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Following today’s oncology appointment, after an increase in the tumor markers over the past few weeks, the oncologist has decided to continue monitoring for now and wait until next week, when I will have a PET scan to check for any evidence of disease.

Apparently, he is “waiting” for the disease to show up on the scan before starting chemotherapy, whereas the recommended approach would be to proceed with BEP chemotherapy despite the absence of visible disease on the CT scan.

I’m a little surprised by his decision, which, paradoxically, is making me extremely angry and frustrated.

AFP: 30

β-hCG: 290

LDH: 168

Embryonal carcinoma, pT1, without lymphovascular invasion (LVI).

J'ai fais mon scanner ce matin, axé uniquement sur la zone abdominale/urologique.

Rien n'est apparu. Même pas un ganglion lymphatique.

Je passe maintenant à la chimiothérapie, en attendant de connaître le cycle et la date de début avec l'oncologue.

⚔️

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Today I had blood tests as a check-up before my first follow-up scan on October 1st.

Unfortunately, the tumor markers are rising again, and quickly.

β-hCG: 7 → 279

LDH: 224

AFP: 3.1 → 25.1

My oncology appointment has been brought forward to two weeks from now.

Waiting to see what comes next — time to enter battle mode 👀⚔️

3 months post-orchiectomy

It has now been 3 months since the surgery was performed.

As a reminder: β-hCG 1,244, Stage IA, no lymphovascular invasion (LVI), and a clear PET scan after surgery.

One month later, all the tumor markers were decreasing, but gynecomastia developed on the side of the surgery.

Blood tests were repeated, including tumor markers and hormone levels:

AFP and LDH were increasing, but still within the normal range.

β-hCG: 7

LH / FSH: within normal range

Testosterone: 20.200 nmol/L

Prolactin: 28 ng/mL, approximately twice the upper limit of normal.

An ultrasound was performed to check the gynecomastia. It confirmed that the tissue was healthy, but that I have moderate gynecomastia.

An MRI of the brain and pituitary gland was also performed, with nothing abnormal detected.

I had another appointment with my oncologist, who considers the situation to remain stable. The β-hCG is still within the normal range, and for the moment, there is no reason to be concerned.

He has shortened the interval between blood tests and CT scans, which ultimately leaves me with only one month off between each examination.

From a physiological point of view, everything is normal. Sex drive is present, everything works—and actually works better than before. The decrease in libido was only temporary.

On the other hand, I can feel some psychological changes. Apart from the fact that my brain has fully accepted that this is going to be a long battle, it now goes on high alert at the slightest symptom...

Sport helps me stay on track, and so do the people close to me.

For now, everything is going well.

Next appointment: early October for the follow-up PET scan.

Stay strong, brothers. 💪

Has anyone here experienced an increase in beta-hCG after an orchiectomy, despite having no metastases?

Mine dropped from 1,200 to less than 0.1, but today it has risen back up to 5.

How long after your unilateral orchiectomy did you start having problems with your testosterone levels?

In my case, I've become more irritable, I get angry more easily, and I have pain in the nipple on the same side as the orchiectomy.

I'm currently waiting for my doctor's prescription so I can have my testosterone levels checked.

Hey everyone,

I'm now 1 month post-surgery. My appointment with the oncologist is in a few days, but the latest update from my urologist is that active surveillance every 3 months should be enough.

However, there's one question that's really been weighing on my mind...

I no longer have morning erections or spontaneous erections at all. I have to masturbate or be intimate with my partner for anything to happen, and even then, my erections are less firm than they were before.

I brought this up with my urologist, and he told me that this can be a normal response after surgery while my body adjusts and my testosterone production gets back on track.

Has anyone here experienced the same thing? If so, did things improve over the following months without TRT ?

Stay strong, everyone. 💪

TEP SCAN RESULT : Hyperfixation of bilateral upper jugular lymph nodes, predominantly on the right side: these lymph nodes are most likely inflammatory and should be monitored.

No fixed subdiaphragmatic lymphadenopathy, and no distant lesion detected.

The lymph nodes are most likely due to the tonsillitis/sore throat I had during the PET scan.

I’m happy and relieved that I may be able to avoid chemotherapy.

Stay strong m'y friends

Hello,

​

By any chance, have any of you experienced your remaining testicle shrinking (atrophying) following the surgery?

One week since Orchiectomy

LDH 226 to 153

BHCG 1244 to 143

Embryonal carcinoma

Friends, today I had an appointment with the urologist to check the healing process and the prosthesis. Everything is going well, and I can resume upper-body sports and go back to normal sexual activity, while being careful with the incision.

Regarding the lack of morning erections, he confirmed that this is a normal response of the body given the surgical journey, and that in any case testosterone will be maintained by the only “friend” I still have hanging there haha.

He also received the biopsy results, which seem to be very encouraging.

Tumor appearance:

• Size: 2 × 2 × 2.5 cm
• Color: brown
• Presence of hemorrhagic changes
• Poorly to moderately well defined margins

A rapid intraoperative examination diagnosed a “carcinoma”.

The sample was processed into 8 paraffin blocks after formalin fixation.

Microscopic examination

The testicular tissue is infiltrated by a tumor consistent with a carcinoma, specifically an embryonal carcinoma, showing:

• Solid, gland-like or pseudo-papillary architecture
• Pleomorphic epithelial-like tumor cells
• Amphophilic cytoplasm
• Irregular, nucleolated, highly mitotic nuclei
• Presence of necrosis

No invasion of:

• Hilum
• Rete testis
• Epididymis or tunica albuginea

No vascular invasion detected.

The spermatic cord margin is healthy (negative).

Immunohistochemistry

Tumor cells show:

• CD30 positive
• SALL4 positive
• Weak/focal CD117 positivity
• Negative markers: Glypican-3, AFP, β-hCG

Conclusion

Right orchiectomy:

• Germ cell tumor consistent with embryonal carcinoma
• Presence of germ cell neoplasia in situ (GCNIS)

No vascular invasion detected.

Staging

pTNM (UICC 9th edition 2025):

• pT1 Nx Mx R0

Now I’m waiting for the appointment with the oncologist and a PET scan appointment in two weeks.

Post-op Day 3

Three days have passed, and the pain around the incision is very mild. Today is my last day on anti-inflammatory medication, and I’m really happy that I haven’t needed to use the opioids.

The healing process seems to be going well, and I walked 3 kilometers just to get back into some light physical activity. The scar is still too fresh to push for longer distances without some discomfort.

As for the vasectomy reversal, no pain at all and very few erections… frustrating, but I assume it’s a normal physiological response.

I had one this morning and took the opportunity to check everything out: no pain, no blood, and apparently the same volume as before. In short, it was just a quick test that will stay occasional for now so I don’t push things too hard.

The prosthesis honestly feels very real. I just need to gently pull it downward every morning in the shower so it settles into a more natural position.

I still check the other testicle every day in a slightly paranoid way. Hopefully my brain will move on from that pretty quickly.

Appointment in 3 days with the urologist to review the healing process and everything else.

Stay strong, my friends.

29 ans ... Le diagnostic est tombé il y a quelque jours.

Tout commence par un petit spike ball et l enchaînement d'un rebondi à 3 reprises sur mon appareil génital.

Rien d'alarmant , un rapport sexuel 24h plus tard , étrange, le paquet droit est sensible.

Je fini mon affaire et je palpe ! Je le sais il y a quelque chose .

J'attends 1 semaine , avec controle quotidien, naturellement je pense à un épanchement, rien de bien méchant. Mais la bosse est irrégulière et ne devrait pas être là.

Contrôle Urologue ... 1er diag : epididymite à confirmer par Echo

Echo : excroissance tissulaire vascularisée de 20mm , je le sais, la guerre commence , je vais perdre 1 de mes fidèles amies

Rdv Uro urgence : test des marqueurs tumoraux en urgence

Résultat : avez vous fait l'objet d'une ablation ? Réponse, non ... les résultats ne sont pas sous mes yeux , mais c'est acte c'est pour ma pomme ....

AFP : 80 UI

LDH : 226 U

HCG : 124 4mUI

Re Rdv chez l'urologue : le mot "cancer" ne tombe pas mais on le sait , intervention programmé le 5 juin avec pose de prothèse

Scanner IODE : pas d'extension tout semble encore sous contrôle et PDS dans les normes .

2 semaines que j'y pense matin , midi et soir .... finalement le cancer en lui même , un peu rien à faire ... par contre perdre ma testicule , la c est pas pareil.

Voilà. Le récit circoncis ( oui ma verge aussi ) d'un mec de 29 ans , sans enfant , sans tabac , sans alcool , sous 10h de sport par semaine.

Finalement ça n'arrive pas qu'au autre .

Force à mes gars concernés et à ceux qui nous donnent de la force 🍒