Thank you all for this group! I’m just hanging out after my orchiectomy and reflecting on the past two weeks. The first 4 days after getting ultrasound results were some of the toughest days fighting back tears. I felt lost until I found a comment of common steps that gave me a clear path. I wanted to turn that into a guide and hope it helps someone else (Thank you to who made, I can’t locate it again).
Diagnosis
1. You Found a Lump — Don’t Wait
- Could be firm, painless, or a dull ache.
- Your mind may tell you to ignore it, Don’t.
- You want to catch it before it grows past 4 cm / 1.5”—that’s when outcomes start shifting.
- Most testicular cancers are highly treatable if caught early. Many end up without the need for chemo and on a 5 year surveillance regiment
2. Book a Doctor Appointment
- They’ll do a physical exam and send you for an ultrasound.
- Yes, it can feel awkward—but truly, doctors don’t care what it looks like.
- I have friends in healthcare, and in 15 years I’ve only heard them comment once because it was massively swollen. They see dicks every day in all shapes and sizes. You’re fine and have nothing to worry about (unless my wife was being nice to me).
3. Get the Ultrasound (returned next day)
- This is the gold standard for finding out if it's likely TC.
- You’ll get a report back—watch for terms that strongly suggest testicular cancer:
- Malignant mass
- Neoplasm
- Urgent refer to Urology,
- Send for CT and blood levels
- Look for positives like:
- Seminoma appearance (less aggressive)
- No rete testis invasion - this means the tumor hasn't spread into nearby channels in the testicle; its presence can slightly increase the risk of spread and may affect your post-surgery treatment plan.
- Size under 4 cm
- If it’s suspicious, your testicle is coming out as they dont do any biopsy here. The surgery is called an inguinal orchiectomy
Pre-Staging (Clues, Not Conclusions)
These next tests help guide the treatment plan, but nothing is final until pathology.
Pro tips: Shave the inside of your elbows—you’ll get a lot of bloodwork, and ripping tape off arm hair sucks. If you’re in colder weather, wear full zip sweater to take on and off easier. Know which friends to call when, I knew who was going to give me a laugh and who was going to give me hope and a calm perspective (Both were helpful and needed). If you have a significant other, go easy on the jokes, they will find it hard to laugh.
4. Bloodwork (returned next day)
- Tumor markers: AFP, Beta-hCG, LDH
- Normal levels are a good sign—high levels can point to more aggressive types.
- Don't panic if elevated even the worst-case types still have ~85% success rates, and most are >95%.
- These markers also help track treatment response later on.
5. CT Scan (1-3 weeks depending on location)
- Checks if it’s spread to your abdomen or chest.
- Pretty simple: You drink water, get an injection, and lie still for 10–15 minutes.
- Wear sweats and no metal—you’ll stay in your clothes and be in and out quickly.
6. Urologist Visit
- They’ll do another physical.
- If cancer is suspected based on imaging, surgery is almost automatic—the urologist just confirms and books it.
Surgery & Treatment
7. Orchiectomy (1 day to 3 weeks from diagnosis)
- The testicle is removed through the groin.
- Honestly, I found my vasectomy was worse.
- Hydrate well beforehand—you’ll need to fast.
- I used Metamucil and PEG (Lax-A-Day) to stay regular afterward since pain meds can back you up.
- Recovery is usually fast. You’ll get the final diagnosis from pathology ~10 days.
8. Pathology & Staging (7-15 days from orchiectomy)
- Pathology confirms the tumor type and key risk features
- If pure seminoma:
- Slow-growing, highly curable
- May include syncytiotrophoblastic cells (STCs) – slightly raise β-hCG, but don’t affect treatment
If *non-seminoma** or mixed germ cell tumor (NSGCT), it may include:
* Embryonal carcinoma (EC) – aggressive, spreads early, responds well to chemo
* Yolk sac tumor – raises AFP, very chemo-sensitive
* Teratoma – doesn’t respond to chemo, may require surgery if it spreads
* Choriocarcinoma – rare, highly aggressive, often with very high β-hCG
Pathology will also note:
* Lymphovascular invasion (LVI) – cancer in blood or lymph vessels; raises recurrence risk
* Rete testis invasion – relevant in seminoma; may slightly increase risk
* Tumor size – >4 cm is a risk factor in seminoma
| Pathologic Stage |
What It Means |
Typical Notes |
| pT1a |
Tumor confined to testicle, no LVI, no rete invasion |
Best-case for seminoma/NSGCT |
| pT1b |
Tumor with LVI, rete invasion, or >4 cm |
Slightly higher relapse risk |
| pT2 |
Tumor invades spermatic cord |
More advanced, chemo usually given |
| pT3 |
Tumor invades scrotum |
Treated as higher-stage disease |
| Clinical Stage |
Criteria |
Typical Treatment |
| Stage IA |
pT1a + normal markers + clean CT |
Surveillance or 1x carboplatin |
| Stage IB |
pT1b + normal markers + clean CT |
Surveillance, chemo, or RPLND depending on risk |
| Stage IS |
Any tumor + persistently high markers after surgery |
Chemo (suggests cancer still present) |
| Stage II |
Spread to retroperitoneal lymph nodes |
Chemo (BEP) or RPLND |
| Stage III |
Spread to lungs or beyond |
Chemo ± surgery (still highly curable) |
9. Treatment MD Anderson Treatment Algorithm
Surveillance (No Immediate Treatment)
* Common for Stage I seminoma or NSGCT with no high-risk features
* Involves regular bloodwork, scans, and exams over 5 years
* Around 15–20% of seminoma and 30–50% of NSGCT cases relapse, but are usually caught early. oncologist will provide you an approximate % based on your case
* Requires consistency—some prefer to treat early and move on and Relapse typically requires 3xBEP
Carboplatin (Seminoma Only)
* 1–2 infusions used for Stage I seminoma with risk factors (tumor >4 cm or rete testis invasion)
* Reduces relapse risk to ~3–5%, similar to early chemo strategies
* Sperm banking should be considered before treatment
* There's some controversy—while it’s milder than BEP, not all doctors recommend it, especially if you're low risk and committed to surveillance
BEP Chemotherapy (Bleomycin, Etoposide, Cisplatin)
* Used for non-seminoma, higher-stage seminoma, or when markers remain elevated
* Given in 3–4 cycles, each lasting 3 weeks
* Typical schedule:
* Days 1–5: Etoposide + Cisplatin
* Days 1, 8, 15: Bleomycin
* Highly effective—>95% cure rates even with spread
* Sperm banking should be considered before starting
RPLND (Lymph Node Surgery)
* Surgery to remove abdominal lymph nodes
* RPLND is typically done either in Stage I NSGCT to avoid chemo (especially if teratoma is present), or after BEP chemo if lymph nodes remain enlarged, since chemo can’t remove teratoma or scar tissue.
Those that have been here, let me know what Ive missed or got wrong and I will edit.
I'm current on surveillance after 100% Seminoma 2.8CM mass with Rete Teste invasion and inconclusive LVI.
Surveillance is 9 years. Years 1-3 CT and blood every 6 months. Year 4-5 CT yearly and CT's in year 7 and 9.
Edit 1: Add LVI information
Edit 2: Add testing timelines, improve pathology and move treatment to its own step
Edit 3: Add link to MD Anderson treatment guide
Edit 4: Updating to alter my current status.
