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New here. Sons stage III choriocarcenoma

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  • New here. Sons stage III choriocarcenoma

    My 25 year old was diagnosed in December with Stage III Choriocarcenoma. Forgive me if I don't know or use all the correct terms. He completed 4 rounds of BEP in March and had his scans on April 19th. The 23rd we were told they are going to be doing surgery (ies) We are awaiting an appointment to see the urology surgeon but will be meeting his thoratic surgeon on May 7th. His oncologist said he will have both surgeons but isnt sure if it will be at 2 seperate times or done together. Has anyone had 2 seperate surgeons? Any advice? In general or about the surgery what to expect?
    He is mainly scared the most reading he could loose the ability to ejaculate. When diagnosed he didnt have time to bank his sperm. It was so far advanced they started chemo the 2 days after the final pathology report came back. The doctor had told him at the time he may be fertile a couple of years after completing Chemo. So he has held onto that possibility all this time because more then anything he wants to be a father someday. But now he is scared he wont ever have hope for it after this surgery.

    His markers:
    AFP has always been in normal range
    HCG 12/20/17 ( dont know exact # doctor said over 57k when diagnosed)
    1/16/18 1153.6
    1/27/18 412.2
    2/1/18 281.7
    3/19/18 27.9
    4/26/18. 13.3

    Here is what his last CT report says:


    About This Test


    Study ResultImpression

    Interval improvement in metastatic disease within the chest, with
    reduction of multiple nodules/masses within the lungs. Bulky right
    paratracheal mass has also noticeably decreased.

    There has also been significant interval reduction in previously seen
    loculated right pleural effusion with minimal residual pleural fluid
    seen on the current study.

    In addition, there is improvement in retroperitoneal adenopathy seen
    within the abdomen, as described above.

    Electronically Signed by: Kurt J. Messer on 04/19/2018 at 11:43:27



    Staging for Metastatic choriocarcinoma.

    CT chest 01/02/2018, outside CT chest abdomen pelvis 12/16/2017

    2327.9 mGy*cm

    Multiphase axial CT images of the chest, abdomen, and pelvis were
    obtained following administration of IV contrast. Arterial phase
    obtained through the lower chest and abdomen. Venous phase obtained
    through the chest, abdomen, and pelvis. Delayed phase obtained through
    the kidneys and bladder. Oral contrast was also given. Sagittal and
    coronal reconstructions are provided and reviewed.

    CHEST: Thyroid is unremarkable. Right injection port is seen with its
    tip in the proximal right atrium.

    The heart is not enlarged. No pericardial effusion.

    Compared to 01/02/2018, there has been significant interval improvement
    in metastatic disease within the lungs. Bulky right paratracheal mass
    has also noticeably improved, measuring 4.2 x 3.8 cm on the current
    study, previously 8.2 x 6.2 cm on 01/02/2018. Examples of improving
    nodules/masses within the lungs include a 1.5 cm fissural nodule along
    the superior aspect of the left major fissure, previously 2.1 cm on
    01/02/2018, as well as a 5.8 x 3.8 cm mass in the right lower lobe at
    the base, previously 8.5 x 4.8 cm on 01/02/2018. A 1.4 cm nodule
    within the paramediastinal superior lingula previously measured 2.4 cm.
    Multiple other nodules within both lungs have also improved.

    The previously seen loculated right pleural effusion has also
    significantly improved with minimal residual pleural fluid present. No
    acute consolidation. No pneumothorax. No suspicious pulmonary nodules.

    The thoracic aorta is normal in caliber and demonstrates no significant
    atherosclerotic disease.

    Small hiatal hernia.

    ABDOMEN: The liver is unremarkable. No intra- or extra-hepatic biliary
    ductal dilatation. Portal and hepatic veins patent. Gallbladder
    present and unremarkable.

    The spleen, adrenal glands, and pancreas are unremarkable.

    No hydronephrosis. Normal enhancement and excretion of the kidneys.

    Interval improvement in retroperitoneal adenopathy compared to prior.
    For example, large pre aortic/ pericaval conglomerate adenopathy
    currently measures 2.5 x 5.3 x 6.2 cm, previously 5 x 6.8 x 7.9 cm when
    measured in similar dimensions. No ascites or pneumoperitoneum.

    No evidence of bowel dilatation or obstruction. The appendix is
    visualized and unremarkable.

    The abdominal aorta is normal in caliber and demonstrates no
    significant atherosclerotic disease.

    PELVIS: No ascites or free air. No significant lymphadenopathy.
    There is mild circumferential thickening of the urinary bladder, which
    may relate to suboptimal distension.. The prostate is not enlarged.

    MUSCULOSKELETAL/SOFT TISSUE: No acute osseous abnormality. No
    suspicious intraosseous lesion

  • #2
    Hi Crystarr. Sounds like a tough road for both you and your son. My son had stage 3c cancer and is now a 3 year survivor. One thing that helped us was to be in touch with a testicular cancer expert during treatment so we corresponded with Dr. Einhorn throughout chemo. Post chemo we flew our son to Indiana University so he could be seen by Dr. Einhorn in person. Is your son being seen by a TC expert? I think that's important with the 3c guys. Who is your son seeing?

    We also wish we had done some sperm banking but my son was also too sick and in too much pain for that to be feasible. We were in life-saving mode, not sperm-saving mode. We are also experiencing some anxiety about his chances of fathering children later in life but we're just so happy he's here to worry about.

    This forum was a great resource for us so I'm glad you've found it. Really big hugs at this hard time.


    • #3
      Thank you for taking the time to respond! He is being treated at UAMS in Little Rock, Arkansas. His oncologist left to go work at MD Anderson in March. That has been an entire headache they finally got him placed with a new oncologist but he does not specialize in TC. His area is neck cancers. So about Dr. E ....after reading more on these forums yesterday I did email him, sent the original pathology report, tumors marker dates and levels and the CT report above and he emailed me back!!!! He said do not let them do surgery at this point. He wants me to bring him to IU as soon as possible. I have been researching all morning trying to figure out the financial aspect of getting him to Dr. E as not sure his Ar state Medicaid (which is the only insurance he has) will cover any of it. I also have a call into his oncologist for a referral up there.
      Last edited by crystarr; 04-30-18, 12:44 PM. Reason: Edited: Sorry i am a horrible typist on my phone.


      • #4
        I am soooooo glad to hear you are in touch with Dr. Einhorn!!!!! If you're on FB, you can PM at Cathy Besley DeLoach and I'll help you connect with some more chorio mommies. The insurance aspect is challenging but I would 100% try to get your son to Indiana if at all possible. You have been on my mind non-stop. This isn't easy and I want you to know that you are not alone! More hugs!


        • #5
          I don't have much advice to offer but I wanted to say how sorry I am that you have to go through this and I am so glad you found this forum. People on here are wonderful and knowledgeable beyond belief. I also wanted second the center of excellence idea! I have read about many that would not have made it without the expert care they advocated for. And others that were given terminal diagnosis until they went to an expert and were cured. I know the finances are hard but if there was ever something to go into debt for it would be this. All my best wishes to you and your son!!!!
          Last edited by melanie; 05-01-18, 10:26 AM.
          2/7/18- Husband diagnosed
          2/12/18- I/O- Stage 1b 99% embryonal carcinoma 1%seminoma/yolk -CT's clear -All markers in normal range
          3/12/18-4/1/18 Adjuvant BEPx1
          4/12/19- ONE YEAR ALL CLEAR
          4/2020- Two years all clear
          4/2021- Three years all clear
          4/2022- four years all clear


          • #6
            I too can only offer my genuine support and love for you and your son at what you're going through. You 100% need a TC specialist. If Dr. Einhorn wants you in Indiana, go. Just pack up and go. Start a gofundme page. Ask for help. Ask Dr. E's hospital if they have free lodging, like Hope Lodge. This is not the time to be shy. Lots of very sick men on here who beat the odds with the right doctors and care. Your son will be one of them! xoxoxo


            • #7
              I would agree that doing all you can to get to IU is a good idea. I am assuming that the beta-hCG will continue to drop but making sure that it is normal may weigh-in on their decision making. Their thoracic surgeon at IU is top notch as well. What I have sen and you can ask about is that if bilateral lung surgery is needed that they may do one side first as the pathology in one lung is usually similar to what is in the other. Meaning, if one lung is just necrosis then they other lung may not need the surgery. Unfortunately, the pathology from the abdomen to the lung do not compare very well so surgery in both areas may be needed. Your son would definitely be in great hands at IU. IU may also have some experience with AR Medicaid and may be able to facilitate coverage

              Keep us posted.

              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
              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 [email protected] if you would like to chat privately so as to avoid any delays.


              • #8
                Hate that your going through this! Keep trying to work with IU in trying to get him there! They are the best and I assume your son had pathology report of 100% Chorio? If so (not trying to scare you) that is a very aggressive and danger sound TC to have. Sounds like he is responding well to chemo and everything which is great! But IU is your best chance to kick this horrible disease! Did he ever have his brain scanned!? If not I would push for that ASAP just to be safe. Keep ya posted wishing you the best.

                I’m also from Arkansas but I’m in NEA Jonesboro area.


                • #9
                  Thank you for all the responses. It has been a whirlwind few days since I started corresponding with Dr. E. He wants him at IU by next Tuesday or Weds. His local oncologist faxed his referral and records yesterday and I got the email from Dr. E an hour ago. So i am in planning mode. Trying to find lodging help. We will make the 10 hour drive. Anyone have recomendations on where to stay? Or know which forum would be best to ask in? I know nothing about Indianapolis. I will reply more later!
                  Last edited by crystarr; 05-03-18, 12:12 AM.


                  • #10
                    We stayed in an Airbnb once and in a hotel another time. Very glad you are going. I think the hotel we stayed in by the airport wasn’t very expensive. Did you get a PM from Mike Craycraft? He may be able to help with some information. Thanks for updating us!


                    • #11
                      I know nothing about Indiana, but I do spend a lot of nights out of town on business, I usually start at, which can give you an idea of prices in the area & point you to a few possible places. I always go to the motel's website to confirm pricing & make reservations as I've had problems sometimes with third party reservations not getting to the destination. Also see how folk's rate the place ( there will always be some negative reviews, but I stay away if there are more than 25% & few 5 star).

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


                      • #12
                        Wishing you the best, IU as you know is the place to take your son.
                        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.