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My story, post-orchiectomy

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  • ChrisNY
    started a topic My story, post-orchiectomy

    My story, post-orchiectomy

    Hello everyone,

    My name’s Chris and I’m writing from NY (as my username no doubt reveals). I’m an active, healthy (besides the obvious) 34-year-old.

    I’d first like to thank you all for the community you’ve created on here. I’ve been lurking the past few weeks, and it’s been both informative and encouraging to see all the support you offer each other. Indeed, it’s kept me sane during this difficult period in my life, which I’d like to share with you:

    After finding a small lump on my right testicle in mid-December, doctor visits and tests brought me to a Right I/O on February 9. The surgery went well and I’m recovering just fine. Met with my urologist (who performed the surgery) yesterday to review the pathology report (sorry for its length, but figured I’d include everything):

    Microscopic Diagnosis:
    RIGHT TESTES AND SPERMATIC CORD, ORCHIECTOMOY:
    Germ cell tumor/embryonal carcinoma, measuring 0.8 x 0.8 x 0.7 (see synoptic report).
    Testicular atrophy is present adjacent to embryonal carcinoma.
    Spermatic cord lipoma.

    Immunohistochemistry:
    CD30: Positive in tumor cells.
    OCT3/4: Pending, will be reported in an addendum.
    PLAP: Positive in tumor cells.
    AE1/AE3: Focal weak staining in tumor cells.

    SYNOPTIC REPORT: GERM CELL OR SEX CORD-STROMAL TUMOR OF THE TESTIS

    Specimen laterality: Right.
    Tumor focality: Unifocal.
    Tumor size: 0.8 x 0.8 x 0.7 cm (gross measurement).
    Histologic type: Embryonal carcinoma
    Tumor extension: Tumor limited to testis.
    Margins
    Spermatic cord margin: Uninvolved by carcinoma.
    Other margin(s): Uninvolved by carcinoma, tunica vaginalis.
    Lymphatic-vascular invasion: Present.
    Regional Lymph Nodes: Not submitted.
    Histologic subtype of germ cell tumor in involved lymph nodes: N/A.
    Additional findings: Germ cell neoplasm in situ.
    AJCC pathologic staging: pT2 pNX

    Pre-orchiectomy serum tumor markers (performed on 01/19/2021):
    Serum marker studies: within normal limits.

    Serum tumor markers: S0

    Gross Description:

    “Right testis and spermatic cord.” A 37 g, 3.5 x 2.5 x 2.2 cm intact testis with a 3.5 x 0.9 x 0.4 cm attached epididymis and a 8.1 x 1.0 cm attached spermatic cord. The tunica vaginalis is intact, inked. Tissue is bivalve to show gray-white, smooth, glistening, intact tunica albuginea. Sectioning shows a 0.8 x 0.8 x 0.7 cm tan-brown, focally soft, well delineated lesion which is within .1 cm of the tunica of the albuginea and tail of epididymis, is within 10.5 cm of the spermatic cord margin. Remaining testis shows orange soft seminiferous tubules that can easily be teased. Additionally at the proximal margin is a 2.8 x 1.4 x 1.2 cm fatty, intact portion of adipose tissue attached to the spermatic cord. Cut surface is yellow, homogenous. RS as follows:

    1. proximal spermatic cord margin
    2. mid spermatic cord, adipose tissue
    3. distal spermatic cord
    4-6. lesion in its entirety, adjacent normal parenchyma, tunica albuginea, tunica vaginalis, possible rete testis, tail of epididymis
    7. additional normal parenchyma, epididymis lms


    I’m trying to be optimistic about all the encouraging signs: I have no symptoms, my blood results are normal, the tumor was small (even smaller than the ultrasound suggested), there was no spermatic cord involvement, and my Dr said the tumor was confined to the membrane surrounding the testicle itself (it apparently didn’t penetrate inward).

    But I’m also concerned with the cell type of 100% embryonal carcinoma (apparently rare and aggressive) and the presence of LVI.

    I’d of course welcome any comments, but I have two questions I’m particularly interested in:

    1. My Dr sort of downplayed the presence of LVI, saying he sees that practically every time. Based on my research, however, LVI is often enough negative, even in 100% EC, and it’s definitely a better sign to not have it.

    2. The pathologist staged me at pT2 pNX, which confused both me and my Dr. He said he checked with two of his colleagues, re-checked the official staging guidelines, and they all said there was nothing on my pathology report to support the Stage 2 identification (and apparently the pathologist will be unavailable to clarify until next week). What instead will show my exact stage is the results of the CT scan, which I hope to have next week. Maybe the pathologist noted the 100% EC and LVI and simply had to provide her own guess about spread?

    Thank you in advance for any insights you can offer and I wish you all a great weekend.

    Best,
    Chris

  • ChrisNY
    replied
    Today is Day 14 of BEP and I was therefore supposed to get my second Bleo-only to complete the cycle, but my onc denied treatment on the basis of my blood work:

    White blood cell: 1.4, down from 6.2 one week ago (normal range: 4-10)
    Neutrophil: .1, down from 4.2 one week ago (normal range: 1.6 – 7)

    I hate the idea of delaying this Bleo shot by a week, but I’m also concerned by these numbers. Based on my research, my neutrophil count qualifies me for “severe neutropenia.”

    What to do? From what I’ve read, a one-week delay in treatment isn’t a big deal, but is it even necessary for what should only be 1 course? (CT scans this week will confirm whether or not I’m still Stage 1-B).

    How long until my WBC count rises?

    Is it worth emailing Dr. Einhorn again?

    Leave a comment:


  • ChrisNY
    replied
    Hi all,

    Just wanted to post an update. I’m currently on Day 11 of BEP. All things considered, I’m tolerating the chemo, though I did want to ask:

    Will the vein in my arm that took the Bleo recover? For the last week, it’s hardened, sore, and far less pronounced. An ice pack has offered only minimal relief. My doctor said the vein may just need time to heal, but would be interested to hear any of your stories with this side effect.

    Here’s a report on my other symptoms:

    Fatigue: pretty intense, in part because my sleep quality and patterns have been disturbed.

    Nausea: omnipresent but held largely in check by meds.

    Appetite: surging—have to eat every three hours, particularly bad-carb “hangover food” like Chipotle, subs, pizza, Chinese takeout.

    Constipation: Taking Citrucel as needed, drinking over a gallon of water a day, and going for walks regularly.

    Hiccups (apparently it’s from the Cisplatin): sometimes for 8 hours straight. Annoying. Doctor prescribed Thorazine, which I neglected to take upon learning it’s typically prescribed as a powerful anti-psychotic.

    Tinnitus: 15-second bursts maybe 8 or 10 times a day

    Some dizziness, headaches and flu-like achiness.

    Honestly, it’s the mental symptoms that have been worse than expected: brain fog, irritability, extreme sensitivity to stimuli (particularly light and sound). Just a mental black hole. Grateful I took off work the long week.

    I will say at least I’m not noticing much neuropathy. Impossible to say if it’s from the cooling mittens and socks I’ve been wearing, but for $40 there’s no reason to not try them.

    Leave a comment:


  • BrendanF
    replied
    Hi ChrisNY, sorry you’re here, but glad that you have a plan and are moving ahead with it.

    Wrt to hair, mine started falling out rapidly after the first cycle of EP in the days before the second cycle. When I looked in the mirror it seemed like it was thinning out evenly so I figured I would let it run its course. After the second cycle when I started to get some energy back I looked at the back of my head with a hand mirror and it was much different than I had thought, patchy and weird. So I got straight to business and shaved it all off. It’s much lower maintenance now! I haven’t had to shave my face or head for a month. No hair all over the house. But this may not apply to you at all with 1xBEP. Seems like people respond differently

    Leave a comment:


  • Davepet
    replied
    Nobody really notices, so mamy guys are bald these days. That was my experience.

    Leave a comment:


  • ChrisNY
    replied
    Fair enough. And for what it's worth, everybody's still social distancing anyway, so it's not like I have to worry about a ton of people seeing me.

    Leave a comment:


  • Davepet
    replied
    I did not remove hair until it obviously started falling out,why rush it? It is certainly not "traumatic"by any stretch so when it happens no big deal.,1xBEPshould be fairly easy to tolerate, you won't feel perfect, but it will be over quickly

    Leave a comment:


  • ChrisNY
    replied
    So I spoke to my oncologist and he’s completely on board with what Dr. Einhorn said. He apparently already even has “Lawrence’s email and phone number,” so I assume they’re in touch from time-to-time.

    Chemo is still scheduled for April 5 with the goal to re-scan just before, to verify I’m still Stage 1B.

    I’m content with the progress we’ve made and that there’s a plan in place, even if I needlessly lost 2 weeks from administrative delay passing me from my urologist to my oncologist. Hopefully that doesn’t end up biting me in the ass.

    Any quick tips for getting through 1 x BEP? I already froze my sperm and have my anti-nausea medication for those 3 weeks. I figure I’ll also try those cooling gloves and slippers (to mitigate neuropathy) and shave my beard/cut my hair to get ahead of the trauma of possible hair loss.

    Leave a comment:


  • Mike
    replied
    You could always mention to the oncologist that you would like to do adjuvant therapy and if they are not in agreement, you can find another oncologist.

    Mike

    Leave a comment:


  • ChrisNY
    replied
    Wouldn’t you know, I just heard from Dr. Einhorn—what a dedicated man. Here is his response:

    1. Zero value for head MRI or PET scan

    2. BEP X 1 PERFECTLY reasonable but chest x ray and ab CT should be within 4 weeks of starting BEP X 1and hCG and AFP within 1 week to ensure you are STILL clinical stage I.

    3. We would never put in a PORT for just a single course.

    Not sure if this helps but obviously we would NOT feel comfortable with proceeding as described, especially with item #2.

    Now I’m officially concerned that my doctors are unnecessarily prolonging this. I have the weekend to figure out how to proceed, but obviously I’ll be calling my oncologist first-thing Monday morning. Do ya’ll have any advice on how to handle this? How do I graciously communicate to him that Dr. Einhorn says he’s wrong?

    Leave a comment:


  • ChrisNY
    replied
    I got an automatic reply from Dr. Einhorn saying he's out of the office and will have limited access to email from now until April 4. Damn. Maybe he will still respond.

    I am at least reassured by some studies indicating that 8 weeks between orchiectomy and adjuvant for Stage 1 non-seminoma is reasonable:


    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2361823/

    "Patients were to be registered within 6 to 8 weeks of orchidectomy"


    https://www.sciencedirect.com/scienc...23753419367705

    "Therapy was given 6-10 weeks following orchiectomy"


    Again, given my orchiectomy recovery, getting the CT scan and Covid vaccine, meeting with an oncologist, banking sperm, and preparing for chemo, etc, the very soonest could have been 5 weeks, so I'm thinking the additional 3 weeks isn't of concern?
    Last edited by ChrisNY; 03-19-21, 08:11 PM.

    Leave a comment:


  • Davepet
    replied
    I think emailing Dr E would be a good idea, At 8 weeks you may already be on surveillance by default, PET//CT scans are not really recommended , although that is what my oncologist ordered throughout the 5 years i was under his care.

    Leave a comment:


  • Derjayger
    replied
    By the given information you are in Stage 1B, yes.

    PET: The European and German guidelines (these are the only ones I know, sorry) don't reommend PET-CT in your situation,
    probably because of a bad cost/benefit ratio, the cost being also a quite high radiation exposure, not only the money. Better ask for a second opinion.

    Time between diagnosis and chemo: This is something I'd get a second opinion on as well.

    Just saw your other question about the brain scan. Here are the European guidelines: Brain imaging by CECT is recommended in patients with NSGCT, multiple lung metastases and poor-prognosis IGCCCG risk group (for patients with hCG values > 5,000 UI/L), or if clinical symptoms are present.
    Last edited by Derjayger; 03-19-21, 06:04 AM.

    Leave a comment:


  • ChrisNY
    replied
    Hey guys,

    Just a quick update: I met with an oncologist and chemo is tentatively scheduled to begin April 5. There still, however, seems to be some confusion between him and my urologist about my exact stage. In fact, my oncologist is sending me for a PET scan before chemo. I’m not sure why, given that my CT scans were completely clean a few weeks ago and my blood (re-taken today) is also fine, which means I’m decidedly Stage 1B (due to LVI), correct?

    Does anybody have any insight here? Based on my research, the staging benefits of a PET scan after a CT scan are minimal, to the extent they’re understood at all. My oncologist said there’s always the chance the PET could stage me up to 2A, in which case I’d receive 3 courses of chemo and not just the 1.

    Assuming I am in fact just receiving the 1 course, it will be approximately 8 weeks after my orchiectomy. Isn’t this basically the time limit for getting adjuvant? I’m concerned it’s already fairly late in the game, though I will say that between recovering from the orchiectomy, scheduling and doing all the tests, and preparing for chemo, the soonest could have been maybe 5 weeks after the orchiectomy.

    For what it’s worth, I’m planning on emailing Dr. Einhorn, just to get his confirmation that I’m Stage 1B and his blessing for my decision to get adjuvant, given my risk factors (LVI and 100% EC).

    Leave a comment:


  • ChrisNY
    replied
    I really appreciate all these replies, everyone. These messages have really helped take the edge off the anxiety this past week.

    Dave, to answer your question, I found the lump myself in mid-December and, between the holidays and my request to see a male doctor, the soonest they could fit me in for an exam was early January (though in retrospect, I’m sure if I were more clear and urgent in communicating that there was a bizarre lump on my testicle, they would have seen me sooner). From there, things moved quickly (blood work, ultrasound, meeting with my urologist, getting the surgery).

    I’m happy to report that my CT scans this past week came up completely clean, which means I’m officially stage 1B, correct?

    Based on my research, however, the 100% EC and the LVI means I’m “high-risk” stage 1B, about a 50% chance of relapse. Frankly, that’s not a coin toss I wish to make, so I’m resigned to getting the 1 course of BEP, which should bring those odds way down to lower single digits.

    My urologist told me he has a monthly meeting with oncologists and other professionals next week, at which time he’s going to present my case. I suspect he’ll use the occasion to match me with an oncologist who’s best suited to treat me.

    I’ll definitely have the option of 1 x BEP, right? To what extent, if any, will I have to really advocate for myself and convince them that I’ve done my homework and arrived at an informed decision?

    Also, what would you say is a typical amount of time between the Right I/O and the chemo (adjuvant in my case)? Would six or seven weeks be okay? It probably wouldn’t be until then, by the time I meet with an oncologist, schedule the chemo, and get my 2nd Covid shot (scheduled for March 25th). For what it’s worth, my urologist said they’d want to wait to administer any further treatment anyway, just to be sure I’ve recovered from my Right I/O.

    Lastly, even though my pelvic, abdomen, and chest CT scans are clean, should I really push for a brain scan as well, given that EC often metastasizes hematogenously? My urologist said my oncologist would decide, but either way my insurance might not cover it because I have no symptoms.

    Leave a comment:

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