LIVESTRONG: Testicular Cancer Group

strange world

posted by wining124 on 3:51 pm

 hi how it going , my name is mario im out visalia ca and im 23 , well i have the testicular cancer i don't wanna get in to what kind it is but i had the more aggressive one , i was a normal healthy guy , playing sports all my life the only thing i ever had was broken bones , but my life change june 22 2011 when my doc diagnosed me with cancer , it was a shock ,i was scared and i was asking y me , i was just destroyed , just the word cancer can scare the hell out u , but i didn't know much about it so we moved forward i had my testy removed , and they did blood work and it looking like i still had cancer in they didn't know where exactly it was so i did test . they found a small mass in my chest behind some thing i forgot what it was , so moving forward i seen my doc , and he told me i was stage 4 or higher and that im have to get a lot of chemo and i was gonna lose my hair and my chances was 70 percent , idk if any of u had a percent like mine or lower but to some to tell u that u have a percent on ur life kills u and destroys u inside , i felt hopeless and was upset and sad mad i felt ever emotion u can feel in like 2 hours , i was lost for about a week until they called me in to my chemo and i seen my doc again , (by this point i excepted this and was ready to beat this and go to heal and back , i started chemo on 08-17-2011, so i came in seen my doc and he told me the best news i ever heard in my life , that he looked at all my paper work and that i wasn't a stage 4 or higher i was a stage 2b, and my 70 percent went to 100 percent i was happy and he drop my chemo from 8 to 2 times i was happy , im going thru this chemo right know it sucks but  im excepting it so it goes by better i think , just the throwing up gets a tiring lol , and i haven express my self like this since i started all this and this felt good to tell ppl that now what im going thru , becuz t be real ur love ones nd friends they there for u but they have no idea what u going thru mentally emotional or phshycial , but im glad i found guys to talk to about this that going thru what im going thru , sorry if i misspelled some words im actually going thru one sit of chemo and the pre meeds gets me tired and lazy and yea , well i hope some comments on this and gives me advice or just likes my story , its not much a story just what im going thru i guess
well much love  

Concerned Father

posted by Eric4Fam on 1:41 pm

My 16 year old son was referred by pediatrician to a urologist out of concern about undersized testicles.   The urologists sonogram has shown a mass in one of his testicles.  The urologist believes the testicle will need to be removed.  He couldn't say anymore at this point about whether it is cancerous, or whether cancer treatments may be required as well. This has come out of the blue and I'm still stunned.   We are getting a 2nd opinion from our nearby childerens hospital.  Is it the case that they remove the testicle immediately in this kind of situation,  or will they biopsy the mass then decide what to do?
He's just a typical teenager and I want to protect his health for now and for adulthood.   

TC

posted by hybridmedic on 2:36 pm

Hello, I'm Russell. I'm a firefighter/paramedic in Memphis, TN and was officially diagnosed with embryonal testicular cancer last week. I am in what I am calling the "in between" phase, that awkward phase post-op and pre-chemo where they are finding out what to do next. The doctors are taking the lab work, and I've been scheduled for my final "in between" follow up with the oncologist tomorrow (Friday) as well as a chest X-ray. I have a lot of questions, mainly wondering if anyone opted for chemo even though they didn't find anything just in case, or if the wait and see approach was a better option? I play the scenarios over and over, as I'm sure many have before me, and I'm just wondering where to go from here.

Testicular- embryn. -carcinoma-- non semenoma

posted by K848Duc on 4:49 pm

Hey,
    I'm Kenny Craig, I just turned 28, and I hope I finally found a few guys to talk to, who has what I have. Close enough right. 
Currently in chemo treatments, (Platinum)  22nd day today, beginning of my second full week of everyday treatments. 
I lost all my hair this weekend, but I felt good enough to tear up the mountains on my motorcycle, 2 beautiful days of feeling almost normal...
I have yet to talk to a man going through this.   Was hoping for advice, maybe, or Lance hola at me kid! your a beast!!!  lol
" The only easy day was yesterday"

LIVESTRONG CHALLENGES 2011

posted by BeatCancerAt26 on 3:54 pm

Anyone signing up this year?
A couple of my friends and I are going to drive up to Davis, Ca. to do the 65 mile ride. If anyone is in Northern California and you are interested in joining us, let me know. Sign up with our team at http://davis2011.livestrong.org/justbeat it
You don't have to do the 65 mile, some of our group will be doing the 15 mile course.

Just saying Hi

posted by duty on 2:18 am

Just finished my final bleo treatment. Total of 3 courses of BEP for embrynonal carcinoma.
Jan 12 I go for a catscan and blood work. Just thought I'd chime in to say Hi.

Update....

posted by Bermelr on 11:43 am

As of November 1 year from having High Dose Chemotherapy I am still cancer free!! My wife and I found out we are having twins and tomorrow is the big day! Demcember 10 we are going in at 5:30 am and having a c-section.. A boy/girl.... Cancer may have slowed me down but will NEVER stop me! Keep fighting there is always Hope and Miracles do happen!! God Bless...

Is back and it really suck

posted by maolivestrong on 8:02 pm

I been dealing for the last month with the idea of having the cancer back and guess what it is now is in my other testis, I spoked to my Dr today and he said it happened 1 in a 30 so i gues im that one ,so I have to go in surgery next thursday and it suck so now i guess we going to start this all over again so my friends I know i havent been here in a long time but if you read this before or on thursday and you have a minute pray for God to guide the hands of my surgeon and for everything to go well I'll be in Cleveland Clinic and I have the best Dr but every little bit help , thank you my brothers much STRONGlove.
maolivestrong

good vibes

posted by bigturtle on 9:22 pm

Wow it has been two years of battling testicular cancer.
My life is so different now, but still the same,
Three surgeries, four rounds of chemo/ but I'm okay.
I even went surfing yesterday.
It feels like I have a phD from the school of hard knocks.
I don't know if I can put that on my resume,
probably best to go back to school and get a real diploma.
For all those battling: Testicular cancer is one of the most curable cancers in the world, so keep your head up, and count your lucky stars.
Peace, one love
Nickel Eckel

LAPAROSCOPIC RETROPERITONEAL LYMPH NODE DISSECTION (RPLND)

posted by dmckee22 on 7:06 pm

Does anyone have any good information on this procedure versus the traditional operation. My son's oncologist just called to let us know he needs surgery after finishing chemo 16 months ago. I'm looking for options.

Testicular cancer in a fifty-nine year old!

posted by pembroke2 on 11:05 pm

 My Urologist said I was a rarity in being diagnosed with a mixed germ cell tumor at my age. Orchiectomy in October stage 1B. I have COPD so watchful waiting was decided because I am overweight as well. Consulted with a brilliant Urologist at Stanford Dr. Mark Gonzalgo who does PRLND laproscopically.  Normal three month checks July when my HCG jumped from 4 to 740. Small tumor in lower retroperitoneal lymph node  First  EP chemo today (Is the first one always side effect free, does it always get worse? I will have four five day rounds and then an 18 day rest period in between each. Then followed by a RPLND (modified and laproscopically done I hope on both)  Tumor was 90 percent nonseminoma and less than ten percent embryonal carcinoma. I'm told I still have at least a 95% cure rate. I am a college professor and psychotherapist, but things are certainly different when they happen to you, huh? My first lecture is now always about testicular self-examination. Not what  any student expects in a clinical social work class. I will have to give up classes this semester of course. Any tips would be appreciated. Thanks,Bart

LIVESTRONG Challenge

posted by BeatCancerAt26 on 10:27 pm

Has any had the opportunity to do one of these challenges? I did the San Jose Challenge, 50 Miles. It was a really wonderful experience and one that I will do again next year. I only started riding a bike a few months ago and never thought that I would actually finish the ride, but when I crossed that finish line... it felt like I heard those words "You are Cancer free", all over again. Its something that I would recommend to all of you out there, it really is a uplifting event. By the way, I am now 10 months Cancer Free and looking forward to my 1 year anniversary at the end of September  
 
-Mike E

Hi, I'm new - Husband recently diagnosed

posted by allars on 8:32 pm

Hi, I'm glad I found this group.  I think my husband and I are still in a little bit of shock from all of this.  He was diagnosed at the very end of June.  He had surgery to remove his left . 
 
Cancer Break down:
Embroyonal Cell – 50%
Teratoma – 30%
Yolk Sac – 20%

Blood work:
Alpha Fetoprotein – 319 (normal = .6 - 6.6)
HCG – 90 (normal = 0 – 3)

Positive signs:
CT Scan – negative
Biopsy found no evidence of lymphodic or vascular invasion





The treatment plans they will decide on will be one of three things.
1. Another surgery called
laparoscopic retroperitoneal lymph node dissection. They would do this to remove all the lymphnodes in the chest area, to make sure to get out all possible remnants of cancer.
2. Chemotherapy
3. Monitoring.
We are still waiting for some blood work, and to hear from the tumor board.  We don't know if it's spread yet.  I am hoping it hasn't, especially considering the ct scan was clear. 
It's hard to think about anything else lately, and I'm finding a lot of anxiety over waiting, and waiting for the test results.  We have 4 kids, my husband is young and strong.  I am just trying to stay positive but honestly it's pretty tough at the moment! 
Thanks for reading, and also for the posts here.  I enjoy reading all the experiences. I sure am learning a lot. 
 

Any one here with spermatocytic seminoma?

posted by murali1968 on 6:39 am

To check out the cause for painless swelling of my left testis, a trucut needle biopsy was done on 6th July'10. As the biopsy showed seminoma we had my left testis removed on 13th July'10. 
After removal the immunohistochemistry showed that the tumour is a spermatocytic seminoma which is rare. CT abdomen, CT chest and tumour markers in blood all negative, showing it has not spread. The tumour could be 8,9 months old and was about 5cm in size.
My diliemma now is to undergo radiation therapy or surveillance. Any one here with this type of tumour? Any thoughts or suggestions? Doctors believe it is stage I and biopsy could have introduced a minor risk of it spreading before removal of tumour. I am also worried about second malignancy risks due to radiation. Do you think it is less risky to go for surveillance and treat the cancer if it surfaces again?
Thanks for reading this post. Please help me with your views.

Still Cancer free

posted by Bermelr on 11:16 am

Just got my 4 month check up and everything is great! Found out we are expecting twins! Boy and a Girl!

Hubby on surveillance, retroperitoneal residual mass ~2.7 cms

posted by starpointer on 11:39 am

DH had rt orchiectomy, biopsy of mass revealed seminoma, likely burnt-out tumor of that shot off before dying. Mass was up to 7.8 cms. Four cycles of EP at Sloan Kettering.  CT revealed 2.7 cm residual mass at retroperitoneal lymph node. Dr. Bosl (anyone know of him) gave us 95% odds that mass is just necrotic (scar) tissue. Will be seeing DH monthly, a CT scheduled for Sept.
Anyone here have experience with residual mass on CT scan?  (Pure seminoma)
Or with going on surveillance in similar situation?
We were a tad freaked by the residual mass, but Dr. Bosl is considered an expert, so are trying to be optimistic.
Have a healthy day - thx. in advance!
D.

My TC story on vanityfair.com...

posted by MCKP on 10:40 am

Please share the below link with others, and be well!

http://www.vanityfair.com/culture/features/2010/05/radical-healthcare-201005

Green Stuff

posted by mynameisteddy on 5:36 pm

Woke up to throw up bile a few times, called the Dr and he said I had to go to the emergency room it could bea bowel obstruction. Tests showd theres no obstruction but i have an "alias" or something that may lead to it. Left the hospital with just nausea medication. At home throw up two moree  times, should I be more concerned or just wait it out. Thanks

RPLND

posted by mynameisteddy on 9:40 pm

Underwent RPLND on the 14th. Was released yyesterday and am doing pretty good. I was not expecting so much pain and chose not to get the epidural, many nurses were amazed at how i managed the pain without it. It was a rough couple days, I will not lie. I made it a priority to walk several times a day in the hallways and I think this helped greatly. Am still having some troubles with bowels but i think its due to all the pain medications. Cant wait till the incision heals a bit more so I can be more active. I get the results of the pathology lab next friday wish me luck.

Still Cancer free and Great News!!

posted by Bermelr on 6:50 am

Been cancer free now since March! It feels great, you cannot even tell there was anything wrong with me.. Energy is almost back and muscle is getting there. Other then that feel great! After going through the surgery to remove my I banked some sperm for a future child. Well back in Feb. we looked into using that sperm. We got it tested and found out that are chances of using that sperm and having it fertilize an egg were slim to none! This brought some sadness to my wife and I but we were welling to give it and try and have our faith in god! So we visited the doctors that do the in vitro and got some information from them. To make a long story short they had to give the sperm some caffeine to make the sperm wake up and them inplant them into the egg to fertilize them. The doctors could only get 20 alive sperm to move! (Should be like millions!) So chances just dropped lower. Even the doctors we had.. Had there doubts.. (One of the best doctors in there field!) Well just kept praying and long time waiting we found out we made 6 fertizlied eggs! A true Marical!! We had to wait a few days to see if they continued growing and living.. After a few days 3 of them did not make it but we had 3 Grade A eggs fertizlied and ready to go! What a Blessing! So doctor suggested we plant 2 and hope we get one! Are chances are still only a 40% that we get pregnant and a less than 10% chance or so we have twins! The other one we froze for a future use if we want to! After a week or so on bed rest we went back for the ultra sound to see the outcome. Yes pregnant with Twins!! What a maricle! A True Blessing! We have one son already before this cancer even came! So I think my wife and I are done having kids but we will have 3 now and could not be happier! Are twins are due December 24, 2010.. I suggest anyone going through cancer to bank some sperm because having kids after the chemo is a hard thing to do. Especially after what I went though there is no chance ever! If anyone has any questions on the whole procedude feel free to post them here or email me at my personal email at ryan.bermel@gmail.com Thanks

Cancer Ball be Gone

posted by speco on 9:00 pm

Had surgery this morning to remove my left testical.  My doctor told my fiance that the prelim biopsy shows stage 1 seminoma and that everything went about as well as they could have been, so that makes us feel better about this.  I feel fortunate that I caught this early and may only need to have "watchful waiting" after this.  As it stands right now my blood and chest are clean from cancer.  I feel a bit out of it and really sore, but the ice, painkillers, and watching the blackhawks winning helps.
I did not get the prostetic.  My doctor had a compelling argument against it especially since I train in jui-jitsu.  I am a little too sore to care right now either way but I think I will be good with the decision.
The surgery was a bit of a crazy experience...I did it at Northwestern Memorial in Chicago which is a teaching hospital so there were a lot of people hanging out while my junk was out.  I was surprised to wake up completely shaved and have a padded jock strap on.  My fiance joke that they must have put me in some crazy positions to get that thing on.  I am not just hoping that the soreness goes away by Monday so I can move on and get back to my daily routine.

Open letter to Cancer

posted by Rmichra on 2:23 am

Hi Everyone,
My son was diagnosed with testicular cancer at the beginning of April.  He is currently going through chemotherapy.   I mentioned in passing the other day to a friend that I should write a letter to express my feelings and thoughts on the subject.  She was very encouraging so I spent a weekend writing this and wanted to share especially if it can help somebody else.
 

Dumb Stupid Cancer,
Who do you think you are coming into our life?  Why should my son be forced to make some important life decisions at such a young age and within a compressed timeframe?  What did a 17 year old boy do to deserve this?  Instead of coming after me who has been around for quite a few years, you go after a defense less young man who has his whole life in front of him.  You are such a coward to sneak in and wreak havoc without any advance warning.  We can’t see or hear you but only witness the indiscriminate destruction you carelessly leave behind.  You may think you can claim victory because you have left your scars and mark on the inside my son’s body but you have not taken his/our heart and soul.
I have bad news for you.  You are not going to win!  We have the best minds in medical science as well as their experience in dealing with you and your kind working for us.  Plus we have faith in God and the support of many people on our side.  I will spend and do whatever it takes to wipe you out.  We’re not going to stop until your every last molecule is destroyed whether it’s on a strand of hair on top of my son’s head or in his little toe.  You think you can go wherever you please but you will not be able to hide.  We are going to hunt you down and eliminate you however long it takes.  After that we are going to be watching to make sure you never ever come back.   In short, we’re going to give you the finger.
Watching my son go through chemotherapy is hard to experience sometimes because it seems like his soul is being zapped out of him because of you.  I can remember the exact moment my son came into the world both the doctor and I commented about what a head full of hair he had at birth.  Now because of this battle with you he will lose it but that is only temporary.  We know some aspects of my son’s future will be altered now but that only means there is a whole new realm of possibilities waiting to be discovered.  You have disrupted our lives by introducing stress, uncertainty and discomfort but it will only be for a little while.  We know going through such trying times will make my son more resilient and stronger in the long run.  We will be able to look back one day and realize this whole nightmare was only a small setback on the journey called life.
We have been truly blessed with the outpouring of love and support from family, neighbors and friends.  We have been introduced to the network and resources created by other cancer survivors and thoughtful loved ones something you probably can’t comprehend.  You picked the wrong person to inflict with your insidious malady.  My son has the benefits of youth going for him and he is a fighter.  Make no mistake; he will be a cancer survivor. 
No retreat, No surrender, No fear.
 
Sincerely,
Your mortal enemy

Pre-Op

posted by speco on 9:00 pm

Hi All,
  I am a 29 yr old white male and was just diagnosted on Thursday with 3 tumors in my left testis.  I noticed it about a month ago and it does not hurt but I decided to see a doctor right away.  As it stands right now I have had good (normal) blood work and my ct scan shows that my chest and abs are clean.  However the ultrasound and mri of my groin both show 3 small tumors.  I have scheduled a surgery to remove the testis this Friday.  My Dr. believes that this best course of action, and I was hoping to get some input from the people in this group.  Is this absolutely necessary?  How is the recovery?  I am getting married in 5 weeks and I want to make sure I will not have any issues so close to my wedding day.  What are some of the major questions I should be asking my doctor?  I am giving a sperm sample on Tuesday for analysis and possible freezing but my Dr. told me that one issue with freezing my current sperm is the fact that some of the sperm is being created my this tumoris testical.  Is this a major issue? 
Thanks for any help.  This group has already been helpful in this scary situation.

Hey all

posted by momowagon on 12:59 pm

I am 28 years old and was diagnosed with Stage 1A nonseminoma mixed germ cell/yolk sac tumor in Dec 2009.  had Right Orchiectomy that month and was put on surveillance after.  All my marker levels and CT scans and X-rays were normal until yesterday.  My AFP levels went from 3 (jan, feb mar) to 27 on April 2  and have risen to 35 as of yesterday.  My X-rays (last was yesterday) and CT scans (last was mid-march) have been negative so far.  I was planning to take a trip for the month of may to visit my folks since I am between semesters and until the test I was cancer free as far as anyone could tell.  I was gonna fly home thursday.  From what I can tell, the elevated markers put me in stage 1S now, since no other signs of cancer have shown up.  I am waiting to get in to see my Doc, as I have been seeing an NP for surveillance.  I guess I am wondering if I am right to assume that I have some Chemo in my near future and should postpone my trip.  Also, what is the timing usually like from discovery in surveillance to start of treatment?  Could I jet home for a couple weeks and come back to start chemo, or is it like a very next day sort of thing?  I'm sure I will sort this out with my Doc when I get an appointment, but I was hoping to see some other people's experiences with starting chemo and/or having elevated marker(s) but no other physical signs of cancer.

CRStoneKy

posted by CRStoneKY on 7:35 am

My 30 year old son was diagnosed with testicular cancer three days ago.  I am so scared for him because I feel he has had this disease for a long time. When he was only 18 years old, he would complain about pain in his testicles. The first time it happened, he was mowing the lawn, which he loathed doing, so I thought it was a clever excuse. I am now overwhelmed with guilt. Also there is a lump on his mid-back, to the right of his spine.  The lump was drained smoe years ago, but it is back. I am scared it is the cancer that is spread. My most  huge fear, though, and I have so very many, is because he has NO HEALTH INSURANCE. I am scared he won't get the best treatment for him because of this and not having any money. I am so scared I can not function.

Losing hair again

posted by rmor0101 on 10:28 pm

All of my hair grew back fine after I finished chemo, about a month ago I noticed that my hair was now thinning in places and not growing back at all in others.  I have some good sized empty patches on both sides of my face by my jaw.  My hair has thinned noticebly from the sideburns area to the back of my ear.  I just had my 6 month post chemo screening and all my levels were fine.  My doctor said that the thinning or lose of hair is not unusual.  I have been trying to look online and have not been able to find much of anything.  Has anyone else experienced anything like this?

Don't know what to expect

posted by Rmichra on 9:11 pm

Hi, my son who is 17 was diagnosed with testicular cancer today (3/30/2010).  He will have surgery to remove his on 4/1/2010.  Since he had only one that descended, he will no longer be able to have kids.  We have been referred to a pediatric oncologist for chemo after the surgery.  We don't know what to expect at this point and feel bad for our son.  He seems to be in good spirits about all of this. 

No Sign of Disease

posted by Bermelr on 9:47 am

Sometime in Feb. I had a CT scan and the doctors have found no sign of disease!! I just had another doctor visit a few days ago for a basic follow up with blood work and my tumor markers were fine and everything is great! My hair is almost all the way back and I have alot of energy and muscle is slowly building! I am even playing basketball on a daily basis and being able to keep up with everyone and play just about better then anyone on the court! Everything is great and I am so glad god has this plan for me. I love helping out others so if you have any questions about your treatment let me know I have been through alot! Thanks!

Quick enough?

posted by dyandrich on 4:51 pm

Well I was just diagnosed with testicular cancer today 3/08/2010 and will be having surgery tomorrow the 9th. I can't believe this has happened so quick. I hope I was quick enough to catch it all.

Neuropathy

posted by mpcachapero on 9:31 am

 february last year i started to feel intermittent abdominal pains. when i could no longer tolerate the pain i consulted the doctors, and after series of examinations they found out i had a 10 cm retroperitoneal tumor. the biopsy confirmed that i had a extragonadal testicular cancer. my whole family was devastated with the news. by my doctors recommendations, i immediately undergone 6 cycles of chemotheraphy, & 20 days of radiation. the whole treatment process was a success since the CT results show a significant decrease in the size of the tumor. as a final approach on my whole healing process, my doctors suggested that they remove the remaining portion left inside my body through surgery. at first i was hesitant to agree on the suggestion because i was so afraid to undergo surgery but later on i agreed on the hope that that would be the last step to my complete and permanent recovery. by God's grace, the surgery was successful and the best news of all was that the remaining tiny pieces of the tumor was found to be necrotic. after almost a year of hussle and tussle and both emotional and physical batter, i was healed. God healed me, thanks to him. =) now i am on my way to full recovery. if not for this chemo-induced neuropathy, i am as good as new. hopefully this neuropathy be gone soon so that i could go on with my life anew. as a tool to beat my neuropathy, i am taking neurontin, meticobal, dolo-neurobion and polynerv 500 as my doctors recommended. i would just like to ask if there are other ways to treat this neuropathy, maybe alternative methods or medicines. this is really affecting my life because i couldn't do anything other than massaging both my hands and feet all day long just to lessen the pain; i could not work, or even do minimal things since i could not concentrate due to extreme pain. thank you so much and may God bless us all.=)

Cancer sux

posted by mahayla on 12:22 pm

Hey guys I just wanted to say that i wish each and everyone of you the best. Sounds as if you guys caught the problem early. My ex husband was diagnosed with stage 4 non siminoma in May of 2008. He found that his right testical was swollen in mid 2006 and i couldn't convince him to have it checked out. In Feb. of 2008 he became unable to swallow and had alot of back pain. After several weeks his left leg became paralized so we go back to the doctor and the run MRI's and find that he has stage 4 testicular cancer. It had spread to his spine and then on to his brain stem. The oncologist gave him a 60% chance of survival after having his testical removed and treatments. His tumor markers only went down to 49 so they set him up for a stem cell transplant at Emory University in Atlanta GA. The doctor in Atlanta informs us that his cancer is a rare cell that he has only seen a couple of times, so we travel to Atlanta everyday for a week to draw cells but things didn't work out and he never did the transplant. He informed his oncologists back home that he made the choice to stop treatment and he passed away Dec. 18th 2009. He was 38 years old. I am very pleased to see that you guys seem to have caught it early and hope for a great prognosis. The urologist told him if he had gotten medical attention as soon as the problem started, his survival chances would have been about 95%. Awareness would have saved his life.

Fight's on

posted by Ry_USAF on 2:55 pm

Good afternoon everyone. My name is Ryan, I am 33 yrs old and was diagnosed with Stage IIIB nonseminomatous germ cell tumor of the left on 5 February.
My journey started out with a trip to the emergency room on 13 Jan where the ER doctor told me (after an ultrasound) I had a case of epydidimitis (infection) and gave me a prescription for percocet for pain and levaquin as the antibiotic. After a week with no relief or change, I went to see my primary doctor. Next thing I know, I am being referred to the urologist for a same day appointment. Another ultrasound was done, the radiologist determined that it was a tumor. Bloodwork done confirmed that I had tumor markers  (Hcg level 167, LDH 346, afp 7.4). At 8 pm on 20 Jan I was taken into surgery for an orchiectomy of my left . Everything went well and I was taken in for CT scans the following morning.
I went back for my two week follow up on 5 February and was given the diagnosis (Stage IIIB) and referral to the oncologist. tThe reason being is that they found that it had spread to my lymph nodes and my Hcg level was higher than before surgery (190). There is two nodes that have a mass within 2-5 cm.
Due to the snow storms here on the east coast, I wasn't able to see an oncologist until 17 Feb. That was a long two weeks. I am an inpatient person normally, and knowing that you have a disease that could be possibly growing by the minute is disturbing.
Went to the oncologist on 17 Feb, the treatment plan is for 4 cycles of chemotherapy using a combination of bleomycin, etoposide, and cisplatin (BEP) with cycle one starting Monday 1 March. Each cycle will follow the 5-1-1 path.
I am definitely ready to start both mentally and physically. READY TO PLUG IN THE ITOUCH WITH SOME GODSMACK AND FIGHT THE GOOD FIGHT. I also understand that everyone's body responds differently to the treatment. I was just wondering if anyone has any advice on diet/nutirition that worked for them during treatment. I am in the military and in good physical condition and am expecting to do some form of cardio exercise while going through this, but only within my limitations. But wanted a sounding board for diet/nutirition to help with naseau and fatigue.
If you have made it this far into the post, thanks for taking time to read and I appreciate any advice.
Fight's on
 

After radiation, what?

posted by amhere on 11:32 pm

Hi all,
 
I was diagnosed with Seminoma stage 1 in august 2009, underwent orchiectomy. I am residing at Nairobi. In nov 2009 i visited india for adjuvant radiation therapy. Now i am back in nairobi. The doctors in India said that i need to undergo a clinical chk up 2 months after radiation and a CT scan after 6 months.  
What does this clinical check up entail?  can it be done by my urologist here? or do i need to visit an oncologist? Can anyone give me details on the follow up required AFTER radiation therapy for stage 1 seminoma?
 
Thanks

I\'m good

posted by ItsAllRIGHT on 4:45 pm

Hello Group, My name is Alex and I was recently diagnosed with testicular cancer on the 5th of Feburary. I had surgery the next week on the 9th and boom--it was over. Prior to being diagnosed, I had noticed some changes in my left about five weeks prior, which concerned me so I set up an appt. with my primary physician and the ball got rolling from there (pun intended) :-). I didn't know what to think at first, but 'whoa.' It caught me off guard...I don't know if anyone else felt the same, but you know it was quite some news. But I gotta say that I am very thankful for the support I recieved from my wife, close family, and friends. This event, to me, will be a very critical moment in my life to make a positive change from health to schooling to relationships and my perspective on life in general. Once again, I am not sure how everyone else feels about their moment in life when the diagnoses was confirmed, but for me it was an eye opener. I just want to all, 'good luck with your journey, and live strong.'

Deterimination help.

posted by lilbundy on 10:05 am

I was recently diagnosed with cancer and had a left radical orchiectomy. My results are 95% seminoma and 5% yolk sac cancer which I'm told is not common in adults my age 34. I very recently had a ct scan which unofficially revealed 3 tumors in my lymphatic system one is 11cm the other is 7cm and last 6cm. My alpha feta proteins and hgc were raised and the urologist is waiting to see if they dropped following surgery.
It seems to be causing some doubt on my urologist on which way to refer me for treatment. Any help gratefully appreciated.
 

Testicular Cancer: possible surgery, any advice?

posted by lucasrobs on 7:36 pm

Hello,
My name is Lucas Somers, I'm 18 years old and a freshman at Western Kentucky University. On October 27, 2009 I was diagnosed with stage three testicular cancer. The next week I had my right removed and about two weeks after the surgery I started my first of three rounds of chemotherapy. About 4 weeks ago I finished my last round of treatments. since then I had a CT scan and it revealed that there are still couple tumors, one is in my belly and is the biggest one and the other in one of my lungs. As of now the tumor in my belly is the only one that is bigger than it is supposed to me at 1.2 cm long. I have been told that anything over 1 cm long is too big. And the tumor in my lung is .9 cm long. The doctors are not sure what these tumors are exactly, they could be one of three things: fibrosis(which is non-cancerous), teratoma(which can turn into a malignant tumor), and residual cancer that is malignant. There is a 40% chance of it being fibrosis, 40% chance of it being teratoma, and a 20% chance that it is residual cancer. After talking to my Urologist and Oncologist there seems two be two options from here. The first option is to wait and see if the tumors go down on there own and get another CT scan in 6-8 weeks. The second option is to have an operation called post-chemo RPLND where they would remove the tumor from my belly. There is no other way of knowing what the tumors are without having this operation. This coming Thursday, the February 11th, I am going down to Vanderbilt University to talk to an Oncologist and Urologist to get another opinion. But ultimately it is my decision whether to have the operation or not. as you can imagine, this is a very difficult decision, as I am very serious runner and am on the cross-country and track team at Western Kentucky University. If anyone has been through something similar or has any advice for me i would greatly appreciate it.

Thanks,
Lucas Somers

The definition of Irony - Today is World Cancer Day and I got a present

posted by ChiRushCyclist on 3:50 pm

Yesterday I was diagnosed with a testicular mass and Friday I have surgery to remove my . I find it very ironic that today is world cancer day.     I didn't know that I was supposed to get a present  - that’s so nice!!!  Thanks Cancer!!! I'm trying to deal with the whirlwind that is the preoperative process and feeling much like a pincushion.  Hopefully I found this in time; the mass is small and hopefully localized.   Now I’m really in the army - kind of got drafted (I thought they got rid of the draft! 
So many questions, so many feelings,
So here I am. I've been a long time supporter of Lance Armstrong since the Tour DuPont day's and have supported the Livestrong cause for some time now I'm in the trenches and looking forward to continue the fight. Hope to hear from some of you that have been through this process what to expect and some of the experiences you have had. 
 

Continuing the Fight

posted by Risenphoenix21 on 2:02 am

 

My name is Adam and I was diagnosed with testicular cancer in June of 07 at the age of 23 after having moved to Los Angeles earlier that year. Instead of pursuing the suggested treatment of having it removed I opted for an alternative approach as my father did with great success with both his prostate and kidney cancers. I did a 3 week detox cleanse at a health retreat that November where I could feel the mass breaking up so I felt as if I was on the right track. I continued a raw vegan diet and detox for the next 3 months as close to the program as I could but it became increasingly harder to maintain with my income and living/work conditions. The mass continued to grow and by December of 08 a year and a half later it had consumed the entire giving it the texture of a rock and I started experiencing pain in the and in my inner thighs. I went in for another series of tests and a CT Scan this time and it showed enlarged lymph nodes. I made the decision to have the orchiectomy back home with my parents to recover in March of 09. This was not my first genital surgery as I was born with a uretheral blockage that required surgery when I was 2 years old so having another one made me very apprehensive. The pathology determined that it was a semanoma. I returned to Los Angeles in June where my condition worsened. I began having back pain and trouble sleeping and various foods would cause me the very same pain from before. In response I kept to mostly a liquid diet which caused me to loose roughly 10 lbs in a month which revealed a lump in my stomach just to the right of my naval. My pain increased and I experienced decreased energy from not being able to sleep and I admitted myself to the hospital. After another CT Scan and blood work they strongly urged that I begin Chemotherapy at which point I packed up everything and returned to Florida as I had exhausted my bank account and no longer had insurance. The oncologist I met with recommended low-dose carboplatin chemotherapy which he guaranteed would not give me the typical hairloss and nausea side effects. I started the next day and by the 3rd day I was no longer in any pain and was able to eat normally again which gave me the greatest relief I had probably ever known. I continued treatments through the end of Novemember and had reduced the stomach mass by more than half. Then my bloodwork came back with increased tumor markers which my doctor said meant that the cancer had become resistant to the chemo and that the next step was the multi-drug heavy duty protocal that Lance had been treated with. This I was not prepared to do as my father and I did not feel it was necessary and it would cost me $50k. Over the last 2 months I have experienced similar but to a much lesser degree the same pain as back in June requiring painkillers, the mass feels as if it has started to grow back and I again have food sensitivity. A friend and respected biochemist strongly suggested that I start introveinous Vitamin C therapy because of the success it had with a man suffering with 3 simultanious cancers who was relieved of his pain and cured within months. I have an appointment next Monday with a doctor who offers this treatment. If this is doesn't work I guess I have no choice but to do the heavy chemo.
I have had the support from all my family, friends and co-workers during this ordeal and it has been one of the most rewarding experiences knowing that I don't have to go through this alone. However there are still many times all that support doesn't fill emptyness I feel almost daily. I often wonder why of all health problems I could have why testicular cancer? My thoughts keep coming back to my frustration with my lack of success with women and now with only 1 I feel even more depressed. I have plenty of female "friends" but no girlfriends or lovers and the lack of feeling loved I feel manifested a sickness in the form of this cancer. I feel that in order to truly conquer this illness that I need to solve this mystery of my love life. Has anyone else had similar feelings?

No Sign of Disease

posted by Bermelr on 12:41 pm

Hi my name is Ryan Bermel and I am 24 years old and just found out I have no sign of disease! This is the best news I have received! I was diagnosed Feb. 2009 with testicular cancer. I had the surgery right away to remove the tumor but the cancer spread. I started chemotherapy right away and had 4 rounds of it. This was the worst thing ever! I lost a total weight of 70 lbs! I lost all my hair and muscle! Finally once I finished my fourth round I was recovering for 2 months. My hair came back and I was getting my strength back and I started to feel good. I started work up again and start to pay my expensive medical bills One day at work I started to feel that pain again in my back so I called up the doctor and had some test done and sure enough the cancer had come back and spread into my lungs. My doctor recommend that I do radiation. I did not like this answer and wanted to get a second oponion. I did some research on the internet and found out that the doctor to go see in my situation was Dr. Lawrence Einhorn. This was Lance Armstrongs doctor. The best of the best. I called him up and he was currently not accepting paitens and owuld have to be on a mailing list. I explained my situation and he wanted me to fly to Indiana and have a meeting with him. So i booked a flight and was there the next day. After some test and a meeting he accepted me as a patient. I flew back to Colorado and told work what was going on and packed my bags and traveled to Inidana. I brought my wife and 10 month old son with me. Right away I started a stem cell transplant and then chemotherapy. I went through one round of regular chemo and then 2 rounds of high dose chemotherapy. This was the hardest thing I have ever gone through in my life. I had 2 tranplants and was in the hospital for 2 weeks straight for a total of 4 weeks. This is the hardest thing to stay in a hospital. I was so sick I honestly did not think I was going to make it.  If it was not for my family and god I do not think I would be here today. As of today I am recovering and just starting to get my hair back. I got a PET scan and got the results back and found out there is no sign of disease.  I am here to help others get through what I got through! I am here to answer any questions I have pretty much been through it all. Feel free to email me at ryan.bermel@gmail.com I also can send you a more detail story that I have written if you are intrested. Thank You and Live Strong!!

Raising Awareness for Testicular Cancer

posted by protectyourpair on 11:11 am

Hello Everyone,
My name is Andrew, most people call me Drew, but I am a 23 year old male that was diagnosed with Testicular Cancer on March 26th 2008. At the time I Simply had an Orchiectomy and after some more testing was found to be cancer free. Of course I went back to the doctor every three months from then on to have CT Scans and my blood work done, and for a year and 8ish months I was cancer free. Then in the beginning of October I went in for a needle biopsy of my Para-Aortic Lymph node. On October 16th 2009 I got a call from my doctor informing me that I did indeed have a growth of the Seminoma they had seen in my before, but now in my lymph node. So after talking with the doctor about the options, there really only was one and that was to start chemotherapy. 
So on November 2nd 2009 I have started my chemo therapy, and I have now goine through 2 treatments. While in for my second treatment, the drugs really started to effect my emotions, and the way I was feeling. I was starting to lose my want to eat, well really it became difficult because everytime I felt sick. I am going in for my third treatment this wednesday the 16th for 5 days so we shall see how this goes. I have been in and out of the hospital between my treatments too for one thing or the other. First it was thinking I had the Swine Flu, but there was something else going on, second was I went into Atrial Fib and had to spend the night in the hospital while they tried to get my heart to a regular rhythm, and the third unexpected was the trip to the ER for the giant blood clot in my arm from the PICC line I had for my second round of chemo. The swine flu incident and the bloodclot each kept me in the hospital for 6 days. Not fun!
Anyways, to my point. I am currently maintaining a website on my daily experiences with cancer, as well as in the preliminary stages of starting a NPO to thats purpose will be to raise awareness for not only Testicular Cancer, but any other kind. I am starting with a focus on testicular cancer though because I feel that young men are not really aware enough of the risks and signs and symptoms of Testicular Cancer. Throughout my treatment, all the things I have had to go through and endure have only made my spirit stronger to want to help people. 
my website is www.astoldbyatech.com, and that is where i am currently doing a daily blog and picture updates while I go through my treatments, and even beyond that. I am also currently working on the website for my Awareness Campaign which is called "Protect Your Pair". The website for that is www.protectyourpair.org, on each site you will find email addresses to contact me.
I am currently working with a close friend of mine to get all of this up and running in the next month or so, hopefully by the time I am done with my treatments so I can jump right into it and start trying to help people like my self and so many others that are affected by cancer, whether it be a survivor, family member, friend, or just someone who wants to know more. 
You can also follow me on twitter under the name @toldbyatech or track the progress of my NPO under the name @protectyourpair
Thank you everyone for reading my blog!
Andrew

Life changing experience.

posted by robalot82 on 2:02 pm

This is my first time ever blogging but i was diagnosed with testicular cancer at the age of 20, in early september and i have had a long and crazy ride to this point.My doctors did not catch it before it spread into my abdoman but it was only to one lymphnode so it wasnt to bad,but for about a month my doctor was saying telling me to have major surgery to remove all lymphnodes in my abdoman,but after about 2 to 3 weeks in october he finally said that i should just chemo and get it over with as soon as possible.I've been on hardcore chemo for about 3 weeks now and its changed my outlook on life completely.Ever since i found out i've keep this attitude about me and i have had many people complament me on how i'm dealing with cancer.So I just found out today that i will be done with my treatments at the end of December.If theres anything that I can help people with I am more than happy to lend a helping hand.Just remember theres nothing that God gives us that we cant handle,with help from family and friends you can do anything,just keep a positive attitude and a positive outlook on life and it makes your bad days alot easier to deal with.

Just Diagnosed

posted by cnovinger on 5:28 pm

So I went to see urologist about getting a vasectomy - just had our third kid and wanted to get it out the way. During the exam the doctor said he found a lump. Even after he showed me I still coudnt feel it. I went around the corner for an ultra sound and within an hour had surgery scheduled for a right side orchiectomy and left side vasectomy. I had surgery yesterday, and everything went fine.  I guess I understand the next few steps, but it feels kind of weird to be just entering a chute of treatment and tests. I guess its the right thing to do, but my mind can't keep up.

my husband has testicular cancer and is in his frist cycle of chemo

posted by amanda_reuter on 5:05 pm

Hello All, my husband is 25 and was diagnosed with cancer September 21 and had surgery to remove the right testical on Sept 24. He was in Iraq when diagnosed  and had the surgery in Germany. Now we are at Walter Reed Army Medical Center in DC. I was hoping we could find out more about the side effects of the chemotherapy. He is having somewhat severe diarrhea and is honestly hoping that it is normal. Maybe the magnesium is the main cause or just not eating the right foods. He is going on a more strict diet and drinking more fluids. Any answers would be appreciated. Thank you.

nervous

posted by BRadC1123 on 9:37 pm

Well I am a 19 y/o student and was diagnosed with testicular cancer last week and am going into surgery in less than 8 hours. I am a little nervous and not really scared of the surgery but what may come after. Being a college sophomore I was not expecting to be dealing with this and am honestly confused and wondering what this means for the rest of my life. Reading other posts and seeing a lot of the success people have had is very encouraging and helps me deal with the "what ifs" and the future. I hope the best for everyone else on here and will post after the surgery and I get the results.

welcome feedback - 22 year old son has testicular cancer

posted by catgirl123 on 4:41 pm

My 22 year old son was recently diagnosed with testicular cancer...had already metasized to lungs and brain, etc.  Surgery, BEP chemo and brain radiation was begun immediately...then one of the brain tumors bled.  Needless to say, quite a setback.  Radiation was suspended.
He is now home, doing chemo on an outpatient basis, in the middle of third round, with one more round scheduled.  Then tests to determine next step. 
Anyone have feedback from a similar situation? 
Thanks
 

I am confused and need help

posted by mnkiwiguy on 9:24 pm

 Hello Everyone!
  First, thank you for taking the time to read my post. This is a bit difficult, ok quite difficult for me. I guess for me to ask for help, you must first know a bit about me.  I am an identical twin.  My twin was diagnosed with testicular cancer in Oct 2006. He had an orchiechtomy on his left , did 20 sessions of radiation and 6 monthes later had the removal of his right for the cancer had returned/occured again. Again he had surgery and radiation and was on his way to recovery when it was discovered he had ependymoma. He again went through surgery and treatment and is on a path to recovery. I have always been scared I would follow his path. I have been HIV+ for the past twelve years. I have very regular check ups and doctor visits. My medications have created some mutations in my HIV preventing some from being effective. For a long time I was doing well but within the past year my viral load was uncontrollable. I currently am on Viread, Viramune and Ziagen. I was found to have Seminoma in my left and had it removed on Aug 27th. The follow up CT scan showed enlarged lymph glads so a few were biopsied. No cancer was found but they are "abnormal" I was told I had Stage 2A cancer. I never heard of a Stage 2A. I begin my radiation treatments next week on September 24. I begin with 20 sessions. I was told I could very easily be increased to 36-42 treatments but my T-cell count needs to be closely monitored. My last blood work for my HIV had my T-Cells at 298 and my viral load at 279,000. Today I came home to a notification from my State sponsored medical plan the my insurance would be canceled on the 30th.I only work part-time (for Smith&Hawken) so I do not get insurance or COBRA through them and the company expects to be closed by mid-November. I am trying to apply for Social Security but am told that will take a few years. I am so scared. 
   I realize my twins case is different from mine. I know my HIV is a big factor in my treatment. I have read conflicting reports as to which is better radiation or Chemo. It is very hard for me to find anyone who has battled these two diseases at the same time. I live very far from any family although facebook is a Godsend to me. I would rather be proactive and aggressive in my treatment of my cancer to prevent any chance of it occurring again.
 I do not feel comfortable with the answers I get from all my doctors as I sometimes feel care is based more on cost/coverage. I had expected or rather hoped for a group consultation between them all to set up my treatment plan but I guess I watch too much cable TV.
My questions begin with:
 Has anyone here dealt with HIV and Seminoma ?
What is the effect on Tcells and viral load between radiation and chemo?
Is it wise to get another opinion on treatment? or am I just wasting my time?
How expensive is it?
Are there any other identical twins that have also both had the same cancer?
Thanks again for reading and any suggestions for resources.
 
Respectfully,
Marc
 
 

Chemo Question - Carboplatin

posted by twixson on 10:54 pm

Hey All, first post.
Stage I, seminoma treated with orchiechtomy, all markers good and no spread.  I elected today to recieve a single high-dose (950mg) of Carboplatin.  Although it has only been a few hours since treatment (I feel just fine NOW), I am wondering if anyone else had a single large dose of Carboplatin and had any hair loss, what you did and how long it took to fall out (and grow back)  -- the anticipation of the unknown far outweighs any other side effect. 
Hoping some one can clue me in on their Carbo treament in high dose.
My thanks and thanks for this Group!
tw

Stage 3 - Survivor

posted by WillGutierrez on 2:34 pm

Hola!  I am a lucky man and each day it just keeps on getting MO Betta!!  Diagnosed with Stage 3 - Testicular Cancer in Oct 16, 2001
Cleared from treatments in  Dec 2002, Thank God for MD Anderson! 
Then went for the "Trifecta"  = Cancer + Bancruptcy (self employed at the time of diagnosis and treatment - lost it all)  + Divorce = the Perfect Stress Ball Trifecta
I am Blessed to say all is going well - Cancer Free for 7 years + got a great JOB + recently met a Great girl... 
Here is the question?   New girl aka wife # 2 is wanting to have children....  If Lance Can DO It, can I ?? (a mere mortal) hope for such a blessing? 
Thank you for your kind advice and direction. 
signed, everyday is Extreee ....    Memo G in Austin, TX  wgutierrez@moneygram.com  

Waiting for results

posted by suzywoo on 3:43 pm

Hi Everyone
What a great group this is!
My brother had been having a problem on and off for 2yrs. He first noticed it when he had been using a posture chair which seemed to put pressure on the testicles. Anyway he went to the docs as he had discomfort and burning sensation. Doc said it was probably epidimis cyst and gave anti-bios which seemed to work.. However it flared up again, all in all he visited docs about 6 times and was given reassurance and sometimes anti-bios. GP finally referred him for ultrasound as was very abnormal and he was worried. Ultrasound was inconclusive (house doctor said the lesions could be scar tissue) so orchiectomy was done about 2 weeks ago as consultant suspected a tumour. He was then asked to go for CT scan on Friday. He hasnt seen consultant to discuss path report but I guess it must be cancer or why would they bother with CT? He doesnt see consultant for another week. Im worried because he had a problem 2 yrs ago! but GP said it certainly hadnt been there when hed examined him but sometimes it was too painful for him to be examined. Can tumours co-exist with cysts? When I read stories men always find a lump but my brother never did. Any ideas anyone? This wait for results is awful.
Many Thanks
Sue
 

stomach pain during chemo

posted by linglingx on 8:21 pm

My husband started his 4XEP last week. He just finished the the first week of chemo. He was doing fine in the hospital and came home last Friday. But during the weekend, he started to have stomach pain. It got worse today (Sunday night). Is this a normal reaction? He has nausea also, but that can be controlled by the anti-nausea medicines.  I am very concerned, should we go to the ER? Anybody else experienced that?