TC-Cancer.com - Testicular Cancer Information & Support Forum

Treatment Advice!!!

bolts28 — Thu, 17 May 2012 03:47:58 GMT

Hi all. My 18 year old brother has recently been diagnosed with Stage 1 non-seminoma testicular cancer. He had an orchiectomy at the end of March and his pathology came back as 90% embryonal, 5% teratoma and 5% yolk sac.

Following the surgery, his CT scan and blood markers are now negative. His doctors (he has had 2 opinions from urologists) are suggesting to now do RPLND surgery as a preventative measure but they also mentioned chemotherapy as another option. In your experience, what do you think will be most beneficial for him considering the short and long term side effects of both treatments and that he is so young and an elite athlete? Is RPLND a better option at this point?

Any suggestions/experience/advice would be appreciated since this is a tough decision to make. Thank you!

Concerned Girlfriend....

TCGirlfriend — Thu, 17 May 2012 02:30:29 GMT

So this is my very first blog ever.... Hello!

My boyfriend Daniel was diagnosed with cancer in Feb. He's 27 years old, former member of the 82nd Airborne in the Army. He had surgery to remove the tumor in early March and unfortunately his AFP levels were elevated so he is undergoing 3 rounds of BEP. He is currently in the hospital now doing his second round. The first one was scary as anything! We had no idea what to expect. Luckily his nausea and such has been controlled really well through medication so this isnt quite as bad as he was expecting. He has had some issues with his port but his CT and ultrasound today didnt show any clots. His hair and beard did fall out last Wednesday so now hes shaved, which I think he looks good either way! So far so good I guess. But then we still have two more days here and then he has another week beginning of June with a Bleo treatment every week in between. Its been a rough road with the not knowing. The reason why I'm blogging is we did find out today that the average AFP levels is around 6.3..... his was at a 22.0 AFTER surgery and it has only dropped to 18.9 after 3 weeks of chemo. Does anyone have any suggestions of what is going on or the normalcy of this?? We are pretty freaked out! Any help is greatly appreciated! Thank you!

-TCGirlfriend

Lymph nodes still growing

eodtech2001 — Wed, 16 May 2012 19:38:45 GMT

OK I have a question for the board and maybe you guys can help. last Thursday I woke up with my left leg numb. Git up to use the bathroom and notice my lymph nodes in my groin were swollen. So I make the call to Mayo clinic, So they have me come in the next day. Blood work showed that HCG level was still less than .5, AFP was at 3.1. The CT scan showed that my lymph nodes have grown in size from 2.1 cm in size to 2.7cm in size depending on which node you are looking at. They basically all increased in size by 1 cm in 5 weeks since chemo. So now I am having a biopsy done on Monday with a follow up with Onco on wednesday. Can some please give me some insight as to what is gong on with my lymph nodes. The battery of blood test did not show an infection or anything like that. Sugar level was 102, but my RDW CV was at 17% and my MVC was still in the normal range but elevated also. Anybody have any sight as to what may or may not being going on?

Stormin Normin

Feb 22, 2012 removed left boy,Stage 2 TC pure seminoma 4 to 5 lymph nodes showed positive on CT scans for spread.

Embryonal Carcinoma: T2 - Treatment Advice

DBR82 — Wed, 16 May 2012 18:57:46 GMT

Hey all!

So I got my biopsy results back today. T2 embryonal carcinoma.

From the sound of things, looks like I'm going to have to have Chemo and/or RPLND.

I really, really, really don't want to have RPLND surgery.

My tumor was 19 mm wide. Pretty small, and I caught it pretty early. I'm having the CAT scan soon to see if the tumor has spread into any of my lymph nodes.

Can I just choose to do chemo and then surveillance?

Thanks all.

(_)(X),

Brett

What to expect after RPLND?

BigBoss32 — Wed, 16 May 2012 18:35:40 GMT

Pre surgery
Blood Markers Negative
CT Scan Negative
Chest Xray negative

Pathology report
Mixed Germ Cell--85% Seminoma, 15% Embryonal Carcinoma
LVI--Identified
Tumor confined to testis
Spermatic cord is negative for tumor
Pathological Tumor stage--T2
Size 2.2 cm

So my Urologist says RPLND is the next step. He is sending me to a Surgical Urological Onco at Jefferson University Hospital in philly who trained at MSKCC so I am guessing he will say same thing. Also getting a second opinion at Fox Chase Cancer Center with their head guy.

My questions is what if any treatments will i need after the RPLND if I go that route or if my lymphnodes come up clean i am good except for surveillance. Thanks

Is 3rd round of BEP still necessary if AFP dropped to normal?

a mom — Wed, 16 May 2012 16:34:28 GMT

My son's last blood test showed that his AFP dropped from 22 to 3.8. He just completed his second round of BEP. He would like to skip his thrid round since he feels if his AFP is normal there is no need and further chemotherapy will only be harming his body.

I don't have an answer for him, but I know the protocol is three rounds. Also, when he got his first blood test, his AFP was normal even with the cancer.

I don't blame him for being completely sick of this and apprehensive about the long-term effects, but I would like him to do everything it takes to kill this thing for good.

Can you help me enlighten him? (or me?)

Thanks,

My Son Just Diagnosed

stormie — Wed, 16 May 2012 12:59:28 GMT

One week ago my son, Matt, was diagnosed with testicular cancer. It was only two weeks after his 27th birthday. Matt is neurologically impaired, has Asperger's Syndrome, and has a chromosome abnormality--XXY instead of XY. It's called Klinefelter's Syndrome. 1 out of about 500 males have it and many don't realize it. It's one of the top causes of testicular cancer. Males with Klinefelter's present with under-developed testicles, low or no sperm count, low testosterone. For some reason, there are urologists who don't realize it's a syndrome. We knew Matt had a strong possibility at developing testicular cancer but, as many of you caregivers know, it still brings you to your knees when the doctor looks at you and says, "It's cancer."

My questions are: It seems many here know all the acronyms and abbreviations used in path reports and blood work and staging. I'm having a hard time understanding what it all stands for or means. Is there a place here or elsewhere that gives the meanings of all those results? Also, his father and I will always be his caregivers, but we're not his legal guardians. Do we have a right to copies of all his reports? I've asked his urologist and primary care doctor for copies, and neither seem to hear me or choose not to. My user name may be stormie, but I'm really a very quiet person. (Of course, my husband and sons would laugh at that!)

Anyway, I hope this is the right place for my post, and thank you for reading this. :)

ETA: My son had his left testicle removed last week. Tomorrow I take him to the urologist for his post-op appointment and for what comes next. Sorry I forgot to include that!

All Clear!

Jay68442 — Wed, 16 May 2012 02:43:22 GMT

Got my results today and everything is well within the normal range. 24 years ago I was diagnosed, 22 years since I finished treatment. So tomorrow I will do a 22 mile ride to celebrate.

Steroids during chemo and non-stop chatter

AustinsMom — Wed, 16 May 2012 00:49:32 GMT

Austin had such problems with a low ANC (90) last week, followed by fevers and mouth sores, so we ended up with two separate trips to the ER and 5 days in the hospital, coming home Friday Evening.

Consequently, upon the Doctor's recommendation, Austin had his braces removed yesterday, which meant we delayed Round Two until today. For the past 4 days, Austin has been fairly quiet...... not sick, but just very tired, not much appetite, but staying hydrated and really bored when awake, not knowing what to do with himself. He repeatedly said the TV, computer and even fan in his BR made him dizzy so he spent a great deal of time lying down.

So...today started out the same way until about midway through his chemo, when he began to perk up. He fell asleep for awhile and was able to watch TV in his room. Suddenly, he decides to cruise down to the Teen Room and starts playing Video Games, but keeps walking out to the parent area telling me how great he is doing in Madden Football....... and then just going into every single detail. About that time, he was finished for the day and we left. But the non stop chatter since is driving us up the wall!! A week ago I could barely get him to carry on a conversation with one word responses. Now Austin CANNOT stop talking.... and says he's tired one minute then suddenly seems to feel energized!! I don't know that he was given steroids today, but could it be that he was and this is why he is acting like this? ( He had Kytril and Emend I know for sure). I'm afraid he's not going to be able to sleep......and the rest of us need our "beauty rest" !

Any advice would be appreciated!
Thanks,
Diane

3 Months All Clear!

David72 — Tue, 15 May 2012 16:19:17 GMT

:D CT Scan, chest x-ray and bloods all clear today! Its like someone has pressed play again on a DVD that was paused for the last 3.5 months. Given that this is the first one, it feels really significant. Even though I don't post much, I read lots and always feel the support and knowledge reaching through the posts.

Cheers,

David.

Just had I/O... now my right testicle is hurting

DBR82 — Tue, 15 May 2012 13:32:07 GMT

Hey guys!

Had an I/O on my left testicle last Monday. Healing up just fine and I'm getting around pretty easy. Still kind of sore, but everyday is better.

However, i'm having unexplained pain coming from my right testicle. Not sure if its the testicle itself, but I'm not sure what's going on and I'm getting kind of scared. I really only notice the pain when I sit.
The ultrasound showed no tumors or masses in the right testicle. What's going on??

I go back to the Urologist tomorrow to get the results of my Biopsy.

I can handle losing one testicle, but I don't if I can handle losing both.

Has anyone had this sort of pain after their I/O?

Thanks!

(_)(X),

Brett

Happy birthday Scott!

Aegletes — Tue, 15 May 2012 11:24:09 GMT

Happy birthday to the guy who keeps things humming along here, raises a tremendous amount of resources and awareness on behalf of LIVESTRONG, and continues to help so many.

Happy birthday, Scott!

First surveillance appointments this week

1lessball2answr — Tue, 15 May 2012 00:47:29 GMT

Hi all,

Well, I'm at the three month mark now so it's time for some CTs to check in on everything. I can't believe it's only been three months -- it feels like 3 years since thing whole thing started!

Needless to say, I'm a little anxious (but what else is new?). I had some ingunal and retroperitoneal lymph nodes show up on my pre-op CTs that were all under 1cm and I'm praying they haven't gotten any bigger. Maybe they'll be gone completely (does that ever happen?! :D)

Anyway, CTs are tomorrow (Tuesday) and results are on Thursday. Send good thoughts :) and as always, thank you all for the support!

Patrick

Pathology Report-Treatment advice

BigBoss32 — Mon, 14 May 2012 20:56:24 GMT

So I got my report back and it is as follows: Surgery was May 7th

Pre surgery
Blood Markers Negative
CT Scan Negative
Chest Xray negative

Pathology report
Mixed Germ Cell--85% Seminoma, 15% Embryonal Carcinoma
LVI--Identified
Tumor confined to testis
Spermatic cord is negative for tumor
Pathological Tumor stage--T2
Size 2.2 cm

Urologist told me next step that is usually done in this instance is RPLND not chemo. We have a meeting with Oncologist set up for June 6 (is this too long of a wait). So I guess we will talk to him about options. Also should we have new scans done in the mean time to see if anything new has happened? Any opinions are appreciated. Thanks in advance.

4 years

TC Destroyer — Mon, 14 May 2012 20:44:12 GMT

Dr. Einhorn considered this my 4 year. I was confused since it has been 3 years since HDC but he said since it was chorio he goes from start of chemo. All clear!

Spindle Cell Tumor

BadTwin — Mon, 14 May 2012 15:51:29 GMT

Hi All-

I am wondering if anyone out there has had any experience with a spindle cell tumor. I have had a preliminary result that has gone to Johns Hopkins for further testing, that said it was a spindle cell tumor, possibly Leydigs but not all of the markers were present. The partial information I got was a bit concerning, and part of me wished they said nothing.

The info was, the tumor was malignant.
It is a apparently a spindle cell.
Sent for classification to JHU, Dr. Epstein's lab.
Reiterated that it was malignant, said it is good that it is out.

I had an appointment with a different doctor on Friday, who called the pathologist who did the initial work on the biopsy, no determination of benign or malignancy has been made. He said nothing should have been said until the pathology results are final(I agree). I guess my frustration lies with, getting partial information that is factually inaccurate, and how to process it.

As this is a fairly rare type of tumor, I was wondering if anyone had any sage advice regarding Leydig, or other 'mysterious' tumors and dealing with the lack of info that is available. And what were your experiences with benign or malignancy on this type of tumor.

Thanks

BadTwin

RPLND--Open vs Laproscopic

BigBoss32 — Mon, 14 May 2012 14:45:31 GMT

So I google this question and the links I would get are from 2005 when the process was relatively new. How far have we come with this surgery (Laproscopic?). Obviously would rather not go through open surgery. All help appreciated.

2 Week Post I/O Markers

TonyTigger — Mon, 14 May 2012 13:47:53 GMT

I heard this morning from my 2 week post I/O markers.

AFP 31 to 12
HCG 32 to 14

Could there be any half life issues or do I need to accept this as bad news? Thanks for opinions.

Need some advice/help with tumour markers

bryce-ord — Mon, 14 May 2012 00:29:50 GMT

At the time of my diagnosis all my Tumour markers came back low/negative. I never got a copy of them at the time, as it was thought to be a lab error. Treatment started ASAP, and I never got time to do any real research. As it stands now, it looks like the original lab report may have been correct. If anyone could shed some light on what this means it would really help.

Pathology: Pure Yolk Sac

The Timeline:
March 16th - Ultrasound confirmed testicular mass.
March 22rd - Neck lymph node enlarged
March 23rd - Fine Needle Aspiration of neck node (yolk sac cells found)
March 27th - AFP <1.3 ug/L BHCG=2.0 IU/L (thought to be lab error)
March 30th - CT scan confirmed enlarged lymph nodes in abdomen and neck (all under 3cm)
April 2nd - Orchiectomy preformed
April 5th - AFP=1.3 ug/L BHCG<2.0 IU/L (oral Etoposide x 3 days started)
April 10th - First Cycle BEP started
April 15th - Neck Lymph nodes reduced 75%
April 16th - AFP=2.2 ug/L BHCG<2.0 IU/L
April 27th - AFP=1.9 ug/L BHCG<2.0 IUL
April 28th - CT Scan Chest/Neck showed lymph nodes back to normal
April 30th - Second Cycle BEP started
May 1st - AFP=1.9 ug/L BHCG<2.0 IU/L

I am coming to the end of my second cycle, and will see my Oncologist next week. My original protocol was 2-4 cycles BEP. And I am just starting to wonder if I should push for a reassessment before starting the third cycle. I am more that willing to do 4 cycles if required. But now that I have developed a blood clot (less that 6" from my heart). I am becoming more concerned about my general health, than just becoming a Cancer Survivor.

Any info anyone could give me on what my tumour makers are doing would really help.

Happy Mother's Day

dc67 — Mon, 14 May 2012 00:17:44 GMT

I know it is late in the day, I've been with my family and then traveling back up to Indy. I just wanted to wish all of you mothers out there a happy mother's day. You are all such an example of love and sacrifice. I hope you have been able to enjoy the day.

CT scan and blood work this week...

hbr777 — Sun, 13 May 2012 13:24:10 GMT

...and the nerves start jangling a bit. Not as much as in the past, but still.

Last week Luis had a coughing fit - he had something in this throat - and I had a little panic, since coughing was the symptom that set off the whole cancer journey.

It does get easier for me the farther out from treatment we get but it still is stressful. Do others feel this too?

Take care,

I/O - Running

TonyTigger — Sun, 13 May 2012 10:58:02 GMT

I have noticed some of you guys talking about working our before and after surgery. How long after your I/O did you begin running again? I would love to run a little before I start BEP.

Released from hospital and now Thrush...

Ny01 — Sat, 12 May 2012 23:01:59 GMT

Literally leaving the hospital today after my 2nd round of in patient BEP.....my throat was burning up bad on drive home and I looked into mirror of car to see tons of white spots coating back of throat. Bad enough to already feel so utterly weak, nausous, brain fogged walking out of hospital and now my throat is making me want to gag. Doc called in nystatin mouthwash and a separate lidocaine vicous mouthwash. I pray this works as I'm so weak and can't handle another ER visit. Anyone know if this is normal or goes away quickly? It's hard enough to eat and drink so much water without throat sores!! :confused:

Just Diagnosed, many questions in mind.!!

Jado — Sat, 12 May 2012 22:42:39 GMT

Hi,
I'm so glad to find this forum, many worries I managed to deal with through reading here.
Right now I'm waiting for orchiectomy of my right testicle that is scheduled on May 15.

I have four concerns:
1- I felt lump a long time ago, didn't do anything as I thought it's normal, because I couldn't compare my right test with the left one.(I have varicocele in my left testicle, the healthy one, which makes it very hard to feel the testicle itself).
on April 26th decided to go to urologist, did US & testicular tumor was confirmed. After that, blood tests & CT scan. I finished all those tests on May 3rd. Then I had to go to another city to look for better hospital which delayed the surgery, plus I was advised to do sperm banking which takes time too.
This Tuesday I had appointment with doc. in good hospital which will do the operation. My surgery is scheduled on May 15th. I'm sooo worried if it's too late & the tumor has spread already.!!*

2- They did semen analysis last tuesday for sperm banking, but sadly no sperms were found. they said number of sperms in the sample was 0, even though I was careful with the instructions. What does this mean? no chance to have children in future?! *I'm single & 26 years old. & pretty sure one day will come when I need to have kids.
I'll do another analysis on monday; the day before surgery. I hope they find something.

My doc. was talking about doing biopsy from the left testicle to look for sperms; should I tell him to do this in the same time of surgery if possible? or later? which is better? or should I neglect this issue for now?

3- My doc decided to do another operation in the same time to fix the varicocele in the left testicle because he said that this problem effected the size of the testicle to be shrinked down. Any opinions, please? doesn't matter both surgeries together?

4- My tests results are as follow:
US: Right testicular germ cell tumor.
CT: Same finding, size of 34x25 mm. Other organs in abdomen, lungs & pelvic are clear.
Chest X-Ray: I don't know the details yet, but the nurse said everything is good.
Blood Tests:
AFP: 2.78 ng/ml
LDH: 432 U/L
B-HCG: <1 mIU/ml
ALKP: 66 U/L
GGT: 18* U/L*

Any thoughts about type of cancer? & treatment beyond*orchiectomy?

Thanks for reading, I appriciate it. Wish me luck

Blood Clot

bryce-ord — Sat, 12 May 2012 22:35:16 GMT

Well,

Just got back from the hospital.
I have a blood clot in the vain my PICC Line is located in (Collar Bone area). The clot is not too big, blood is still flowing past it. Only 2/3 into my second cycle. Chemo is becomes more fun each day. But we are passed the halfway point :D.

The funny part:
I had blood work done 3 days ago. They said my levels are "amazingly normal" (other then my Platelets being a tad low). And now, 3 days later, I am on blood thinners.

I am stating to think PICC Lines are some serious BS (I am on my second one, and now it has a clot) :p

u/s positive, bHCG negative, a-fetoprotein not available... doc wants an MRI?

road trip — Sat, 12 May 2012 15:33:16 GMT

Utterly impressed by this forum. Wow, what a community! I've been lurking for a few days (although I wish I found you sooner) trying to piece together "what to expect" and so far, my experience has been typical of everybody else, albeit a bit slower.

To that end, I have a bit of concern with an apparent (to me) lack of urgency by urologist. The short story is that each step in the process is taking a week+ and he is moving in a very sequential way rather than going full bore...

Where I stand now (per the title) is that I have classic symptoms, an obvious lump (albeit small.. found early), the "light test" was positive, and the ultrasound was positive (blah, blah, blah.. "hypo echoic density, most likely seminoma... small, right epididymal cyst... blah, blah, blah"). It was only after receiving the results for the u/s did the doc draw blood (Wednesday).

So I'm eagerly awaiting the results which were expected on Friday - - and to me, it's already a foregone conclusion that me and Righty where going to part ways. Finally talk to my doc on Friday night (like, 7:30 PM) and he says that the b-HcG was normal and we'd wait for the results of the AFP on Monday and then... he might refer me for an MRI with contrast.

All of that being said, I haven't read anything where an MRI is part of the diagnosis. I mean, if it is "negative" what is that supposed to mean? Would that rule out TC? I doubt it... in my research, simply the u/s results along with the physical symptoms should equate for i/o, yes?

So.... today is "find second opinion urologist" day with the expectation of seeing somebody on Monday and hoping for surgery on Tuesday or Wednesday so I can get on with life!

Any thoughts on the MRI thing?

Any feedback would be appreciated!

road trip

Treatment??

BigBoss32 — Sat, 12 May 2012 14:57:50 GMT

So I just had my right testicle removed. I was told that it is cancerous and a nonseminoma 2.2cm tumor). The doctors words over the phone was that it had what looked like a little lymphovascular invasion. He said the cancer was all within the testicle. Blood tests all came back fine and CT scan and chest X-ray were clear. also he said it was caught early. We are meeting with monday to talk over the treatment options. He said the reason it can not just be monitored is because of the as he said "little" LVI. Not sure if there is such a thing as "little" but whatever. So I was just wondering if anybody has an idea what the possibility are as far as treatments?? Is it just chemo? or more surgery? both? Thanks in advance. Internet is great to get help but also scary!!

1 year All Clear

Chuck69 — Sat, 12 May 2012 04:44:11 GMT

One year out from my last does of EP and my CT scan is All Clear....

One year all clear :)

samiam — Sat, 12 May 2012 03:53:01 GMT

Hi Everyone,

It's with immense joy that I am positing that my husband just passed his one-year mark and the bloodwork was come back all clear. It's almost impossible to believe that one year ago we found out. I have to say that while this has been one of the most challenging years of my life (for a variety of reasons, juggling this anxiety, a PhD and a full time job) I know that we are some of the luckiest people in the world.

I just want this post to be out in the Universe... as a concrete example of the 85% who do not see a recurrence in the 1st year.

My thoughts are with everyone who visits this site, and my wish for everyone, is many 'all clears' to come.

~Samantha

BEP ???? Questions about Lung issues?

Smilemjc22 — Sat, 12 May 2012 03:44:34 GMT

Need some help. Steven is on his 3rd and hopefully final round of BEP. He had a lung function test, and it has decressed capacity from 87 down to 83;
doctor says we have to stay with the bleo to kill the cancer, and then time will tell about what it does to the lungs. I know their are obvious risks, but I was wondering if anyone has had this happen, and if anyone has had a long time cure witht he bleo without long term breathing problems. Would love to hear what all of you have to say. Thank you so much.

Steven's Mom