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Just finished chemo and I am scared

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  • Just finished chemo and I am scared

    Hi everyone,

    My name is Joe and 4 months ago I was diagnosed with testicular cancer. Weeks later I got my left testicle taken out by my urologist and from there I have been seen by Dr. Vaughn, my oncologist at Penn. It turns out the cancer had spread throughout my body. My lymph nodes in my abdomen, chest, and pelvis have all been infected. The good news is that it did not get into any of my internal organs. This still made me nervous though because I had read on multiple sites, including this one, that if the cancer spreads beyond the lymph nodes in the abdomen, the survival rate is only 71-73 percent. I should mention that only a few spots in my chest, as well as my pelvis were infected, but I was obviously nervous nonetheless that my survival odds could be a bit scary. However, Dr. Vaughn told me my survival odds were over 90% mainly because my prognosis was "good." Pre-chemo, my AFP and HCG were both around 120-130, and both had dropped significantly after my surgery. I have to admit though, I doubted this percentage he gave because of the huge drop in percentage once the cancer spreads out of the abdomen. Though I know he is one of the testicular cancer experts, so I went by what he told me.

    I was giving 3X BEP. After the first 3 weeks, my HCG was <5 and my AFP 11. At this point I was really feeling confident considering how much I had improved after just 3 weeks. However, since this point, it has all been downhill. After the 6 week mark, my AFP went up to 19, though HCG remained normalized. Then after the 9 week mark my AFP rose again to 27, while my HCG remained normalized again. A week later I was giving another test to see if maybe the AFP gave out a false positive, but it turns out it went up again to 36. I just got another tumor marker test a few days ago, but have not got the results yet. Dr. Vaughn told me that sometimes AFP can be a bit higher for some people, but considering mine has continuously risen and is way higher than 20, he believes there is probably still live cancer in there. To confirm this, he first had me get an MRI of my brain, which turned out to be negative. Next, he is having me get a PET scan, which he says will determine whether or not there is still live cancer in there. Depending on how bad it is, he will either have me get a RPLND surgery or additional chemo (TIP regimen). He told me that additional chemo will only have about a 50% chance of working. Basically, if it has to go this route, my survival odds would then be much less than 90. So basically I am praying the PET scan is not that bad and I can just get the RPLND. If that is the case, my chances of survival would be a lot higher.

    I am trying to stay positive, but it is hard. I have a family, including a 2 year old son. The last thing I want is for him to grow up without a dad and to not even remember me. I am in so much mental anguish that I am going to go see a therapist for help. Any kind of advice or pointers anybody here could give me would greatly be appreciated. Has anyone gone through TIP before and could tell me what to expect? Did it work for you? I know RPLND seems to be common for a lot of people here, though TIP seems to be more rare.

  • #2
    Sorry to welcome you here.

    My first question is what type of tumor did they find in the path report?
    The second is how long ago did you finish chemo?

    Keep in mind that even advanced cases like Lance Armstrong have survived (& his had spread to his brain), so your chances of cure are still pretty positive. I know it's hard to not imagine the worst, but you will do better if you can keep a positive attitude.

    Hopefully someone whose been through TIP can provide some info for you.

    Please keep us posted as you learn more

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

    Comment


    • #3
      Hi, thanks for the reply. I forgot to mention the pathology. It was 100% embryonal carcinoma, so he was very positive the chemo would work since EC is very sensitive to BEP. I finished my chemo about a month ago. The last month has been blood tests and scans mainly, though still waiting to get the PET scan.

      And thanks, I am trying to keep my head up, but it is very hard because the momentum has been downhill. Hopefully therapy and support here can help me.

      Comment


      • #4
        hi Joe,

        I can truly relate to your anxiety.

        Fingers crossed for your PET CT and please consider the option of high dose chemo with your doctor (higher survival rate of appr 70%..even though side effects are more brutal).
        Last edited by sanis; 01-08-18, 10:56 AM.

        Comment


        • #5
          So sorry your tumor markers are rising post chemo. I would reach out to Dr. Einhorn for a second opinion. I attended a conference in October where he was a speaker, and although TIP may be the regime to use, he mentioned a couple of others at the conference. His email is 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


          • #6
            Yes, I was told about the option of a high dose chemo. If I can get that, I will definitely take it. Though hopefully I can just get the RPNLD.

            I understand Dr. Einhorn is the top authority on testicular cancer. I am not sure how much his opinion would differ from Dr. Vaughn, but I will email him.

            So far still no PET scan, but it should be happening sometime this week.

            Comment


            • #7
              So I got a reply back from Dr. Einhorn. He seemed to mainly be in agreement with Dr. Vaughn. Like Dr. Vaughn he feels the 36 AFP is probably a sign of progressive embryonal carinoma. Also like Dr. Vaughn, he suggests a RPLND if only my abdomen is infected. If it comes to chemo, he suggested the high dose chemo with blood stem cell transplant. Apparently, this seems to be something different than TIP altogether. I do remember Dr. Vaughn talking about an option for high dose chemo, so if it comes to that, I am definitely going to go with it.

              Comment


              • #8
                hi Joe, this sounds like the perfect plan. lets hope that only your retrop. area is affected. BTW is your liver perfectly working?

                Comment


                • #9
                  Hi Joe,
                  I am sorry to hear that, but I think your AFP was not growing fast.
                  I also have pure embryonal carcinoma (EC), this is the growth rate of AFP

                  22/06/17 AFP 3 IU/mL (&lt;7 normal)
                  14/07/17 AFP 9
                  28/07/17 AFP 35
                  09/08/17 AFP 201, Start BEPx3

                  EC growth very fast, however I think that your AFP value is still under control.
                  30/12/16 2.5cm on right testis, 6mm on left testis.( B-HCG 0.34 <2,AFP 4.5 <7)

                  24/01/17 Right I/O
                  (Pure embryonal carcinoma, no lymphovascular, no invasion of tunica albuginea, rate testis, epididymis, spermatic cord. )

                  14/02/17 AFP 2<7, 6mm on left testis
                  17/02/17 Survelliance
                  06/03/17 CT scan (Visible lymph nodes in the mediastinum . probable benign reactive appearance)

                  28/07/17 AFP 35 (normal 7), relapsed confirmed
                  04/08/17 CT scan (new metastatic para-aortic lymph node 1.6cm AP1.5cm)
                  10/08/17 Start 3 BEP, AFP201 (normal 7)
                  06/10/17 End of 3 BEP, AFP3 (normal7)
                  17/10/17 CT scan
                  27/10/17 Prev left para-aortic lymph node not seen. AFP2(normal 7), B-HCG <2, LDH 208( normal 118-220)

                  Comment


                  • #10
                    JOEM~ I hope Dr. Vaughn and you will consider Dr. E's imput. He is the top TC Oncologist in the world. Please keep us updated, so sorry you are going through this again.
                    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
                      This Dr. Vaughn? If so, I would be comfortable working with him and trusting his opinion. He is listed on the TCRC experts list here:http://tcrc.acor.org/experts.html

                      Dr David J Vaughn
                      Director, Abramson Cancer Center's Clinical Research Unit
                      Professor of Medicine, Hematology-Oncology
                      Abramson Cancer Center at the University of Pennsylvania
                      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 - 9/18/15: 4xEP
                      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!
                      3/29/2018 all clears up to this date!

                      Comment


                      • #12
                        Hi Joe, sorry to hear things didn't go to plan - hopefully new treatment will help! It's so hard with family too - the worst was my 3 year old son not understanding what's happening because it's too much and everyone is super stressed and he can only feel something is wrong... Once we explained it best we could, and had special toys at the hospital, and we had his birthday party in the hospital when I was doing chemo and it helped to him be a part of it, not being excluded
                        July 2016 - Left I/O
                        December 2016 - BEPx3
                        All clear for 1 year!

                        My Testicular Cancer Support Kit
                        First Oncologist Visit Checklist
                        Simplify Cancer Podcast

                        Comment


                        • #13
                          Thank you all for your support. I got my PET scan, but am waiting for my appointment with Dr. Vaughn on Monday. From my interpretation of the report, it looks promising. For all enlarged nodes, FDG avid intake was low and the impression was that there was no definitive sign of active cancer. There was one exception in which it said my FDG avid intake was "mild" for one node in the chest, but it said it was probably due to inflammation and not cancer. Fingers are crossed that all turns out ok and I can get the RPLND surgery. Only my lymph nodes in my abdomen, pelvis, and chest were affected by the EC cancer. My liver and all other organs are fine.

                          Comment


                          • #14
                            Please update us Monday, wishing you the best.
                            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


                            • #15
                              Hi everyone. So todayís appointment went good. Dr. said the PET scan did not show any live cancer and therefore he said I will be getting the surgery instead of more chemo. PHEW......

                              Only down side is he did say that PET scans are not 100 percent accurate and can reveal false negatives. While the pathology will most likely show dead tumor or teratoma, there is a small chance that live cancer could be found, which would mean I would need additional chemo. I am praying that is not the case, but he did say this would be a small likelihood. He seems to strongly believe that this surgery will cure me.

                              I can breath just a little easier now, but I am still a little nervous. I donít think I will start to feel very comfortable until I know for sure no more live cancer is in me. I am definitely more hopeful than before though.

                              Comment

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