Just diagnosed... new member

[kellyrulez]

hello, I'm a 31 y/o caucasian, and most likely a new member in the club. This forum seems to be a great place to share information with others.

anyways, here's my story in (early) progress: last week I felt an odd hardening in my left testicle and immediately thought of testicular cancer. checked the internet the next day for TC symptoms which then confirmed my initial suspicion. I then scheduled an appointment for last friday with an urologist/surgeon here in honolulu. Dr. David C. Wei examined both testicles and pointed out that the hardening was a testicular mass and that I needed an ultrasound and blood test to see if it's TC. I had my blood taken and got the ultrasound the same and went back to Dr. Wei on saturday to discuss the results.

the ultrasound confirmed a solid mass in my left testicle, the tumor markers were not elevated according to Dr. Wei (AFP 5.1; LDH 182; HCG <2). I'm a newbie and couldn't yet find conclusive info on the internet if these results are indeed in the normal range (maybe one of you guys knows?).

after some communicating w/ my insurance and their confirmation that they cover all costs 100% (except for banking sperm), I'll undergo I/O this friday morning. I also hope to get an appointment for cat scan and chest x-ray early next week.

I'm kind of nervous at the moment as I don't know the type and stage yet. I am also concerned about the kind of care that I can get here in hawaii. I've read on this board that it is a big advantage to be treated at a center of excellence and I'm not quite sure if there is such an institution here. then again, it's probably too early to worry about this since I don't know anything yet about the tumor etc.

I also briefly pondered about the prosthesis thing, but I guess I'll hold off on that for the time being. Dr. Wei wasn't enthusiastic about it, he definitely didn't encourage me, and the experiences that I've read here are also pretty mixed.

so I'm looking at surgery in two days and hopefully not too much pain over the weekend. I also hope that I will know more around this time next week. any info/input/help on your part is greatly appreciated. I'm glad that I found a place like this!

[Ski11181]

The good news is you are well on your way to being cured. The I/O is an important first step. After that is the waiting for the pathology report. That was the worst part of the whole experience for me waiting for the unknown. Fortunately everything came back good for me well as good as it can.

The one thing that I remind myself of is that testicular cancer is argueably one of the easiest cancers to cure. I am not saying the road will be easy and with out doubt but with a >95% survival rate how can you argue with that. You have found a great site to help you any questions you have there is a ton of experience on this board. I know they have helped me deal with my experience in a more positive light then I could of ever imagined. Good luck on your journey and I know you will come just fine on the other end.

[fuse929]

I am also concerned about the kind of care that I can get here in hawaii. I've read on this board that it is a big advantage to be treated at a center of excellence and I'm not quite sure if there is such an institution here.

The I/O is a fairly simple procedure, and doesn't usually require extra special expertise to be done effectively. I'm originally from Pa, only an hour away from UPenn (center of excellence), so I felt a little nervous having my operation done down in good ole' Mississippi where I live for grad school, but I assure you I got top-notch care. I'm not sure about the exact tumor marker ranges either, but the fact that your doctor noted that your blood was normal is a great sign! You will be sore after the surgery, but it is by no means unbearable. You will be walking around within an hour of the surgery, and most likely be up and around your house within 2 or 3 days. Good luck, hopefully it comes back benign!

Bobby

[Scott]

Welcome to the forums. There's still a small possibility that what you have isn't cancer, but most solid masses in the testicle are. Your blood test results are all in normal range. Cancer can't be assumed until AFP is about 25 ng/mL, and normal hCG is below 5 mIU/mL. Your surgery later this week will be over before you know it, and you're on the road to being cured. Keep us posted.

[dadmo]

Center's of excellence are a very important component to successfull treatment of rare cancers but I don't want to make more of that then necessary. You may want your doctor to consult with a center as to the staging, if you should need treatment (chemo/radiation) that can be done almost anyplace under the direction of a center. Of course with you are most likely going to be cured just by removing the primary tumor (testicle).

[Fed]

Hey man,
It's great that you have found the Forum. You will find a wealth of information and support here. It's great that you have been diligent in taking care of business. The I/O is a fairly easy surgery that should take around 1 hour to complete, and, in most instances, is performed as an outpatient procedure. You'll be sore for a few days, but within 4-6 weeks, you'll be pretty much back to normal.
You should definitely get going on the radiology front, as well. That, combined with the bloodwork (which looks good, so far) and the pathology resulting from the surgery will give you the entire picture on what sort of treatment will follow. In the meantime, rest up and get geared up for tomorrow. TC is by far one of the most (if not the most) curable cancers out there, so rest assured you will be fine. Take care dude,

[kellyrulez]

hello,

thank you very much for the replies, I greatly appreciate any info. how does the process usually work, i.e., how did it work for you guys?

I'll undergo surgery tomorrow, I have an appointment for cat scan and chest x-ray next monday. from what I understand my doc, who is an oncology urologist (hope I got that title right), will then discuss the results of the pathology report and imaging with me and then (if necessary) refer me to an oncologist for further treatment (chemo/RT)? is this how it usually works?

as for the "centers of excellence," is this term interchangeable with "comprehensive cancer centers" as designated by the national cancer institute? if yes, then there is such as center here in honolulu, see here. from your experience, at which point and how does/should one get in touch with such an institution?

again, thanks in advance for your input, I much appreciate it.

[kellyrulez]

hello,

so I had the I/O yesterday morning. when I woke up in the recovery room I was in a lot of pain. they shot me up w/ a lot of pain medication b/c the pain didn't lessen. all the meds made me nauseous and I threw up a few times.

I spent about 7h in the recovery room before I was "fit" enough to be moved to the pre-OP station where I needed to urinate and was discharged about 8h upon completion of surgery.

yesterday evening I wasn't in a lot of pain, I assume b/c the anesthesia and the pain meds were still in my system. today, however, I am in considerable pain when I move around, especially when getting up from and getting back into bed. I didn't take any pain meds yet as I feel the pain (provided it's not too bad) rather than being all numb and stuff. I notice a bit of swelling around the incision and some numbness. from your experience, is there any "danger" (e.g., hernia) involved when moving around- other than being in pain? I just don't like to hang around in bed all day...

I have the cat scan and chest x-ray appointment on monday. I was told not to drink anything 6 hours prior to the cat scan. I assume that I'll discuss the pathology report and imaging results at some point later next week with my urologist. I would greatly appreciate if you guys could give me some info regarding my question in the post above this one (center of excellence). I just want to be as well prepared as possible and know my options when I have the appointment with my doc. I do as much research on the internet as I can, but personal experiences are simply invaluable.

thank you very much for any help/info.

[Russell's Mom]

comprehensive cancer center

Hi, My name is Sharon, I work as a nurse, my son has TC. About the CHC. A comprehensive cancer center should be knowledgable about your disease and treatment. As you educate yourself and work with your doctors, it will become apparent if they lack expertise. The chemical treatments are fairly standard, possible future surgery should be done by someone who has experience. (RPLND) This forum is an excellent place for information as you go. Stay with it and pretty soon the picture of the treatment and the guidelines start falling into place. Your nausea may take a few days to release itself and about the same for the post-surgical pain. Most people are feeling quite a bit better within a few days. I can remember how difficutl the first days were...try to relax a bit...there is a lot of support out there! Take care, Russell's Mom, Sharon
PS Our little picture was take off the coast of Kauai Oct 05. Russell had cancer then and we didn't even know it. It had been growing for 5 months, not dianosed for another 9 months. As of Jan 29 this year, Russell is cancer free!

[petep]

good morning & welcome....

when people here reference centers for excellence on this forum, they are usually referring to this:

http://tcrc.acor.org/experts.html

and not necessarily a comprehensive cancer center....though a comprehensice center should be, on average, more knowledgeable on many types of cancers relative to other places.

TC is somewhat rare....yet surprsingly the protocols are very standard, with tremendous data to support them. There are options....you will hear terms like RPLND, surveillance, 4xEP or 3x BEP, or 2xBEP post orchiectomy...and there are various pathologies of the cancer....

spend enough time on these boards and will will find people here posting their pathology and a suggested [by their doc] course of action....and if it is wrong or does not seem quite right....people here will sound off, suggesting always a consult with an expert at the above link.

I would suggest two things:

1. post your pathology here on these boards along with your docs suggested course of treatment - you'll get lots of feedback.

2. Get a 2nd opinion on your pathology and treatment options...

Of all the things I did, flying to indy for a 2nd opinion was the best...einhorn confirmed my pathology and outlined options...a few hundred for a plane ticket, a couple hundred for the visit and a hundred for the hotel night.....may sound like a lot, but it is your life....

he also confirmed that he personally knew a good doc at the University of Miami and I would be in great hands under this person's care...

I had such confidence after that, that I was able to focus...and never 2nd guess if I was making the right decisions.

I know you are going thru a lot, but of the things that can happen to you...this really is the jackpot of cancers....very curable...

pete

[kellyrulez]

hello,

thanks a lot for the replies. I'll definitely post my path and imaging report along with my doc's treatment recommendations here to get your take on it.

cat scan and chest x-ray are up this afternoon. I hope that the pain of the surgery will lessen further and that the constipation will go away (any way to expedite that?).

I'll miss another interview with a great company in the bay area (where I wanted to relocate) this week due to the cancer. I know that getting healthy is top priority, yet life has to go on. it is still hard to fathom which big impact this diagnosis has on my life.

I'm glad I found this forum to share my experience and educate myself reading yours.

[Russell's Mom]

pain med

The constipation may be due to your pain meds. Check out the side effects. Russell's Mom, Sharon

[kellyrulez]

The constipation may be due to your pain meds. Check out the side effects. Russell's Mom, Sharon

yes, likely. yet I took the vicodin only on day 1 post surgery (= saturday). took the last vicodin saturday evening. I do hope the constipation will go away ASAP.

quick question regarding the cat scan. the center where I had the cat scan done today (abdomen, pelvis, and chest scan) told me that they'll fax (and subsequently mail) the CT scan report to my doc, not the images. is this common practice? I was under the impression that- when it's time to discuss imaging and path report w/ my doc- we'll also look at the images. wrong?

I asked about this and was told that I could specifically request the images. should I do this?

thanks!

[Fed]

quick question regarding the cat scan. the center where I had the cat scan done today (abdomen, pelvis, and chest scan) told me that they'll fax (and subsequently mail) the CT scan report to my doc, not the images. is this common practice? I was under the impression that- when it's time to discuss imaging and path report w/ my doc- we'll also look at the images. wrong?

They should, but they don't always do. Radiology has gotten so specialized, that docs seldom look at the films themselves. I am a bit anal about that, and that contributed to my canning my first oncologist, who relied entirely on the report (which he hadn't read until he was in the office with me). You should have the right to have the films reviewed with your oncologist, and they should have the ability to interpret them, perhaps without as much detail as a radiologist, but well enough to make an educated diagnosis.

I asked about this and was told that I could specifically request the images. should I do this?

thanks!

Absolutely! Nowadays, you can get a CD with all your images for free (they will likely charge you if you order actual films). You should have copies of your radiology for your medical records.

[kellyrulez]

Absolutely! Nowadays, you can get a CD with all your images for free (they will likely charge you if you order actual films). You should have copies of your radiology for your medical records.

Thanks for your input! I called the radiology center today and I'll pick up the report and CD w/ the images later on today.

by the way, is it common not to do a brain scan? I had my pelvis, abdomen, and chest scanned...

thanks!