Diagnosed for TC 4/05 -- Question and quick story

[tigernumbe]

Hello, I was diagnosed with TC at the end of last April (05) at 26 years old. I believe I caught it early as I was pretty lucky in that my testicle began hemoraging (sp?), thus growing to the size of an orange. It was pretty ridiculous. I knew something was wrong down there and noticed it for about a month or so. It actually took my girlfriend to get my butt into the doctor (thank god!). I hadn't seen her in over a month and well.. you know, she noticed something had changed. She didn't think cancer AT ALL, but she just said she would be very upset if I didn't get it checked immediately. It crossed my mind as a possibility but I didn't give it much thought. Obviously I was wrong. I had the orch in April and have decided to do "surveillance" at Indiana University instead of doing the RPLND. Thus far, my blood counts remain low and scans fine, so my decision has paid off. I'm beginning to feel it's gone.

Sorry for the long story but I've got two questions that I'd appreciate if anybody could help.

1. What percent of guys get a prosthetic testicle? My girlfriend really doesn't care at all (at least that's what she says!). I really don't care that much either. The day before my surgery I thought I would want a prosthetic one for sure -- but afterwards, my desire for that really waned. I just wanted to know if most people did that or not. I think if I was single, I'd be more inclined to think about it as it seems like it would be a bit weird for a girl to just "discover" this. Or do you tell them?

2. In April it will be 12 months for me. Obviously that's a big date in my case. I'm really getting to the point where I "feel" it's gone. However, have any of you or do you know anyone that has had it come back after 8 months of "clean" suveillance tests.

Well, thanks in advance for any feedback. And if you any of you have a loved one about to go through it OR if you are going through it -- just keep a positive attitude. In many ways and in a weird way, this almost seems like a positive experience for me. The day I found out about it -- yeah, it was a bit shocking. I had the surgery the very next morning. Within ONE WEEK I was at a concert of my favorite band!! Of course, I took it easy but it was a great feeling to be out and about so quickly. Like they say, "attitude is everything".

[Scott]

The odds of recurrence for non-seminoma are much lower after the first year, but it's extremely important to stick with the surveillance routine. There are several of us in the forums who had a recurrence while on surveillance, as well as many others who have not. With luck, you'll be in that second group!

If you search for the word "prosthetic," you'll turn up some past discussions with points for and against. I'm not sure what the percentages are.

[huckchef]

i hate to say it... but i don't miss mine at all! i am married and in different situation as you but to me it would seem uncomfortable. you can always look at it as having something to brag about....an old "war wound" so to speak! best of luck!

[mikeygti]

First and foremost,welcome to the forum ! No I do not miss "righty".....more breathing room for "lefty' !

Secondly, DO stick to your surveillance..I'm living proof of that point having had a recurrence 11 months into surveillance for a non-seminoma.

Best Wishes

[tigernumbe]

[QUOTE=mikeygti]

The odds of recurrence for non-seminoma are much lower after the first year, but it's extremely important to stick with the surveillance routine. There are several of us in the forums who had a recurrence while on surveillance, as well as many others who have not. With luck, you'll be in that second group!

First and foremost,welcome to the forum ! No I do not miss "righty".....more breathing room for "lefty' !

Secondly, DO stick to your surveillance..I'm living proof of that point having had a recurrence 11 months into surveillance for a non-seminoma.

Best Wishes

mikey, thanks for response. As for "righty" and "lefty" --- I really could careless either. Like I said before, if I were single it may or may not matter to me.. who knows.

As for your reocurrence. I would expect, like me, that you started feeling like you were out of the woods after awhile. I bet that was a little shocking to you as I'm sure it would be for me if it comes back. Did you then do chemo right after hearing of reoccurence. I'm also non-seminoma.

[mikeygti]

As for your reocurrence. I would expect, like me, that you started feeling like you were out of the woods after awhile. I bet that was a little shocking to you as I'm sure it would be for me if it comes back. Did you then do chemo right after hearing of reoccurence. I'm also non-seminoma.

tigernumbe,

At no time during surviellance did I feel "out of the woods",knowing that with non-seminoma,80 % of reoccurences happen within the first year. Mine was about 10 months,and I was being administered chemo aprox 2 weeks after my enlarged node was discovered on a ct scan.

Best Wishes

[LindaM]

My son danny is at the 9 month mark and so far so good, but it's nerve racking to say the least. I don't know when I'll feel that he is totally out of the woods. If you don't mind , I'd like to ask you to clarify something . I've been following and reading these posts for 9 months gathering up all the info and advice. My question is , didn't you actually show signs of possible mets much sooner than 11 months ( slightly elevated afp marker and some inconclusive cat scans in march or april 05). The reason that I ask is that Danny's doctor Sheinfeld at sloan says reoccurrence usually happens 6-8 months after i/o. Not that it matters but wouldn't you say that you're reoccurrence was 4-6 months. I'm sorry for the ridiculous question but I guess I just don't like to hear about surprise late reoccurrences given the situation my son's in. Those stories make me jump out of my skin. I'm so sorry that you had the reoccurrence in the first place. Could you please tell me how many months after your i/o did your doctors have a suspicion that something might not be right.

[mikeygti]

sorry that you had the reoccurrence in the first place. Could you please tell me how many months after your i/o did your doctors have a suspicion that something might not be right.[/QUOTE]

LindaM

I'm asuming this question is pointed at me........ I had a slightly elevated AFP pretty much from day 1 post I/O, as well as some suspicious CT scans showing some nodes up tp 1 cm aprox 4 months post I/O. I was certainly worried,but at that time Onc Doc didn't feel that treatment was warranted.
We kept a close eye on the next test results,and pulled out all the stops with chemo in Nov when a node had enlarged to 2.2cm. This "wait and see" approach is hard on the nerves,but a luxury afforded by the high cure rate of chemo. And believe me,chemo is NOT something you want unless 100 % warranted

Best Wishes

[Jens]

This "wait and see" approach is hard on the nerves,but a luxury afforded by the high cure rate of chemo. And believe me,chemo is NOT something you want unless 100 % warranted

Absolutely right Mikey! Couldn't have said it better.
Luckily my onco feels the same way. I had biopsies done to justify the chemo (I know I've mentioned this before.)
I'm not sure how well I would have handled surveillence...

best wishes
Jens

[LindaM]

Thanks Mikey for the reply , I understand completely , and of course anyone would want to be sure chemo was absolutely necessary before beginning treatment. I'm sitting by the phone today waiting for yesterday's bloodwork & x-ray reports. Just curious, has anyone on surveillance banked sperm just in case ???? Anyone have any info on facilities in nyc or nj.

[tigernumbe]

Thanks Mikey for the reply , I understand completely , and of course anyone would want to be sure chemo was absolutely necessary before beginning treatment. I'm sitting by the phone today waiting for yesterday's bloodwork & x-ray reports. Just curious, has anyone on surveillance banked sperm just in case ???? Anyone have any info on facilities in nyc or nj.

I did it. I live in St Louis, thus banked at Washington University. You have to pay something like $230 to get a consultation and then somewhere between $100-$200 for them to keep it -- obviously if it's proven that it's worth keeping. Luckily mine was. I was pretty nervous about getting those results back as I feared I may not be able to have children since I'd heard fertility is naturally lower in people with TC or in people that will get it.

[Jens]

I'd heard fertility is naturally lower in people with TC or in people that will get it.

To the best of my knowledge, that's not a proven fact. But banking is still a wise decision, just to be on the safe side.

Best wishes
Jens

[huckchef]

my case was a little different but i banked with a local fertility specialist and they set me up to have it stored at california cryobank in LA. They handled all the set up (except payment) and shipped my samples to them to store. the only akward thing was being handed a plastic cup by a lab tech and several other women and asked to "fill it up". i couldnt help but smile when i came back and handed them the sample knowing they knew what i had been doing!!! pretty akward but it was professionally handled!! when we started IVF all i did was call them and they shipped what i needed to my wifes fertility doc. pretty simple! best of luck!

[carpla]

I'd heard that fertility is naturally lower in people with TC or in people that will get it.

Well, this may or may not be true, but my husband and I have 5 children: 1 before the first go-round of TC, and the rest after!

[Scott]

...and my wife and I have four children, including twins -- all born well before I had cancer.