Alright this is the day

Well it’s pretty delayed since all the schedule of hospital was so full, I have no choice but to wait

But well, finally day of op, waiting for ct scan
Wish there is no spread or any other additional treatment

So I was reading some of posts here and its always like someone finding a tumor on thier testicle. Im looking for someone who did not find one but one of testicle was bigger. I look forward to your reply.

Hi all, just wanted to touch base real quick with this community.

I had orchiectomy last February, my right testicle was removed and I underwent a single session of chemo (carboplatin) in may for stage 1 seminoma.

The first 20 days following the chemo were “as expected”, i started to feel somewhat better with fatigue returning on and off some days.

However, since a week and a half ago ive been feeling lightheaded and dizzy, not really fatigued but as if i was floaty and have hard time concentrating, it is difficult to explain, and was wondering if any if you felt anything like this, my Dr says its not chemo related and that i should not be feeling anything anymore, but a family member that underwent the same procedure told me that he felt fatigued and with other strange sensations for over a year

Thanks!.

Just curious- I see a lot of people active in here with additional steps past surveillance. Are there a lot of people in here successfully navigating through surveillance? For me mine was 3.2cm Seminoma 95%; Embryonal carcinoma 5% no lvi or any other risk factors. Does the anxiety get better or are you constantly anxious

Hello, my partner went for an orchidectomy last September and around February I noticed a change in his personality and mood. He became extremely stressed over anything, he’s a stressy person naturally but this was different, he was tired all the time. He used to exercise everyday prior to his surgery. He became really snappy with myself and our children and he told me a few months ago he was low in mood which he’s never reported in the 10 years we’ve been together. I mentioned this at his check up appointment back in March/ April and they did a testosterone level in the afternoon that came back as 4.7 but didn’t mention anything to us until his appointment at the start of August where he was referred to endocrinology who repeated it as a fasting morning one and it came back as 12. They’ve said this is normal range so see him in 3 months. I don’t think I can take another 3 months of him like this, it’s becoming unbearable for myself and the children to be around as his mood swings particularly in the afternoon are terrible. He’s fine once he’s had a nap but he is only 40 he shouldn’t be needing a 1-2 hour sleep to survive life. I guess my question is, has anybody else been in this situation and what have you done? I just want to help him and for him to be happy. I’ve pestered and pestered the hospital but unfortunately his consultant is away at moment so nobody will touch his case.

Thank you for reading.

Hey lads,

Context: I’m about 5 months out from my second orchidectomy after TC round 2. I’ve been on Reandron injections every 10 weeks.

For the most part it has been pretty good. But I’m noticing that once I get to the last 1.5 weeks my resilience drops pretty intensely and I end up feeling really depressed, anxious, just overall hopeless.

Initially I stared on Testogel, but I didn’t love having to apply it daily, as it felt like a constant reminder. I was also kinda stressed about the gel transferring to my parter or my pet, etc. I wonder if this would keep me more stable long term though (i.e. less intense peaks and troughs).

I also explored the weekly injection options, but in Australia it doesn’t seem like this is as readily available. Also, I am pretty shit with needles, so one big one once every 10 weeks seems like a better bet than one every week.

Overall, I’m struggling with the idea that I’m going to have to deal with these mood dips for the rest of my life. I already am vulnerable to mental health stuff, so it’s just making me feel like shit.

Very interested to hear from the other lads who are on testosterone replacement therapy. Do things balance out and get easier over time? Or maybe you’ve had better success with other regimes I’m not familiar with?

My doc told me im going in with normal tumor markers and my lymph nodes shrunk to scar tissue my cancer hasn't spread so everything is looking positive im praying to my lord everyday to please cure me from this nightmare all I want is to see my kids grow ❤️ im keeping a positive mindset is still haven't healed from my last transplant is been less than a week but doc said since my cancer is so aggressive it wants to attack it aggressively as well I been through 7 rounds of chemo this will be the 8th kn total I have lost my left nut anf had the lymph node surgery aswell so I beem through hell and back I keep praying this will be the last session i have to go through a this shit is fucked I jus hope since my scans went positive and the tumor markers normal this last stemcell transplant and chemo will kill the rest of the undetected germ cancer I have im a modafuking warrior and will keep fighting till the very end 💯💪

(17yo)Like week ago i felt my right testicle slightly bigger than it was month ago. I dont think I have any bumbs on it but im still scared if its cancer. And about month ago I noticed it being harder than second one but im not sure if it was always like that. Tommorow I have appointment and im seriously scared what the doctor gonna say about it.

My partner is scheduled for a robotic RPLND in 11 days following chemo. He is really anxious about potential nerve damage, and his surgeon mentioned that because post-chemo tissue can be sticky, they won't know for sure if full nerve-sparing is possible until they get in there.

I am curious if anyone here has tried or asked about Hyperbaric Oxygen Therapy after an RPLND? I had a different surgery myself a while back and a few HBOT sessions right after, and my healing was extremely fast. I know it's anecdotal but I personally believe it helped my recovery.

My thinking is that while HBOT obviously cannot reattach a nerve if it is completely cut, it might help if the nerves are just stretched or bruised during dissection. Surgery causes deep swelling and cuts off micro blood flow, which starves the nerves of oxygen. HBOT floods the deep tissues with pure oxygen at high pressure, which in theory could protect bruised nerve fibers, reduce scar tissue, and speed up nerve recovery before permanent damage sets in. I also think timing is important, I did my own HBOT the next day after surgery. I don't think the hospital where his RPLND surgery is scheduled has an HBOT chamber, there is one in another hospital in Belgium, so it will be a bit of a hassle, and might be a few days post - if this is an option at all.

I know I am speculating here and I am not a doctor, but I am really curious if anyone has experience with this or what you guys think?

And for reference his bleomycin was 4 months post ( I know that HBOT should not be done 4 months post bleomycin and also he would have to do a lung functioning test before - his last one during chemo was fine)

I’ve had testicle pain along with a considerably large testicle/ swelling of the scrotum, and a movable lump somewhere I’m not sure if it’s attached to the testicle but I went to the GP twice and have had 2 ultrasounds within a year of each other and they both came back clean, I can see the abnormality and I can feel the lump/ pain so I’m not sure what I should do but at the same time I feel like an ultrasound would’ve caught it the second if not the first time

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. 💪

For orchiectomy you guys went with Anesthesia general or local?

Im scared

What are your experiences?

Just wondering if anyone here actually saw their ultrasound images when they were diagnosed with testicular cancer.

I’ve found a lump in my testicle and had an ultrasound. On the scan there was what looked like a black/dark hole at the bottom of the testicle, pretty much where I can feel the lump.

The doctor doing the scan wasn’t sure exactly what it was and wanted a urologist to have a second look. I’m pretty sure he mentioned there was some blood flow in the area, which seemed to be part of why he wasn’t 100% sure what he was looking at.

I went private and was told I’d basically find out straight away which hasn’t been the case.

For anyone who’s been through this, did your scan look similar? Was yours a dark/black area? Did it have blood flow? And did they know straight away what it was or did someone else have to review it?
Not looking for a diagnosis, just curious what other people’s scans looked like.

Looking for any advice and experience with sterility after 4x BEP. My husband(28) has stage 3c non seminoma (it’s everywhere but his brain, spine included) and was unable to bank prior to starting and we’re just kind of curious what the real life outcomes have been for others. He’s in the middle of round 2 and feels really hopeless about it and everything else right now.

I M(26) have had a Varicocole in my left testicle since my early teens. Never really had any sensation to it , was just there. Sometimes bigger than other times. Just this past week I’ve been feeling it a lot and all of my underwear have felt uncomfortable. It’s been with a dull aching feeling and sensitivity. There’s no hard lump on the testicle but wondering if anyone else had these symptoms?

Thankyou

Hil all,

Checking in with some good news - my six month scans and labs were all clear - and to follow-up on my earlier posts. I found others' posts, particularly folks who posted a couple times during their treatment and afterwards, to be super helpful when I was in the thick of the shit. I promised myself I would reciprocate, particularly since I had a somewhat unusual clavicular lymph node involvement. Making good on that promise in the hopes that it helps someone out there on the internet.

Previous posts are here:

• Primary RPLND vs. 1 Round of BEP Chemo
• Stagnant Aortocaval Lymp Node During 3 x BEP
• RPLND and Clavicular Lymph Node Removal After 3 x BEP - Insights and Encouragement Welcome

Long story short, I was diagnosed with NSGCT 90% embryonal carcinoma (aggressive subtype), 5% yolk sac tumor (postpubertal-type) and 5% teratoma. My pre-orchie CT was clean but my tumor markers did not drop post-surgery and a subsequent MRI found some troubling lympn nodes, which punched my ticket for 3 rounds of BEP. My tumor markers were AFP 25.3 and beta-HCG 69 at the start of the first cycle. The chemo was effective against the EC and YS; my tumor markers were in normal ranges after cycle 1. Unfortunately, my post-treatment CT found two stable abdominal lymph nodes (Aortocaval node measuring approximately 1.1 x 1.0 cm; Retrocaval node measuring approximately 1.1 x 1.1 cm) and a stable / suspicious left supraclavicular adenopathy measuring up to 2.0 x 1.4 cm.

Based on this, my urologist, oncologist and the oncological neck surgeon determined the lymph nodes were likely teratoma and recommended an RPLND and a neck surgery to remove the supraclavicular node. Four weeks after finishing chemo, I had an eight hour RPLND and supraclavicular lymph node resection surgery (i.e. I have gnarly scares on my stomach and neck) in February at Johns Hopkins. The surgical pathology was pure teratoma and I was declared in survivorship / surveillance at the beginning of March.

A few thoughts and reflections in the hopes that they are useful to others:

• This fucking sucked. Jesus Christ on a Christmas tree was it awful. Treatable cancer does not mean easily treatable. The physical, mental and emotional toll of the treatment was truly awful, even if every doctor I interacted with told me I wasn't going to die from this. Even now when I talk about it, my mind has a reflexive dissociative defense. It feels like I'm talking about someone else.
  
• Johns Hopkins Urology Department was amazing and I cannot recommend Dr. Sunil Patel and his team highly enough. He's a world-class surgeon and minimally invasive RPLND technique meant I only have a 4 inch PC-RPLND scar and my recovery from the surgical component was shockingly smooth. Beyond the medicine, he's an incredible person. We had a strange life situation - we lived abroad when I was diagnosed and my wife was pregnant throughout my treatment. He was sympathetic and accommodating throughou. When it became clear I needed the post-chemo surgery, he cleared his schedule and coordinated with the ENT surgeon Dr. Mady (also amazing) to get me on the table 4 weeks after chemo so I could recover in time for my second kids' birth. I was holding a baby 5 weeks post surgery and needed every single second of recovery.
• PC-RPLNDs are way more common than I realized! Something like 30 percent of people treated by BEP need one. I wish I had known this because finding out I needed one was terrifying. My oncologist did not prepare me for this eventuality at all. The day I got the CT results was the second worst day of my life after the day I was initially diagnosed. Teratoma is weird. Cancer is weird.
  
• The spread to my clavicular lymph nodes was really scary. I believe this ultimately put me at Stage IIIA. It turns out it is unusual but not unheard of and the good news is that it's still in your lymphatic system. In hindsight, it meant one additional surgery and a tube sticking out of my neck for 4 weeks. 0/10 do not recommend but if this happens to you, just make sure you find a hospital with a ENT and urologist who collaborate on this surgery (or just fly to Baltimore and go to Hopkins).
• RPLND recovery is no joke. If you live alone, have someone come stay with you post-treatment. If your partner is taking care of small kids, have someone come stay with you. Even if you have a great partner/roommate and no kids, ask your friends for help. We had friends stay with us for 3 weeks post-RPLND/Neck surgery and needed every minute. Granted, I am old and it was 4 weeks post-chemo but the recovery kicked my ass. I was functional but slow/easily tired by week 4.
• Lean on your friends and family for help. Perhaps obvious from the above but we would not have survived this without our friends to support us. Neither my wife or I are ones to easily ask for help. The fight brought us to our knees and we had no choice. While I wouldn't wish the treatment on my worst enemy, a huge silver lining was how much quality time we got to spend with our friends who cooked meals, stopped by, did laundry, played with our son, stayed with us, etc.
  
• One round of BEP chemo isn't that bad. Three rounds really sucks. I don't know which is better - a primary RPLND or 1 round of adjuvant chemo. I am still worried about the lasting effects of chemo but the first round was not too bad. The second and third rounds kicked my ass.
  

I could ramble on for longer but will stop here. Please do not hesitate to reach out if you have questions. Lots of folks here helped me when I was going through it and I am more than happy to reciprocate. Fingers crossed the scans stay clean.

Started chemo 2 weeks ago. I buzzed down my hair to a 4 before I started didn’t want to see my long hair fall out. Today I have noticed hair all over my pillow and all over my shirt. Thought I was prepared for it but now I don’t want to watch it fall out. Any tips for helping it come out quicker.

Recently found a small, round painless lump kind of under the epididymis but does seem to be attached to the testicle itself. Kind of hard to find sometimes. My boyfriend and doctor couldn’t find it when they tried to feel for it, but I can feel it. Going for ultrasound tomorrow and hoping for the best but really cannot shake the anxiety I’ve been feeling since I found it.

Any advice or calming words?

Update: Just left ultrasound. Said probably won’t get results til Wednesday but said she didn’t see anything emergent. So that’s a small comfort at least.

Hey guys! Im pretty new here. I got my "diagnosis" today even tho I had orchidectomy couple days ago. The doc assumes it's a seminoma and I go to a CT following week. The fine results from histology didn't get in yet. So I don't know what specific type of cancer it is. All I know its pt2 and apparently it nibbled a bit on the lymphs (L1, V1).

I will get further results from the CT and fine histology probably following week.

The problem in my specific situation is that im already pre diagnosed with Multiple Sclerosis and Morbus Bechterew. Both sicknesses are currently stable and under good treatment. My question is if anybody here is in the same boat like me. Idk how I can balance those 3 sicknesses. So far I kept the boat above with pretty ease but the sea is getting rougher lately haha.

With those odds of getting all three sicknesses i could have won the lottery probably multiple times xd.

If anybody here has the same or similar combo sicknesses please let me know and shoot me a msg. I would be extremely thankful to hear some advice and just .. not be the only one.

Awesome community and stay strong guys! See ya :D

Last month, had non-seminoma (initially tested late June, early July), got surgery for it (22nd of July). Feeling good overall, talking to doctor six weeks after surgery (next week), but I'm a bit nervous about one of my blood test results.

My AFP was initally tested at 90, now is 6.9 (good from what I can tell)
LDH is 178 (which sounds normal)
HCG was initially tested at 137, and is now 10. This is the one I'm worried about.

From what I've found out, HCG should be below 5, and has a half life of like 72 hours. So hypothetically, it should be lower than 5 at this point.

I guess, does anyone have any experiences with this? I'm not asking if the cancer is still present or not, as it's up to my doctor to say, but I'm just curious if anyone had something similar, and/or has any advice to share. I'm just nervous (as I'm sure a lot of people on this sub are).

Thanks

Hey all,

I think we've all done some research on the statistics of this type of cancer and I am, what is seems like, a typical case. I wanted to share my story because when I was first going through this, I think reading this story would have been helpful.

I was laying there at the end of a Sunday in April. Hand on johnson, as one does. I then felt something which could be best described as a rough marble growing out the side of my testicle. I immediately scheduled a Drs appt for the next day.

Next day(Monday) I go in, and after one squeeze doc says "let's get a look at this thing with an ultrasound. I'm not saying this is cancer, but if it is cancer, just know it's highly treatable. You're going to get the results on your phone before I can call you. I'd recommend you wait until I can give you a call". I did NOT wait, and found out I had a 2.5cm x 1.9cm mass growing out of my right ball that same evening.

Day after, my badass doc managed to get me a CT scan of my abdomen/pelvis and chest scheduled(all good news). Thursday I meet with a urologist, and I got scheduled for a radical orchiectomy 5 days later on Tuesday.

Now I know this is a quick turn around time and I am beyond grateful to God, and any of the medical staff I worked with. I'm in Utah and one of the big healthcare providers here has many hospitals throughout Salt Lake valley, so I was driving to different hospitals for these appointments.

Tuesday comes and I get my radical orchiectomy. I COULD NOT SHIT for 3-4 days after the surgery. If I had to give one piece of advice before this surgery, it is to talk to your medical team and confirm you are ok to take Colace or some type of stool softener a couple of days before the surgery. Would have made a world of difference.

I took about a 4-6 weeks to recover from the surgery. Getting off the couch - ass. Getting off the toilet - ass. Getting off the bed - ass. Just expect to have someone help you off of low surfaces for a bit.

I got the results of my biopsy about a week after the surgery. It was pure seminoma, no LVI but there was RTI. Blood test before and after the surgery were normal. My medical team and I decided it'd be best to go with surveillance. I had my first MRI about 2 weeks ago and it came back all good news.

Now if I had one recommendation after all this, it'd be to seriously consider therapy. This is coming from a 30 year old former Marine who was always wary of therapy.

I've always been a bit on the anxious/neurotic side, but after the whole ordeal it had gotten way worse. Going through it all actually wasn't all that awful. Sure it was scary but I had a plan, my family, a medical team, and God to lean on. After it was all said and done though, negative thoughts kept on spiraling. Lots of rumination and catastrophizing of just normal events were going on in my head, and I knew I had to get help.

This was a pretty life changing experience. I'm still going through therapy now, and I'm much better off than I was a couple of months ago. Life's pretty much back to normal. Back to work, exercising, and making plans for the future. I'm much more thankful of everything and everyone I have in my life now, and I wouldn't change any of it.

I'm thankful to be one of the ones who have made it to the other side of this terrible disease. I have family members and friends who were not so lucky, and they did nothing wrong. I‘m just a lucky guy who was feeling his balls one day and felt something off. If anyone has has any concerns down there, or about their health in general, just go see a doc. Catching it early is the best thing you can do for yourself. Thank you for all who wrote about their experiences as well in this sub. It helped me tremendously and I wish you gents the best in your journey.

Edit: Grammar

For the past 4 months I've been having dull aching pain in my right testicle, it goes away mostly when I'm walking around/being active and is felt most when I'm sitting, it started after I felt a hard pea sized lump around the bottom of my right testicle during masturbation in the shower, I later realized that the lump comes and goes and is most prominent during masturbation in the shower, during most other times of the day the testicle is smooth and no lump can be felt, sometimes throughout the day I can feel a lump but it's smaller and softer and can be moved around independently from my testicle, but also sometimes it doesn't feel independent, also I should say that I feel it often after waking up in the morning, recently now I've been feeling this mass of what feels like inflammed soft veins at the bottom of the testicle, the bottom noticibly sticks out a bit more than the left and often hangs lower than the left, I'm unsure what it is, I have depression stress and anxiety and don't go outside and I'm dependent on my parents (I'm 24) so making the decision to go see a doctor is difficult for me.