Hello group.  I am rather new to this whole TC stuff. My fiance (we've know each
other for 10 years but just now got back together Xmas '08) was diagnosed with
TC in January '08. He went thru chemo and surgery (first surgery was removal of
the testicle, 2nd was in Jan '09 to remove all the tumors from the abdomen and
behind the chest). I've tried to do a lot of research on the topic but I'm still
confused on some things that he goes thru. The last time he had chemo was at the
beginning of December. His hair is starting to grow back and he is starting to
get some "feeling" back into his penis (i.e. stiffness) but we've only been able
to have full intercourse 1 time in 3 months. He was also diagnosed with CHF
about 5 years ago. When we went to Houstin in January for his surgery, he had a
heart defibrilator put in to help control the episodes of heart failure. He had
a lot of trouble getting his magnesium back to normal for a while. However, as
of now, everything seems to be fine, test wise. His tumor markers are clear, his
blood work is normal and the defibrilator and meds are keeping his heart in
check.  So what I'm confused about is.. he's always having dizzy spells and
chest pain and says he just doesnt feel "right". We try to stay home on the
weekends because if he gets too exerted (like walking thru the zoo) he gets
dizzy and starts to feel bad. I love this man to death and want to spend the
rest of our lives together, but what kind of life am I looking for, will he ever
be able to get off disability and return to a normal life? I'm not sure what
kind of help he's getting from his doctor, whenever he tells them whats going on
they just reply with a more bed rest and take your meds answer (FYI he is on
medicare at parkland, so it cant be great!)

Any comments or suggestions are GREATLY appreciated!

Does anyone know of a good Urologist in the Seattle area?  My brother
(25 y.o.) was diagnosed with testicular cancer this weekend.  I know
time is of the essence and the person he was referred to cannot see
him until later.  I would appreciate any referrals.

Thank you,

Cami

I agree. With your past history of TC, it'd be smart to get it
checked out with your doctor. Take care.

Chris


--- In testicular_cancer@yahoogroups.com, "elmlakeestate"
<elmlakeestate@...> wrote:
>
>
>
>
>
>
>
> I don't know...but I bet it is not anything "bad"...maybe some sort
> of scar tissue.  But, you need to immediately see your doctor as
soon
> as he returns.  Do not postpone your visit for any reason.  Good
luck
> and God bless you.
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
> --- In testicular_cancer@yahoogroups.com, "c_agapitos"
> <c_agapitos@> wrote:
> >
> > Hello all,
> > I'm Christos and i'm a TC survivor since 2003. I had my left
testis
> > removed and followed chemo.
> > Thanks to God, luck, relatives etc i'm fine and healthy, but ...
> >
> > a few days ago i discovered something strange, i found a small
lump
> > attached from the inside of my scrotal skin, it was found on the
> left
> > side which as mentioned had my testis removed therefore it is
empty.
> >
> > The lump is hard and painless and it seems not attached with
> anything
> > else except the skin from the inside.
> > I'm planning to pay a visit to my doctor but he is on vacations.
> >
> > Any ideas what this might be ?
> >
> > (ps: i'm very happy i found this group, god bless you all)
> > (ps2: please forgive typos :))
> >
>

I don't know...but I bet it is not anything "bad"...maybe some sort
of scar tissue.  But, you need to immediately see your doctor as soon
as he returns.  Do not postpone your visit for any reason.  Good luck
and God bless you.

















--- In testicular_cancer@yahoogroups.com, "c_agapitos"
<c_agapitos@...> wrote:
>
> Hello all,
> I'm Christos and i'm a TC survivor since 2003. I had my left testis
> removed and followed chemo.
> Thanks to God, luck, relatives etc i'm fine and healthy, but ...
>
> a few days ago i discovered something strange, i found a small lump
> attached from the inside of my scrotal skin, it was found on the
left
> side which as mentioned had my testis removed therefore it is empty.
>
> The lump is hard and painless and it seems not attached with
anything
> else except the skin from the inside.
> I'm planning to pay a visit to my doctor but he is on vacations.
>
> Any ideas what this might be ?
>
> (ps: i'm very happy i found this group, god bless you all)
> (ps2: please forgive typos :))
>

Hello all,
I'm Christos and i'm a TC survivor since 2003. I had my left testis
removed and followed chemo.
Thanks to God, luck, relatives etc i'm fine and healthy, but ...

a few days ago i discovered something strange, i found a small lump
attached from the inside of my scrotal skin, it was found on the left
side which as mentioned had my testis removed therefore it is empty.

The lump is hard and painless and it seems not attached with anything
else except the skin from the inside.
I'm planning to pay a visit to my doctor but he is on vacations.

Any ideas what this might be ?

(ps: i'm very happy i found this group, god bless you all)
(ps2: please forgive typos :))

Ed - he is 32
Thanks,
Margaret

   How old is he anyway?

Margaret:
Do all the research that you can on your own and become
familiar with this type of cancer. I had testicular cancer two years
ago and it took me two months to decide with treatment was best for me
I finally decided that chemo was my best option, this is a highly
curable disease if treated right. Besides losing my hair and feeling
very tired I had no other side affects, including nausau. I found that
eating very small meals was best for me, and make sure your newphew
keeps up his magnesium (sunflower seeds and gatorade) did wonders for
me when I started to get muscle fatigue.

Hi
I had testicular cancer 11 years ago. Lost my right testicle and had a very
large tumor elsewhere. This was a non-Seminole tumors with an alphafeto protein
AFP level of 10,000 stage 3B. This treatment was given over a period of 7 months
and include a host of chemo drugs plus 2 major surgeries. No radiation treatment
was given for this type of cancer. The larger of the tumors was a teratoma
tumor.
I had the full gamut of chemo drugs and will put the list together if you wish.
As for advice during treatment a couple of things come to mind. 1. Do not depend
on your doctors to monitor your blood tests properly. I had a very low potassium
level, my local doctor told me they were going to call my oncologist, but
hadn't. I was in the hospital for seven days before it was discovered you can't
absorb potassium with a low magnesium level. All this time I was under the
impression my oncologist was contacted, he was not. Looks like I had a cowboy
treating me. A month later I found myself again in the same hospital, but
another doctor, with an infection. I was losing some mental focus, but I could
tell that my symptoms were very close to the symptoms the month before, so I
asked the nurse what my magnesium level was. She said no one had tested for
magnesium. That is when I got very mad, now my potassium level was 1.7 and
nothing was being done. At that point I order the nurse to take a magnesium
test. Guess what, I didn't have any
  magnesium! An hour latter the doctor slid in the door looking very sheepish,
when I asked about the the magnesium level, he held his head down. Turning to
leave the room he stopped half way through the door, stopped and turn to me. Now
this is the honest to god truth, when he turned to me he ask me what dosage
should he prescribe.
Another time a pick line was put in my arm, snaking around and winding up in my
chest. The trouble was the person putting the line in me adhered to no sterile
protocol. He started having problems putting the line in me and after 45 minutes
he managed to put the line in my breast. He then pulled his gloves off and made
one more try, the trouble was I developed an infection from the lack of being
sterile. This infection almost cost me my right arm at the shoulder. There were
three other events, but I think you get the point. Don't do as I did and trust
someone because they are doctors. Trust your instincts and cross check
everything.

         David


--- On Sat, 11/22/08, houtx868 <houtx868@...> wrote:

> From: houtx868 <houtx868@...>
> Subject: [testicular_cancer] Re: asking for advice
> To: testicular_cancer@yahoogroups.com
> Date: Saturday, November 22, 2008, 3:14 PM
> --- In testicular_cancer@yahoogroups.com,
> "theherbalnook"
> <theherbalnook@...> wrote:
> >
> > Hello,
> > My nephew was dx. with testicular cancer last year -
> seminoma-type.
> It
> > was a large tumor and he had surgery followed by
> radiation. At his
> > follow-up recently, they found a golf-ball sized lymph
> node in his
> > pelvis. His bloodwork for the tumor markers was great
> - showed no
> > problem. He is scheduled to start 12 weeks of chemo
> with Dtoposide
> and
> > Cysplastis Dec. 1. Has anyone gone through this same
> thing? I know
> > little to nothing about this cancer and need to learn.
> Anyone know
> of a
> > prognosis in this case and how successful the chemo
> is. Also, if
> anyone
> > has gone through this chemo regimen, how did it make
> you feel?
> > Thanks so much,
> > Margaret
> >
> Hi Margaret,
> I went through the same dx 8 yrs ago.  I had one testicle
> removed and
> one yr to the date of my surgery I discovered a swollen
> lymph node.
> It did contain the same cancer and it was removed.  I went
> through
> six months of chemo. I have never been so sick in my life.
> I vomited
> so much I became dehydrated.  From then on every time I had
> a chemo
> treatment the dr prescribed an IV treatment to take home. I
> wish I
> could give your nephew a more positive outlook to the
> chemo, but I
> would be lying.  But you can assure him that remission rate
> is very
> high (95%).  I can say that the sickness only lasted 1-2
> days and
> then I was able to eat and drink. Just remember God puts us
> through
> hard times to bring us closer to him. Put your trust in him
> and
> things will be better before you know it.  God bless and
> good luck.
>
> Ed
>
>
> ------------------------------------
>
> Yahoo! Groups Links
>
>
>

--- In testicular_cancer@yahoogroups.com, "houtx868" <houtx868@...>
wrote:
>
> --- In testicular_cancer@yahoogroups.com, "theherbalnook"
> <theherbalnook@> wrote:
> >
> > Ed - what chemotherapy agents were you given? Also, I wonder why
> they
> > are not removing my nephew's lymph gland before the chemo as they
> did
> > for you. Lastly, his bloodwork all came back great. Do you know
why
> > his bloodwork for tumor markers would be negative with a golfball-
> > sized lymph node? Did you experience that?
> > Yes - God knows what He is doing and He is smarter, more
> coordinated
> > and more loving than we will ever be! Anything that works for our
> > good and His glory and puts us or keeps us on the path toward
> Heaven
> > is worth it.
> > Thanks so much,
> > Margaret
> > I took cystoplatin and two other drugs that I cannot remember off
> hand. I tried to look for my paperwork, but I just moved and I
cannot
> locate it at this time.  I was told the reason they were removing
the
> lymph node was that the fluid in the lymphatic system does not mix
> with blood and the markers would not show up.  You may ask for them
> to do a biopsy just to make sure, but it seems they are treating
him
> as if the cancer has spread by giving him the chemo. He will be
fine
> I assure you.  The treatment rate is very high. If I can help
answer
> any other questions or he would like to ask me anything please do
no
> hesitate.  How old is he anyway?
> > --- In testicular_cancer@yahoogroups.com, "houtx868" <houtx868@>
> > wrote:
> > >
> > > --- In testicular_cancer@yahoogroups.com, "theherbalnook"
> > > <theherbalnook@> wrote:
> > > >
> > > > Hello,
> > > > My nephew was dx. with testicular cancer last year - seminoma-
> > type.
> > > It
> > > > was a large tumor and he had surgery followed by radiation.
At
> > his
> > > > follow-up recently, they found a golf-ball sized lymph node
in
> > his
> > > > pelvis. His bloodwork for the tumor markers was great -
showed
> no
> > > > problem. He is scheduled to start 12 weeks of chemo with
> > Dtoposide
> > > and
> > > > Cysplastis Dec. 1. Has anyone gone through this same thing? I
> > know
> > > > little to nothing about this cancer and need to learn. Anyone
> > know
> > > of a
> > > > prognosis in this case and how successful the chemo is. Also,
> if
> > > anyone
> > > > has gone through this chemo regimen, how did it make you feel?
> > > > Thanks so much,
> > > > Margaret
> > > >
> > > Hi Margaret,
> > > I went through the same dx 8 yrs ago.  I had one testicle
removed
> > and
> > > one yr to the date of my surgery I discovered a swollen lymph
> > node.
> > > It did contain the same cancer and it was removed.  I went
> through
> > > six months of chemo. I have never been so sick in my life.  I
> > vomited
> > > so much I became dehydrated.  From then on every time I had a
> chemo
> > > treatment the dr prescribed an IV treatment to take home. I
wish
> I
> > > could give your nephew a more positive outlook to the chemo,
but
> I
> > > would be lying.  But you can assure him that remission rate is
> very
> > > high (95%).  I can say that the sickness only lasted 1-2 days
and
> > > then I was able to eat and drink. Just remember God puts us
> through
> > > hard times to bring us closer to him. Put your trust in him and
> > > things will be better before you know it.  God bless and good
> luck.
> > >
> > > Ed
> > >One of the other drugs was carboplatin.  Make sure before he
begins any chemo that he donates sperm if he plans to have kids
later.  He will be sterile after the chemo.
> >
>

--- In testicular_cancer@yahoogroups.com, "theherbalnook"
<theherbalnook@...> wrote:
>
> Ed - what chemotherapy agents were you given? Also, I wonder why
they
> are not removing my nephew's lymph gland before the chemo as they
did
> for you. Lastly, his bloodwork all came back great. Do you know why
> his bloodwork for tumor markers would be negative with a golfball-
> sized lymph node? Did you experience that?
> Yes - God knows what He is doing and He is smarter, more
coordinated
> and more loving than we will ever be! Anything that works for our
> good and His glory and puts us or keeps us on the path toward
Heaven
> is worth it.
> Thanks so much,
> Margaret
> I took cystoplatin and two other drugs that I cannot remember off
hand. I tried to look for my paperwork, but I just moved and I cannot
locate it at this time.  I was told the reason they were removing the
lymph node was that the fluid in the lymphatic system does not mix
with blood and the markers would not show up.  You may ask for them
to do a biopsy just to make sure, but it seems they are treating him
as if the cancer has spread by giving him the chemo. He will be fine
I assure you.  The treatment rate is very high. If I can help answer
any other questions or he would like to ask me anything please do no
hesitate.  How old is he anyway?
> --- In testicular_cancer@yahoogroups.com, "houtx868" <houtx868@>
> wrote:
> >
> > --- In testicular_cancer@yahoogroups.com, "theherbalnook"
> > <theherbalnook@> wrote:
> > >
> > > Hello,
> > > My nephew was dx. with testicular cancer last year - seminoma-
> type.
> > It
> > > was a large tumor and he had surgery followed by radiation. At
> his
> > > follow-up recently, they found a golf-ball sized lymph node in
> his
> > > pelvis. His bloodwork for the tumor markers was great - showed
no
> > > problem. He is scheduled to start 12 weeks of chemo with
> Dtoposide
> > and
> > > Cysplastis Dec. 1. Has anyone gone through this same thing? I
> know
> > > little to nothing about this cancer and need to learn. Anyone
> know
> > of a
> > > prognosis in this case and how successful the chemo is. Also,
if
> > anyone
> > > has gone through this chemo regimen, how did it make you feel?
> > > Thanks so much,
> > > Margaret
> > >
> > Hi Margaret,
> > I went through the same dx 8 yrs ago.  I had one testicle removed
> and
> > one yr to the date of my surgery I discovered a swollen lymph
> node.
> > It did contain the same cancer and it was removed.  I went
through
> > six months of chemo. I have never been so sick in my life.  I
> vomited
> > so much I became dehydrated.  From then on every time I had a
chemo
> > treatment the dr prescribed an IV treatment to take home. I wish
I
> > could give your nephew a more positive outlook to the chemo, but
I
> > would be lying.  But you can assure him that remission rate is
very
> > high (95%).  I can say that the sickness only lasted 1-2 days and
> > then I was able to eat and drink. Just remember God puts us
through
> > hard times to bring us closer to him. Put your trust in him and
> > things will be better before you know it.  God bless and good
luck.
> >
> > Ed
> >
>

Ed - what chemotherapy agents were you given? Also, I wonder why they
are not removing my nephew's lymph gland before the chemo as they did
for you. Lastly, his bloodwork all came back great. Do you know why
his bloodwork for tumor markers would be negative with a golfball-
sized lymph node? Did you experience that?
Yes - God knows what He is doing and He is smarter, more coordinated
and more loving than we will ever be! Anything that works for our
good and His glory and puts us or keeps us on the path toward Heaven
is worth it.
Thanks so much,
Margaret

--- In testicular_cancer@yahoogroups.com, "houtx868" <houtx868@...>
wrote:
>
> --- In testicular_cancer@yahoogroups.com, "theherbalnook"
> <theherbalnook@> wrote:
> >
> > Hello,
> > My nephew was dx. with testicular cancer last year - seminoma-
type.
> It
> > was a large tumor and he had surgery followed by radiation. At
his
> > follow-up recently, they found a golf-ball sized lymph node in
his
> > pelvis. His bloodwork for the tumor markers was great - showed no
> > problem. He is scheduled to start 12 weeks of chemo with
Dtoposide
> and
> > Cysplastis Dec. 1. Has anyone gone through this same thing? I
know
> > little to nothing about this cancer and need to learn. Anyone
know
> of a
> > prognosis in this case and how successful the chemo is. Also, if
> anyone
> > has gone through this chemo regimen, how did it make you feel?
> > Thanks so much,
> > Margaret
> >
> Hi Margaret,
> I went through the same dx 8 yrs ago.  I had one testicle removed
and
> one yr to the date of my surgery I discovered a swollen lymph
node.
> It did contain the same cancer and it was removed.  I went through
> six months of chemo. I have never been so sick in my life.  I
vomited
> so much I became dehydrated.  From then on every time I had a chemo
> treatment the dr prescribed an IV treatment to take home. I wish I
> could give your nephew a more positive outlook to the chemo, but I
> would be lying.  But you can assure him that remission rate is very
> high (95%).  I can say that the sickness only lasted 1-2 days and
> then I was able to eat and drink. Just remember God puts us through
> hard times to bring us closer to him. Put your trust in him and
> things will be better before you know it.  God bless and good luck.
>
> Ed
>

--- In testicular_cancer@yahoogroups.com, "theherbalnook"
<theherbalnook@...> wrote:
>
> Hello,
> My nephew was dx. with testicular cancer last year - seminoma-type.
It
> was a large tumor and he had surgery followed by radiation. At his
> follow-up recently, they found a golf-ball sized lymph node in his
> pelvis. His bloodwork for the tumor markers was great - showed no
> problem. He is scheduled to start 12 weeks of chemo with Dtoposide
and
> Cysplastis Dec. 1. Has anyone gone through this same thing? I know
> little to nothing about this cancer and need to learn. Anyone know
of a
> prognosis in this case and how successful the chemo is. Also, if
anyone
> has gone through this chemo regimen, how did it make you feel?
> Thanks so much,
> Margaret
>
Hi Margaret,
I went through the same dx 8 yrs ago.  I had one testicle removed and
one yr to the date of my surgery I discovered a swollen lymph node.
It did contain the same cancer and it was removed.  I went through
six months of chemo. I have never been so sick in my life.  I vomited
so much I became dehydrated.  From then on every time I had a chemo
treatment the dr prescribed an IV treatment to take home. I wish I
could give your nephew a more positive outlook to the chemo, but I
would be lying.  But you can assure him that remission rate is very
high (95%).  I can say that the sickness only lasted 1-2 days and
then I was able to eat and drink. Just remember God puts us through
hard times to bring us closer to him. Put your trust in him and
things will be better before you know it.  God bless and good luck.

Ed

Hello,
My nephew was dx. with testicular cancer last year - seminoma-type. It
was a large tumor and he had surgery followed by radiation. At his
follow-up recently, they found a golf-ball sized lymph node in his
pelvis. His bloodwork for the tumor markers was great - showed no
problem. He is scheduled to start 12 weeks of chemo with Dtoposide and
Cysplastis Dec. 1. Has anyone gone through this same thing? I know
little to nothing about this cancer and need to learn. Anyone know of a
prognosis in this case and how successful the chemo is. Also, if anyone
has gone through this chemo regimen, how did it make you feel?
Thanks so much,
Margaret

I first noticed a small, bb sized hard spot above my right testicle
about 3 years ago. It grew within a few months to its current size,
which is about the size of a small cashew.

It is not directly on my testicle, but rather, "above" it.

I have had no insurance, and so I haven't been able to get it properly
tested.

In all my reading, I think it is more likely to be a spermatocele,
however.

But since I'm getting into the time frame where TC, if it is TC, would
become much more lethal, I'm wondering if there's any way to get free
or low-cost screening.

Get another opinion while there are only 2 enlarged nodes, especially
if the one in your neck is causing discomfort. Good luck my friend.



--- In testicular_cancer@yahoogroups.com, "Thor Stepp Sr."
<thor44827@...> wrote:
>
> Well I have had this years check up and and the docs say im fine
except
> for 1 enlarged lymph node in my abdomen and one in my throat.  I dont
> know how large the one in my abdomen is but, the one in my throat is
> 11mm.  This node has caused me some pain and discomfort but the
> Veterans administration doc said see me in a year.  This seems to be
a
> bit of a wait since it is causeing pain.  Would like some input.
> Thanks all
> Thor Stepp Sr.
> Stage II non-seminomous
> Orchiectomey and Rplnd with 7 months chemo
>

--- In testicular_cancer@yahoogroups.com, "Thor Stepp Sr."
<thor44827@...> wrote:
>
> Well I have had this years check up and and the docs say im fine
except
> for 1 enlarged lymph node in my abdomen and one in my throat.  I dont
> know how large the one in my abdomen is but, the one in my throat is
> 11mm.  This node has caused me some pain and discomfort but the
> Veterans administration doc said see me in a year.  This seems to be
a
> bit of a wait since it is causeing pain.  Would like some input.
> Thanks all
> Thor Stepp Sr.
> Stage II non-seminomous
> Orchiectomey and Rplnd with 7 months chemo
>
Sorry to hear about your lymph nodes.  I would def seek another
opinion. I had an enlarged one in my neck one year to the date of my
orch. and the doc did a biopsy and it was cancerous.  Please do not
take any chances. Best wishes and I will keep you in my prayers

Well I have had this years check up and and the docs say im fine except
for 1 enlarged lymph node in my abdomen and one in my throat.  I dont
know how large the one in my abdomen is but, the one in my throat is
11mm.  This node has caused me some pain and discomfort but the
Veterans administration doc said see me in a year.  This seems to be a
bit of a wait since it is causeing pain.  Would like some input.
Thanks all
Thor Stepp Sr.
Stage II non-seminomous
Orchiectomey and Rplnd with 7 months chemo

our son james died from this cancer exactley one year ago tomorrow 10/06/07 he was 22 years old,is it not funny we can go to mars and beyond,out to the furthest parts of the universe and yet young men are still dying of this so called highly curable cancer.Looking up the numbers 8789 men will be diagnosed this year of that number 500 wont make it .   All the best to those still here.

---

All new Yahoo! Mail - Get a sneak peak at messages with a handy reading pane.

We're awaiting the first oncologist appt and the CT scan has yet to
be done so we don't know the staging yet.  So, we're playing the
what-if game with best case senario.  The tumor was pure seminoma.
There was no vascular lymphatic invasion.  So, that's good at
least.  However, it was huge.  It was 7.5 X 5.7 X 4.2 cm.  I've read
that, in general, surveillence alone is suggested less if over 4cm -
but that the v/l invasion is actually a more important measure of
reoccurance.  Anyone have any insight on this?

My other question is about surveillence.  Does surveillence always
catch a reoccurance?  We're a bit nervous since nearly a year ago he
was misdiagnosed.  The ultrasound was fine.  The blood work was
fine.  He was given an antibiotic which actually did make it shrink
a bit, though not completely.  When he went to a different dr
recently, he was given an antibiotic again and it didn't work.
Blood work was fine.  The ultrasound was inconclusive.  The
Orchiectomy was done as a just-in-case.  With the dr going in not
even sure if he was taking out the testicle until he was in there.
It makes me nervous that a tumor as large as that didn't show up.
Could surveillence miss it as well?

If we figure out that radiation or chemo is likely even in a best
case senario, then we can use our energy trying to figure out which
of those options is better.