Post-orchiectomy relapse symptoms

[jmontana16]

Just wondering if anyone can give me an idea on post-orch. relapse symptoms. My status: 1 year since surgery on 5/05/05 (yeah, happy friggin' cinco de mayo to me) for >5cm encapsulated Stage I seminoma/left testicle. Surveillance has gone perfectly. Quarterly CT's/MRI's/Bloodwork all clean, etc. Haven't been white knucklin' it at all, and only just starting to have a few concerns. I just want to be smart about things.

I'm 35 w/ 4-year and 6-month old daughters and wife of 13 years. About two weeks ago, the second friend of mine this year (both my age, both with two young children) died of cancer. About two weeks ago (and I think it was before , but hell, who knows?) I started getting a very mild, dull ache in what used to be LEFTY. Of course, he's gone, so I start manhandling my orch. scar every day to compare it to the other side (where my not being a doctor in any way shape or form really makes this productive, yeah I know) and low and behold, I'm still mildly getting the dull ache from time to time.

Now, rationale guy who's had no problem w/surveillance from the start knows I'm probably manifesting the pain because I'm thinking about my friend (who died after a breast cancer relapse). Brain thinking about relapse, death = phantom pain. Also, I'm guessing I've broken up a helluva lot of scar tissue in the area just by fiddling with it so much which is probably why it's bothering me slightly. Not even bothering, I'm just aware of it...

Other guy, paranoia guy who loves his kids and wife more than life itself, guy who's gettin' tired of friendshisagewithtwokids dying this year, guy who's starting to think that he hasn't been eating healthy enough/sleeping enough/shouldn't be chewing a little Copenhagen every now and again, guy who already has depression (I have OCD ) is wondering:

#1) WHAT ARE POST-ORCH. SYMPTOMS?
#2) OPINIONS ON WAITING UNTIL LATE JUNE FOR MY NEXT SURVEILLANCE APPOINTMENT (and I don't know if its the last w/a CT or MRI or the 1st w/o)

I think I'm fine, but no one can understand like you guys and there is almost no info I can fine on POST-orchiectomy relapse symptoms or on how they would or do/don't differ from initial onset symptoms. Any comments, thoughts, opinions, rants, etc.; are welcome.

Thanks everyone!

***NOTE TO MANY IF NOT MOST***
Finding this website tonight has allowed me to regain a bit of valued perspective that I have been slowly losing these past few weeks (and perhaps months). Obviously, cancer in any way/shape/form is something very personal and individual and not something (in my opinion anyway) to "weight." That being said, two things. First, I am very aware how fortunate I was to find my cancer so early and have it be a very small stage I seminoma. When I get 30 replys that all read,

"Hey Nancy, get your hands out of your pants and go see your Doc at the end of June..."

...I will have earned those. That's how I feel. But reading so many of your posts tonight... I am humbled, comforted, and overwhelmed. Your grace, courage, spirit, humor, compassion and dignity jump off the screen toward me, and I know that whatever comes to pass, none of us are alone in all of this. Take care.

P.S. Anyone know where the "OFF" button in my brain is?

[Scott]

I'm glad you found our forum and hope you stick around. I can tell you'll add a lot!

I do think that you're fine and that you should stick with your normal surveillance schedule, but that you should feel free to give your oncologist a call anyway.

Oh, and do you really prefer to go by "Nancy"?

[Fish]

Hi:

Although scar tissue serves a very useful purpose, it doesn't always behave as well as the original tissue. I periodically get pain along my scar lines. I would also be surprised if a relapse caused symptoms in the scar area. But like Scott said, if it will give you some peace of mind, give your doctor a call and tell him your symptoms.

Best wishes

[TSX]

Is your dull ache just in the scar tissue in the scar (ie, surgeon's incision site) itself? If so, I wouldn't worry about it. I have a scar on my leg from something that happened in 1983 (I'm a year older than you) and it still bothers me from time to time. Another thought in your case is that it's taken the nerves damaged in your I/O this long to start recovering and the new sensations you're feeling are from nerve connections getting re-established.

On the other hand, if it will help prevent anxiety and your insurance covers it, why not call your oncologist and move up the appointment?

One thing to keep in mind is that if it is a pure seminoma relapse, a month's growth is not going to amount to much. I also had pure seminoma, and my oncologists gave me the option to delay treatment by three months to better fit my work schedule, saying that such a delay would not affect the outcome at all.

-TSX

[jmontana16]

Thanks guys...

I really appreciate the quick responses guys...

Scott, if being a jackass and a smartass adds to this website, then YES , I definitely will be an asset! Good luck with your event in Philly. I was signed up to ride the 100-mile Ride for the Roses in Austin last October (at least I think it was October) but couldn't find time away from work. I am competing in the Vineman Ironman event in Guernville, CA, August 12. The one positive to TC: Riding the bike is slightly more comfortable for me now that I have "consolidated" things down in my sack.

Fish, thanks for the post. I like you already as my last name is S-T-U-R-G-E-O-N. Yep, nothin' sexier than havin' one nut and being named after a horribly ugly prehistoric lookin' fish...

TSX, the pain (and when I say pain that is perhaps too strong a word) or shall we say the slightly dull ache, it's kinda traveling around a bit, not necessarily confined to the scar area. However, my anxiety level isn't too bad (you guys and this site has helped more than you know) and I'm going wait until my scheduled appointment. Actually, it is nice to know that even if I would have a relapse (and I'm not assuming I do), that perhaps I will have the option of waiting to run my triathlon on August 12th before having to start any treatment.

Again, thanks to all of you (including those of you yet to respond to this thread) and I look forward to further correspondence!

[Fish]

I agree with you about being named after an ugly fish, Trout are not very attractive either.

I love your part of CA, I lived in Sacramento for 6 months in 1984, so I got to visit some great places in northern CA. I'm trying to find time to get back out there as my wife has never been to the northern CA coastline.

I hope all goes well with your June appointment.

[jmontana16]

Hey Fish,

When you get a chance and have a little time to write, I'm curious to know about the hormone replacement. How's it work, how's it going, what changes have you felt physically/emotionally since the 2nd orch., etc...

I've been an athlete all my life -- through college, then a recon marine, and now doing triathlons. I'm kind of into the whole sports nutrition thing as well and am really interested in a first person account of what hormone replacement entails and is like.

Not a pressing concern at all, I'd just be interested to hear anything you have time and would want to share.

Thanks!

P.S. I grew up in the East Bay and just moved my family up here this month from Los Angeles. I liked LA a lot, but having a house up in this area is great!

[Fish]

Hi:

Hormone replacement for me has been a series of ups and downs. However, it seem to vary quite a bit from person to person. Some of the guys in the forum have had no problems at all. When you have both testicles, the hypothalamus and the pituitary gland work together to regulate the amount of testosterone that you produce and that amount varies through feedback mechanisms based on the bodies perceived need. Of course when you do hormone replacement, you get the same dose, usually once a day, and basically tell you body to make do with that. So my personal opinion is that sometimes I would have too much testosterone and sometimes not enough. I've definitely had more mood swings than prior to my second I/O, I've also had hot flashes and am more prone to bouts of anxiety and depression. Of course some of that is related to the second cancer diagnosis - Most cancer patients experience a whole range of emotions, as I'm sure you know first hand. But I do think my hormonal issue somewhat magnify the feelings.

As far as using the hormone, its really simple, open an tube and rub the gel onto a clean, dry shoulder, wash hand well with soap and water - then for about 4 hours don't get the area wet or let anyone touch that area. Women and children should never handle the opened tubes because some hormone will remain in/on them.

Unfortunately I did not have a baseline level taken before either orchiectomy, so I have no idea what my normal range was. And the normal range is fairly broad.

Generally, one testicle should be able to produce sufficient hormone, but some men do have a decrease in production. You might want to consider asking you doctor for a testosterone level check, especially since your very active, your body might need a level closer to the top of the range. There are some guys on the forum who are using hormone replacement therapy (HRT) who still have one testicle.

If you'd like a variety of opinions, post a note in the "Testosterone Challenges" forum, I'll bet you'll get some helpful insight.

I hope you didn't fall asleep reading this.
Let us know how your June appt goes.

Fish