Orchiectomy in 13 hours

[jason137]

It all seems to move too quickly. On June 30 everything seemed fine. On July 3 while showering I noticed my right testicle much larger than normal. I saw my GP on July 5 and he ordered an ultrasound. I had the ultrasound on July 12 and got the news. Saw a urologist later that day. He said, "It's coming out. When do you want to do this, Thursday, Friday or Monday? Any questions?" I would have loved to be in a state of mind to ask rational or meaningful questions.

I found the list of questions on this site and will hopefully get some answers.

[DianeE]

Hi Jason,

It's good that things are moving fast. One of the hardest things
is waiting!! My son discovered something "not right" on a Sunday
evening and by Thurs. he had the testicle removed. The sooner
the better!

Good luck with the surgery and when you're up to it, please
post back and let us know how you are. You're going to see that
this site a wonderful place to ask questions, get answers and
find support.

Diane

[Joe's Mom]

Things do move rather quickly and it doesn't help given we are shocked with news like this. Do you have a support person that can be with you (Family member, girlfriend, best friend). It's better to have another set of ears to listen and someone who can help you ask the questions you want answers to.

I am new to this support forum. These people are wonderful and extremely knowledgeable. We are all here for you. I know this is tough - but hang in there. I pray that all goes well for you.

Joe's Mom (Nancy)

[MROSE]

Welcome to the forum!!

I certainly agree with the posts. In my case, my boyfriend's Urologist didn't have great bedside manner at all and was pretty blunt about the whole ordeal. It really helps to have someone on the side that you could be with and spend time with, whether it be family members or a friend. We are here in this forum to support you and help you through your concerns and experiences. Keep us updated on the orchiectomy - it's a very simple procedure, and your recovery will be great!

Melissa

[rupert]

My operation took just under two weeks to schedule from the diagnosis. Although everything seems to be going very quickly it is much better that way than the waiting. Good luck and remember there are lots of people to support you during this period.

[Don]

Its amazing how many times I hear of patients just being railroaded by their doctors with a bad diagnosis... I was in real bad shape when I went into the hospital originally so I was on alot of pain meds while they ran a massive battery of tests in which I didn't know why all this had to be done. after ultrasound,bloodwork,ct-scan,mri ,pet-scan and what seemed like 500 ex-rays they put me in the hospital room for about 16 hrs.. at 4:30 am on a saturday morning the Urologist stormed into the room like Kramer from Seinfeld waking me up from a heavy slumber and proceeded to tell me, in what seemed like one breathe , that I had TC and he was removing the testicle in 1 hour and the reason they did so many tests was because they couldn't find my left kidney (which was basically engulfed by the tumor in my stomach :eek: ... and then he turned around and walked out and the next time I seen him was in the OR. :cool: ... What is wrong with these Urologists.... Just a little emphathy, just one ounce is all we ask!!!! Treat me like you care just a little for my life... In some cases I guess we just ask to damn much.... Be well!!!! :cool: DON

[jason137]

Thanks for the support. It's always good to know someone else has been there first.

I think I'm doing pretty well. There's not much pain, but there is some swelling. I can walk around pretty well. I should see the urologist on Thursday or Friday and get the pathology report.

I know it's good that they work quickly on this, I only waited until Monday so that my Mom could come down and help. She's been really good.

[Scott]

Jason, it's good to hear you're recovering well. Did you get your pathology report yet? Blood test results? Are you scheduled for a CT scan?

[Ras Joe]

to add to the bedside manner stories, here is a good one from me--

I got my biopsy results not only over the phone but also on my 21st birthday. The doc did manage to get in a "by the way I just noticed on your chart...Happy Birthday!" before the hang up. Well, at least I will never forget my 21st like most do b/c of the massive amounts of booze that is usually consumed :) .

[justinsmom]

Had to put in my 2¢ on the bedside manner theme- Justin also spent his 21st b-day getting bleo-but the onc nurses were great- they made him a poster with poker chips and sang & had cake-one joked about bringing him a beer but I guess decided not to because of his treatment ---he'll certainly remember his 21st-instead of going to the bar on the way home he went to ER because his CT scan showed a blood clot! Oh the memories cancer provides..... :rolleyes: Lanette ><>

[justinsmom]

And Jason137 have you gotten your test results? What is your age? Tell your mom this site is good support if you need future treatments-for her as well as you-God Bless-Lanette ><>

[drom]

My son came home from college for the winter break at 1pm on Friday, he had been having bad back pain for weeks. I took him to the doctor at 2, by 4 we were checking into the hospital, we were told he had TC and they operated 12 noon the next day. He spent Christmas in the hospital doing chemo, his birthday he was recovering from RPLND (he had been let out the day before and the best birthday present ever, a no active cancer Pathology report). He followed that with two more operations on the lungs.

Through it all he smiled, the nurses and doctors everywhere were great and now he is getting ready to go back to school. It seems fast now bt at the time it took forever.

There will be a happy ending.

Domenic

[Scott]

Through it all he smiled...Attitude is everything. Congratulations on the happy new beginning!

[Chris'Mom]

I agree Dominic, there is a happy ending and the stories here prove that....Jason137, keep in touch here...we are the support that can sometimes be missing...when my son Chris last year felt a lump on Spring break, we took him to the local urologist...felt Chris and said it was nothing..I took the next day off to celebrate....by 9am he called me, Chris was sleeping, and yelled in the phone "get him to Sloan Kettering, he has cancer"...bloodwork showed AFP at 84....the Dr. where he had the orchiectomy in Rochester, NY was the coldest man on earth....would not look me in the eyes....said I was an anxious mom when I told him we were going to Sloan Kettering for a second opinion....but from then on, chemo nurses, Dr.s at Sloan, have been wonderful...hang in there...you will get thru this thing....Mary Ellen

[Scott]

...said I was an anxious mom when I told him we were going to Sloan Kettering for a second opinion...Well, of course you were an anxious mom, and you had every right to be. Second opinions aren't an insult; they're good practice.

[dadmo]

Imagine that, anxiety over being told your son has cancer. Now who would ever think that could happen.

[justinsmom]

Amen Dadmo!!

[jason137]

Jason, it's good to hear you're recovering well. Did you get your pathology report yet? Blood test results? Are you scheduled for a CT scan?

Been busy at work, haven't had a chance to get back here.

Got the pathology report: 40% immature teratoma, 40% embryonal carcinoma, 20% yolk sac tumor. 4 x 3.3 x 2.3 cm, limited to testis. Margins: Negative: Angiolymphatic invasion: absent. HCG: 16 IU/L, AFP: 415 ng/ml, LDH 146 U/L

Pathologic TNM: pT1 NX MX RO

Had my CT scan 10 or so days ago, it was clear. I was somewhat worried that it may have spread because I was having severe back pain for two weeks prior to the surgery, but the pain has now gone away.

I have another blood test on Aug 28, and will see the urologist on Aug 30.

And Jason137 have you gotten your test results? What is your age? Tell your mom this site is good support if you need future treatments-for her as well as you-God Bless-Lanette ><>

I'm 34. I don't know if my Mom has found this site, but she has read every article at http://tcrc.acor.org/

Would anyone be able to tell me what this means, "Intratubular germ cell neoplasia, unclassified."? That was under 'Additional findings' on the pathology report.

Thanks everyone.

[dadmo]

Intratubular Germ Cell Neoplasia are malignant germ cells within the seminiferous tubules. It is considered a precursor lesion of most germ cell tumors. Basically it means that some of the cancer cell, inside the tubes where the sperm develops, couldn't be identified to an exact type. It seem to me that you may be a candidate for surveillance.

[Scott]

Got the pathology report: 40% immature teratoma, 40% embryonal carcinoma, 20% yolk sac tumor. 4 x 3.3 x 2.3 cm, limited to testis. Margins: Negative: Angiolymphatic invasion: absent. HCG: 16 IU/L, AFP: 415 ng/ml, LDH 146 U/L

Pathologic TNM: pT1 NX MX ROSounds like mostly good news. The most important next step is to watch your AFP and hCG. If they return to normal (note that the AFP level should decrease by half about every five to seven days), surveillance may be an option. You should also be hearing about RPLND and chemotherapy.

[justinsmom]

Keep us posted-I only get around to checking the site every so often-but so many are in my prayers-I hope & pray you will get to go with surveillance but if you have to have RPLND or chemo rest assured that the odds are in your favor of beating this! And isn't that great news!! Again, tell your mom if she has any questions, fears, anxiety ect. this is the second best place to get support (1st best is prayer!) God Bless, Lanette

[Don]

Hopefully your AFP and HCG will drop after the I/O and you will be able to go the route of surveillance ... as said above no matter what... You Will Survive and beat this disease!!!!!! :)

[luckydog099]

Not to beat a dead horse, but speaking of bedside manner, as I read through these posts, I truly realize how fortunate I am. I thought it was the end of the world when I was told my testicle had to be removed. Urology consult at 2:30pm on 5/4/06, by 8:45am on 5/8/06, I was in the recovery room. In and out in 35 minutes. My urologist, Dr. George Kmetz in Canton, Ohio was awesome! He joked around with me before the surgery, was very positive and very supportive with my family. He took everyone into the private consultation room in the surgical waiting area and sat there with them for 45 minutes or longer, answered each and every question they had, did not seem to be in a rush, and even asked again if they had any other questions before he left. They knew more about what was going in with me than I did. He's just a little feller, and I say that because I'm 6'2" 340, but all in all with everything that was going on at 37 years of age, the hardest thing about the whole process, was having to tell my mom and grandma, who is more like my mom, that I probably had cancer, and I would need surgery. They were strong for me, it was hard to hold back the tears, and I could see it in there eyes they wanted to cry, but didn't. They were my stability at the time. I didn't mention the lump or anything waited until the ultrasound results. I got a copy of the report from my GP, and as I sat there reading it to them, my deep voice started to crackle and go up an octave with almost every word while my girlfriend sat there holding my hand, was almost unbearable for me. But when I left, got into my car and looked up onto the front porch and then seen the tears from my mom and grandma was unbearable. I broke and cried like a baby. THAT was the hardest part of all for me. Being her only son, I have a sister by the way, and the only grandson, other grandaughters, and the first born of all of them, I felt as though I just broke their hearts. But through it all, I don't think I could of made it without the three of them, my girlfriend, my mom and my grandma. They were there for throughout it all. My dad was a nervous wreck. Even though my parents have been divorced for 27 years, they cried and hugged one another. My dad told me, "you know, there is something to that being the first born, and I was scared as hell, because I didn't know what to expect or what the outcome may be. To hear the words cancer and your child in the same sentence is sickening to a parent." Not saying that I'm better than anyone else, but having read what's happened to others makes me realize that maybe I am just that "Lucky Dog!" as it says on the tattoo on my arm. I have been so stressed out almost each and every day since my ultrasound on April 25, 2006, I find comfort here, being able to share my experiences and hopefully be able to help someone else who is about to experience what we've ALL gone through. I always apologize for my long posts, but I feel as if I've kept things bottled up inside me, being the strong one for my family and not causing any worries for them. And today, reading a copy of the surgical report from the attempted RPLND in Indianapolis, I found out that I was near death, a just moments away from a tracheotomy because of so much trauma to my throat after 90 minutes of trying to get the intubation tube down my throat, I now realize how lucky I was to NOT have the surgery. I had nightmares of dying in surgery. It's best that things move fast, and you DON'T have time to think. I knew of my scheduled RPLND for 7 weeks before happening. That was 7 weeks of torture, panic attacks. and stress that I don't ever want to experience again. So to jason137, I hope everything goes smoothly for you from here on out and no reoccurences, and to justinsmom, Lanette, I hope the paralysis continues to improve, and he has a full recovery and no permanent damage done. Scott, I think it's very admirable what your doing for the Lance Armstrong Foundation, and I have the highest respect for you. And it sounds as though you and dadmo are full of knowledge regarding TC and I'm glad to see you sharing what you know with others. Don, I read on another post about your severe neuropathy, and I posted about a fairly new drug called Lyrica, being a nurse I've seen alot of improvements with it versus neurontin, used quite frequently for neuropathys. They also use Cymbalta, which is actually an anti-depressant, but some doctors are prescribing for peripheral neuropathy as well. Maybe you're on these meds or may have even tried them, but I guess it never hurts to mention none the less. Thank you all for taking the time to read my ramblings and I apologize for taking up your time. Paul

Right radical orchiectomy 5/8/06, 5 year surveillance, CT Scans clear, beta hCG <0.5, AFP 2.9, LDH 184

[dadmo]

Paul:
It's quite a relief to find a place to just let it out and people will understand. I just wish that last post didn't make me misty. It made the memories of the day Jason told his grandparents come flooding back. What a horrible day. In the words of Otis from Innies and Outties (http://inniesandoutties.comicgenesis.com/) "stupid cancer".

[Scott]

I apologize for taking up your time.There's absolutely no need for apologies, Paul. It's good for you, and it's good for us. Post away!

[Sans rt1]

Jason - -

Good luck on your next bloodwork and urologist visit. I assume you will be referred to an oncologist who will discuss your options with you in great detail. Hopefully surveillence will be all you need.


And luckydog - -

I really appreciate your posts. Some of us take long paragraphs to say what others can seem to get out in a sentence :p .

You mentioned how hard it was to tell your mother and grandmother. I have realized through experience that when you are going through TC, it is really hard to be strong for others. I tried, and I guess I still am trying to some extent because that is the way I am. But I do remember how hard it was to tell my mother - she's in her mid-80's and was still dealing with my father's recent death, so I did not want to add to her worries. I decided not to tell her until after my surgery and even to wait if possible until my pathology report came back. So there I was, trying to heal from my I/O, worried about what the pathology report would tell, worried about my missing work and what all this would mean for my family, but on top of it all I worried most about how I was going to tell my mother.

In the end it all worked out for the best, I guess, because my pathology report came back in only 5 days, and showed pure seminoma. So I was able to paint it all in a positive - if you have to get cancer, this is the one to get - kind of fashion. But still, there is something about having to tell your mother you have cancer that is really hard to do, no matter how good the prognosis is.