Getting likely diagnosis soon

[sfdad]

Hello everyone,

This Sunday I found a hard lump on my right testicle. Yesterday I got an exam and ultrasound. Based on the results, the urologist recommended an orchiectomy, and I've scheduled that for Wednesday. Four days from discovery to orchiectomy is prompt, but I really wish I'd discovered it sooner. Here's why I think I could have done so.

- I'm a computer programmer, and back pain is unfortunately commonplace among us hackers. Last fall, I started being uncomfortable in a different way, preferring to slouch a bit more so that my sack wasn't sitting on the chair. I didn't think anything of it at the time.
- March 16 I sneezed and injured my lower back. I've done this a few times before, all starting after injuring my back in college while lifting a mattress. It usually takes a few days to heal. This time, though, after a week or so the pain seemed to migrate around to my groin rather than just going away. Again, I figured I was just sitting wrong at my desk.
- By April the pain improved, but the symptom I now know as "heaviness" was still there and getting quite noticeable.
- May 3 I got abdominal cramps. I took some anti-gas medication and it slowly went away, but I was surprised because I've never had a problem with gas.

That pretty much brings us to now. This last weekend I finally typed "groin pain" into Google and found this site, among others, all loudly recommending the self-examination that quickly led me to where I am now. I feel really dumb for not catching this as many as 9 months ago. I technically don't have a TC diagnosis yet, but at this point I'm in the 95%-likely group, and I'm accepting that I have cancer. I am of course worried what else they'll find tomorrow when they pull out my testicle, and further what the pathology report after surgery will say.

Things that feel unfavorable:

- I can trace symptoms back at least nine months, now that I look back and try to remember the first time I experienced the "heaviness."
- I have been feeling general groin pain, which to me seems like it must mean that the cancer is advanced -- how else could it be making my abdomen hurt if it's still confined to my testicle?
- The shame I feel about not discovering it sooner is not a helpful emotion. I need to exterminate that attitude if I'm going to approach this experience from a position of strength.
- I live in the United States and am self-employed. I expect I'll lose my health insurance after this and join the large ranks of American uninsurables.
- In the last 48 hours I feel like I've started experiencing every possible symptom I've read about on the web (whether related to TC or not): headache, bit of dribbling urine after pee, constipation, fatigue.... Of course, I felt the same things throughout grad school, so I'm hoping it's just psychosomatic stress.

Things in my favor:

- The two testicles are still the same size. The bump feels more like a thin shell around the bottom of the testicle, more a texture difference than a real bulge. I hope this means it isn't too far along.
- Now (Tuesday morning) that I've managed to get a good night's sleep, I feel healthy again.
- Now that I understand that the discomfort is probably originating from my genital area, my body seems to be not interpreting my pain as groin or back pain anymore. I'm hoping this is some kind of psychosomatic magic going on that bodes well (i.e., my discomfort is limited to an area they'll be removing from my body tomorrow).
- No history of cancer of any kind in either side of my family. Many of us have had benign growths removed, but no cancer.
- I'm 39 and very fit. I know can withstand chemo.
- So far I am happy with my Kaiser treatment. They're taking it seriously and not running me around in circles.
- My wife is due to give birth to our third child today (Tuesday). She's not in labor yet but could start any day now. I can't begin to explain how determined I am to survive to meet my grandchildren in 30 years. That has to count for something.
- I feel that my family is complete. I would be OK if after this I couldn't father any more children. I really feel for you guys who are still thinking about building your families, and I hope you won't begrudge my being relieved that this happened to me after that phase in life.

I wish I could say I'm happy to meet you all. But it's great to see such a supportive community, and I thank you in advance for letting me participate.

[RyanSeattle]

More than likely its testicular cancer but the good news is you will survive. Waiting for your pathology report is stressful. Everyone here has been through it. Also many people often think they are in more advanced stages but hopefully its just anxiety. You may wqant to research a place of expertise in testicular cancer. Good luck!

[Paul54]

Sorry you had to find us and that you are going through this. But welcome, you are among friends.

I could have written about 90% of what you wrote about 20 months ago. The long-term back pain, irregularity, heaviness, delayed "eureka" moment, anxiety, the "what-if's". I really did have the aches and pains, but it turned out that my cancer had not spread. The aches went away. This is not uncommon, and no one knows why it happens. Don't beat yourself up on the delay. That happens all the time with this bugger.

Hopefully you don't have TC, but if you do, the chances are still very high that it has not spread and treatment options will include diligent surveillance only, no chemo, no radiation. I've been on the surveillance-only route the entire time. Your pathology, CT scans and X-ray will paint the rest of the picture.

Having only one T does not rule out future children. Lots of guys here fathered kids after TC. Don't give up on that. Personally, I was already done contributing to the global over-supply of teenage wiseguys.

Take one day at a time. Focus on rest and recovery. Let us know how you do, and fire away with questions.

Best wishes for the I/O. I pray everything goes well with your wife and new arrival. Pictures are required!

[kfo9494]

sfdad,
Glad to hear that you seemed to have caught it early enough. Here is hoping that no chemo is required.
>
An orchiectomy is really not too bad. With you being in good shape, you should bounce back from this within a week. When I had lefty removed, I went to Spain the next week. Good Luck - Any questions feel free to ask. I have found that someone on this board has experienced nearly all levels of personal concern about their recovery and fear of TC.

[sfdad]

Everyone, thanks for the kind and positive thoughts. Like the rest of you, I think admission to this club is overpriced. But now that I'm here, I'll make the most of my membership, and again I thank you for welcoming me.

I just got off the phone with my roommate from grad school, who unfortunately went through the same thing in 2002. (Maybe it was something in the beer we drank in school?) He ended up going through RPLND and chemotherapy, which obviously sucked, but he's been all clear since then. The good news, of course, is that he's here seven years later to talk with me about it and brighten up my outlook with his survivor's perspective on things. His advice is to focus on the task at hand (getting through the surgery), and then feeling free to get second/third opinions on the biopsy.

I just ate my last meal before starting the pre-surgery fast. There's just enough time to squeeze in a beer with my dad. If I'm not back sooner, I'll post an update after surgery (when the tense waiting period begins).

[Aegean]

His advice is to focus on the task at hand (getting through the surgery), and then feeling free to get second/third opinions on the biops

He is bang-on! The surgery right now is your main thing. Really not as scary as it sounds.

I just ate my last meal before starting the pre-surgery fast.

Hope it wasn't the last bag of frozen peas!!! They will be your best friend for the next week or so.

Keep us updated, and get the path up as soon as possible. You'll pull through just fine.

[Fed]

I love the way you are going through this: logically and with simplicity. Given that you are on top of your game, odds are you will fare well. Best of luck with the surgery tomorrow.

[MRMRSU]

Happy to welcome you, despite the crummy circumstances. I always say, "Don't look back, just look forward" - you've got so much to focus and channel your energies on. For starters, congrats on the little muffin about to pop out of the oven

Best wishes to you on your orchiectomy. It will be a quick procedure, and if you haven't read through some of the other threads on orchies, frozen bags of peas applied to the incision site and the scrotum are highly recommended. No heavy lifting, try to wean off the pain meds as soon as you can tolerate it (will help you avoid constipation). And most importantly, know that you will be taking your first step towards being rid of this. Post your pathology report when you get it...and make sure to ask for a copy for yourself. Good luck!

[Kiwi]

Hey mate,

A big day Wednesday, this time will tend to stay with you wit clear memories. Any way the op is not really that that dramatic apart from the loss of a treasured body part.

The next stage will be in a few days when the pathology make up is determine. Statistically with your age this leans towards a seminoma but you will have to wait to see.

After this you will need to consider treatment options. Take one day at a time but read research and be informed for the talks with the docs, check-in here with your questions too.

Regards

Kiwi

[dadmo]

Good luck today. You'll be up and around before you know it.

[sfdad]

I'm back home and the grilled cheese sandwich I just ate tasted better than anything I've ever eaten! And hey, I even lost weight during surgery! Oh, wait, the difference exactly equals the weight of one adult male testicle. Never mind.

Post-op, my doc said that it did look like cancer (no surprise there), and he estimated it looked like 6-12 months of growth. He considered that early stage. That feels like a long time, but like MRMRSU said, don't focus on the past.

I'll follow Aegean's advice and ask for a copy of the report, and I'll post it when I get it. Thanks again everyone for the good vibes!

[Aegean]

Welcome back home. Glad it went well. Enjoy the grilled cheese, avoid the pain meds (try something over the counter first, unless it becomes too unbearable), and pack on those frozen peas!!

[MRMRSU]

Glad you're back in the comforts of home. Rest up and enjoy those grilled cheese sandwiches...just know that when you've recovered from your orchiectomy you'll have to pay a price to burn off all that cheese

[sfdad]

Got my pathology report today. Here are the important excerpts:

• Extensive hemorrhage and necrosis in embryonal carcinoma
• Max. tumor dimension 2.5cm
• Tumor confined within tunica albuginea
• No lymphovascular invasion identified
• No epididymal invasion identified
• Surgical margins are free of tumor on sections examined
• Sertoli only cell change in residual testicular parenchyma
• No recognizable areas of yolk sac tumor or choriocarcinoma are identified on sections examined

... and the blood tests, all pre-surgery:

• HCG <2 (normal <5 mlU/mL)
• Alpha 1 Fetoprotein 2.7 (normal 0.0 - 15.0 ng/mL)

My urologist characterized this information as good news, but my CT scan within the next two weeks will provide a fuller story. At this point, my urologist believes the likely options are surveillance or RPLND. I'm a bit surprised by the mention of RPLND, given that all indications are that my cancer is/was at a very early stage. It's possible that I misunderstood the conversation.

So here's my layman's summary:

• Seems like we caught it early.
• The tumor was nonseminoma.
• There's no evidence (via blood or pathology) that it spread outside the testicle.
• The CT scan will confirm that there aren't any visible masses in the rest of my chest/abdomen, and we'll discuss treatment options once the scan results come in.

If any of you have further color commentary or corrections to anything I've said, I'd appreciate hearing it!

[Fed]

The report places you at stage I-A, which is great news. The options your urologist presented are accurate. Absent any lymphovascular invasion with a clean CT scan, there's a 70% chance the I/O alone has cured you; hence, surveillance is a good choice. The RPLND is also a valid option for the purposes of further staging, but keep in mind that embryonal carcinoma is adept at traveling through the bloodstream and landing beyond the retroperitoneal lymph nodes. All in all, though, it looks like you caught this early.

[sfdad]

The RPLND is also a valid option for the purposes of further staging, but keep in mind that embryonal carcinoma is adept at traveling through the bloodstream and landing beyond the retroperitoneal lymph nodes.

Fed,

I think I'm understanding you, but let me try restating it in my own words.

• If CT scan is negative, then every test currently available (blood, CT, post-surgery pathology, physical examination) is consistent with my being all clear, so it's reasonable to choose close surveillance in that case.
• If the CT scan is positive, then of course those results will help determine the next course of action.
• RPLND might address issues that the CT scan finds in lymph nodes, but because EC likes to travel, that's not a sure-fire cure, either.
• Thus, some form of chemotherapy would be likely if anything comes up from the CT scan.

If I have these concepts correct, then I'm wondering why someone in my situation would choose such an invasive procedure as RPLND. It seems that I'd elect chemo regardless of whether I also had RPLND, and (this is my possibly incorrect assumption) chemo might address the same problems that RPLND would have.

I'm speculating that there must be some time component to RPLND (for example, perhaps you need to do it quickly, before finding out whether chemo would have been effective), or that RPLND has some kind of unique power that chemo doesn't.

Are these questions making any sense?

[RyanSeattle]

I am personally in the same boat as you. I had or have 100% EC with no vascular invasion and no markers. My CT originally came back clear but after a second opinion from a respected testicular oncologist their may be a enlarged lymph node in the landing zone. so now I will have a second ct scan 6 weeks from the original which is this wednesday. if the lmph node grew then I will do 3xBEP and will be cured basically 100% sure according to Dr. Einhorn. If it comes back that it hasen't grown then I will have three options. Surveillance, adjuvent chemo, or RPLND. I will not go with a RPLND because I believe it will greatly increase my chance of having to do both. But other people see this as an option to possibly avoid chemo. Its all personal choice and its really like flipping a coin. All options lead to a cure.

[fuse929]

I don't know if I can answer all of those questions, but I may be able to give a bit of insight.

RPLND isn't just for fixing problems (such as things that appear on a CT), it can also be used as a preventative measure to ensure that cancer has not spread to the lymph nodes as of the time of the RPLND. This gives people with non-seminoma even more data as to the staging of their cancer. As Fed said though, EC is a unique type of non-seminoma in that it has the potential of skipping the lymph nodes and going straight towards other parts of the body.

One thing to consider is that if you eventually need chemo, having the RPLND before chemo will most likely allow you to stay fertile. If the need arises to have an RPLND after chemo, the chance of losing fertility is significantly increased.

It is a very difficult decision, but also a personal one. I personally would not have an RPLND with a stage 1-A EC diagnosis, but many others would make great arguments for having one. Only you and your doctors can decide what will let you sleep at night.

Bobby

[sfdad]

My CT originally came back clear but after a second opinion from a respected testicular oncologist their may be a enlarged lymph node in the landing zone. so now I will have a second ct scan 6 weeks from the original which is this wednesday.

Ryan,

Good for you to seek a second opinion even after a good result. I'm sure it's human nature to second-guess bad news but hang one's hat on good news. You'll be a good role model to remind me to stay vigilant even if the doctors have happy things to report to me.

All options lead to a cure.

Thank you for that inspirational statement.

[sfdad]

I pray everything goes well with your wife and new arrival. Pictures are required!

Paul,

Here you go, fresh off the memory card! 8 pounds, 8 ounces, born May 18. Happy and healthy. Mom's doing great, too!

[jonwil]

Congrats on the new arrival. Membersip of this club is expensive, but for most of us it is a one off payment and we can look forward to many years of membership
Best wishes with your recovery, Jon

[Scott]

Happy and healthy.

Perfect! My heartiest congratulations to you and your wife!

Wishing you a clean CT scan coming up as cause for further celebration. With a new baby in the house, you should have plenty to keep you distracted between now and then.

[kfo9494]

I know what I am going to say may sound silly to people that have not gone through testical tumors or I/O but--

That sounds like good news!
Remember to keep a check. Also if you feel that something is not right then make an appointment to see the doc. You know you body better than any doc.

[mahalomom]

8 pounds, 8 ounces, born May 18. Happy and healthy. Mom's doing great, too!

Congratulations!!! 8 lbs of perfection!!!

~Mary Ann

[MRMRSU]

So cute...all the more reason to get yourself better. Congratulations!

Wishing you much luck, patience and peace as you make your way to deciding on your next step for treatment.

[sfdad]

...my CT scan within the next two weeks will provide a fuller story.

My urologist is on vacation today, but I was able to reach the office and get the results from last Thursday's CT scan: negative for areas scanned (chest, abdomen, pelvis). Good news. I'll be talking to my doctor when he returns from vacation tomorrow.

To recap:

• Nonseminoma, EC
• Path report says confined to removed tumor, no evidence of LVI
• CT scan negative
• Blood work normal

Although this is the first truly good news I've gotten on the health front since this experience began, I'm still reeling from my hypersensitivity to every little itch and pain I feel. Not physical hypersensitivity, but pure paranoia. Is that stitch in my chest caused by yesterday's roughhousing when I was lobbing my 40-pound son onto a pile of pillows on the couch, or is it something serious that the radiologist missed?

How do I internalize my newfound realization of the obvious truth that I'm a mortal human who, like everyone else on Earth, will someday die of something? I think the answer is "you get used to it," but at this moment, well, I'm not used to it yet.

[Smartie]

Hiya.

It's great news about your clear scans.

It's important to realise, I think, that your hypersensitive reaction is normal. This is a normal and reasonable response to getting the news that you have cancer.

Getting a cancer diagnosis is not something that anyone expects to get - especially when we're relatively young. As you said, even though we all know we're mortal, the fact is that we really feel invincible when we're young. Even though we know we will die one day, on a more basic and instinctive level we feel that we'll live forever.

Getting the diagnosis changes all that, of course. You're right, you do get used to it, and you're right that it takes time. In the meantime, it's worth remembering that hypersensitivity is the mind's way of being acutely alert to any signs of a further danger. I guess it is the early warning system that we used before we had CT scans and tumor marker tests to rely on.

So you've got a clean scan, normal bloods and no LVI - so there's plenty to be optimistic about. Your urologist will probably hand your care to an oncologist now. Any thoughts about whether you'll chose surveillance or chemo (or RPLND)?

[sfdad]

So you've got a clean scan, normal bloods and no LVI - so there's plenty to be optimistic about. Your urologist will probably hand your care to an oncologist now. Any thoughts about whether you'll chose surveillance or chemo (or RPLND)?

I figured it was time to switch forum topics from "just diagnosed" to "after the orchiectomy," so I started a new thread answering this question here. Short answer: surveillance!