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My Story (Pre-Chemo)

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  • My Story (Pre-Chemo)

    Firstly, I just want to thank all the members of this forum for sharing their experiences, information, and advice. I can't even begin to articulate how important this platform has been in helping me stay positive over the last couple of months... even with this being my first post, I was moved by how strong the support is across this amazing group of people. I hope to be able to contribute in the same way to folks who were in my shoes just a few months ago. So anyways...

    During the last week of April 2019, I began experiencing pains in my left leg and left testicle. I am currently in my late-20s, and had noticed a hardness in my left testicle beginning perhaps a year or more prior (first mistake!), but this was the first time I had experienced real lasting pain. By mid-day, I was in a urologist’s office, who happened to have good reviews online along with immediate availability. He performed a quick check-up and ultrasound, subsequently determining that the left testicle looked highly suspicious of a tumor. He recommended me to a urologist at Mt. Sinai and another at Memorial Sloan Kettering (MSK).

    I saw both urologists, and after a number of blood tests and ultrasounds, ultimately ended up having a left orchiectomy performed at MSK the following week. I came back to MSK in the week following the orchiectomy to discuss the pathology report, and for blood tests and a CT scan.

    The pathology report cited classic seminoma:
    ...consists of a testis and portion of spermatic cord measuring 17.4 x 5.0 x 4.5 cm in overall dimensions and weighing 152.8 g. The testis is covered by tunica vaginalis which is adherent to the underlying tunica albuginea. The tunica albuginea is tan-white, vascular and shiny. The testis measures 7.0 x 6.7 x 5.3 cm. It is inked black and bivalved along the long axis to reveal a 7.0 x 6.7 x 5.3 cm tan-white, fleshy, irregular and well-defined tumor with focal areas of yellow softening and hemorrhage. No viable uninvolved testicular parenchyma is grossly identified. The tumor appears to not involve the adnexa and the peri-testicular soft tissue. The rete testis is possibly grossly involved by tumor. The epididymis measures 2.4 x 0.5 cm and is not involved by tumor. The spermatic cord measures 9.8 x 1.4 x 1.0 cm and is unremarkable.

    My blood test results were as follows:
    Fom early May (pre-orch), mid May (post-orch), and mid July (first surveillance check-up), respectively: AFP (1.8, 2.3, 1.6); HCG (0.5, <0.5, <0.5); LD (688, 193, 126).

    With respect to the CT scan, the doctor mentioned there were some lymph nodes that we would have to keep an eye on for surveillance:
    May 2019 CT of chest, abdomen, and pelvis
    ABDOMINOPELVIC NODES: Few small retroperitoneal lymph nodes. Aortocaval caval node measures 1.0 x 0.6 cm, series 2 image image 75. Left retroperitoneal node measures 1.1 x 0.7 cm, series 2 image 79.
    IMPRESSION: 1. Few small retroperitoneal lymph nodes. 2. No pulmonary nodules.

    Fast forward two months (July 2019) and I went back to MSK to do my first surveillance check-up of blood tests, x-ray, and CT scan. I came back the following week to review my test results. I was told that the CT scan revealed a few enlarged retroperitoneal lymph nodes:
    July 2019 CT of abdomen and pelvis
    ABDOMINOPELVIC NODES: Increased retroperitoneal lymphadenopathy. For example: * Left periaortic, 2.4 x 2.0 cm, previously 1.4 x 0.8 cm * Left periaortic, 1.3 x 0.9 cm, previously 0.8 x 0.6 cm Slightly increased 0.9 x 0.7 cm gastrohepatic lymph node, previously 0.8 x 0.5 cm. Prominent deep inguinal lymph nodes are unchanged, probably reactive.
    IMPRESSION: 1. Since May 13, 2019, increased retroperitoneal lymphadenopathy, suspicious for metastases. 2. A nonspecific subcentimeter gastrohepatic lymph node is slightly increased, possibly reactive.

    I was then told that I was going to be guided to speak with the urologic oncologist for chemotherapy treatment later that morning. I met with the urologic oncologist, who conveyed that this was now in Stage 2B and recommended that I begin four rounds of etoposide and cisplatin (4xEP) chemotherapy starting in early August. I understand that there are a few options (e.g., RPLND, 3xBEP, etc.) here and would like to make sure I am apprised of the recommended treatment before moving forward... I am planning to consult with other institutions in New York over the next week or so, though I would welcome any advice, opinions, or experience from this forum.

    My understanding is that this is really a "pick your poison" situation, and the 3xBEP has potential leads to lung toxicity / pulmonary conditions, while the extra round of EP in the 4xEP may lead to other secondary diseases (i.e., cancers) as well. However, both are extremely effective in treating seminoma. A huge thank you to Dr. Einhorn for largely turning this disease on over its head.

    I have a very positive outlook and mindset on my prognosis thus far... no doubt cancer sucks, but I feel extraordinarily fortunate and grateful to have access to the best doctors, treatment, and facilities, want to continue to best position myself to live a long, healthy, and high quality life. I understand that only a few decades ago, the odds of survival were starkly different than today, and am aware that the odds are greatly in my favor at this point.
    Last edited by neonpothos; 07-26-19, 01:24 AM.

  • #2
    Sounds like you are pretty well informed and have a handle on things.

    I would consult with the experts and see if they would be interested in an RPLND. Avoiding chemo would be a very nice thing. And honestly, even though RPLND is a major surgery, you will be back to normal quicker than with chemo. Chemo is a ong grueling process with a long recovery time.
    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!


    • #3
      First off, the risk of lung problems with 3xBEP is very small, I can recall only a few mentions of it on this forum, despite hundreds of guys that got 3xBEP. That is no consolation if you are in the minority, but the odds are with you. Also, I recovered much more quickly from chemo than I did from my RPLND, ut my surgery was over 40 years ago & it seems they have improved their techniques quite a bit over the years. I would definitely discuss the options with your doc before committing to 4xEP.

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