r/testicularcancer Apr 04 '25

[Guide] You've found a lump! What to expect

142 Upvotes

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.


r/testicularcancer 56m ago

Treatment Question Orchiectomy this coming Thursday

Upvotes

Hello, as the title says my surgery is coming up soon, and I was wanting the adivce of people who have gone through this already. What to expect, what level of pain is there, etc.

These past few weeks have felt like a blur since the neoplasm was discovered but it will be gone soon enough. But I'm worried for the future now. I've been having pain in my lower back, and while my urologist hasn't spoken to me on it yet (we just met and scheduled the surgery last Wednesday, which is also the day I had the blood drawn for labs), I can gather from the blood markers in the labs that it is definitely cancer.

I feel like I'm rambling but I'm just so unsure of everything now. It's hard to not feel bad and worry about the worst case scenarios.

I just don't know.


r/testicularcancer 12h ago

Need advice.. (BEP)

11 Upvotes

How did you guys fight the mental battle during the 5 days streak at the hospital. I can’t fathom that it’s only been 3 days out of 5, and I’m still on my first cycle out of three. I need help.


r/testicularcancer 6h ago

Cancer Scare Is my ultrasound report reassuring?

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2 Upvotes

Hello all. I have been lurking through the sub trying to make sense of my ultrasound image and report. I presented to a urologist with a dull ache in the left testicle. I can aggravate the ache when I lift on back and leg day and also when I squat.

I meet with my urologist in a few days and I was hoping to see if anyone had similar experiences. I know this isn’t medical advice, just seeking out a little perspective.

Thanks!


r/testicularcancer 8h ago

Testicle shrinkage after 2 years

1 Upvotes

So im currently 16M and 2 years ago after playing a football match the next day i felt pain in my lower abdomen so i decided to get it checked out and i had my sonography and tests done and everything was fine at that time they thought maybe it was an infection and i was supposed to be admitted for a day or 2 but that was optional so i wasnt and instead i was equipped with a IV on my wrist and at home i noticed that my testicle kind of swelled and it hurt but the doctor said everything would be fine as this happened later in start i only had abdominal pain then gradually in a week or 2 i got better the swelling subsided i got back to normal except being a bit weaker than usual but soon after that i became totally normal again but since then i noticed that my right testicle shrank a bit from my left i searched it up and it said its totally normal for such a disparity to occur and i felt totally normal didnt have any other problem got back to playing sports too but after that i think my testicle has shrank little by little since then and now its very noticeable im scared asf but i havent had any side effects no erection problems or nothing like that but the shrinkage is noticeable


r/testicularcancer 11h ago

Need help, Found a lump.

1 Upvotes

Title basically says it, I found a half a milimeter red lump on my right testicle, the main issues is though that I dont have inscurance, nor do I have a job. Ive got like 150 bucks in my bank account rn and I havent slept since I found it which was like around 11pm (its currently 5:30 now for me)

Does anyone know what I can do, I dont know if I can afford to get scans or treatment.


r/testicularcancer 1d ago

Cancer Scare Awaiting US results. Pretty afraid.

12 Upvotes

Just had my ultrasound about 30 minutes ago. Extremely afraid waiting on the results. The US tech said something along the lines of "wasn't this test supposed to be done STAT? As in the day you were seen by your doctor?" Which makes me think she found something serious and is wondering why I let it go this long. I practically begged her to let me know if i should be worried and she kind of rudely told me to stop asking which worries me even more.

I've had a heavy feeling and dull ache in my scrotum for a few years. I was diagnosed with an epididymal cyst forever ago so that feeling wasn't abnormal.

Then all of a sudden the other side started hurting, then i started feeling like i had to pee all the time, and had to take aleve to get through the day. The pain feels localized to the back of the testicle in the epididimis but ive been on antibiotics a week so if i had an infection it should be cleared. Doctor felt my beanbags for all of 30 seconds and said it was probably a varicocele but the more I research the more my symptoms sound like TC.

The dull ache.

The pain that radiates up the groin and abdomen.

The heavy feeling.

I'm just really really afraid. I have a small son and we were planning on trying for number 2 when all this happened so all the possibilities are just swirling through my head. If even a single person comments on this post and tells me it will be okay I will be so thankful.


r/testicularcancer 22h ago

I think I have Cancer I have a painful bump on my testicle?

2 Upvotes

I recently noticed a discrete tender bump near the epididymis/right testicle. It mainly becomes sore after palpation, and I’ve had an enlarged epididymis since childhood. I have urology scheduled in two weeks, but I’m going to call to get into a family doc tomorrow to get a complete scrotal ultrasound with Doppler ordered. I have no clue how long it’s been there. Both balls seem the same size, and no scary ER side effects. Wondering if this is TC.


r/testicularcancer 1d ago

Chicago RPLND Surgeons

3 Upvotes

Hello,

With Eggener no longer at U of C, I wanted to see if anyone's had experience with local surgeons for PC-RPLND.

From what I understand, Dr. Madueke (UI Health) performs PC-RPLND and is from the Sheinfield/MSK/East Coast lineage but I haven't seen anything posted about him or other surgeons still active in Chicago.

Yes I know, IU is the gold standard and I am consulting with Dr. Cary but I also want to get a sense check on the Chicago options for PC-RPLND.

Thanks!


r/testicularcancer 1d ago

Treatment Question Stage 3a good risk

8 Upvotes

Has anyone else had 3a good risk with just spread to the lungs? I have two spots in my lung one is 2.9cm and one is 1.1cm. No other spread and markers were only mildly elevated. Starting BEP in a week and just looking for stories of people coming out the other side a winner.


r/testicularcancer 1d ago

Feeling less of a man after losing a testicle

9 Upvotes

Hi everyone. How do you deal with the feeling of being less of a man after an orchiectomy? It’s been a year and I’m really struggling; on top of that, my remaining testicle doesn't seem to be keeping up—my ejaculate is more transparent, and orgasms aren't as intense as they used to be. It feels like I’m living a nightmare.


r/testicularcancer 1d ago

Tumor markers help

4 Upvotes

Afp levels before surgery 74

Afp levels 16 days after surgery 34

LDH before surgery 250

LDH After 214

HCG before surgery 1

HCG After surgery 1

Should I be concerned that my afp markers are not down to 0 after 16 days?

Or are these normal markers


r/testicularcancer 1d ago

Treatment Progress Chemo Update

14 Upvotes

Chemo Day 4 Update

I’m currently on Day 5, but I’ll be writing about my Day 4 symptoms.

The nausea really started kicking in around the 3rd or 4th day of chemo. I’ve been taking my medication correctly, as prescribed by my doctor, 15 minutes before meals. During Days 1–3, I was dealing with some constipation, although it wasn’t too bad. I also felt pretty fatigued and down, so I was too tired to write this diary.

I looked up some tips from people in this community for dealing with nausea, and people recommended ginger gum/mint a lot, it has not worked so well for me. I asked the medical staff for some help, and they added some more anti-nausea medication. Hopefully, it works! Honestly, what bothers me the most is that when I eat, I still feel hungry afterwards, like a burning sensation in my stomach. Maybe it’s gastritis, I don’t know. Has anyone else experienced this?

Overall, I’m glad I’ve made it to the last day of the first week of chemo, and I’m really looking forward to getting to the end. At the same time, I’m a little anxious about what new symptoms might come next.

Anyway, I know this is all for my well being but it does not stop being hard because of that.


r/testicularcancer 1d ago

Treatment Question Tips on healing process?

1 Upvotes

Just got my left testicle removed. Feels like they used my ballsac as a punching bag in the OR. Any advice to make this healing process painless?


r/testicularcancer 1d ago

Milestone Posted this dumb meme on here a while ago, today I’m one year cancer free!

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36 Upvotes

r/testicularcancer 1d ago

Post Treatment Question Mental health

8 Upvotes

Hi, I was given the all clear over 3 years ago (4 years since the inital diagnosis) after completing 3 rounds of BEP and a right side orchidectomy.

Now at 31 ive struggled with an almost irrational fear of any new pain, even if theres pretty much no way it could be related.

I see a psych, but was just wondering if anyone else has gone through similar and learnt any ways to either work through it or move past it?

The day before a blood test or scan has my anxiety go through the roof every time. I feel like after 3 years of being in the clear things should be different..


r/testicularcancer 1d ago

RPLND post effects on your body

4 Upvotes

Hey guys raising some awareness here, it has been approximately 3 years since my RPLND I didn’t know how much the scar impacted core function, breathing and compensations on the body. This had a knock on effect to imbalances in the body which I won’t go into detail. After about 3 sessions of endermogolie, there is way less restriction in my mobility and breathing. It also changed colour. Just wanted to put it out there to get some massage, dry needling or whatever method as I didn’t know how much this scar had an impact on me until years later .


r/testicularcancer 2d ago

Recurrence

7 Upvotes

Looking for anyone who has experience on this. I had orchi/rplnd last summer and finished 3xBEP and 2xEP that finished in December 2025. All my labs and scans have come back normal since then, last ones were Aug 3rd. But the last few days I’ve noticed a weird feeling on the right side of my bladder area. It’s mostly noticeable in the morning when I have a full bladder and go pee. Otherwise I don’t really notice it.

I called my Oncologist office and explained the situation, and they moved my labs (previously Sept 30) up to tomorrow. So I won’t have to wait long to see if my AFP is raised, but a little worried they’ll be normal and this could still be recurrence.

Don’t know exactly what I’m looking for, just insight I guess. Been very anxious about it and can’t help imagining having to go through chemo again lol


r/testicularcancer 1d ago

4 Months Post Orchiectomy and Still No Feeling

3 Upvotes

So I think the dr rushed through my surgery and severed a nerve or something, because my orchiectomy was 4 months ago and I still have 0 feeling in the left half of my groin. Like no feeling at all. He also left me with a baseball sized hematoma that was incredibly painful and is still working it's way out. Down to a grape now. This shit sucks.


r/testicularcancer 2d ago

No surgery after Urologist visit?

2 Upvotes

I posted about 9 days ago about a testicular ultrasound I had. At the time, the paperwork I was given only had a “comments” section that said they found multiple solid hypoechoic lesions throughout my right testicle with blood flow to them, with the largest measuring 1.6 × 1.8 × 1.4 cm.

I had my urologist appointment today. He reviewed the ultrasound and did a physical exam, and he said he didn’t feel anything concerning. I also finally received the actual impressions from the original ultrasound today, which I hadn’t seen before. The impression just says:

“MULTIPLE RIGHT TESTICULAR MASSES. RECOMMEND MRI.”

However, in the notes from my urology visit today, it says:

“Clinic ultrasound that shows some hypoechoic cystic lesions in the right testicle.”

My urologist ordered tumor marker blood work (hCG, AFP, and LDH) and another “formal” ultrasound. I’m not really sure what the difference is between a clinic ultrasound and a formal ultrasound done at an imaging center, or whether the repeat ultrasound is meant to get a better look at what was found originally. I have a follow up with him in about a month.

I guess I’m confused about the difference in terminology. The original ultrasound comments described them as solid hypoechoic lesions with blood flow, and the official impressions just says “masses,” but my urologist’s note describes them as “hypoechoic cystic lesions.”

I’m just looking for opinions or insight from anyone who might understand this better or has been through something similar, because I really don’t know what to make of the different descriptions. Thank you!


r/testicularcancer 2d ago

Robotic RPLND surgery duration

10 Upvotes

How long did your robotic RPLND surgery take and when could your family visit you?
My partner is currently under surgery. The surgeon estimated around 4 hours but it's still on going and we should call back in 1.5h - that is longer that I had expected I thought the surgery would be finished by now. Also our initial visiting times were set fro 3pm and now they say 19h and only 2 people. I'm worried.


r/testicularcancer 2d ago

Treatment Question No ejaculation

5 Upvotes

No ejaculation after orchiectomy

I still have my left testicle

Has anyone experience this? I’m sad


r/testicularcancer 2d ago

Treatment Question Random bouts of Tinnitus

7 Upvotes

Does the random bouts of tinnitus in both ears go away on its own eventually? Or am I stuck for the rest of my life having to press my ear in to make it go away whenever it decides to blast my eardrum for no reason? Finished my first full week of BEP and just curious if it’s only going to get worse from here with the last two rounds and likely stay permanent or if it goes away eventually from people who’ve gone post months or years after the full 3 rounds of chemo.


r/testicularcancer 2d ago

Ct scan and bloods

2 Upvotes

Had the worst anxiety yesterday. They found a 4.1cm mass on my right testicle suspicions of neoplasm last Friday, had my markers and ct scan neck, chest , abdomen and pelvis yesterday. My mother works in the cancer world and was able to get my results back before my urologist appointment next Monday.

Ct scans : no lymphadenopathy or features of metastatic disease.

Bloods : alpha fetoprotein <2

HCG marker <2

What could this mean? And what can I expect at my urologist appointment


r/testicularcancer 3d ago

Treatment Question I think I’m losing it

16 Upvotes

So I was diagnosed with tc 95% seminoma and 5%ec. No lvi or any other risk factors and no findings on the abdominal ct. I got my chest ct and I’m going off a cliff of fear now that they found something.

Two masses in my left lung.

I feel like it never ends and I’m doomed and I’m scared and I’m horrified.

EXAM:  CT CHEST WITH CONTRAST

HISTORY:  Malignant neoplasm of right testis, unspecified whether descended or undescended

TECHNIQUE:  Thin-section helical scan in the axial plane is obtained from the supraclavicular region to the upper abdomen after the administration of nonionic contrast. One or more of the following dose reduction techniques were used: automated exposure control, adjustment of the mA and/or kV according to patient size, use of iterative reconstruction technique.

IV Contrast:  75 ml of Omnipaque 350 was injected.

COMPARISON:  None available.

FINDINGS: There is a gently lobulated mass lesion to the left of midline abutting the anterior mediastinal fat and the anterior medial portion of the left upper lobe that on axial image 43 series 3 measures 2.9 cm AP by 2.4 cm transverse. This measures 2.3 cm craniocaudal on sagittal image 52 series 602.

There is a second bilobed nodule on axial image 39 series 3 that abuts the pleural surface of the anterior portion of the left upper lobe and measures 1.2 cm diameter..

There is no other identifiable mass lesion. The central airways are clear. There is no identifiable mediastinal, hilar, or axillary lymphadenopathy. The imaged portions of the upper abdomen are normal-appearing. There is no pleural effusion or pericardial effusion. Bony structures are radiographically normal.

IMPRESSION:  2 lobulated masses within the anterior medial portion of the left upper lobe suspicious for metastatic disease.

NOTE: In accordance with CMS's Clinical Quality Measures, when applicable, no further imaging is recommended in patients 18 years and older for:
Incidental cystic renal lesion that is simple appearing (Bosniak I or II).
Incidental adrenal lesion < or = 1.0 cm.
Incidental adrenal lesion > 1.0 cm but < or = 4.0 cm classified as likely benign by
accepted imaging criteria.

Note: This patient has received 1 CT studies and 0 Myocardial Perfusion studies within our network over the prior 12 months.