulty, so we had fertility testing. I had a scrotal ultrasound and sperm testing. My sperm count was low normal, and my ultrasound showed "calcium deposits" but otherwise normal. End of that episode, then about 12 years ago I had right side inguinal hernia repair, which I had had almost all my life. Why I waited so long I have no idea, but I had a mesh put in, repaired the hernia, and at that time the surgeon removed an enlarged pelvic lymph node he noticed, biopsy came back clear.

    Fast forward to about 2 weeks ago.
    First, let me explain that I have tried to keep myself educated, I have some minor medical training, my wife is in the medical field, so I understand the basics. And most of my adult life I have know that having this uderdeveloped testicle put me at a higher risk of TC. I have always done self exams, unfortunately not daily, but at least every week or so in the shower when I would remember. So anyways, I reach down, and to my absolute shock, my right testicle had doubled in size in what I would guess to be a months time. Now I beleive about 2 weeks prior to that I had noticed it slightly larger, but must have disregarded it as feeling more "normal" or maybe thought it was finally starting to grow to more normal size (yes I know, stupid). I noticed it was firm, oval in shape (not bean shaped my my left "normal" testicle. Definately not good. I fret about it for a day, then told my wife, who of course immedialy insisted I call the Dr. I waited another day then called a urologist for an appt. Now, my medical plan is fairly good, I don't have to go see a plan primary physician and get a referral, although it is recommended, I can pick any participating physician and go straight to them. I started researching and quickly found there are no uroligists I can find locally that advertise or state they handle or specialize in TC. Prostate specialists are everywhere, but not one mention of TC. So, I looked for the largest urology practice in the area, and then picked the physician who seemed to have the most experience. (practiced for 20 years, on board of this, that, and everything, and practices some newfangled surgery on prostates.) At least he should be able to refer me to someone who is a specialist if he doesn't I thought. So I call the office, and they are able to give me an appt in about 5 days. I go in for the appt, give the doc a brief history as I have here, and he gives me the exam. Yep, feels abnormal, gonna have to do some more testing. He has me get a blood test for markers, and an ultrasound. He briefly explains the procedure (if they find anything, the testicle comes out, biopsy, etc.) I am able to drive straight to the lab and get the blood test, but I have to wait 4 days for an opening for the ultrasound. Anyhow I have the ultrasound last friday, and they tell me to call the doctor on tuesday for the results (he in in the office on Tues and Thurs and Friday mornings, does surgeries all other days). I go through the anxiety of having to wait, and yesterday (tuesday) I call. He is with patients, but calls me back about 2 hours later. The blood work came back normal, but the ultrasound was not, it must come out. He seems strangely unconcerned, well, not unconcerned, but seemed to already have it figured out in his head what it was and how it would play out.? He explained that it was probably a seminoma, but I did the right thing and cought it early before it got worse. He stated although it was probably a seminoma, it could be anything, they needed to biopsy it to be sure. After the surgery, he stated they would get pelvic and chest xrays to be sure I was clear, but the surgery would probably clear me. This seemed odd to me. I thought that if cancer was suspected, all the stops were pulled out, every precaution was taken, and nothing would be taken for granted. Maybe I'm getting ahead of myself.
    Then he advised me his office would call me to schedule surgery, they would call me within one week. He gave me the option of 2 hospitals he works out of, an stated his schedule is determined 6-8 weeks in advance, but I would not need to wait that long...

    So, today I sit here in a panic. My mind races with every possibility from a quick recovery to my family mourning me at graveside. I sit here typing with this dull ache in my groin, knowing that this diseased thing grows inside me, every passing minute a chance for malignant cells to find their way elsewhere in my body. I want to run in the garage and grab the pruning shears, the way I feel is hard to describe. I have done my part, I have tried to stay in shape, I lift weights, run 3.5 miles every other day, don't smoke, drink once a month socially, and have a protien shake for breakfast, a protien shake with lowfat milk, bananas, and strawberries in a blender for lunch, and a healthy dinner for breakfast. Try to eat very few sugars, no caffiene, drink bottled water like crazy, all to stay healthy for my family and myself, wanting to enjoy my retirement when it comes (5 years). And with all that, here I sit with the realization that this thing could snuff me out regardless. All around me are folks who get no excersize, smoke like chimneys, eat what they want, and go on oblivious and without problems. Whatever. I'm a tad bit bitter. I work with about 220 folks at my employer, and my job puts me in touch with all of them, like a large family. Over the last 20 years, 2 coworkers have been diagnosed with cancer. It killed both of them, quickly. I know more non-survivors than survivors, and it does not make me feel good. I am scared, no denying that. I apologize for the long rant, I had to get these things off my chest, a catharsis of sorts I guess.

    So, should I just wait? Should I try and find someone else to cut me quicker? What should I demand, a cat scan? If it is seminoma, is protocal to do a round of chemo to be safe? Should I have my testosterone level checked pre surgery to have a comparison? Should I be referred to an onchologist if it is cancer? I have the feeling he's going to give me xrays and send me on my way if they are clear.

    Thanks for lisening,

    Loosing my mind in MI
    Mike
    Diagnosed 11/8/2006 Right I/O 3.3cm Seminoma Stage 1:T1. Finished Radiation Therapy 12/26/2006.
    On Surveillance.

  • #2
    Go to a cancer center, if you can. Get your US report. Get it out ASAP, even if you go to someone else. I did that, and the cancer center could do it one day before my regular urologist. I chose the cancer center. Once you get it out, you'll feel MUCH better, much more relieved. However, you will then have one of the worst weeks in your entire life, waiting for the pathology report. Try to have fun, and get your mind off of it. I already new that my lymph nodes were fine, Chest X-rays clean, and markers normal. That alone rules out a lot of bad stuff (clinical metastases, choriocarcinoma, etc.). As I was saying, try to have fun, and work at your job if you can. It really will help release some stress.

    You'll finally get your path report. Probably will be seminoma. Not good, but better than other possibilities. You probably will not need chemo. You will probably need radiation, based on the path report. Maybe you can go on surveillance. Wait and see what they say. Either way, not something you want to obsess about.

    There is a really good chance this won't kill you. REALLY really good. I know 5% or even 1% chance of dying is unacceptable to most, but that is our reality now. Chances are, those who died of stage I seminoma, were non-compliant with their follow-ups. You won't be, so you'll stack your odds in your favor. Actuarily, your chances of dying from this are on par with riding a motorcycle as your primary means of transportation.

    Incidentally, did you have children? Freeze sperm if you didn't.

    Good Luck, and welcome to the forum.... I hope that they find nothing, and that you never have to come back, but please keep us updated.
    Detected mass 10-6-06, Radical left I/O 10-10-06, Stage I seminoma, 1.5 cm primary, No LV invasion, No Rete Testis Invasion... Currently on Surveillance.

    Comment


    • #3
      Mike,
      Welcome!! You are not losing your mind. And scarey as this is right now, you WILL be fine! With clean markers and your age chances are high that if it is TC it's a seminoma. Most treatable type of the most cureable cancer. Visit my favorite site and read up http://tcrc.acor.org.
      Your doctor is correct that the pathology will tell the story on this. CT scan and chest X-ray will be done as well for the staging and after the surgery is OK since your surgery will be relatively soon. As you read up on seminoma you'll see it follows a very predictable path of metastesis. It is also slow growing so while you do need to get this out ASAP, the hedge pruners are not needed. My husband takes low dose aspirin and because of that he needed to wait 10 days from ultrasound to surgery to get the anti-coagulant effect out of his system. Do you have a report on the US? A size estimate? Another thing I advocate is getting copies of ALL your labs and scans for your own records and understanding as well as for a second opinion if needed.
      The surgery you had for your hernia can disrupt the lymphatic system a bit, but until you know what you have you can't decide on a treatment option. I think as you read up on this you will find comfort that you WILL be fine! If there's an expert (see the site I referenced) it never hurts to get a second opinion.
      Retired moderator. Husband, left I/O 16Dec2005, stage I seminoma with elevated b-HCG, no LVI, RTx15 (25Gy). All clear ever since.

      Comment


      • #4
        Mike,
        Another invaulabe resource to put things in perspective as far as diagnosis and treatment options as well as follow up schedules.


        Post the US results if you can....
        Did I mention 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.

        Comment


        • #5
          Mike:
          The panic at this early stage is normal, I know you can't but try and relax a bit. With proper treatment your outlook is excellent. The doctor is right about needing all the extra tests, he will need those results to help determine how best to treat you. If you caught it early enough you may be cured by the simple removal of that testicle. That would mean no radiation or chemo just a very tight schedule of follow-ups. Wouldn't that be nice. It would be good to have the testicle removed sooner but certainly don't wait beyond the two weeks. Check out this web site it has great information about testicular cancer. The most important thing you can do now is to educate yourself. Please feel free to ask anything and don't worry about asking the same question more than once.
          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.

          Comment


          • #6
            Welcome, Mike! You've already been pointed to all the best resources. Rest assured, you will be cured.
            Scott
            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!

            Comment


            • #7
              Thank you for lending an ear and your words of encouragement. I apologize for the whiney tone of my first post. I know there are many who would gladly trade places with me. I am a very very fortunate person to have the family and life I have. My I/O is scheduled for Wednesday morning, the wait is almost over. Thanks again.
              Mike
              Diagnosed 11/8/2006 Right I/O 3.3cm Seminoma Stage 1:T1. Finished Radiation Therapy 12/26/2006.
              On Surveillance.

              Comment


              • #8
                whiney??? Holy cow considering the situation that's not bad.
                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.

                Comment


                • #9
                  Nah, you're not whiney... this crap is very scary. Good luck in your I/O. I didn't think things would improve after mine, but they have, and dramatically. It's an easy operation, with rarely any complications. You'll feel great, afterwards, and waiting 'till Wednesday isn't that long.

                  I'm happy my traiterous testicle is out, and I'm hoping I will need no additional treatments. I just had final kidney stones destroyed, and next week I think I might start exercising again. I also have my first meeting with Onco, so some decisions will be made.

                  Again, good luck, and welcome to the community!

                  Regards
                  Detected mass 10-6-06, Radical left I/O 10-10-06, Stage I seminoma, 1.5 cm primary, No LV invasion, No Rete Testis Invasion... Currently on Surveillance.

                  Comment


                  • #10
                    Having to wait until Wednesday is the hard part. After the surgery you will be fine a couple weeks after surgery and thing will be about 75% you just have to be careful that you don't get another hernia by doing too much.
                    The recovery is just like hernia operation follow the lifting restrictions and you will be fine. Once you get your results let us know what they found and the posters will give you some good advice.
                    Good luck
                    Brian
                    5-1-2006 Right IO - Stage 1 Nonseminoma Embryonal and Yolk sac - Surveillance Baby on the way Born 7-20-07

                    Comment


                    • #11
                      Whine, yell, cry -- whatever you need, we don't mind.
                      Scott
                      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!

                      Comment


                      • #12
                        It will all be good.....whichever road you have to take. I hope all is going well for you in the recovery stage of the I/O.
                        My thoughts and prayers for you and the family,
                        Brian
                        diagnosed 01/15/2005 bi-lateral seminoma stage IIa,4cm lymph node, right I/O & partial left I/O mar/2005, 18 days of radiation, remaining left I/O- aug/2005, surveillance, Wife did IVF oct/2005, DAD OF BABY GIRL born 08-02-2006!!! testosterone implants May 2008

                        Comment


                        • #13
                          From the sound of your post, your urologist was not too forthcoming with information. Did he say what he saw in the ultrasound? My urologist put up the films and showed me the details of my mass. I was glad of that because I understood what we were looking at. Have you had a CAT scan yet? Some seem to report they have theirs after their I/O. I had mine the day of the diagnosis, and 3 days later when I went in for surgery, I was comforted by the news that the CT was clear - so if it was TC, it had not visibly spread.

                          I was on low-dose aspirin and the urologist delayed surgery 3 days because of it. I did have a lot of brusing, possibly because of the aspirin, but still the I/O was not as bad as I had expected and I healed quickly with no complications. Hopefully you will too.

                          You have every right to be angry, scared - or any other feeling you are having right now. You have done everything right for your health and still got cancer. The good news is that when you are cured of TC (and you will be), you will be in great health.

                          Let us know how it goes and what the results are.
                          Right I/O 4/17/06, Seminoma Stage Ib
                          RT (15 days) completed 6/1/06
                          All clear as of 5/8/09

                          Comment

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