[MOL] response to Dusti and anyone else about Testicular cancer [02218] Medicine On Line


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[MOL] response to Dusti and anyone else about Testicular cancer



Dear Dusti,

I discovered a lump in Nov. of last year..put off going to see my Dr. until 
Jan. 2000.  Dumb!!!!!!!!!!!   For all you guys out there, do monthly self 
exams and anything out of the ordinary needs to be looked at right away.  
Worst mistake of my life...  Anyway, I promptly had a orchiectomy (testicle 
removed) and also lymph nodes and after recovering from that I was found to 
have tumors in my abdomen (retroperitoneal non-seminoma is the official 
diagnosis)and had a major internal exploratory/surgery in Feb. due to that.

Now I'm on chemotherapy-three cycles of bleomycin, etoposide, and cisplatin 
(BEP) and possibly 4.  I hate it (understatement) but my wife and kids are 
the reasons I'm getting through it.  I've been very open about my cancer 
with them, my son is 7 and is worried he'll get it too..  My daughter is 5 
and seems to understand but one of her little friends told her "you die from 
cancer" and she asked about that..  I know they both realize it's serious 
but we're optimistic and have been upfront about what's going on and what we 
hope will happen.  It's tough though..but overall they seem to be coping 
normally.  I've always been very involved with my kids, we talk a lot and 
the number one thing that helps is affection and closeness.  When I'm not 
feeling good all I need is to hold them, and when they're worried, same 
thing applies.  It's the best medicine.

I don't mind the questions but I think the main reason Ive been a lurker is 
because it still a sensitive issue.  I don't know if people are embarrassed 
about it, I was at first.  And emotionally it's hard.  But keeping my mouth 
shut isn't helping either so thanks for helping me on this.

Incidentally, here is a story about a young guy who was only 16  and with 
testicular cancer.  It reflects the importance of not waiting ...

Mark

************************************************************************

J.D.'s Story
Three years ago, MAY '92 I found a tumor. The tumor was in my right 
testicle. I was first mortified and shocked, and saying to myself " how 
could this be?" 'why is this happenning to me?" The worst thing is that I 
didn't tell my parents right away or even the doctors. I couldn't tell 
anybody 'cause it was so embarrassing, and i felt so ashamed of it. Then i 
was in denial and this continued for two more years. That was two years of 
not telling anybody, I let it grew and grew and still couldn't have the 
courage to tell anybody. There are many reasons of why I didn't tell 
anybody. I prayed everyday that God will make it go away naturally, I tried 
to eat healthy foods and exercise alot, but the tumor kept on growing and 
growing. I kept thinking day in and day out, when I was going to tell 
someone, and get some help. It's like I gave up on my life and didn't care 
about my future. I was 16 years old when I first found the tumor and also 
thinking how can a young guy like me who plays sports, eats healthy and goes 
to church get cancer? I not overweight, I not a smoker, don't do drugs or 
drink still to this day it's misunderstandable.

Well, after 2 and half years of being in the dark, hiding this tumor, one 
night I started spiting out blood. my friends thought I got it from smoking, 
but I didn't smoke that much. I only smoked 3 or 4 cigarrettes in my whole 
life. It was winter December, and this coughing up of blood continued. I 
started to get tired, I lost my appettite and that testicle started to get 
noticeably big and heavy. I will have trouble sleeping and changing clothes. 
In gym class in the locker room, I would rarely change in front of the guys 
and try not to be noticed. So I started spitting out blood and lumps started 
appearing on my chest and back. I did tell my parents about problem of 
spitting out blood but not the testicle tumor.

My dad brought me to the hospital for X-rays with my parents still not 
knowing of my tumor. Then I finally had to be hospitalized in ICU because I 
was diagnosed with a lung disease ( forgot the name). and still nobody knew 
of my Testicle tumor! I still couldn't tell anyone! Doctors did not examine 
me completely so that's why they were trying to figure out where the lung 
disease came from. After three days of hospital stay, I sighed and finally 
told for the first time in my life to the doctors that there was something 
wrong with my testicle. That was embarrassing 'cause there was a lady doctor 
there too.

I was diagnosed with testicular carcinoma, and somebody told me it is the 
most curable kinds of cancer. But 'cause I didn't tell anybody for 2 years, 
it has spread to the lungs, skin and some I don't know. It was Jan 95, I 
spent new year's eve in the hospital. I was to undergo chemotherapy and 
surgery.

Now it's Nov '95, I just went through 7 cycles of chemo (VP16, Cisplatin and 
bleomycin) , my last chemo was a Bone-marrow transplant (VP-16, Carbo-platin 
I think), an orchiectomy of the right testicle and two biopsies. I am 
thinking this is not what a 18 or 19 year old should go through. My 
germ-cell cancer is measured by a blood test called Beta H.C.G., I guess it 
measures hormones of the cancer to tell if it's growing. That normal person 
would get 0-5 HCG, in DEC 94, when I was first diagnosed the number was over 
200,000+! That number after chemo started to dramatically decrease to 500! 
then to 22, then 11, 7, and it started to go up and down between 2 and 9. 
These numbers were accumulated after each cycle of chemo and my last chemo 
was in Aug '95.

CT Scans also shows no new tumors and show shinkage of tumors. So it's been 
two months of a break from a chemo since Aug '95. The bad news is that the 
Beta HCG has jumped up to "56". I am starting to have emotional feelings 
that I experienced when I found the tumor three years ago. Again in denial, 
but this time everybody knows about my problem and no longer hiding in the 
dark. I know everybody, doctors, nurses, friends, relatives, and esp. my 
family is trying to help me and pray for me too.

It seems that I am desperate for a miracle here, I'm praying very hard, and 
also trying hard to get answers and info through the internet. I know I want 
the latest info of new drugs and techniques that might help save my life or 
at least prolong my life even more. I know that's on the minds of all cancer 
patients, trying to buy time. I am only 19 years old and haven't experienced 
a full lifetime, but I thank god "for the blessings thou has bestowed on me" 
and my life. I am also thankful for my loving family, esp. my father who has 
been very encouraging and caring of me. Thankful for my friends who are 
understandable and supportive. "Someone special told me that cancer wasn't 
made to hurt anybody", "it happen because it was to bring family and friends 
closer together in a time of need" And this was true, I made more friends 
than ever before and I am so happy of all the support. Thank you god!

In conclusion, I write to you for help in fighting this illness. I am just 
desperate for a cure or a miracle of some kind. Is there any new promising 
drugs to treat my testicular cancer?

J.D.
19 years old...

Editor's Note: Unfortunately, we later found out that Jerade DeVeraturda 
passed away Dec 5, 1996... He literally died of embarrassment. Don't let 
this happen to you. If you think there is something wrong with you, 
regardless of how embarrassing or stupid you think it is, please go see a 
doctor and get it taken care of!!



--------------------------------------------------------------------------------







>From: "Barham, Dusti # IHTUL" <Dusti.Barham@tulsa.cistech.com>
>Reply-To: mol-cancer@lists.meds.com
>To: "'mol-cancer@lists.meds.com'" <mol-cancer@lists.meds.com>
>Subject: [MOL] Mark
>Date: Thu, 27 Apr 2000 13:13:51 -0500
>
>Mark, can I ask how long ago were you diagnosed and how did you find out?
>What type of chemo do you have to take?  Do you have to do radiation or
>surgery too?  Do you have children and do they know?
>
>You know..........my husband has always said I'd be a good reporter with as
>many questions as I ask.  You don't have to answer if you would rather not.
>
>Regards,
>Dusti
>
> > ----------
> > From: 	Mark Adkins[SMTP:marka1026@hotmail.com]
> > Reply To: 	mol-cancer@lists.meds.com
> > Sent: 	Thursday, April 27, 2000 12:57 PM
> > To: 	mol-cancer@lists.meds.com
> > Subject: 	Re: [MOL] Mark
> >
> >
> > Dear Kathy:
> >
> > Thank you and I'm not really worried but I am waiting for input about 
>the
> > website.  I'd be happy to help with that.  This Lil person hopefully 
>will
> > have mercy on me.  But...if there is one thing I've learned so far in
> > being
> > sick, if you don't say something about whatever it is that is bugging 
>you,
> >
> > people will just assume everything is A-OK and you will have pent up
> > feelings inside (not that the website was causing me stress..well maybe
> > just
> > a little...but that is just a small example) and that does not help you
> > get
> > better.  I've been learning to do that just a little but, however 
>annoying
> > I
> > may come across.
> >
> > Thank you for the encouragement about TC.  I've done a lot of research 
>on
> > it
> > and I am hopeful as well.  I have a long road ahead though.  But another
> > thing I've learned is to take it day by day only.  And have faith.....
> >
> > Thanks again.  I hear you have newly diagnosed breast cancer. I know the
> > feeling of horror with the initial diagnosis..but this shock will wear 
>off
> >
> > quickly as you begin treatment and you'll find the strength to accept it
> > and
> > fight it.  Hang in there..  Mark
> >
> >
> >
> >
> > >From: KathleenCorrigan@AOL.COM
> > >Reply-To: mol-cancer@lists.meds.com
> > >To: mol-cancer@lists.meds.com
> > >Subject: Re: [MOL] Mark
> > >Date: Thu, 27 Apr 2000 13:17:32 EDT
> > >
> > >Dear Mark:  There are some of us who aren't particularly odd, too.
> > >
> > >Just my feeble attempt at humor.  Again -- welcome.  And don't worry
> > about
> > >the male/female ratio.  I'm sure you've noticed how active several of 
>our
> > >testosterone enhanced members are.  From what I've learned and 
>observed,
> > >testicular cancer is very treatable.  I know several men who have come
> > >through it with flying colors.  However, I know only too well how
> > miserable
> > >chemo and radiation are.  Be thankful for your supportive wife, as I 
>know
> >
> > >you
> > >are.
> > >
> > >Talk to you soon.
> > >
> > >Your friend -- Kathy in Boise
> > 
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