Need Your Guidance, Please!

[Adam25]

I'm 25 years old, I live in Canada. I felt a strange, hard mass in my left testicle at the end of December and about two weeks later wound up on the operating table to have a left inguinal orchiectomy (on January 8th). Recovery from the surgery went well, there were no infections, and I was even well enough to go vacation a week after the procedure. I knew it would be a good thing for me to go on vacation and try to put everything behind me. I did a lot of walking so I figure that sped up my healing. I have an extremely supportive family and girlfriend so I know that it helped me to get better, mentally.

The week I came back from vacation, I had an appointment with my urologist where I received my diagnosis:

- Invasive non-seminomatous germ cell tumor
- The tumor consists of a relatively pure embryonal carcinoma
- Tumor measures 1.4 cm in greatest transverse diameter
- Tumor extends into but not through tunica albuginea
- There is no evidence of lymphovascular invasion
- Rete testis, epididymis, and spermatic cord are clear of tumor

Some other information that might be useful is that my blood had the tumor markers of a person without TC, another thing that may be in my favor. I am, however, very alarmed at the fact that this was a pure embryonal carcinoma. I was very thankful that I caught this very early, while it was still so small.

Anyways, fast forward to February 1st. I went for my CT Scan, where they scanned my entire chest down to my groin and took a blood test. I have an appointment set up to go to my urologist tomorrow to go over the results of the CT but I am very nervous. I have no idea what to expect. I feel down, depressed, and have had no appetite as I am scared to death of having an RPLND. All I want is surveillance and I hope that is an option I am given tomorrow.

I know (or at least surmise) that there are no doctors here. Based on the information I've given you, and in your experiences, what do you believe I am in for? Any advice you can give me at this point?

[Adam25]

I heard back from my doctor just now. He said that according to the CT scan, one of my lymph nodes, the left para-aortic lymph node, is at around 2 cm. He said that this is borderline and he is sending me to the RPLND specialist on Friday to meet with him. Needless to say, I am terrified. I want to have children someday and I want to be able to perform sexually, and I fear that having this operation will put all of that into jeopardy.

[dadmo]

You should make arrangements to bank sperm, the urologist will be able to provide the name of a facility. Am I correct in assuming that your lungs are clear? The reason I ask is that Embryonal carcinoma can sometimes skip the nodes and travel directly to the lungs. If an RPLND is chosen ask the doctor what his plan is if he should find active cancer in the node. In the U.S. the treatment would be 2 cycles of chemo but surveillance may be an option.

[kmom49]

rplnd

Hi Adam

You'll be so glad that you found this website. You will no doubt have the "nerve-sparing" RPLND as my son did. I know how terribly frightening this whole experience is but just a little reassurance from a Mom and I'm sure many others will hopefully build up your spirits. Will you be banking sperm? You should definitely be totally fine after the surgery and recovery, it's just a bit of "insurance" knowing you have that set aside so to speak. My son was 25 when diagnosed, had the I/O and then the RPLND which has been three years ago already. He's done great and is healthy. So hang in there, stay connected HERE and you will know how much support you have. Keep us posted as to the next steps. God Bless

kmom49

[Adam25]

Thank you all for your responses so far. I have done some reading and I am really hoping that if I need to get this procedure done, that I will be able to get the L-RPLND. I hope that is an option. Robert, I have an appointment with an oncologist on Friday. I have to pick up a CD of images that were taken during the CT scan from the hospital before my appointment and bring them with me so he can look at them.

It's funny... I was so hopeful that I would get lucky this time and that all I would have to lose is my left testicle. With the RPLND, the costs seem so great. I just want to be normal again. As much as I sometimes would complain about my life before, or feel down sometimes... Nothing is as bad as this. Those who have their health have no idea how lucky they really are, and it is something I will never take for granted again.

I ate something tonight and am starting to feel a bit better. To the Mom that posted here... My Mom was crushed when she found out about the possibility that I might need further surgery. I told her to be strong and that everything would work out fine. It's hard to say that to someone, when you're not sure of it yourself, but I hate to put my family and my girlfriend through the suffering that I have to endure right now. That's what makes me feel guilty about all this.

[Russell's Mom]

our experience

Hi Adam,
Another mom here. So as not to repeat the prevous e-mails, this is just a little reality check to balance the fears. Russell had his RPLND 9 days ago. It was a long surgery, yes we were fearful and now I cannot keep him down. He attended a superbowl gathering, has been to a restuarant style concert and fell over backward in a chair yesterday. Still he is going strong!! Keep putting your strong foot forward and know that all of the work is not useless. There are helpful people and gifts along the way. Take care, Russell's mom Sharon

[petep]

Adam,

Please read thru my post...

http://www.tc-cancer.com/forum/showthread.php?t=3015&highlight=petep

very similar to yours....the most important thing is to do your research and consult with expert oncologists.

With embryonal carcinoma, as was pointed out, often chemo is preferable as it will often jump to the lungs...it may a small microscopic cell at this point...or maye nothing.

Many get RPLND's and are fine....but the embryonal compenent is a very important factor in deciding.

No matter what, you are in a very good risk category and the "cure rate" for you is extremely high...just prior to my starting chemo, I rec'd an email from einhorn saying with my low blood markers and only 1 visible enlarged node, with 3 BEP my cure rate will be close to 100%.

I can tell you, looking back...you are in the worst part of cancer...all you wits about you, nervous and waiting....the day I started chemo was the day I started to relax a bit, because I knew I was doing everything I could at that point, I and knew the cards I was dealt.

If you want, send me a PM or email me at [email protected] & i'll give you my phone number...you can call me if you want as our cases are so similar....my wife is french canadian (from montreal) and I get to Canada quite often...and I'm happy to help out a canadian..

pete

[Adam25]

Thank you all so much for taking the time to respond. I have some further developments to share with you. I went to the urologist today, with a bunch of questions written down. Most of which I gathered after reading your responses. Here's the answers I got:

- I might be in Stage II now, based on my enlarged lymph node. I am "teetering on the edge", so to speak
- There is a 30% chance that my enlarged lymph node is not cancerous
- The paraaortic lymph node was NOT 2.0 cm large - only 1.3 cm large
- Even with the nerve-sparing RPLND, there is a chance that nerves might get cut and I might have retrograde ejaculation (not thrilled to hear this)
- The doctor who I am meeting with tomorrow is an experienced oncologist, who studied at Sloan Kettering in New York and holds a full oncology fellowship from there, so I suppose his opinion should be trusted
- I was instucted to talk to the oncologist about banking sperm
- My lungs are 100% free and clear
- My blood markers are completely normal
- He said the pure embryonal carcinoma is very sensitive to both radiation and chemotherapy, however, there is a stronger chance for reoccurance (according to him)
- I asked if he actually saw the images of the CT scan I got, he said no, he only got the report
- He also made an educated guess that after the RPLND I would just be under close surveillance and would not have to do chemo, based on the size of my largest node

Based on everything, if I do get an RPLND, I feel that everything I've read and heard from my urologist says that I am pretty good candidate for the alternative forms of RPLND (L-RPLND, nerve sparing RPLND, or modified RPLND). I still am not thrilled at the prospect of getting this surgery. Pete, I may take you up on your offer depending on how tomorrow goes. There is much that hinges on tomorrow.

[dadmo]

It sound like it will be an RPLND for you. It is indeed a major operaton but in the hands of an experianced surgeon you will do fine. Does the facility you're at have someone with experiance who can do the L-RPLND. With only one enlarged node that might be a great choice. Just check and see what they do if the frozen section shows active cancer, most facilities convert to a full open RPLND. To my knowledge Scott, on this forum, is the only person that had an L-RPLND on both sides.

[Adam25]

What is the difference between an open RPLND and a bilateral RPLND-- or are they the same thing?

[Scott]

Bilateral just means lymph nodes are removed from both the right and left sides of the body. I had a bilateral L-RPLND.

[mikeygti]

[QUOTE=
- The paraaortic lymph node was NOT 2.0 cm large - only 1.3 cm large
- He said the pure embryonal carcinoma is very sensitive to both radiation and chemotherapy, however, there is a stronger chance for reoccurance (according to him)

Greetings Adam from a fellow Canuck. Firstly, it is my understanding that E/C is NOT sensitive to radiation. Perhaps other board members can also comment on that. I would think Surveillance would be an excellent option for you at this point,keeping an eye on that node.

[petep]

Adam,

Embryonal is NOT sensitive to radiation...radiation is a standard protocol for someone with pure seminoma and no markers/no vascular invasion...and is done as a preventive measure to kill any microscopic cells.

Anytime there is a component in addition to seminoma, you immediately become a non-seminoma case.....and your options, depending on staging, can include surveillance, RPLND, chemo....

It works a bit like this...

- if no markers, no vascular invasion, clean scans, non seminoma...you can choose surveillance and there is roughly an 80% chance you are fine...

- if you have a recurrence, with just lymph node invasion...not lungs...you can choose 3 BEP, or some will do 4 EP...and the cure rate is very high...in excess of 95%...some studies show 97+%.

- if you choose rplnd, same staging level, the cure rate is is in the 70-80% range....with the rplnd alone...

the problem with EC is how it'll jump to the lungs...

the important thing is the overall cure rate will be high no matter what you choose, even if RPLND, then chemo....

But read this well written article by craig nichols...

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

many, many, many have been cured with rplnd...but really question if you have enlarged nodes and markers...and EC....many docs out there who are not experts just do not have the data or experience...I get nercous whn I hear the blanket statement that radiation is effective for tc - just some pathologies of tc.

good luck tomorrow.

pete

[dadmo]

Ec is very responsive to chemo. Chemo kills all fast growing cells and ec grows like mad. The controversey with ec is what step to take first. It can skip the nodes and travel vis the blood stream, which means that and RPLND is not really a cure. Now the problem with a swollen node. What the heck is in the node? Do you have chemo and kill the cancer that might not be there or do you have a major operation to find out what is in the node? It really is a numbers game. I have no great answer. My son was stage III which took the guess work out of the process. If it were me I would opt of the RPLND and skip the surveillance, get what ever that is out. If the RPLND is positive for cancer then I would certainly get the chemo. Remember this is what I would do and may not be what the doctor's recommend. Hey, you come here for opinions and that's what you get.

As an aside Scott is a master at surveillance so I think (and he will speak for himself) he might take the watchfull waiting route with frequent checkups, I couldn't, the watchfull waiting would drive me crazy.

[Adam25]

Yes, there is a chance that you could have a "false positive" scan. I am sure the oncologist will want to do one for himself, especially if it has been a couple of weeks since the last one.

Relate everything your urologist said to the Onco. he may be jumping the gun somewhat.

let us know, and good luck tomorrow.

Nothing would make me happier than a "false positive" scan. I will make sure that I ask about redoing the scans if he does not mention it.

I have detailed notes of what my urologist said and will pass it onto the oncologist.

Thanks again for everyone's reponses, they are really helping to educate me further on this bastard disease. I just wish I knew where this was all going. I will post at some point tomorrow after I speak with him. Keep your fingers crossed.