Hi, idk where to start, 2 weeks ago they found secondary tumors on my right lung 4cm big, I wasn’t that worried ngl more the people around me were, I just knew i needed help and I was ready for it. Then a week ago i went to get a biopsy, after waking up from the biopsy i couldn’t feel my legs, long story short I had a secondary tumor on my spinal cord 8cm long that they needed to operate, 6 chest vertabre spinal cord decompression they say that there is nothing in my spinal cord anymore, it’s a really long recovery, right away, i woke up not feeling my legs, and now it’s getting to me. They are saying that it’s testicular cancer that’s was just really aggressive. And again Im not that worried about the cancer more about my quality of life, no can give me a clear answer if ill walk again ever. Having to focus on my legs for next year easy having to focus on only cancer easy but both is just really hard for me and I would like to see if anybody has any experience or suggestions, I think i just need to talk to someone that went through it and tell me that everything is gonna be alr. I don’t know how people survive this shit, it feels so much easier just giving up. Not walking and living is worse than living for short amount of time with my fiancée living my last moments to the fullest. I’m 19 btw.

You fine folks seem incredibly knowledgeable on this stuff so I was hoping someone could look this over and tell me what it means. I have another week before my follow up appointment and I am dying to know more.

Thanks in advance, this community has been an amazing resource through this process.

Reposting since I accidentally deleted my first post, sorry!

Had a primary RPLND at IU. Doctor spared 3 nerves (L2 through L4) on right side but could not spare the left side. I wanted to ask if anyone knew my odds of ejaculation returning, and the timeline for that?

I'm going through first cycle of chemo right now and unfortunately it hits my ears quite hard. Everything sounds different right now and I also get short bursts of tinnitus.

Here's some tip: when the tinnitus appears/starts, I press my fingers on my earlobes to close my ears. Then I open my mouth as if I were to yawn and try to relax my jaw muscles and whole body. That makes the tinnitus go away much quicker compared when not doing it.

Maybe helps some of you out there!

Greetings all,

I was treated for TC in 2015 (left side orchiectomy) with etoposide and cisplatin (4 cycles) at age 28. I’m 39 now, and over the past 5–6 years I’ve been dealing with some persistent but mostly harmless leg issues. I’m wondering if others have experienced anything similar.

Hemosiderin staining: I have minor yellowish speckling on parts of my feet, ankles, and lower legs. I assume this is from vascular insufficiency related to chemo. It isn’t a big deal cosmetically, just noticeable.

Slow healing / fragility: This is the more frustrating issue. I do normal housework and DIY projects, but my shins end up looking like I’ve crawled through razor wire. Half the time I don’t even know where the injuries come from until I see them. Even light bumps or scratches take a very long time to heal, and scabs reopen easily. On several occasions, even mild wounds bleed much more than I’d expect. Something as small as brushing against a box edge can leave a lasting contusion, and scratching an itch has sometimes caused a line of bleeding down my leg.

For context, I do have mild permanent neuropathy in my feet (a general numbness I hardly notice anymore), which I know is very common after cisplatin. But this leg fragility and slow healing is the part I find unsightly and annoying.

Just curious if others have experienced similar vascular/skin issues in the legs after chemo.

I have pics I can reference... But I think that it removes the post due to whatever filter is in place.

Thanks in advance for any input,

My ATP tumor markers were right at 1,000 when I started chemo, which is one of the cut offs for Low/intermediate risk. So for this entire process they have been telling me that there is a good chance that I will have to do 4 cycles, but if everything goes well it will could only be three. Well on day eight of my third cycle I got the news that I officially won't have to do the 4th cycle. Just wanted to share because I am PUMPED about it, this cycle has been brutal and I was really unsure if I could handle another three weeks. Next week when I go in for my Bleomycin, it will hopefully be the last time I ever go in for infusion!

I had my follow up appointment with my Oncologist yesterday.

My diagnoses was a Stage 1a seminoma. The blood vessels were unaffected but the Rete Testes was. He said that might be a slight risk factor for relapse but its debatable.

He reccomended that I just do surveillance as opposed to carboplatin.

I am so grateful for this. I know im not out of the woods yet and still in a danger zone so to speak of recurrence but im very happy as it stands now that just surveillance is the best route.

Thank you to all of you on this sub. Its been a wealth of knowledge and support.

Did anyone else have a very high LDH pre orchidectomy?

I’m concerned 881 is very high. I’ve not seen many mention there’s being this high.

Mass in US is 4x2cm

Haven’t got CT back yet

21M one year after cancer and I’m still fitting with my testosterone I’m being taking clomiphene for 10 months already and same thing I lost my libido and sexual desire, gain 30 pounds, what do y’all recommend me?

My bf had his surgery 2 years ago. Luckily he didn’t have to get chemo after. We had sex last night and he said he wasn’t sure if he could get it up. And that mornings are usually better because testosterone is higher in the mornings.

I reassured him sex is good all the time. But I feel like he’s self conscious. I don’t want to ask him too many questions in case I hurt his feelings. But what can I do to help him feel more manly?

M26

Hello everybody, let me introduce you to my story.

Last summer suddenly my LEFT testicle was going in weird positions. I started overthinking and tought was varicocele or something else. I got checked i had a small varicocele but a doctor in my home country told me that is not normal to have it in very weird positions so he said would be better to do an orchidopexy, which is basically anchoring the testies to the bottom and resolve the vericocele at the same time.

I did it. After the surgery i developed a small hydrocele on the LEFT, the doctor said it can happen but is nothing to worry about if it doesn't bother me. I just causing some asymmetry but nothing else.

Some times goes by and i start to feel my RIGHT one a little weird , sometimes seems slitghtly out of position but nothing like the other one. Then suddenly since i was younger i got flashbacks of having some pea size bumbs on the left one from time to time and disapearing (around 16yo) i never did anything about it because was going away pretty fast. But mixing this + recent year kinda made me worry more about it.

In the past months i had i would say almost a disconfort on the RIGHT one i would describe.

I even did some post surgery ultrasounds and everytime the doctors both from the Radiology side didn't say they found anything significant but also asked my doctor in my home country ( president of urology on a vast area and has more than 8000 surgeries completed ). He said the same thing.

But periodically i feel like a swollen part of my RIGHT testicle. Looking like a epididymis/spermatocele but the ultrasounds never found something.

Last week i had a sudden pain in my abdomen and top right testicle so i rushed to the ER thinking was a torsion. At the end was a small inflamation and after the 5th ultrasound he said i had a small Cyst on RIGHT side.

Seems like no doctors find what i have or something with concrete precision but there is something deep down bothering me. When i get the feeling of swole looks like the top part of RIGHT testicle is bigger and shifts slightly to the more right and a little forward.

I will post a picture of highlighting the part.

If someone has or had a cyst can they confirm the position or symptoms? i would like to compare it just to make sure.

I know some people will tell me that to get other opinions but frankly 4 different Radiology depratments said more or less the same thing, but i can see something visibly that keep bothering me.

I am not overstressing and i am not imagining it. I attach the picture of description

My LEFT testicle still has a small hydrocele but is all healty and doesn't bother me anymore.

Bloodflows are good on both.
If you read all this thanks for the time.

Okay brief summary, have yall seen the PFAS lawsuit? Apparently there’s studies that link PFAS contamination in Tap water near military installations to testicular cancer and there is a major lawsuit in place for this. Anyone have any info on this? (I drink tap water all the time at work, I’m in the military). I’ve had on and off TC since May of 2022. Fully castrated.

Okay brief summary, have yall seen the PFAS lawsuit? Apparently there’s studies that link PFAS contamination in Tap water near military installations to testicular cancer and there is a major lawsuit in place for this. Anyone have any info on this? (I drink tap water all the time at work, I’m in the military)

I (19M) have been wanting to make this post for awhile now but I've been putting it off, so here we go. About 8-10 months ago, I started to get this feeling in my testicles. It felt like tightness, like my body was sucking them in almost. It all started when I got pretty sick and took this nasal decongestant (pseudoephedrine). In the past I knew this medication affected me down there, it would make it hard to ejaculate, not sure if this is a thing or not but it definitely is for me. So I played the feeling off as a side effect of the medication.

Fast forward a few weeks and not only did the feeling not go away, it changed and got worse. It isolated to the right side, and felt more like an ache/ tugging feeling? I ended up going to the doctor for this eventually it was bothering me so much. He felt around a little and said everything felt normal and gave me a list of things it could be (not cancer). He reassured me that he didn't believe I had cancer, he even told me he said it could be due to "health anxiety" and recommended medication (which I found to be ridiculous and honestly offensive) but said he'd schedule an ultrasound to be sure.

Fast forward again like 2 months and I get the ultrasound. That was like 4-5 months ago. The feeling now is more just like SOMETHING is there, but I can't really feel anything. Also my right testicle is bigger than the left, but has been this way for as long as I can remember. The lady was very reassuring and said she did not see anything abnormal and the report said the same, but how accurate are ultrasounds for this stuff? Like is it possible she missed it?

Since then, I've been going through these phases where I'll completely forget about this all, the feeling will just go away. Then it creeps back up for a couple weeks it seems. I told the doctor this and he said this definitely means it isn't cancer because the feeling wouldn't just "go away" it would be constant. How true is this? I'm going through a particularly bad "phase" right now which is what led me to finally post this.

Should I be trying to get another appointment? Another ultrasound? Why did this all start with a nasal decongestant?? What else could it be? I know this is kinda long and loaded with questions but any advice or help would be appreciated, I feel so alone in this w no one to talk to.

Hey everyone. Recently like August 15th.. I got a vasectomy. It was a cake walk. Over the last week or a little more I have had this small tiny tiny lump right near my epididymitis. Well looking things up it may be a sperm granuloma? But who knows. I don’t know this anatomy very well. Called my oncologist wondering what it was also my urologist. They didn’t seem concerned whatsoever. That being said today I was deep deep DEEP in my skull and called my oncologist having PTSD and anxiety. I got my blood drawn. Since I was diagnosed in December ‘23 with a classic seminoma I’ve been a mess. Stage 1. Two doses of carboplatin. My LDH has slowly creeped up slowly. I don’t know why.. should I be concerned about any of this? Today it was 174. May it was 166. Ugh. Also my total protein was .1 over the “normal” range. (8.3) just freaking idk why. Waiting for the other tumor markers to come back.

I had a large >5cm seminoma. Orchiectomy in April.

I decided to go down the surveillance route (no chemo), rather than adjuvant carboplatin. This was the biggest decision really... whether to try and reduce the risk or ride my luck.

The M371 test came back negative, which has justified that decision. I'll still need MRIs (I pushed for MRIs rather than CTs) and perhaps another M371 test perhaps in a year or so. But the M371 result shows that there is no detectable spread. There might be some tiny embers elsewhere which have yet to ignite/flourish, but the result has given more hope that I'll need no further treatment.

Is staging based off pre or post orchidectomy tumour markers? So far I know pre surgery: hcg is normal LDH IS 880 AFP isn’t back yet

Im very anxious about LDH being that high (Did do a weight lifting gym session a few hours before the blood test if that can make a difference)

Testicular mass on US is 4x2cm

Just wanted to give some hope to you guys out there. This December will be four years post BEP chemotherapy for my husband. We were told by the oncologist we would never be able to have kids again. When we chose not to sperm bank, we figured if it was God‘s will for us to have more kids He would make it happen. 🤷🏻‍♀️ We mourned our fertility and accepted our fate.

Well, for 1.5 years post chemo my husband had 6 (total) immobile sperm in his counts. Not 6 million, like single digit # of sperm. But starting in year 2 we noticed his beard and body hair started getting fuller again. I know that sperm cells are kind of similar to hair cells in that they’re fast growing cells and both similarly affected by chemo….so we took it as a good sign and got his count redone.

Well, my husband had healthy mobile sperm again! It was low, <18 million, but something was happening. His DNA fragmentation rate was <10%, which was great, and meant the chemo didn’t mess up his germ cells (?). We figured with more time it would keep getting better, and it did. Next count like 6-9 months later was ~150 million. 🎉

I had my own issues fertility wise (I only have 1 working tube) but two months after we got my issues addressed we are now pregnant naturally!!! 🥰

I hope this can give some hope to those of you looking to start or grow your family post-chemo.💜

Hey guys , I’m wondering how was your turn around time inbetween from the first time you found your bump/tumor to Treatment ? The reason I’m wondering is because from the time I found and realized I had my bump/tumor until now it’s been probably 3 months , the first month (June)urologist , urine test ect , then referred to sonogram probably 2 weeks after , then probably 3 weeks after that pelvic ct scan , blood work , then orchi probably a month and a half later , until now I’m post surgery 3 weeks in , and I’m still not in any treatment , my case is a non seminoma 98% embryonal carcinoma the rest 1% yolk 1%seminoma , I’m just worried because I feel like I should be getting some type of Treatment asap ? The oncologist didn’t seemed to concerned based on my blood work pre op, as for now, 3 weeks from now… I’m waiting to get a ct scan , to fully diagnose it … im based in nyc , idk if there’s too many ppl here and if that’s the reason ? Any feedback would help ! Thanks

¡Hola! Tengo mis chequeos el 29, y la verdad, no me lo puedo sacar de la cabeza. Acá va un resumen de mi historia. El 31 de marzo detectaron el tumor. 100% seminoma. El 11 de abril me operaron, y la biopsia mostró que no se había extendido al rete testis, así que lo sacaron todo en la operación. Los análisis de sangre pre-operatorios salieron con marcadores negativos, bien por debajo del límite, y la tomografía también estaba bien. A principios de julio me hice otro análisis de sangre y otra tomografía, y todo seguía limpio.

La cosa es que a fin de mes tengo otro análisis de sangre y tomografía, y tengo una scanxiety tremenda. ¿Alguien me puede dar una mano con eso?

i recently got my righty removed and just found out today it was a non seminomal tumour with mix of some others (doctors made a mistake so it reads 105% so i dont know what mix it is). ive now got a meeting with a specalist booked so she can run me down with either observation and scanning or chemo and my specifica and the general statistics.

i was just wondering for opions on if i bite the bullet now and do chemo, or wait and pray it doesnt come back.

Just 2 weeks ago my boyfriend (21) got diagnosed with testicular cancer. They found a tumor on his left testicle measuring 15.5 AFP. He immediately had to get his left testicle removed 2 days following the diagnoses. First 3 days of recovery was tough for him, but I was there every step of the way, helping him showering, use the restroom, I’ll cook, etc. But.. just this past Friday he was told the cancer spread to his left lymph node near his kidney, measuring a tumor about 2.2cm. Because of this, we had to pack up and move back to our hometown to start chemotherapy, switching from in person classes to online school, leaving the life we built for ourselves to move back with our respected families. He starts chemotherapy in about 2 weeks and he’s extremely anxious and bummed out and so am I. Any advice for me to make it easier for him to get through? Words of encouragement? Or any gifts? I could use any advice, thank you.

So I got a bilateral orchiectomy, and take my TRT and I healed from my orchiectomy very quickly and well, in about 1 week I was good and the incision healed up in 2 weeks with no visible scar.

I didn’t get prosthetics because i didn’t want them to get in the way of my healing, now I’m wondering if I should get prosthetics because things look empty down there and I’m not sure how it’s going to be when I’m being intimate with someone.

I would need 2 testicular prosthetics

Has anyone had prosthetics, how do they feel? How are they? Is it an unnatural feeling?

Reposting because everytime we find new amazing people! Everyone is welcome to join. Current patients, survivors, and caregivers! Weekly calls every Thursday as well at 8pm EST!

https://discord.com/invite/pGc57Y75zE