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Intermediate Prognosis - Pure Embryonal - BEP x 4

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  • Intermediate Prognosis - Pure Embryonal - BEP x 4

    Hello all, long time listener first time caller:

    My story:
    -Born with undescended testicle and I am now 30 years old
    -December 2017 noticed acne in unusual spots (chin, chest, shoulder area) and lumps under each nipple. Left nipple worse than right. Thought nothing off it and credited it to moving to a new area. [This all could be unrelated, but it also could be the start in my opinion]
    -Around end of April 2018, I noticed my right testicle was hard and had lower back right pain. It was night and day, never noticed anything different until one morning.
    -Waited a few weeks, thought it may be a workout injury and met with urologist. Diagnosed same day with TC. Xrays/CT scans/Blood Markers to follow.
    -May 25th 2018, I had orchiectomy,
    -Diagnosed with Non-Seminoma - 100% Pure Embryonal: two masses in testicle about 4cm and 1.5cm and some spreading to lungs (10 nodules).
    -I am going to Roswell Cancer Park in Buffalo, NY. A very good cancer center and my oncologist seems to have many accolades. He has experience in testicular cancer, but I do not feel he is at the very top of the field.
    • I was recommended BEP x 4. Which deflated my sails a bit. I am still retaining a positive outlook.
    • Through my research BEP x 3 or EP x 4 is standard. BEP x 4 caught me off guard.
    • Although I was given intermediate risk, I feel I'm borderline good/intermediate. My blood markers were 12,000 around May 17th and on June 7th were 15,000.
    • Do you guys think BEP x 4 is the best course for me? I have heard of instances after orchicetomy where markers can increase, but this can be a false increase.
    Taking questions and open to any and all advice.

    Thank you !!
    Last edited by Leanersnail4; 08-25-18, 08:58 AM.

  • #2
    Please look at the NCCN guidelines. Yes, most people get BEPx3 or EPx4, but most have markers much lower than yours. Your markers definitely put you in BEPx4 territory from what I see. I assume that 15,000 marker was bHCG? What is your AFP levels? What size were the metastasis? I would feel very comfortable getting BEPx4 in your shoes I think.
    6/5/15: bHCG 27,AFP 8.66, LDH 361, 5.6cm lymph node - Stage IIC
    6/16/15: Left I/O 85% EC, 10% chorio, 5% yolk sac opinion 2 (mayo) 90% EC, 10% yolk sac
    7/7/15: bHCG 56, AFP 42, LDH 322
    7/13/15: begin 4xEP, end 9/18/15
    10/1/15: bloodwork normal, ct scan shows 2 lymph nodes 1.0cm
    10/26/15: 2nd opinion on CT results - lymph nodes normal. Surveillance!
    4/6/16: 1.7cm X 1.5cm lymph node found with markers normal.
    4/20/16: RPLND @ IU - teratoma only!
    10/22/19: all clears up to this date!

    Comment


    • #3
      Thank your for the reply and suggestion. At this point, I dont know exact figures but do know all my levels are elevated. Unfortunately, I do not know of my lymph node sizes either. What I do know is that in my lungs there are about ten or so relatively small nodules. I will have more information this Friday.
      Last edited by Leanersnail4; 06-17-18, 12:58 AM.

      Comment


      • #4
        I thought hCG over 50,000 was the cutoff for intermediate risk. I would want to get that right. The long term consequences from chemo can be pretty serious. I would guess you would need BEP x 3. Checking the guidelines and then confirming with one of the top TC docs would be my vote.

        Comment


        • #5
          See here: http://thetcrc.org/staging.html

          over 50,000 hCG is poor risk. NCCN recommends 4xBEP for intermediate risk as well, as is also mentioned here: http://thetcrc.org/chemo.html
          6/5/15: bHCG 27,AFP 8.66, LDH 361, 5.6cm lymph node - Stage IIC
          6/16/15: Left I/O 85% EC, 10% chorio, 5% yolk sac opinion 2 (mayo) 90% EC, 10% yolk sac
          7/7/15: bHCG 56, AFP 42, LDH 322
          7/13/15: begin 4xEP, end 9/18/15
          10/1/15: bloodwork normal, ct scan shows 2 lymph nodes 1.0cm
          10/26/15: 2nd opinion on CT results - lymph nodes normal. Surveillance!
          4/6/16: 1.7cm X 1.5cm lymph node found with markers normal.
          4/20/16: RPLND @ IU - teratoma only!
          10/22/19: all clears up to this date!

          Comment


          • #6
            After researching the resources provided, I do feel more comfortable with BEP x 4. I still have some reservations as I feel I am on the lower end of the intermediate spectrum. However, I plan on continuing my research and will make an effort to discuss with a TC expert.

            Comment


            • #7
              Sounds good, glad you are feeling more comfortable with a rough process! Best of luck!
              6/5/15: bHCG 27,AFP 8.66, LDH 361, 5.6cm lymph node - Stage IIC
              6/16/15: Left I/O 85% EC, 10% chorio, 5% yolk sac opinion 2 (mayo) 90% EC, 10% yolk sac
              7/7/15: bHCG 56, AFP 42, LDH 322
              7/13/15: begin 4xEP, end 9/18/15
              10/1/15: bloodwork normal, ct scan shows 2 lymph nodes 1.0cm
              10/26/15: 2nd opinion on CT results - lymph nodes normal. Surveillance!
              4/6/16: 1.7cm X 1.5cm lymph node found with markers normal.
              4/20/16: RPLND @ IU - teratoma only!
              10/22/19: all clears up to this date!

              Comment


              • #8
                So sorry! Once you know tumor marker numbers, size of nodes, than email Dr. Lawrence Einhorn the top TC Oncologist in the world. I would also have NCCN guidelines.
                leinhorn@iu.edu
                Son Grant
                dx 12/21/16 at age 17

                BEP x3
                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


                • #9
                  Thank you for the support and Dr. Einhorns contact information. Once I have all of the information I will be in contact.

                  Comment


                  • #10
                    Keep us updated. Thinking of you.
                    Son Grant
                    dx 12/21/16 at age 17

                    BEP x3
                    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


                    • #11
                      Update:

                      - Had my port placed today, chemotherapy starts Monday.
                      - bHCG = 20750 AFP = 95
                      - Lung: 14mm 25mm 14mm and remaining seven or so are under 10mm
                      - No abdominal lymph nodes show enlargement

                      ~I am concerned about my rapidly rising bHCG and this makes me feel BEP x 4 is the right treatment
                      ~On the other hand, its strange I do not have any abdominal lymph node enlargement. When I brought the question up to my urologist about any abdominal lymph node sizes, he deflected (I dont blame him as this is not his expertise). It was never disclosed to me until today and it only was because I specifically asked.
                      ~I am still experiencing dull/achy lower back pain (right side). It is not constant, only have it periodically.
                      ~Plan on emailing Dr. Einhorn this weekend.
                      Last edited by Leanersnail4; 06-23-18, 12:45 AM.

                      Comment


                      • #12
                        Embryonal TC can spread via bloodstream & totally bypass the 'normal* lymph node progression. Rare, but it happens. We have had several cases on the forum.

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

                        Comment


                        • #13
                          Originally posted by Davepet View Post
                          Embryonal TC can spread via bloodstream & totally bypass the 'normal* lymph node progression. Rare, but it happens. We have had several cases on the forum.

                          Dave
                          I am aware this can happen, but with the lack of spreading to the abdomen, it makes me wonder if four cycles of BEP is excessive.

                          I have also heard that in many cases spots in the lungs do not turn out to be testicular cancer.

                          I do appreciate the feedback and will need to see what Dr. Einhorn and his team have say. My bHCG is high and rising.
                          Last edited by Leanersnail4; 06-23-18, 06:50 PM.

                          Comment


                          • #14
                            Originally posted by Leanersnail4 View Post

                            I am aware this can happen, but with the lack of spreading to the abdomen, it makes me wonder if four cycles of BEP is excessive.
                            Your first post said you had spread to the abdomen, did they revise that?.

                            In any event, your markers are not just high, they are in upper earth orbit. Don't take a chance on under-treatment. Do the 4xBEP. This is one of the few cancers they actually know how to cure 90+% of the time.

                            How bad would you beat yourself up if you did only 3x & then needed high dose treatment with transplant because it wasn't enough? While it is clear you'd prefer 3x, the guidelines say it's probably not enough. I understand why you'd like to reduce the dose, but isn't it better to follow protocol & have the best chance of knocking this out ASAP?

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

                            Comment


                            • #15
                              Originally posted by Davepet View Post

                              Your first post said you had spread to the abdomen, did they revise that?.

                              In any event, your markers are not just high, they are in upper earth orbit. Don't take a chance on under-treatment. Do the 4xBEP. This is one of the few cancers they actually know how to cure 90+% of the time.

                              How bad would you beat yourself up if you did only 3x & then needed high dose treatment with transplant because it wasn't enough? While it is clear you'd prefer 3x, the guidelines say it's probably not enough. I understand why you'd like to reduce the dose, but isn't it better to follow protocol & have the best chance of knocking this out ASAP?

                              Dave
                              Yes, yesterday I found out there was no spreading to the abdominal lymph nodes. Last week my oncologist mentioned RPLND after chemo may be required. Couple this suggestion with my high markers and spots in the lungs, I assumed it was in my abdomen as well.

                              I believe in questioning everything and doing my due diligence. Its not a prefence of doing 3x, its about doing whats best for my condition. The patient is as important as the rest of the medical team.

                              Although the guidelines are a great resource, every case is unique. This is not something I believe you can look at a chart and say with 100% certainty this is the treatment that should be utilized. I do not believe there is anything wrong with seeking Dr. Einhorns opinion and I still plan on starting chemotherapy on Monday.
                              Last edited by Leanersnail4; 06-24-18, 09:37 AM.

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