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  • My first post, need some advice

    finding out that worried mom was already a user name when I tried to resgister indicated I am not alone. My son is 23, we were on a family vacation, he had swelling and discomfort, went to a clinic in a foreign country, had ultrasound, doctors said epidimitis?, gave huge doses of antibiotics. My son wanted to come home, he had a bad feeling. we called family doc, faxed reports he set up appointment with urologist for yesterday. Doc examined him, knew right away,sent for ultrasound, results positive left side, had blood work,xray etc, surgery scheduled for this morning at 10am.It has happened so fast Im in shock.I have spent all night reading everything available . My son has agreed to spend the night at home but wants to return to his apartment tomorrow. Im a mess about him going home,being alone and waiting for the path report. I am trying to remain calm, losing it.Advice please!!

  • #2
    Hello there,

    As rushed as it may seem, I want to welcome you to the Forum. I bet the whole ordeal has thus far been so overwhelming that you probably haven't even had the time to catch your breath. As a parent myself, and as many moms and dads here can identify, anytime your child is ill, it almost feels like the weight of the world is falling on your shoulders; hence, the feelings of anxiety are completely normal.

    As far as your son's diagnosis is concerned, you shouldn't look back and think about the "what ifs"; you need to look forward so you, your son, and your family can face this head-on. He is having his surgery done in a couple of hours, and that is the most important, first step in ridding oneself of this monster. True, waiting for the results is horrendously painful, but once you have the data from the radiology, markers, and pathology, a course of action can be set. In fact, with the I/O, your son is already on his way to a cure.

    In the meantime, let your mom's instincts kick in and help him out. The surgery is quite simple, and shouldn't take more than 60-90 minutes. The recovery is also easier than it seems. Your son should do no heavy lifting for 4-6 weeks. He should be able to walk on his own (with a wobble) soon after surgery. The painkillers will help, and he should take them as needed; but don't overdo it because they can cause constipation, and the last thing you need is to strain when having to go to the bathroom.

    How is your son holding up? I can understand him wanting to go to his apartment soon after surgery; it's a way of trying to shake this off as quickly as possible. One of the things we patients strive for is a sense of normalcy, and I gather that in his case, that's the way of finding it.

    Please don't hesitate in contacting people here for whatever you need. There is plenty of experience within the Forum members, and everyone is here to help. Best of luck with your son's surgery,
    "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.


    • #3
      Welcome, unfortunately. Yes, we have a host of worried moms here, so you are definately not alone. As Fed stated, the quicker the better for the I/O and that's a very big step for a cure. Now is the time to educate yourself on what TC is all about, the questions to ask the docs, what the terms on the pathlogy report mean, and what the next steps are. Factors that will be used in staging and determining the treatment are the chest X-ray, CT scan and blood markers, as well as the final path report. A useful site to read up on this is . This is an overwhelming time right now...and we are here to help you through the emotions as well as answer any questions.
      Retired moderator. Husband, left I/O 16Dec2005, stage I seminoma with elevated b-HCG, no LVI, RTx15 (25Gy). All clear ever since.


      • #4
        As a parent I can understand your pain and worry. As a person that was diagnosed at 16 I can understand your sons actions. Let him do what makes him comfortable. He will need his space so he can digest his own thoughts. You see him as your son but he is a man and is probably a lot stronger then you think. I know you just want to take the pain away and make all things normal again. But trust me he just wants to deal with this his way. The most important things you can do for your son are:
        1. Stay strong and positive
        2. learn as much as you cam about disease so you can help him make the best decisions.

        Best of luck
        If you look for the truth outside yourself, it gets farther and farther away. ~ Tung-Shan
        If you love life, don't waste time, for time is what life is made up of. ~ Bruce Lee
        Please sponsor me for the 2011 LiveSTRONG Challenge Philadelphia.
        My Blog

        Diagonosed 1988. Left I/O - 3 rounds of chemo
        Relasped 1989. RPLND - 3 rounds HDC - Bone Marrow transplant.
        There is Army Strong, There is Live Strong and then there is me. Crazy Strong


        • #5
          As a recently diagnosed 23 year old, I can tell you that I was more comfortable being at my apartment than I would have been at home with my family. My roommates took care of me by getting me drinks and stuff.......I didn't need much else......though I wouldn't recommend staying alone for at least the first 2 nights. I didn't want a bunch of people worrying about me until I knew they had to.......a high % of the time, I/O alone cures the disease.

          I'm sure your son is strong enough to make solid decisions. If he is anything like me, most of his decisions will be based on trying to get through this as fast as possible, and with as few tears as possible from family members. Give him access to this website so he can educate himself.

          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!


          • #6
            I am so sorry for what your going through. How scary this must be. We have all been there, so you have found a great place to vent, ask questions, ect.
            One thing that I found to be VERY important is to get copies of everything. When your in the Dr.'s office, and they ramble off things, it's so overwhelming, and you don't digest everything. So get copies, and anything you don't understand, you can call the Dr. and ask about, and other things, you post here, and I'm sure many can help. (No Doctors here, keep that in mind, but I received better advice here, than most Doctors.)
            Sooooo your son had the I/O let's hope that's the end of it. Prayers coming your way.
            Brother Diag. 10/05 Non-Sem.
            Right I/O 11/05
            4XBEP 8/06
            RPLND 12/06
            2X VIP 1/22/07
            Only completed 1 Rd.


            • #7
              I was exactly where you are at two years ago with my 20 year old son. You have found the right place for info and support...I was in a daze for weeks learning everything.....and finding the right treatment for Chris. Please know things will get better as you learn more.....take care...Mary Ellen


              • #8
                Hello and welcome to the forum. I am at work right now so will have to be brief. It feels like insanity, but that will change. My son Russell had (notice that I use past tense!!) advanced disease. He went home to his house the night of the diagnosis and as well continues to do the same as we go. He spends time with me during treatments, but enjoys being independent. It is torture to me, but I am also proud of his internal and external strength. The people on this forum are wonderful to say the least. A very trustworthy group. Bit by bit the puzzle pieces come together, just gather information as you go, balance the day you are in take care of yourself as well as your son. Take care, Sharon
                Click here to support my LIVESTRONG Challenge with Team LOVEstrong.


                • #9
                  Thank you every one for your words of support. The surgery itself was quick 45 minutes. He was walking around shortly after and ate a normal dinner. Needed very little pain med. Today we took him home and he was a little sore but seemed better than expected. Insisted on staying on his own. Doc called him and said it was definatley malignant but that he would see him tuesday to take staples out and review the path report. Isnt it a bit unusual for the doc to say that over the phone before he has the report? Does he know something he is not sharing?.It will be a long nerve wracking weekend. Every one here has been very supportive, glad I found this site.


                  • #10
                    Originally posted by veryworriedmom
                    Doc called him and said it was definatley malignant but that he would see him tuesday to take staples out and review the path report. Isnt it a bit unusual for the doc to say that over the phone before he has the report? Does he know something he is not sharing?.
                    HI Very Worried,
                    I just want to tell you that this disease has a very high cure rate- in fact your son may already be cured. Many TC survivors are cured simply by the I/O alone- a couple years of CT Scans and blood labs, and then that's it!
                    Your son may just fall into that catagory.

                    Your doctor telling you that it is malinant is likely based on labs prior to the I/O, and the US showing a solid mass. Let us know the details of the pathology report, and we will help you sort it all out. We can offer lots of info on our treatments, and help you understand it all.
                    Hang in there, it gets better.
                    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


                    • #11
                      Hey VWM,
                      I'm glad to hear that the surgery went well. The soreness is very common, but things get better every day. As far as the mass being malignant, 95% of all testicular masses are cancerous, hence the need for the I/O and the likely certainty shown by the doc. Right now, the focus should be on recovering from the surgery. The waiting sucks, but the patience will be rewarded with a course of action to follow. Keep us posted,
                      "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.


                      • #12
                        I would have him try to stay away from eating "normal dinners" for a few days.......#2 is not easy. Have him drink slim fast or instant breakfasts instead of solid foods.

                        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!


                        • #13
                          With a 95% chance of being cancer and the doctor getting to look at the tumor odds are that it will be malignant. The waiting part always stinks (Fed's right-sucks) that won't get any easier for a few years.
                          Your son has a reasonable chance that he's cured just by having the primary tumor removed. I just want to give you a heads up about this cancer before you get the full report. The cure rate is amazingly high when treated early and correctly especially if the disease follows the predicted path. The path that the disease follows is from the testicle to the lymph nodes and then to the lungs, certain types can skip the nodes and go directly to the lungs. If it has spread and it's contained to these areas your son has a great chance of beating this cancer. My son was diagnosed and staged before I had this little bit of information and I can tell you that hearing the disease had spread brought me to my knees. Knowing what I know now I would still be scared but the knowledge that it has acted as predicted would have saved many tears. Please let us know what the doctor says. Oh, if further treatment is needed you may want to consider finding a sperm bank. Yes, we do learn to talk to our son's about damnedest things.
                          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.


                          • #14
                            Hi VW Mom,

                            I was in your shoes last year and was also very worried. This is a horrible thing for these young and not so young guys to go through and it
                            is so difficult to watch and wait from the sidelines!

                            Once the initial shock has worn off, you will get that fighting spirit that
                            so many of us have developed. Learn all you can about the disease
                            and the treatments so you will be somewhat prepared for whatever
                            comes along.



                            • #15
                              Hi veryworriedmom

                              I'm sorry that you have to go through this. My son is 21 and was diagnosed december 2006, and I can relate to the shock you mention.

                              It seemed like one day my son was just fine, and the next thing I knew he was going through surgery, chemo, and then more surgery.
                              Hopefully your son is already cured from having the orchiectomy, and I will be checking on this post again soon. I hope you hear good news.

                              I suggest you check in with this group, because they are very supportive, and you will learn a LOT about TC, both in here and by referring to the TCRC website.

                              I have had many nights filled with questions and fears, and found answers here that were a tremendous help.

                              As a mom though, I think we are just destined to be tortured when our kids are in trouble. Support is very important, and I couldnt have found a better place to get it, because I am not one that likes to be kept in the dark. I need information. Honest information about what were dealing with, so who better than people that are dealing with the same thing, and have contact with TC experts.

                              Will be thinking of you.

                              Tammy - Anthony's mom

                              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!