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New user here Daniel_Eye from the Greater Boston Area

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  • New user here Daniel_Eye from the Greater Boston Area

    Hello, my name is Daniel. Like many of you, I wondered why the f**k is one nut larger than the other and why does it feel like someone has a kung fu grip on it?!?!?
    I joined this site in efforts to help and be helped by others who've undergone this experience.
    So my story began at the end of my semester last fall (2016). Just around finals, I noticed a dull sensation in my left testicle as well as pressure in my lower abdomen. Along with this, I was having trouble urinating. My P.C. gave me Flomax for the urination problem and a referral for sonograph on my testicle. She told me it could be at the very least epididymitis or worse. I had already felt that there was a lump so I knew it was worse. A week later, actually on NYE I went in for my sonograph and was told to see a Urologist.

    I found a great Urologist, Dr. James Ku, at Mt.Auburn in Cambridge, MA who saw me quickly and confirmed it was indeed a lump and needed to be removed. My left orchiectomy was completed on Friday the 13th...dun dun dun!!! Luckily the procedure went smoothly, the tumor and testicle were removed without issue. So the final stats, there were two nodules but since they were so close together they considered it a single node measuring 3.1cm. 50/50 seminoma/embryonal and <1% teratoma.

    Bloodwork was done before and after the surgery as well as a cat scan of the abdomen without contrast solution, then one CT scan for the chest with contrast solution. Bloodwork before surgery 1/4/17 [AFP-2.7; HCG-3; LDH-not taken] after surgery 1/30/17 [AFP-3.7; HCG-not taken; LDH-262], most recent blood work 2/14/17[ AFP-4.8; HCG-pending; LDH 243].... Darn... AFP moving up...looks like RPLND will be out of the picture. My abdomen CT showed one enlarged para-aortic lymph node measuring 1.6cm. My oncologist at Mt.Auburn Dr. Erin DeRose put me originally at IIa but now that the AFP marker is moving up I think that has changed, though we haven't gone over that yet.

    I've been going through a lot of academic databases doing research and reading. Originally I was scared off by the RPLND but after reading the side effects of chemo and long term effects, if I had the opportunity I would've now chosen to do the surgery instead. I spoke to a great surgeon at Boston Medical Center Dr. Mark Katz who informed me that because my situation would require bilateral removal it would have to be done as a full open procedure. But, at this point, it looks like it's out of the question.

    I'll most likely be going in for 3 x BEP, as long as my pulmonary tests come out okay. Mediport will be done sometime next week regardless of which treatment I chose. I withdrew from my Spring 17 semester because I knew I'd need some treatment and I'm taking a leave from work until I'm fully recovered. At least 2-3 months out from chemo, to possibly account for any side effects.

    I'd love to hear from some of my fellow TC fighters and veterans on how their 3 x BEP experience was, what precautions should I take and how can I prepare prior/during/after treatment. Given that I only have one enlarged node in the abdomen and nothing worth noting in the chest, my onco doc says I most likely won't need any surgery after chemo...but who knows what can happen between now and then.

    Nice to meet you all,
    Daniel





  • #2
    Daniel~Sorry to welcome you hear. My 17 year old son just finished his first cyle of BEP x 3. He is due to start cycle 2 tomorrow if his WBC and platelets allow. My son did throw up on days 1-3 even with several anti-nausea meds, but he still had a great appetite. Also, chemo "fog" where Grant could not focus on any school work or even watch a movie/tv around day 4-5. Grant has needed to take anti-nausea meds at home, but NOT daily. Mostly a few days following 5 day tx, and here and there following Bleo tx. Occasional ringing in the ears, and of course starting to lose his hair around day 17. The most "weak" and crappy he has felt has been the past 2 days. More mental (easily irritatated) I believe since he not able to go to school, Boy Scouts, etc while there is fle and gastro bugs abounding ar part of TN. Grant has a port and it has been blessing.
    Keep us updated.
    17 year old son Grant dx 12/21/16
    pre/o markers 12/21/16- HCG:1065.15,AFP:298.8,LDH:1119
    pre/o CT Scan 12/22/16 normal
    r/o 12/22/16
    Post r/o Elevated Markers with INCREASE 4 weeks post r/o;
    PATHLOGY: mixed maligent germ cell 8.6 x 6.2 x 5.9 cm

    -80% Embryonal, 10% Yolk Sac, 5% Teratoma, 5% Choriocarcinoma w/LVI within Spermatic Cord and invasion into Rete Testis
    2nd CT scan on 1/24/17 3 nodes 2 over 2.5, one over 3.5
    BEP x 3 1/27/17
    Post Chemo CT Scan on 3/28/17 still showed a few nodes over 2 cm
    2nd Post Chemo CT Scan on 4/27/17 showed all nodes still over 2cm
    Post Chemo RPLND 5/8/17: Periaortic Teratoma, Intraaorticaval Teratoma, and Paracaval Teratoma found.

    Comment


    • #3
      Here's part of what the Testicular Cancer Resource Center ( http://tcrc.acor.org/dictionary.html ) has to say about AFP:

      Please note that AFP is normally less than about 5 ng/ml, but cancer cannot be assumed until it is over 25 ng/ml. Also note that a very small number of people have a naturally high level of this protein in their blood (though less than 25) even though they do not have cancer.
      Your levels are still normal & have only risen very slowly I'll not be surprised if your next test is lower.

      Dave
      Jan, 1975: Right I/O, followed by RPLND
      Dec, 2009: Left I/O, followed by 3xBEP

      Comment


      • #4
        Hi Dave

        I also thought that. On my paperwork, it says anything <6.1 is within a normal range. But it's been steadily increasing over these two draws. I wouldn't mind doing one more before continuing on just to be sure, however, I'm concerned that waiting too long after the orchiectomy to get treatment might cause it to spread further than it already has. It'll be 6 weeks tomorrow since I had the tumor removed.

        Comment


        • #5
          Hi Daniel,

          I can second Dave's statement: When I talked to Dr. Hanna he clarified that they generally don't act based on AFP numbers until it gets above 25. The down-side of waiting is that you're giving the cancer, if it is there, a chance to grow/spread. The up-side is that there's a decent chance that the AFP is just fluctuating, as it might just do, and by waiting you save yourself the agony and long-term side-effects of 3xBEP. Also, bear in mind that even if it grows/spreads a little bit, the cure rate with 3xBEP is still fantastic. Thus, if you're going to take on the adverse effects of 3xBEP, it's usually worth being sure that it was necessary. That's just my 2 cents.

          Best wishes. I hope you do decide to test again and that the markers go back down for you.
          -Uno
          11/16/16 Went to primary care complaining of testicular pain. Wrongly diagnosed with epididymitis. Told not to worry, it'll go away on its own.
          12/8/16 Diagnosed with TC in left testicle.
          12/9/16 Left I/O.
          1/5/17 Tumor Markers officially back to normal -- Stage 1A with 70% EC.
          1/26/17 Robotic RPLND using left MSKCC template as primary treatment.
          2/2/17 Pathology results: pN0. No current evidence of cancer. They say I still have a 10% relapse chance.

          Comment


          • #6
            I believe your MDs need to decided if the AFP is of any significance. I don't really believe that it is and it may take months at the rate of increase to show any pattern of increase, which waiting may not be that advisable given that you already have a positive node. If the AFP is not increasing and you only have one node in the para-aortic region (which is a typical landing area for left-sided testicular cancer) then I believe most experts would say that you are a candidate for RPLND over chemotherapy as primary therapy (although either can be used obviously).

            The only other concern is are you still having other symptoms, such as the lower abdomen pressure that you mentioned? Are you having any back or flank pain? If so, you would want to mention this as well as it may change the picture a little bit to more in favor of chemotherapy.

            Until decisions are made I would no be getting a port placed.

            Mike
            Oct. 2005 felt lump but waited over 7 months.
            06.15.06 "You have Cancer"
            06.26.06 Left I/O
            06.29.06 Personal Cancer Diagnosis Date: Got my own pathology report from medical records.
            06.30.06 It's Official - Stage I Seminoma
            Surveillance...
            Founded the Testicular Cancer Society
            6.29.13 Summited Mt. Kilimanjaro for 7th Cancerversary

            Comment


            • #7
              Hello All

              Thanks for getting in touch, I really appreciate the input.

              I had an appointment with my NP at the oncologist's office and let them know that I want to get another Cat Scan done before I continue. They understood the decision to do so. In the meantime, I do have a pulmonary function test scheduled just in case the surgery option falls through.
              The surgeon at BMC agrees that Chemo shouldn't be my primary option for treatment and said that he can do it full open with a chance that I might need some adjuvant chemo afterward.
              So now I wait 2 weeks till I can get a cat scan and see the surgeon again. They'll probably have me do some more blood tests and then see what the final result will be.

              I am, as others have mentioned, concerned about possible spreading of the disease but if there is any inkling of a chance I can bypass or reduce chemotherapy I think I should do it.


              Also, I have an appointment with a surgeon at a second hospital. I'm trying to find someone that might be able to do it robotically. What do you all think?


              Comment


              • #8
                I would insist on another blood test before starting anything. Three measurements all within normal range is not a persistent elevation of markers, it is three normal tests.The reason there is a normal range is because these test result do vary a bit from test to test.

                Dave
                Last edited by Davepet; 02-18-17, 05:43 AM.
                Jan, 1975: Right I/O, followed by RPLND
                Dec, 2009: Left I/O, followed by 3xBEP

                Comment


                • #9
                  Originally posted by Davepet View Post
                  I would insist o another blood test before starting anything. Three measurements all within normal range is not a persistent elevation of markers, it is three normal tests.The reason there is a normal range is because these test result do vary a bit from test to test.

                  Dave
                  Oh absolutely, my Onco just did an LDH today. When I go to see the surgeon on March 8th I will also ask him to run the panel of three as a final check along with the CT scan so I can decide what to do.

                  Comment


                  • #10
                    Re-checking the CT scan may not give you that much information but if the MDs are Ok with it then why not I suppose. I would check my tumor markers at the same time if I was you.

                    As as the laproscopic RPLND, that is a conversation I would have with both of the surgeons. It looks like Dr. Katz did his fellowship in minimally invasive surgery so if he is wanting to do it open instead of laproscopically, then that is something I would take into consideration given that he is "into" minimally invasive but prefers open RPLND in your case.

                    Mike
                    Oct. 2005 felt lump but waited over 7 months.
                    06.15.06 "You have Cancer"
                    06.26.06 Left I/O
                    06.29.06 Personal Cancer Diagnosis Date: Got my own pathology report from medical records.
                    06.30.06 It's Official - Stage I Seminoma
                    Surveillance...
                    Founded the Testicular Cancer Society
                    6.29.13 Summited Mt. Kilimanjaro for 7th Cancerversary

                    Comment


                    • #11
                      Daniel, I tried to reply via in-box, but am writing from hospital room, on phone and failed. Hoping March 8 helps deccide what plan to take.
                      17 year old son Grant dx 12/21/16
                      pre/o markers 12/21/16- HCG:1065.15,AFP:298.8,LDH:1119
                      pre/o CT Scan 12/22/16 normal
                      r/o 12/22/16
                      Post r/o Elevated Markers with INCREASE 4 weeks post r/o;
                      PATHLOGY: mixed maligent germ cell 8.6 x 6.2 x 5.9 cm

                      -80% Embryonal, 10% Yolk Sac, 5% Teratoma, 5% Choriocarcinoma w/LVI within Spermatic Cord and invasion into Rete Testis
                      2nd CT scan on 1/24/17 3 nodes 2 over 2.5, one over 3.5
                      BEP x 3 1/27/17
                      Post Chemo CT Scan on 3/28/17 still showed a few nodes over 2 cm
                      2nd Post Chemo CT Scan on 4/27/17 showed all nodes still over 2cm
                      Post Chemo RPLND 5/8/17: Periaortic Teratoma, Intraaorticaval Teratoma, and Paracaval Teratoma found.

                      Comment


                      • #12
                        Originally posted by Mike View Post
                        Re-checking the CT scan may not give you that much information but if the MDs are Ok with it then why not I suppose. I would check my tumor markers at the same time if I was you.

                        As as the laproscopic RPLND, that is a conversation I would have with both of the surgeons. It looks like Dr. Katz did his fellowship in minimally invasive surgery so if he is wanting to do it open instead of laproscopically, then that is something I would take into consideration given that he is "into" minimally invasive but prefers open RPLND in your case.

                        Mike
                        Hi Mike

                        He has done the open variation, he prefers this because he can completely remove all of the lymph nodes in the paraaortic area by moving my bowels out of the way to reach them. Dr, Katz has a 90-95% antegrade ejaculation rate and it will be nerve sparring. He said that to do it with a robot he would have to do one side first then move the entire robot to the other side. He made it sound like it would be like doing two surgeries. I talked to my PCP about this and she said that if the surgeon prefers to do it one way don't try to push them into another direction, they know what is best.

                        When I talk to him this coming week I am also going to request another 3 panel blood test and make my final decision from there. I don't know if I'm psyching my self out or not but I swear I can feel something growing....

                        Comment


                        • #13
                          Originally posted by Daniel_Eye View Post
                          I don't know if I'm psyching my self out or not but I swear I can feel something growing....
                          You are psyching yourself out. It is amazing how stress can affect our minds. A lot of that typically goes away once a decision is reached.

                          Dave
                          Jan, 1975: Right I/O, followed by RPLND
                          Dec, 2009: Left I/O, followed by 3xBEP

                          Comment


                          • #14
                            Checking in on you Daniel, how are you feeling?
                            11/16- Pain/lump in R testicle 11/16- US finds multiple masses 11/16- Right I/O path multifocal largest nodule 2.1cm 100% EC with LVI/rete testis invasion. 12/16- Ct/markers normal stage 1b 12/16- Ct/markers normal 1/17- rplnd pN1 2 nodes 1.8/1.4 cm EC Stage IIA 2/20 ct/markers clear! 3/1/17 started androgel for low T 4/27/17 Relapsed. Multiple lymph nodes in mesentary and few nodes in retriperitoneum. Start 3x bep. Ct after 2nd cycle revealed all masses already resolved! Continue last cycle! 6/26/17 Finished 3x bep!

                            Comment


                            • #15
                              Originally posted by Joe.shupe22 View Post
                              Checking in on you Daniel, how are you feeling?

                              Hi Joe

                              Been pretty depressed lately, went in for some blood work and a CT scan last week. My AFP went down from 4.8 to 3.9 but my LDH went up from 243 to 280. Waiting on the bHCG test to come in. Also did some fertility testing, My FSH is 12.9 and ANA is 10.5, just waiting for my testosterone test to come in.

                              Spoke to the surgeon on friday, he said that he thinks there is a slight enlargement in the original node and possible two more that are now slightly over 1mm. He says that hes about 90% sure that I'll have to do chemo first and that should take care of it. That got me really bummed out on friday and I've just been kinda dreary, I was hoping to just do the RPLND and be done. It doesn't help that it was bitter cold the past couple days.

                              I have an appointment this thursday with the fertility Dr and the Oncologist. I should make my decision on friday and move along with treatment (whatever it will be) the following week.

                              How about you, how have you been tolerating the surgery. Are you able to walk around and function better? How about B.M's and urination, did it mess with that at all?

                              Comment

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