The 2% Club

[Jim cg721]

I got the bad news today. After having my first orchiectomy in 2010, it is time for round two on Thursday. My doctor said that only 2% get TC cancer again. I must be lucky.

I just wanted to say thanks for all of the informative posts. I've spent a lot of time reading great insight on this site. I'm just hoping I don't have to go through another RPLND. That was the worst.

[Paul54]

Jim,
I'm very sorry to hear this. That completely sucks. I hope you continue getting the info and support you need. And of course hope and pray the the I/O will be the last treatment you need.
Paul

[DoubleZero]

Hi Jim,

Welcome(?!) aboard! As I am sure you have already seen, there are a few of us around that have been "lucky enough" to have TC x 2. Each (as with the rest of the TC community) has his own story and own challenges to overcome. Hopefully you've read enough (here) to find out that life can, and does, go on even when you've "nothing left" down there...

I am sure you will, but ask any questions you want. I am pretty sure most of us will have been through/asked those questions ourselves before.

To start with, a simple question: have you started TRT yet, and if so, what are you on?

Take care, DZ

[doublecomplex]

Hey dude... I lost my last ball in late september this year. My first in early june of this year. I know how you feel and i was very scared. My post is under yours. Other than some thrombosed vein complications i feel better than i have in a long time. I use androgel and it has been working great! I am lifting weights again, and hope to get back into jiu jitsu again soon. You will be just fine. I am telling you like everyone here told me. Things are gonna be good.

[Rush67]

I'm part of that club as well. I'm still trying to figure out why.

[Jim cg721]

Thanks for the replies. The surgery went great yesterday.

DoubleZero:
I have not started TRT yet. When should i start? If there is a delay, what symptoms will i start to see? and when will i start to see those symptoms?
I'm sure everyone is different, but thought i would
Also, as a side note, i did call my doc and got these tests: (suggested from http://tcrc.acor.org/tc2_test-check.html)
Serum Testosterone
LH
FSH
SHBG
Prolactin

I'm hoping that might help me find my old self.

doublecomplex:
I've heard androgel works great. I like the idea of daily consistent levels as opposed to a peak then slow decrease that you get with shots.
I hope to hit the weights again soon as well.

Rush67:
as soon as you figure out why we get to be in this club, please let me know!
I don't have my path yet, but chemo was mentioned as a possibility. I may be asking you how it went for you.

[DoubleZero]

Hi Jim,
The answer to when should I start is ASAP. You won't be making any T yourself now, so you need to get a replacement. I can't (thankfully) explain in detail the issues of low/no-T because I have never suffered them (I started on Testogel the day after my second IO). But there are issues in terms of (severe) tiredness, hot flashes, mental capability, depression, erectile disfunction... (I won't go on - but you get my drift).

The quickest/easiest way to start is with topical gels - most(?!) tend to start that direction and then it's a life style issue of whether to stick with gels (I have) or move onto injections. There are pros and cons to both directions. Again I can only go from experience (3.5+ years on gels) and say that they work for me - I am as active now (albeit older and somewhat constrained by my job) as I was pre-diagnosis. I also swim 4 times a week and topical gel application doesn't get in the way of that side of my life style (I feel no different now to when I had my ow two boys, almost 5 years ago). I am also the same weight/muscle mass as I had when I was "younger" and my sex life (you didn't ask, but I'll say anyway) is just fine! So being "double zero" isn't an impediment to having a good, healthy and enjoyable life - but you do need a little TRT help!

I hope you get that part of your life sorted as soon as possible.

Take care, DZ.

[roybatty]

Welcome.

I always hated hearing about statistics and prognosis from doctors - "well you its rare to get it the first time, and even rarer the second time" "I don't have any patients with 2x" or my favorite "well this is very curable so if you have to have a cancer this ones not too bad".....

My first one was over 20 years ago. I will say that things have improved significantly since then - for one the implants now or days are much more realistic and comfortable, MRI's are available over CT''s, and the range of TRT options and knowledge is impressive from back then.

You will find what works for you with TRT - gels or shots or even pellets. As I always suggest - I think you should check Total T, Free T, and Estradiol (E2) from time to time. Also that you should carefully consider what levels work best for you and your body, as many docs will be happy to keep you on the low side.

[No nuts]

New to the forum

I am new to the forum. Another lucky 2xer. First time I lost righty 2005 seminoma 1.5cm did radiation therapy as a precaution. I guess that was worthless. diaggnosed again feb of 2013 around the same size. It was actually crazy I didn't feel this one. i thought I was in the clear but I was getting yearly ultrasounds and they found a mass. Almost 7 yrs to the day. Ended up being the same size got it taken out 3 days before my 35th birthday what a way to celebrate. I did one heavy dose of chemo as a precaution this time. Felt like **** for over a week but was fine after that. Started doing the shots but they give you a huge boost right away and wore off quickly. They changed who I was. I now do the pellet implants and they work very well for me. I recommend getting your t measured often though. I was told they last 6 months. I went in at 5 to get my levels checked. I was at 13 not good. Just got more implants put in two days ago 12 pellets. Just waiting for them to kick in. Great to be alive! Anybody wants to ask questions or vent or chat just let me know.

I always hated hearing about statistics and prognosis from doctors - "well you its rare to get it the first time, and even rarer the second time" "I don't have any patients with 2x" or my favorite "well this is very curable so if you have to have a cancer this ones not too bad".....

My first one was over 20 years ago. I will say that things have improved significantly since then - for one the implants now or days are much more realistic and comfortable, MRI's are available over CT''s, and the range of TRT options and knowledge is impressive from back then.

You will find what works for you with TRT - gels or shots or even pellets. As I always suggest - I think you should check Total T, Free T, and Estradiol (E2) from time to time. Also that you should carefully consider what levels work best for you and your body, as many docs will be happy to keep you on the low side.[/QUOTE]

[No nuts]

Sorry the last post i rushed through I was trying to hurry. I had to go pick up the kids. My oncologist told me it is less than one percent chance to get it twice. also said they are not related it didnt it is 2 different cancers. I feel like I won a bad lottery. As for the testosterone therapy i chose the implants because I didn't want any transfer to my wife or children. I tried the shots but they just made me too moody. The implants seem to make a more even keeled mood for me. I still have some up and down moments but overall happy.

I am new to the forum. Another lucky 2xer. First time I lost righty 2005 seminoma 1.5cm did radiation therapy as a precaution. I guess that was worthless. diaggnosed again feb of 2013 around the same size. It was actually crazy I didn't feel this one. i thought I was in the clear but I was getting yearly ultrasounds and they found a mass. Almost 7 yrs to the day. Ended up being the same size got it taken out 3 days before my 35th birthday what a way to celebrate. I did one heavy dose of chemo as a precaution this time. Felt like **** for over a week but was fine after that. Started doing the shots but they give you a huge boost right away and wore off quickly. They changed who I was. I now do the pellet implants and they work very well for me. I recommend getting your t measured often though. I was told they last 6 months. I went in at 5 to get my levels checked. I was at 13 not good. Just got more implants put in two days ago 12 pellets. Just waiting for them to kick in. Great to be alive! Anybody wants to ask questions or vent or chat just let me know.

I always hated hearing about statistics and prognosis from doctors - "well you its rare to get it the first time, and even rarer the second time" "I don't have any patients with 2x" or my favorite "well this is very curable so if you have to have a cancer this ones not too bad".....

My first one was over 20 years ago. I will say that things have improved significantly since then - for one the implants now or days are much more realistic and comfortable, MRI's are available over CT''s, and the range of TRT options and knowledge is impressive from back then.

You will find what works for you with TRT - gels or shots or even pellets. As I always suggest - I think you should check Total T, Free T, and Estradiol (E2) from time to time. Also that you should carefully consider what levels work best for you and your body, as many docs will be happy to keep you on the low side.

[/QUOTE]