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First follow-up after I/O. Doctor says I will need chemo...

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  • First follow-up after I/O. Doctor says I will need chemo...

    Hi guys.
    Today, I had the first follow-up with my doctor after I/O today and went over the results we had so far.
    He wanted CT scans for my chest and abdomen/pelvis, but I requested to have x-rays for my chest for the sake of minimizing radiation exposure and he said OK.
    So I had post-surgery blood tests, x-ray and CT scan done Today, and now just waiting for the results again.

    The thing is, he said I will need further treatments, chemotherapy to be specific. He didn't even mention surveillance to my surprise.
    When I asked him if surveillance could be an option he said it's not a really option for me.
    I'm not sure about his statement because this is just based on pre-I/O tumor markers and pathology result and we don't even know if the cancer has spread and what stage it is.
    It could be stage 1 non-seminoma and I don't understand how he could make a statement like that... and I think I lost a bit of trust in him from this.

    My next follow-up with him is 12/05 and I will receive results for CT scan and tumor marker within a couple days.
    I plan to email Dr. Einhorn once the CT results come out for second opinion.
    Should I see an oncologist with my CT scan before my next appointment with urologist?

    What are your thoughts?
    10/24/2018: Diagnosed with tumor
    10/29/2018: Right I/O, Pre-I/O markers: AFP: 557, HCG: 9770, LDH: 807
    11/05/2018: Pathology: Embryonal 75%, Choriocarcinoma 20%, Yolk sac tumor 5%. 4.2 x 3.5 x3.5 cm. Tumor confined testis. No LVI

  • #2
    I would want to be handed off to an oncologist at this point, and that is much more common that having the uro continue care. I've seen many cases in here of the uro thinking chemo & the onc saying surveillance was OK. That said, your pathology shows 3 types of tumors that tend to be more aggressive, so I would definitely reach out to doc E once you get the CT report.

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

    Comment


    • #3
      so sorry! So you have not had CT Scan results yet? How can the dr suggest chemo based on no scan results yet and tumor marker results post-O not back yet?
      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


      • #4
        I would want to speak to a GU oncologist. Where do you live? Folks on the forum can suggest doctors.

        The choriocarcinoma and high embryonal content are risk factors for metastatic disease.

        The next step is to get the CT scan and post IO tumor markers in hand. Try to get the report to have on hand to consult with other docs.
        Age 31 - Portland, OR
        01NOV16- Pain in right testicle, palpable mass
        13NOV16- R I/O. Markers normal
        27NOV16- Stage Ia non-seminoma, 1.3cm, 100% EC, no LVI
        06DEC16 - CT scan clear
        09DEC16 - Started 1xBEP. Neutropenic at day 15; Worst part for me was bleo (allergic).
        03JAN17- Ended 1xBEP; start surveillance
        18MAR17-2nd pathology report shows 90% EC , 10% seminoma

        Comment


        • #5
          Hi guys. X-rays and CT report just came in.
          Chest X-ray is clear but I can't really interpret the CT report.

          Lymph nodes: There is a large centrally necrotic aortocaval soft tissue mass
          measuring 5.2 x 6.1 x 5.4 cm (AP x TRV x CC). There is marked mass effect to the
          adjacent IVC with marked narrowing. A normal fat plane between the mass and IVC and
          aorta is not seen. There is no definite intraluminal extension.
          There is an additional left periaortic central necrotic solitary versus 2 adjacent
          masses measuring 2.3 x 2.5 cm (series 6, image 40), and 3.7 x 1.7 cm (series 6,
          image 45).

          So I guess it's basically saying cancer has spread to lymph nodes, but what does it exactly mean? Anyone?
          Last edited by kohelet; 11-17-18, 02:24 AM.
          10/24/2018: Diagnosed with tumor
          10/29/2018: Right I/O, Pre-I/O markers: AFP: 557, HCG: 9770, LDH: 807
          11/05/2018: Pathology: Embryonal 75%, Choriocarcinoma 20%, Yolk sac tumor 5%. 4.2 x 3.5 x3.5 cm. Tumor confined testis. No LVI

          Comment


          • #6
            Hi Kohelet,

            Yes, it ispreaded. This area is normal landing zone I think, but I am not expert, your doctor will tell you more about your case. You need further treatments, maybe chemo is the first step, and should start soon.

            When is your next appointment? You need Post tumor markers test. Chemo can be done in where you live, but if you need surgery afterwards, then you need really in good hand like IU.

            Will you stay in USA for further treatments or you want to go back South Korea? My son is under the second week of cycle 1, he went to university this week everyday. I don’t know what will happen in cycle 2, let’s see.

            BRs

            Amy, Ryan’s mumm

            Comment


            • #7
              Hi Amy.

              My next appointment with my urologist is 12/05. I had post tumor markers test done when I had CT scans, but the results are not out yet (expecting next week) and I will email Dr. Einhorn as soon as get the results.

              I decided to stay in the US for further treatments, so I'm trying to find a GU oncologist by next Monday and will set an appointment with him/her as soon as possible.
              It's great and encouraging to hear he's doing well. Hope the rest of cycles will be easier for him if not the same.
              And one quick question. How many days did he have to stay in the hospital for chemo?
              10/24/2018: Diagnosed with tumor
              10/29/2018: Right I/O, Pre-I/O markers: AFP: 557, HCG: 9770, LDH: 807
              11/05/2018: Pathology: Embryonal 75%, Choriocarcinoma 20%, Yolk sac tumor 5%. 4.2 x 3.5 x3.5 cm. Tumor confined testis. No LVI

              Comment


              • #8
                Originally posted by mcintoda View Post
                I would want to speak to a GU oncologist. Where do you live? Folks on the forum can suggest doctors.
                I'm in Dallas. Actually, I'm trying to find one and would appreciate much if someone can refer.
                10/24/2018: Diagnosed with tumor
                10/29/2018: Right I/O, Pre-I/O markers: AFP: 557, HCG: 9770, LDH: 807
                11/05/2018: Pathology: Embryonal 75%, Choriocarcinoma 20%, Yolk sac tumor 5%. 4.2 x 3.5 x3.5 cm. Tumor confined testis. No LVI

                Comment


                • #9
                  Kohelet, I am happy hearing you will stay in USA for further treatments. You really need a expert to treat you and you will be cured.

                  Actually we need everyday go to a cancer clinic, chemo takes us 4-5 hours per day, then my son slept a lot rest of the day at home. He drinks everyday 3,000-6,000 ml water, every side effects was easy solved by taking nurses advices. Next week he needs a port, so the surgery is scheduled at 11:30 Tuesday. That will make the rest treatments more easy.

                  Kohelet, I could feel your fear and nervous, could you try to go back to normal life? No matter how the illness is here, but not in organs, high cured rate, you need good sleep, eating healthy and everyday a little bit exercise (my son walked when he is fit). Then you can go through chemo with a good condition.

                  You need a family member taking care you during chemo treatment, I cook the food and bring lunch boxes, driving my son 25 minutes to get chemo injection. You need help.

                  I am so sorry for you, it makes my heart break when I see young man suffering this disease. But I also feel in luck that we have so much possibilities to be cured, even we need maybe intensive treatments, but later it will be just a story later.

                  Thank you and I am always thinking of you.

                  Best wishes

                  Amy , Ryan’s mum

                  Comment


                  • #10
                    One thing you can do now is sperm banking and testosterone test.
                    Age 31 - Portland, OR
                    01NOV16- Pain in right testicle, palpable mass
                    13NOV16- R I/O. Markers normal
                    27NOV16- Stage Ia non-seminoma, 1.3cm, 100% EC, no LVI
                    06DEC16 - CT scan clear
                    09DEC16 - Started 1xBEP. Neutropenic at day 15; Worst part for me was bleo (allergic).
                    03JAN17- Ended 1xBEP; start surveillance
                    18MAR17-2nd pathology report shows 90% EC , 10% seminoma

                    Comment


                    • #11
                      Yes, I agree. I also think Dr.Einhorn can suggest one good oncologist for you too.

                      BRs

                      Amy, Ryan’s mum

                      Comment


                      • #12
                        Originally posted by kohelet View Post
                        Lymph nodes: There is a large centrally necrotic aortocaval soft tissue mass
                        measuring 5.2 x 6.1 x 5.4 cm (AP x TRV x CC). There is marked mass effect to the
                        adjacent IVC with marked narrowing. A normal fat plane between the mass and IVC and
                        aorta is not seen. There is no definite intraluminal extension.
                        There is an additional left periaortic central necrotic solitary versus 2 adjacent
                        masses measuring 2.3 x 2.5 cm (series 6, image 40), and 3.7 x 1.7 cm (series 6,
                        image 45).
                        The use of the term "necrotic" is confusing to me. That normally. means dead, non-active tissue (a good thing, sort of), but I've only seen it used after an actual biopsy, not after a radiological scan. I would want clarification on that.

                        Chemo in the US is usually outpatient so you get to go home every day. While it would be nice to have a driver to take you to & from treatments and a family member to help you at home, it is not actually necessary, I managed to get myself to & from the treatment center every day even with a 40 minute drive one way. I managed to fend for myself at home as well.You will get through chemo, if needed, one way or the other.

                        Dave

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

                        Comment


                        • #13
                          I am sorry to hear that it appears to have spread. If you are in Dallas, then I would look at seeing Dr. Bagrodia at UT Southwestern as he does a lot of work/publication with testicular cancer: https://utswmed.org/doctors/aditya-bagrodia/ I am not familiar with the other physicians that work with him but I would feel comfortable in his hands being that he is local.

                          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

                          For some reason I do not get notices of private messages on here so please feel free to email me directly at mike@tc-cancer.com if you would like to chat privately so as to avoid any delays.

                          Comment


                          • #14
                            Hi guys. Thank you for the responses.
                            I got my post I/O markers result couple days ago and emailed Dr. Einhorn.

                            Post-I/O markers - AFP: 816, HCG: 10649, LDH: 236

                            So I'm stage IIIB according to AJCC staging manual, and Dr. Einhorn has confirmed that I will need 4 cycles of BEP.
                            I'm seeing my oncologist, Dr. Arafat at UT Southwestern for the first time next Monday: https://utswmed.org/doctors/waddah-arafat/
                            I noticed that he completed his residency at IU and has a publication about testicular cancer in which Dr. Einhorn is one of co-authors, so I'm assuming he's acquainted with Dr. E.

                            Will keep updating.
                            10/24/2018: Diagnosed with tumor
                            10/29/2018: Right I/O, Pre-I/O markers: AFP: 557, HCG: 9770, LDH: 807
                            11/05/2018: Pathology: Embryonal 75%, Choriocarcinoma 20%, Yolk sac tumor 5%. 4.2 x 3.5 x3.5 cm. Tumor confined testis. No LVI

                            Comment

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