Embryonal Carcinoma

[rjw0283]

Hey all.. I am new to the site and just found out yesterday that I have 100% Embryonal Carcinoma.

Here the story goes;


Dec 6th 2011- Felt a pain in my left testis which led me to feeling around later that night I felt 2 pretty noticable lumps down there.

Did the usual man thing which is wait a few days to see what happens.

Dec 13th I went into my Aid station and described them my symptoms they looked at it and the DR had me schedule and ultrasound.

Dec 20th Had ultrasound done by the radiology clinic...they said they would send their findings to my DR.
Dec 21st Went back to my DR where i started he obviously didn't know much about this type of illness, he first talked about doing a biopsy on the mass, but changed his mind and referred me to see Urology. He told me to call them later that day and make an appointment with them. I got a call about 30 min later from Urology stating that their DR reviewed my ultrasound and they wanted me in there ASAP. I got there and the DR explained to me what I all ready knew, which was that I had to lumps on my left guy and they always treat this type of thing as a worst case scenario and suspect cancer. I had an I/O about 8 hours later, I would have had it even sooner but to the fact that I ate some food on the way over there I had to wait. During the waiting time I got labs done and had a Chest X-ray and scheduled a CT scan for the following day. I had the surgery done everything was fine, I got to leave the hospital about an hour after operation and I was on my feet and moving the next day... after about a week I was near 100%


3 Jan 2012- I went in to get my results, from the Urologist DR, she informed me that I had Embryonal Carcinoma with Lymph Vascular Invasion, She told me that all my labs came back good and my ct scan and chest x-ray showed no lymp node invasions however she gave me the choice of having RPLND or 2 X BEP or Surveilance. Not really sure what to do. I am active duty Army so I think surveilance is not always going to be an option since I could end up going somewhere where it's not available

LDH 172
HCG TM <2
AFP 9.2

Today I will schedule a consult with Oncology to see what they have to say about the possible BEP but if anyone has any suggestions on what I should do just let me know, the RPLND doesn't sound like something that I would want to do. Also, there is not a whole lot of threads about Embryonal Carcinoma on here is this a rarer form of TC?

Thank you..

[S P]

Hi and sorry to welcome you, but you did a good job of getting on top of this pretty quickly!

Embryonal Carcinoma "EC" is very common, and highly curable. For Stage IB non-seminoma, yes the options are indeed RPLND, BEP x1 or x2 chemo, or surveillance. Since you're active duty Army, correct it doesn't sound like surveillance would be a very good option. You'll need to discuss with your oncologist, but I think that 1 or 2 rounds of chemo now would probably be the way to go.

Good luck and thanks so much for your service!

[CW406]

I'd probably do the chemo since the EC can travel via the bloodstream (namely to the lungs) and thus make an RPLND futile despite one's best intentions.

I don't know about military rules so you would just need to make sure whatever you do does not render you medically ineligible or whatever the term is. I don't know if "cancer treatment" such as chemo would be grounds for a discharge whereas surveillance would not. This is just me literally thinking out loud, but it is your career and I'd not want to inadvertently hurt it.

You could maybe ask how available surveillance could be. I'd think that any FOB with some sort of hospital facilities would have a CT machine and the ability to ship blood to a lab, right? Just another thought so you don't get pushed one way or the other. Get all the facts on every option is what I'm saying, in short. You have considerations that civilians don't have to worry about. Thanks for your service!

[BarclayBanister]

I was given choice of RPLND or surveillance and chose surveillance. If you think you'll be able to follow your schedule and have the facilities to do so, then it is a perfectly viable option. I ended up needing 3xBEP but you can save the heavy artillery (pun intended) for when you need it. Me personally? I would do chemo over the RPLND.

[DoubleZero]

I have 100% Embryonal Carcinoma...
...the Urologist DR, she informed me that I had Embryonal Carcinoma with Lymph Vascular Invasion...

Somebody much better versed than me will chime in, however I seem to recall that EC with LV puts you at a higher risk of a relapse (for myself it is 100% chance, but I am sure someone quoted 30 - 50%!) so you need to keep that in mind if you go the surveillance route.

[davidhanson90]

I think pure EC only happens in 1-12 TC's so is not too common. As EC had a tendency to travel to remote regions such as the lungs you have to be pretty careful with it.

It a personal choice in what you feel is right for you but if it was me I would probably go for the chemo option as EC responds very well and as as you appear to have caught it early it should be wiped out.

There is still the choice of RPLND after chemo if required but its a big operation and make sure you do research on it. SP has a good set of posts on this from when he had his done.

[MrsB]

My husband was 1B and had EC and seminoma with lymph vascular invastion. He chose to go with adjuvent chemo as he didn't want to deal with a relapse down the road. It really is a personal decision and there is no wrong answer. Your age, lifestyle and ablilty to follow surveillance will all be factors. Definitely do your research and ask any questions of this forum. It is a great source of information and support.

[rjw0283]

Bep

For 2 rounds of chemo what would I expect? how long does a round of chemo take and how long are the sessions generally? These are questions that will be answered by the oncology people on monday but I am curious just wondering on what to expect... thank you...

[ctag_rock]

I'm sorry 2012 has begun this way for you, but you were smart to seek care immediately. My son is a Marine Reservist on medical leave for almost a year now. He was diagnosed with mixed germ cell, 80% teratoma, 15% embryonal and 5% yolk sac 2 years ago. CT and chest x-ray negative, he opted for the RPLND since this was advised by multiple physicians. Nodes were negative for disease. Dec, 2010, tumor markers elevated, PET scan was positive for lung lesions and enlarged lymph nodes in the chest, likely embryonal. 3x BEP, very rough regime of chemicals, but it eradicated the embryonal lesions, however because there was residual nodes and lesions he was advised to have a left Thoracotomy. The outcome was removal of residual teratoma, no active cancer. I'm sharing this because as the others have said it's a personal choice. My best advice to you is to go to Indiana University Hospital and see Dr. Larry Einhorn who is the expert. If you decide to have an RPLND, again, go to IU. My son had his surgeries there and they are excellent. Dr. Einhorn will answer your email if you wish to message him: leinhorn@iupui.edu. He is the expert to answer your questions and will do so expeditiously. Livestrong soldier, you'll get through this. My son is doing well now, he does have some peripheral neuropathy (CIPN) from the chemo, but he's a soldier, so he'll deal with it. I do hope to find treatments to alleviate that. God bless.

[CancerSux]

For 2 rounds of chemo what would I expect? how long does a round of chemo take and how long are the sessions generally?

What to expect in terms of side effects of 2xBEP is fatigue, metallic taste (one of the drugs is a platinum-based compound) in your moth, maybe mouth sores, likely hair loss.

A round is 3 weeks, if you are doing two rounds of BEP that would be the full 6 weeks being treatment weeks (week 1 is 3 drugs with 'E' and 'P' being given each day for 5 days and the 'B' for just one of the days, weeks 2 and 3 are one day of chemo with 'B'.). If it is 2 rounds of EP than it will be a full week of treatment for week 1, 2 weeks of rest, a full week of chemo for week 4, and that is it.

Tracy

[SPM]

Hey man, I was diagnosed with the exact same thing back in September, 100% EC with LVI. I had the same options and opted for 2XBEP. I finished up on December 5th and everything looked good on my last check-up. I’m back to normal now and doing everything at the same pace I did before. I’m happy with my decision and would do it again.

I was fortunate with the chemo. The only side effects I had were fatigue, the metallic taste in my mouth towards the end of weeks 1 and 4 and some mouth sores that cleared up pretty fast with frequent mouth washing. There was also a reaction to the Bleo, I got severe chills with a fever. This lasted for few hours and I was fine the next day. Of course, there was hair loss too. It’s a long six weeks, but very doable.

You’ll find a TON of information on this site. Ask a lot of questions when you see your oncologist and I’m sure you’ll be able to make the decision thats best for you. Remember, there isn’t a wrong choice as each one will lead you to the same end result, being cured!

Best of luck.

[rjw0283]

another thing

First of all I want to say thank you for the responses you guys are awesome.... I called in today to schedule an appointment for an oncology consult, and they told me they can see me monday. So that is the day i will figure out what I will do.. As of now I am leaning toward the chemo, I think that is the best option for me... I am deffinately not down with the lymph node surgery unless I HAD to do it.. you know what I mean... So if i do the chemo.. Is it a guarantee that I lose the hair and the ability to have children?? I all ready have 1 child but would like to have more.. sperm banking I guess is the best option at this point.. but is it possible to go about having kids after chemo? and the main thing I wanted to say was that my dad was also diagnosed with TC and my urologist said that this was a complete coincedence that I was diagnosed with TC as well unless I have some kind of crazy family genes that metamorphised this stuff in me.. I find that hard to believe I am not sure what cancer he had but I know he did radiation not chemo so it was probably a different kind but I know his spread to his nodes i think... I would ask him but he is no longer around.. not because of the TC though.. well i just want to thank everyone for responding I appreciate it greatly

[MeMo]

Hi and sorry to wellcome you,

We have a similar situations except LVI,you can see my summary below.
As the others say EC is very chemo sensitive but also very fast moving type of TC.
There is %30 chance of relaps,(maybe more bcoz of your LVI)
In the worst case,if you choose surveillance and the relaps occurs, you will have to get 3X or 4X cyles of BEP.
And 1 or 2 more rounds after 2. round of BEP could be very destructive and colud be long term effects.

Good luck...

[CW406]

Is it a guarantee that I lose the hair and the ability to have children??

http://www.sciencedirect.com/science...22534705667195

This study showed no major fertility issues after adjuvant BEP chemo.

As for your hair, it will be gone by day 20 of the first round. But regarding the rest, SPM's experience was exactly the same as mine was doing 2XBEP. Since this is probably important to you since you're active duty army, I'll mention that I was able to keep up my fitness pretty well during the chemo; lifting strength was about 75% but the bleo does make you get out of breath pretty easily, so I was not running but doing other cardio instead. But my running pace and capacity were back to normal withing a month or two of the end of treatment. Of course everyone's experience will vary but that was mine. You will be OK!

[MIKEBRWADE]

What to expect in terms of side effects of 2xBEP is fatigue, metallic taste (one of the drugs is a platinum-based compound) in your moth, maybe mouth sores, likely hair loss.

A round is 3 weeks, if you are doing two rounds of BEP that would be the full 6 weeks being treatment weeks (week 1 is 3 drugs with 'E' and 'P' being given each day for 5 days and the 'B' for just one of the days, weeks 2 and 3 are one day of chemo with 'B'.). If it is 2 rounds of EP than it will be a full week of treatment for week 1, 2 weeks of rest, a full week of chemo for week 4, and that is it.

Tracy

You can also check out my blog for my first round of BEP just finished and i documented every day (nearly) and i am about to start my second round. Next week.. feel free to read along and ask questions here on these forums or on my blog.