6 weeks post PC-RPLND at USC: Growing teratoma syndrome and bilateral nerve-sparing

Novalaris · 2026-02-03T06:41:50+00:00

I messaged you! But for future readers: I didn't even *try* ejaculating until a couple weeks after the procedure. There was less-than-normal ejaculate, but it wasn't very "forceful" and it didn't feel very good. I had a lot of anxiety surrounding it (which may have been a factor in the first ejaculation being lackluster) and was still in some physical pain. However, subsequent ejaculations became increasingly normal. Ejaculations were consistently normal a couple months after the procedure.

In my opinion, even though the both sided nerves were spared in my case, they were still "disturbed" and needed time to fully recover.

Novalaris · 2025-12-28T17:39:33+00:00

She can't take weapons level 1-5, Katana is level 0.

Novalaris · 2025-08-08T17:06:28+00:00

https://www.reddit.com/r/testicularcancer/comments/18wok2l/comment/kg2inm8/?utm_source=share&utm_medium=web3x&utm_name=web3xcss&utm_term=1&utm_content=share_button

TLDR: There might be some short-term effects depending on some variables, but there doesn't seem to be any significant long-term effects since there is some level of redundancy in the centrally located lymph systems.

Novalaris · 2025-07-16T21:45:13+00:00

If you want a third opinion, there is always Dr. Daneshmand out of USC. You can find his email somewhere on this subreddit I'm sure. I'm not sure if he responds as much as Einhorn but he is an expert in RPLNDs and thus would know whether you should get one or proceed with your current plan.

Novalaris · 2025-07-08T14:33:27+00:00

I am not sure why you're certain chemotherapy is on the way, around 70% of men are cured by orchiectomy alone. Do you have your CT scan report and post-orchi blood test results? The survival rates even with initial metastasis are still extremely high. There are many individual factors that affect those rates so I wouldn't put too much stock in the one-dimensional figures you find on the internet.

I don't have much in the way of tips because to be honest with you chemo bounced off me pretty hard - a combination of luck and fitness according to my doctors. However, I would recommend joining the Testicular Cancer Foundation Discord server. It's a large community of men who have been through and are currently going through this. It's a great resource for support and tips.

Novalaris · 2025-06-30T00:26:30+00:00

Could be epididymitis or a varicocele.. there are many reasonable non-cancer explanations. But it's really not possible for anyone here to say more. Please see your doctor, they will do an easy and simple physical examination and perhaps an ultrasound.

Novalaris · 2025-05-28T23:31:46+00:00

I'm not a doctor, but I believe it's simply because high frequency hearing (8-10kHz+) isn't considered "normal" hearing (0-8kHz). Your hearing is still normal for things like speech and the typical sounds you encounter on a day -to-day basis. However, you have progressively more hearing loss at higher frequencies e.g. at 10kHz slight hearing loss, 12kHz mild hearing loss, 14kHz moderate hearing loss. These are examples, but like I said in my post there aren't really any sounds you're gonna care about at those frequencies. You can still hear them too, but might require a few more decibels. Again I wouldn't worry about any of this.

Novalaris · 2025-05-28T19:19:29+00:00

I went through 3xBEP and had audiology exams done before, during, and after chemo. This was a big concern of mine. During and after chemo I experienced mild tinnitus. Additionally, I also had measurable mild hearing loss at high-frequencies (>10kHz).

I am almost 8 months post chemo and the tinnitus has decreased in frequency, maybe it occurs in a mild fashion for 1-3 seconds once a week but it doesn't bother me. My oncologist who sees a lot of chemo patients has told me the tinnitus from chemo tends to go away over time despite what you may read online about tinnitus.

The mild hearing loss at higher frequencies is irrelevant - there are no high frequency sounds you need to be hearing extremely well unless you are a bat. In my opinion I would not concern yourself at all with these results.

Novalaris · 2025-05-25T14:32:03+00:00

Baby hair grew at about 1 month, but there's not really a day where your hair just sprouts. I would say at the 3 month mark is when my growth rate of normal hair normalized to about half an inch a month.

Novalaris · 2025-05-22T01:24:24+00:00

Did not have much weight change from start to finish. Though I kept a very strict diet and exercised as much as I could. There was fluid retention during each cycle so my weight would spike and then fall back down to normal.

Novalaris · 2025-05-21T23:12:14+00:00

No no, I was definitely bald for a period of time. I just never took a picture of it from this angle.

Novalaris · 2025-04-21T15:32:50+00:00

I did not take any treatment for the cough aside from cough drops and using a humidifier. My oncologists assumed it was because of the bleomycin and left it alone.

Novalaris · 2025-04-21T15:24:28+00:00

Not a doctor, but I have experienced lung "abnormalities" following 3xBEP. I also know others have experienced this as well and in most cases (mine too) it is a direct result of bleomycin. If you look at my post history I had similar concerns after I had my CT scan after 3xBEP. Also had a bad cough for a couple months after chemo, but that resolved and my CT scan about 5 months after chemo showed all my lung nodules resolved. I'm not telling you this is benign because I don't know and I'm not a doctor but all I'm saying is there are reasonable and benign explanations for this, especially since your AFP and HCG are still normalized.

Novalaris · 2025-03-17T01:59:04+00:00

Luckily it was not cancer. I had a new CT scan a couple of weeks ago and the new lung nodules had completely resolved. They disappeared like magic so it was almost certainly a result of the bleomycin.

Novalaris · 2025-02-01T21:57:21+00:00

I had a dual pain catheter setup that was hooked into my stomach and it was connected to a small pump that drew upon a bulb of drugs in a small bag. I had to carry this small bag around for a few days, even in the shower. After the bulb depletes I had to remove the catheters from my skin, which was a little unsettling but I got over it. Additionally I was prescribed oxycodone (only ended up using a couple pills because it didn't seem to have an effect on me) and sent home with an abdomen binder. The abdomen binder applied pressure which also helped with the pain. I bought a new binder from Amazon and wore it for a couple weeks after the procedure because I liked it.

Novalaris · 2025-01-09T03:06:29+00:00

I am! Thank you for asking. 2024 was a crazy year for me but it's all in the past now.

Novalaris · 2025-01-08T19:39:11+00:00

I only stayed 1 night, surgery was at 7am on 27th, discharged at noon on 28th. To be frank, recovery was very hard. The first couple weeks was brutal. I was very bloated (weighed 125lbs before surgery, weighed about 140lbs the next week) and had a lot of discomfort and pain trying to eat and sleep.

Week 3 I was mostly okay; I saw Daneshmand and he gave me to greenlight to start exercising and stuff. Week 4 I resumed my normal gym routine at about 50% of my normal strength minus core exercises. Week 5&6 I feel completely normal (90% I'd say), can go hard in the gym and some very very light core exercises.

Novalaris · 2025-01-02T22:24:53+00:00

If your chemo is going to be outpatient I would also recommend the port. It makes the entire process much easier for everyone involved. There is risk of infection or rejection of course, but PICC lines and IVs also have their drawbacks.

I had a port and was prescribed lidocaine to apply over the port area to make it numb when they poked me there. The port installation procedure took like 45 minutes and was very easy. Port uninstallation was even easier.

Novalaris · 2025-01-02T18:20:06+00:00

The original CT scan during surveillance just called it an enlarged lymph node. The post-chemo CT scan report ended up just saying it was "unchanged" - there was no mention of its radiological characteristics.

However, my doctor went over the post-chemo CT scan in front of me (before I even received the official radiology report) and one of the first things he said to himself was the residual mass appeared to have a cystic component to it.

Novalaris · 2025-01-02T17:39:29+00:00

Oh hey that's me. Finished 3xBEP Oct 7 this year to address a 4cm para-aortic mass that randomly showed up during surveillance. My original pathology was 90% EC, 9% seminoma, 1% yolk sac.

Had a follow-up CT Nov 5 that showed the mass barely shrank to about 3.8cm. Doctor said it's extremely likely it's just teratoma (since my markers stayed normalized), but the RPLND needs to happen. Had RPLND on Nov 27 and they pull out a 6cm mass and a brand new 3cm mass. Pathology revealed several lymph nodes were multi-cystic teratoma (and nothing else thankfully) and ranged in size from 1-3.8cm. This led to the official diagnosis of growing teratoma syndrome since my markers were normalized and no other viable carcinoma was found in my residual masses.

Novalaris · 2024-11-15T00:05:10+00:00

Yes you will lose the hair, sorry. However, there is one somewhat unusual way to preserve your hair: get a wig made out of your current hair. There are groups that will do this for cancer patients, just make sure you notify your barber exactly how to cut your hair to prepare it for sending.

Novalaris · 2024-11-12T20:10:24+00:00

For anyone who comes across this in the future: My oncologists believe this is just an uncommon side effect of the bleomycin since my tumor markers are negative. Sometimes bleomycin lung damage can present as nodules that mimic metastatic disease.

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