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18 year old son just diagnosed - can't believe it!

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  • 18 year old son just diagnosed - can't believe it!

    My name is Linda Murphy, we live in Northern KY right across the river from Cincinnati, OH. Our son, Casey, is scheduled to start college tomorrow at NKY with a full ride in Physics/Engineering. He found a hardness in his left testicle a couple of weeks ago and we saw his urologist Tuesday 8/14 pm. Next thing I know we are at Children's Hospital in Cinti getting CT scans, bloodwork and scheduling orchio surgery that same day. Couldn't get an operating room until Friday 8/17 so had a PET scan on Wed and relaxed on Thursday. Surgery went well and now waiting on the path reports. He has a history with this left testicle. He had a very large variococele which we finally had operated on about 2 1/2 or 3 years ago. Urologist attempted to cut veins to the variococele in attemp to shrink it. That did not work so about a year later he had an embolization which worked. That was Jan 2007. Just prior to that surgery, he had an ultrasound which did not show evidence of the testicular lump. The ultrasound on Tuesday 8/14 showed the lump. CT and PET showed 2 enlarged lymphs and some additional suspicious nodes. No evidence of matastisizing to any organs. Seeing the oncologist on Monday but path will not be back by then. Probably another week I guess. Urologist said after surgery on 8/17 that he now knows why the 1st surgery didn't work...Casey is one of the rare folks who have an additional vein at the base of the testicle and the surgeon doesn't routinely pull the testical completely out in that type of surgery because of other risks and the fact that the percentage of boys/men with this is so low.....I can't help but wonder if that would have made a difference! Anyway, I know the blood markers are elevated but have no numbers or anything yet. I find myself forgetting things...like what am I doing or who have I talked to or whatever. Anyway, I have talked with the university about holding his scholarship and am now just waitint...I cant' believe we are dealing with this..it should be me not him! I will be on this site for a while now I think....
    Linda Murphy
    Casey's mom in Cold Spring, KY

  • #2
    Welcome to this forum. I have to say that this is one exceptional group of supportive people. Very trustworthy!!!!!!! So sorry for what is in front of you. I remember it well. I found myself wandering around in my front yard at 1:00am the night Russell was diagnosed. These are normal reactions to extreme stress. It will change. If I could offer some advice, when you see or talk with the care providers, write down, or ask for print outs of the information that they find. All of the pathology, doctors reports, everything. As a cancer survivor, you have the right to your printed chart records. Over time, you will be able to sort through the massive amount of information and it will start making sense. You will find your balance again. This is not an easy job, but it is a job that can be done. Russell is a little over a year post diagnosis. It is by far the most difficult thing I have ever done and....Russell signed up for college classes yesterday! Give yourself time, the answers won't all come on one day. There is a lot of support and many helpful people out there!! Keep in touch, Sharon
    Click here to support my LIVESTRONG Challenge with Team LOVEstrong.

    Comment


    • #3
      Linda, I am sorry to have to welcome you to this forum but as you will see by my moniker I am just one mother who has come to this forum for information, support, networking, comfort and sharing. You have just got on a roller coaster and will be facing many ups and downs. The first thing you must do is find an expert in this disease to guide you through the ride. I don't have the expertise of taking you to informational links on this site, but I am sure one of the moderators will be on to help you out. It will be important for you to get the pathology report and possibly a second opinion. Time is of the essence, get copies of all reports, make sure you have someone with you and your son at meetings with the doctors who can listen and take notes while you absorb what the doctor is saying. Unfortunately, your son may have to skip this fall semester, but just reading about his achievement and also the fact that he recognized the problem right away and acted on it, leads me to believe that this is just going to be a "bump" (rather large bump) in the road but that he will find himself back on track for spring semester. Hang in there. 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

      Comment


      • #4
        Hi Linda,

        You are not alone! I can remember almost being in shock when I heard last year that my only child had cancer. He was diagnosed in April of 2006 and recently celebrated his year after chemo, "All Clear." I was so fortunate to have found this site and turned to it every time I had a question or just needed to share my feelings. I'm so glad you found it too.

        You will get a lot of information here. And make sure you ask any question that comes to mind. Someone will either have an answer or will be able to
        direct you towards an answer. You will be amazed at how much you'll learn about this disease in a short amount of time.

        Diane

        Comment


        • #5
          Linda:
          I'm really sorry about what you have to go thru. The road ahead will be scarry but it can be walked quite successfully. Because of your sons age and the fact that his markers are up I have to assume that he has a type of testicular cancer known as non-seminoma. As scarry as it sound if the cancer spreads and it stay along a normal path it can usually be treated with great success. The normal path is from the testicle to the lymph nodes then onto the lungs. Occasionally it can skip the lymph nodes but that dosen't appera to be your sons case. I have to tell you I am not a doctor and you will need the full pathology before a treatment plan can be given but if the nodes are swollen your son will most likely need chemo. Yes it is nasty stuff but quite managable with the anti neusea meds they have.
          You're going to want to be prepared for the doctor so check out this site for question to ask. Read everything you can, you will find that understand this disease will make it less frightning. Yoru're also going to want to do some research here . This next link is a list of experts don't be worried about hurt feelings a second opinion is never a bad idea when it comes to cancer. Pay particular attention to the names under the Indianapolis link. Dr. Einhorn is a master at curing this and he is very reachable.
          When you get all of the test results please post them and we can perhaps help you understand what they are saying and we will certainly all let you know our experiances.
          As soon as you have any question just ask and don't be shy about asking the same thing more then once. We all did that.
          Last edited by dadmo; 08-18-07, 10:05 PM.
          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
            Linda -

            I can not add much to what dadmo wrote...maybe reinforce a few things:

            - consult with the experts - TC is relatively rare...BUT, there is a tremendous amount of shared research data among the centers for excellence and the treatment protocols are fairly standard.

            - I can assure you - that the next few weeks are the most difficult...your head will be spinning with thoughts, fear etc...that is normal. Things will become far easier when all of the pathology results are in. That will dicate the treatment options. You will be in action mode then, versus waiting and asking mode.

            - I flew to see dr. einhorn between xmas & new years with my wife just after my surgery...it was the best decision I could have made...I had such a feeling of confidence that I was making the right choices. I highly suggest it, as you are so close.

            - I have said this elsewhere here on the forums...but when I was just out of surgery and my wife was asking the surgeon what he thought, and what were my chances, and whether the cancer had spread etc...he calmly looked at me and said "we do not know yet, but Pete, whatever it is, is is, and whatever it is you will have to deal with it appropriately"....on the one hand, it made me very mad - because what you want to hear is everything is fine and you can go back to your normal life.....of course, that is not reality...and with a few minutes I felt an overwhelming sense of power....because I was in control to deal with things....I hope this thoughts helps you Linda.

            - I am older than you son...43 married with two kids...and I can assure you there is no good time in one's life to be diagnosed with this....but I look back, and I would not trade my experience for anything....yes, a cliche...but you will come to understand...

            - keep us posted - this forum is a great, great resource...the moderators are wonderful, caring people with a great deal of information...and many others here have been thru this and have a special place reserved for all of the "new members."

            Your son will be fine...just a bump in his life, and yours.

            pete
            - lump first noticed 11/20/2005
            - I/O right Dec 8, 2005
            - 95% embryonal / 5% seminoma
            - normal markers PRE surgery
            - no vascular invasion, tunica free of cancer, epididymis free of cancer, lungs free, lymph free
            - Stage I diagnosis
            - surveillance
            - mid feb '06, beta hcg slightly elevated = 4.6...small enlarged lower node seen on CT scan...
            - 3BEP began feb 20, 2006
            - finished 3 BEP, last bleo, april 17, 2006
            - CT scan, blood markers, chest..all clear
            - back on surveillance

            Comment


            • #7
              Hi Linda: It's with open arms and a heavy heart that I welcome you to the forum. I'm very sorry for Casey's diagnosis and no doubt your mind is racing with questions, you are doing mundane daily tasks in a fog so it's hard to remember anything, you are shot-out-of-a cannon in the flurry of doctor's appointments, bloodwork, scans, surgery. "I can't believe it" was the exact same phrase that echoed over and over in my mind when my husband Andy was diagnosed earlier this year. Everyone we've met through this forum has been so very generous with their time and you will find an excellent support system here. I see that you have already received great advice, so the rest of what I'm about to say is for Casey...

              Dear Casey: It sucks when life throws you a curve ball when you least expect it. It's hard to come to terms, but easy to feel sorry for yourself. So my advice to you is this: Allow yourself one, but only one, pity party. Then dust yourself off, because you have work to do. You look cancer in the eye, and you tell IT that you have so much yet to do in this life, and that you will rise above IT to make sure you start that first semester of college, that you've got that first legal drink to look forward to in a few years, that you've got a college degree to earn, dates to go on, someone waiting to fall in love with, a new job to anticipate, a family of your own to start somewhere down the road, and that you have great things to offer that IT cannot hold you back from doing. Don't be discouraged by delaying school for a semester or two...no one is keeping time. So if it means that degree has a stamp that's a year later than expected, it certainly will not take away from getting it at all. My husband and I are both University of California Irvine anteaters (yeah, anteaters can you believe it! ). Our degrees would still mean as much, even if it came to us in 1999 instead of 1998...that must sound so old to you! When Andy was diagnosed earlier this year in February, he had to miss this past semester of law school. He was very disappointed, but realized that he had to attend to his health first. I hope it will give you comfort to know that he will be starting back up again this coming Monday. He may be down one semester, but he's up one mountain. So Casey, I say take a deep breath when you feel overwhelmed at all of this...remind your Mom to do the same because it will be just as hard for her in a different way. Have patience and take good care of yourself because you've got so much to do with your young life. Best wishes from California!
              Maria
              *Hubby Andy diagnosed 02/13/07, Left IO 02/16/07 *Stage 1A Non-Seminoma (65% Immature Teratoma / 35% Embryonal Carcinoma) *RPLND 04/27/07 Lymph Nodes-ALL CLEAR
              *Complications from Chylous Ascites so Laparotomy 05/03/07 *No food for 10 weeks, TPN only *07/18/07 Removed drains, tubes, picc line *CT Scan 07/31/07-ALL CLEAR
              *CT Scan 02/12/08-ALL CLEAR *Hydrocele surgery 06/19/08 *CT Scan 9/30/08 and 03/06/09 shows <cm left lung nodule - under surveillance

              Comment


              • #8
                Originally posted by petep
                - consult with the experts - TC is relatively rare...BUT, there is a tremendous amount of shared research data among the centers for excellence and the treatment protocols are fairly standard.
                Hi Linda,
                As Pete has written, it is a good idea to see a TC Expert, or have your doctors consult with one. It is wonderful how freely they share information.
                Let know what your path is once you receive it, that will determine treatment options.
                If posible, try to get a second opinion on the pathology.

                Remember, even much more advanced cases of TC are highly curable.
                Best,
                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

                Comment


                • #9
                  Thanks to everyone who has responded so far! I know that you know how much it means to me! I was organizing some stuff in Casey's room earlier this morning and picked up his graduation cap and gown and burst into tears....this is just so horrible! But, I am planning on asking the oncologist tomorrow to have copies of all of Casey's scans and path report sent to Dr. Einhorn and am going to try and contact his office tomorrow to see about a visit. All of our friends have been so supportive and helpful and there are many people praying for Casey so I just have to hold on to that. I will post all results as we get them.
                  Linda Murphy
                  Casey's mom in Cold Spring, KY

                  Comment


                  • #10
                    Linda -

                    if you do visit with dr. einhorn, he will want your lab to make up slides for him - they tend to like to read their own slides...but the ct scan and chest xray film / copies will be fine. They will tell you what they will want to see.


                    reading the scans properly...and determing the correct pathology is the most critical issue at this point.

                    pete
                    - lump first noticed 11/20/2005
                    - I/O right Dec 8, 2005
                    - 95% embryonal / 5% seminoma
                    - normal markers PRE surgery
                    - no vascular invasion, tunica free of cancer, epididymis free of cancer, lungs free, lymph free
                    - Stage I diagnosis
                    - surveillance
                    - mid feb '06, beta hcg slightly elevated = 4.6...small enlarged lower node seen on CT scan...
                    - 3BEP began feb 20, 2006
                    - finished 3 BEP, last bleo, april 17, 2006
                    - CT scan, blood markers, chest..all clear
                    - back on surveillance

                    Comment


                    • #11
                      Originally posted by petep
                      Linda -

                      if you do visit with dr. einhorn, he will want your lab to make up slides for him - they tend to like to read their own slides...but the ct scan and chest xray film / copies will be fine. They will tell you what they will want to see.


                      reading the scans properly...and determing the correct pathology is the most critical issue at this point.

                      pete
                      Pete is talking about the actual slices of the primary tumor on glass "Slides", that are viewed by a pathology doctor through a microscope.
                      In my case, I simply went to the pathology lab associated with the hospital where I had my IO, and just signed them out. Then I brought them to the pathology lab at PENN, and later to Sloan-Kettering.
                      Dr. Einhorn's staff will be sure to tell you exactly what is needed, just be prepared that you, or Casey, will need to p/u the slides, and bring id.

                      Dr. Einhorn is among the best in the world at treating this disease- I was so happy to see that you metioned him in your last post.
                      Godspeed.
                      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

                      Comment


                      • #12
                        This is who I saw in Cincinnati for my Stem Cell transplant

                        Randy Broun
                        Jewish Hospital Cincinnati (Kenwood)

                        He actually did his training at University of Indiana with Einhorn, and follows the same protocol. He is knowledgeable in Testicular Tumors, and close to your area!
                        Diagnosed August 2005
                        R/O August 2005 AFP 210

                        4xEP beginning December 2005
                        End Feb/March 2006 AFP 4.6
                        April 2006 AFP 22 and rising

                        Tandem Stem Cell Transplant 7/06 - 9/06
                        December 07 AFP = 3.3
                        December 07 CT = Clear!

                        15+ months remission

                        Comment


                        • #13
                          Linda
                          My name is Michele and my 19 yr old son Brad was diagnosed w TC on June 28th, had rt i/o on June 29th, and is on second round of chemo right now...2 weeks left. I know what you are feeling....it is such a scary time, but everyone here is so kind and helpful. Brad was to be a sophomore at college this year...he will not be going back to school until 2nd semester now. It is a sad time for us, but we know we need to get him healthy first.
                          I will keep you and your son in my prayers.
                          Michele(Brad's mom)
                          ________
                          Vapir One V5.0 Reviews
                          Last edited by mkl; 04-04-11, 08:41 PM.

                          Comment


                          • #14
                            Thanks Michelle, I will pray for you and Brad as well. Can you tell me how the chemo is affecting Brad? I know everyone is different.
                            Linda Murphy
                            Casey's mom in Cold Spring, KY

                            Comment


                            • #15
                              linda

                              read your post and replys.and i am sorry to hear but keep in mind this thing can be beat. ups and downs are part of it but be strong. dr. einhorn is the best and he will more then likely set you up and see dr. foster if surgery is needed. not to worry as your son is in good hands.

                              good luck

                              kendall
                              severe back pain ( found to be tumor rpgct) no pain/irregularities with twins at all
                              diagnosed 11-15-06 stage 3c mets to lungs/shortness of breath, choriocarcinoma, hcg 212,000
                              11-16-06 1st of 4 rnds. in patient bep
                              2-07 1st of 3 rnds. in patient salvage tip
                              met dr. einhorn 4-17-07 ultra-sound (1st one)
                              5-10-07 left i/o (immature teratoma)
                              7-12-07 rplnd (dr.foster)
                              8-16-07 all-clear and in surveillance mode
                              started TRT...androgel 12-5-08
                              fight the good fight...you can win

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