nrd? ??? please help

[zesasmom]

I'm starting new thread ....hoping for answers
My sons pathology was 50% yolk sac
15% seminoma
15% embryonic
And 20% nrd which the dr said was normal tissue???
I can't find any info on this.....anyone heard of this????
Thanks

[Davepet]

Never heard of nrd, so I did some digging. According to an acronym finder website, there are 79 different possible meanings, but one stood out:

No Residual Disease

Not sure if that's what he meant, & no idea how that became part of his tumor, it's a new one on me, maybe others have more info.

Dave

[zesasmom]

Thanks so much for your response. Plan to talk to dr on Monday and get copy of pathology. I'm so new to this and have no idea that normal tissue can be part of tumor but I hope for the best as the tumor was contained no lymphatic invasion and the dr was encouraging. Thank you again

[Paul54]

Never heard of it. Just to make life a little easier, you don't have to start new threads for each question. Start one with a title that has some meaning to you, continue using it. We'll find it. Something like "College son going to beat this stupid disease". Whatever.

[zesasmom]

Ok i hope im doing this correctly but would like opinions. Finally got my sons pathology report. Before everything had been through him which made it somewhat confusing. Anyway the pathology is : 50% yolk sac 35% embryonal 15% seminoma. It was all contained no lymphatic invasion all margins clean . The urologist found his chest xray neg and his cat scan clean (even though it mentioned severak prominent paraortic nodes up to 1cm). His markers afp 98.1 others neg. He referred eli to md anderson in orlando fl to oncologist on july 2.

My husband spoke to the urologist today. The urologist feels eli should do most probably chemo as follow up because of the embryonal. He mentioned briefly but dismissed rplnd. He felt even if markers fall to normal and scans clear he would recommend chemo. No survellience.

At this point we are waiting to see if the markers afp fall to normal and will do another scan. If those two things are normal with a contained no lymphatic invasion tumor would surveillience not be an options. Or is chemo the protocol.

Im somewhat uncomfortable sending dr einhorn an email but would like to pay for a consultation. Does he do phone consultations. Does anyone know how this works. Im in nc so yes i will be consulting with dr deborah bradley also i noticed a dr cary robertson who seemed to have worked with tc. Anyone familiar with these doctors??

Any advise appreciated. I want eli to have the best treatment whether it be chemo rplnd or both but also if hes a candidate for surveillience might want to consider that. Extremely concerned and worried about my son as always. Much thanks!

Lori
Sorry dont have the signature thing down yet but working on it

[zesasmom]

Also the dr said hes stage I based on pathology and markers

[zesasmom]

Sorry to go on about this i just find it so extremely overwhelming. Apparently my sons urologist told my husband something to effect in indiana they would recommend rplnd but he would personally not go that route. My feeling is if iu recommends treatment i would feel secure in following.....but he wouldnt. In any case calling iu tomorrow. Dont know if we need to physically go there or can send reports for consult. Also i came across dr zegnebot ? In orlando. Does anyone have any experience with him. Also moffit in tampa?

Thanks!

Lori
Elis worried mom

[Davepet]

At stage one, surveillance should be an option. Embryonal TC makes that a bit more risky, but if he relapses his odds of complete recovery are close to exactly the same as if he did further treatment now.

The advantage to doing chemo now is there are several lite chemo protocols that should be more than enough now, but if he waits & relapses it will be full on 3xBEP.

You doc is wrong, Dr Einhorn seems to rarely recommend RPLND, he seems to prefer chemo. I believe it is Sloan where almost everyone gets an RPLND. Someone will correct me if I'm wrong.

Dave

[Paul54]

Lori,
You would do yourself a big favor if you stopped searching the web for doctors in Florida. You have highly regarded specialists at Duke near home. They have successfully treated many of our guys. You also have access to Dr. Einhorn at IU. Dr. Einhorn would be happy to consult by email, phone or in person. He basically invented the modern treatments used today that have saved thousands. Don't try to speculate on who might recommend what treatment. Duke and IU will get it right.

Say thanks to the doctors in Florida that have gotten your son this far. Now move on to the best. That's what I would do.
Paul

[MPsr]

Lori-
I would have to agree with the gentlemen...

My son started his journey in Poughkeepsie NY where he goes to school, but after the orchiectomy- and his abdominal ct, his urologist suggested perhaps a second opinion.

--Even if he had not, I would have taken any further treatment to MSKCC.
Now he is starting his third cycle of EP.
From the beginning Sloan said they would do the RPLND after chemo. They said it is to give him best chance- incase of microscopic mets or teratoma (do not respond to chemo)

Good luck

[zesasmom]

Thank you all for your replies. Eli sees an oncologist on monday in florida. I guess that will be our first opinion. As soon as we see if his afp markers drop.i will be consulting dr einhorn for another opinion. Eli will be in nc in few weeks and next stop will then be duke. The waiting as im sure you all know is terrible hard but necessary. Again much thanks. I feel obsessed with tc at this point and this forum and your comments help so much.

To mpsr...my best thoughts and prayers to your son also. Sounds like hes receiving excellent care.

Lori
elis mom

[AustinsMom]

Hi Lori,

From one Mom to another........I was at the same place you are now about six months ago. I knew absolutely nothing about TC one day and the next it was all I could think about. Once the pure shock and disbelief wore off, I spent weeks glued to the internet trying to learn everything I could about this disease.

One thing that REALLY helped me and still does, is a notebook I keep with all the Doctors names and appointments, all the test results as well as information I find, questions I have for the Doctors and the answers I receive. It was empowering to me to learn as much as I could, but I also needed to feel organized, as it can be overwhelming.

You will find a vast wealth of knowledge, advice and support from people on this site. It can be an invaluable asset to you and/or son as you navigate your way through his treatment. It sounds like his TC was caught early and whether you choose surveillance or chemo ( or RPLND), the chances for him to be cured are extremely high. I would listen to whatever Dr. Einhorn suggest if I were you. TC is not very common, so many Oncologists have little experience with it, but he knows TC inside and out as well as all the various options for treatment.

You are right, the waiting is the WORST, because you feel powerless. It sounds like Eli has a great support system though and you will all get through this! Hang in there!!

Diane

[zesasmom]

Hi diane

Thank you so much for your words of encouragement. Im sure as a mom you understand the hard it is to watch your son go through this. Your suggestion of notebook is great idea as it is all quite overwhelming. I also think dr. Einhorn is going to be who we ultimately go with as drs seem to have quite different opinions of treatment.

You and your son are in my thoughts and prayers as he goes through treatment.

Your kind words meant so much.

Lori
elis mom

[zesasmom]

I hope i can get some opinions ideas from the experience of people on this forum.

My son eli saw an oncologist today in orlando at md anderson. The oncologist staged him at stage Ia i supposed based on pathology completely contained in testicle clean margins no lymphatic invasiion. Eli s pre i/o markers were afp 98.1 and others normal. Chest xray clear. Several prominent nodes up to 1cm on ct but urologist and oncoligist dont seem too concerned about the nodes.

So the oncologist told eli if his markers come down he has a choice of surveilllance however he doesnt expect the marker numbers to drop because of the composition of the tumor: 50% yolk sac 35% embryonal 15% seminoma. If numbers remain elevated as he expects he recommends rplnd not chemo.

Why would rplnd be recommended instead of chemo. The urologist recommended chemo and said he would absolutely not suggest rplnd. Why does this tumor composition make him think the numbers will remain.

Tomorrow phoning dr. Einhorn to set up.appointment or consultation. In the meantime waiting for markers report but wasnt given a lot of hope that they would drop.

Any ideas...much apppreciation as always.

Lori
Elis mom

[zesasmom]

Or maybe i should contact sloan since ive read they do many rplnds......?

[Davepet]

Get a hold of Dr Einhorn., he's one of the best.

[Scott]

I'm glad to hear you're getting another opinion from an expert. There's no cause to believe his markers won't normalize; we'll just have to wait and see. RPLND will not be the right choice if his markers remain elevated. In that case, your urologist is right that chemotherapy would be required.

[AustinsMom]

Hi Lori,

It must be difficult getting all this information second hand and trying to make sense of it. I am stumped as to why the Oncologist told Eli he doesn't expect the AFP to drop because of the pathology of his tumor. The statement about recommending a RPLND is also something I would get another expert opinion on as well. If Eli's markers normalize, with no LVI, I believe surveillance might well be an option.

Hopefully, if you choose to consult with Dr. Einhorn, you can do so quickly. I think being in limbo and not having a "plan if attack" is sometimes more difficult than fighting the battle. Once you know what the next step is going to be and feel comfortable it is the right choice for Eli, I think you will be able to take a deep breath and regroup.

Thinking of you and sending a big hug your way. You are doing an INCREDIBLE job looking out for Eli and finding him the BEST care possible!

Diane

[zesasmom]

Thank you all for your replies. My husband called dr einhorn s office today and left a voice mail re consultation with his secretary shelly.

Im not an expert on tc by any means but ive done my research and i also do not understand why eli would be told his markers most probably wont drop. So thanks scott and diane for confirming this. And yes scott if his markers dont return to normal eli becomes stage Is and chemo would be in order.

Diane i can only hope in six months i can find the strength that you seem to have. Your son has such an advocate in you and im so glad he s doing well. Lately im feeling completely overwhelmed and just i guess so afraid for my son. Im a planner and yes being in limbo is the worse especially when i think i kind of understand the staging and protocol and two drs make two completely different recommendations. But i guess waiting is necessary.

Anyway this forum and the experiences kindness and encouragement i receive from all of you saves me.

Much thanks

Lori
Eli s mom

[eodtech2001]

Can I make a suggestion to you. Please get hold of the mayo clinic here in Jacksonville you are only a 2 hour drive away and it will put you at ease being at a center of excellence. I can not speak for the make up of your sons cancer cells. But what I can tell you is that the Doctors at the Mayo clinic will do everything in thier power to do the right thing for your son. They will not leave you out of the treatment plan and they will include you in on everystep of the process. If they dont know the answer then the will call right there in front of you to get the right answer.
Mayo clinic is a one stop process, blood draw on first floor and before you get to the 8th floor to see Onco the results are already posted to your web account. They are fast and do not play around. So for a second opinion try closer to home and if you still want a 3rd opinion then go to the best DR E.
My onco consults with Dr E all the time on my case and the other guys being treated at Mayo. Dr Tan has even consulted both IU and Sloan so if that is not patience service I dont know what is.

I am about to finish up my second cycle of BEP. I have one more day of Bleomycin and then my rest period so start the 3rd cycle and I can put this all behind me. It may seem like a long road but the road gets a lot shorter when you start going down it.

Please feel free to ask for direct numbers at Mayo or anything else I can help you with along your son's journey.

"Keep your head down and your chin up"

Stormin Norman

Stage IIA
pure sem
3xBEP
Started Chemo June 2012

[zesasmom]

First thanks everyone for your replies suggestions.

Not sure ifthis should be a new thread if so feel free to move it.

Ive been reading through past threads and came across a comment regarding yolk sac....if tumor is pure yolk sac or the majority is yolk sac that it seems to be more of a struggle and "some dont make it". Can anyone comment on this. Ive read other post that yolk sac is responsive to chemo. I know each person s case is unique but any further info would be appreciated. Sorry if im overreacting but lately im having a hard time and reading this was even more frightening as my son has 50% yolk sac.

Thanks as always for the people on thisforum.

Lori

Mom to eli 22years old
I/0 3 weeks ago
50%yolk sac 35% embryonal 15% seminoma no lvi
Stage I a
Afp 98 before i/o other markers normal
Bloodwork tomorrow to check markers

[nciungan]

First thanks everyone for your replies suggestions.

Not sure ifthis should be a new thread if so feel free to move it.

Ive been reading through past threads and came across a comment regarding yolk sac....if tumor is pure yolk sac or the majority is yolk sac that it seems to be more of a struggle and "some dont make it". Can anyone comment on this. Ive read other post that yolk sac is responsive to chemo. I know each person s case is unique but any further info would be appreciated. Sorry if im overreacting but lately im having a hard time and reading this was even more frightening as my son has 50% yolk sac.

Thanks as always for the people on thisforum.

Lori

Mom to eli 22years old
I/0 3 weeks ago
50%yolk sac 35% embryonal 15% seminoma no lvi
Stage I a
Afp 98 before i/o other markers normal
Bloodwork tomorrow to check markers

Even with advanced disease, regardless of type, the cure rates are very high. If your son is stage 1a with no LVI, I would venture to think you're in good shape but the earlier you can confirm that, the better. Best of luck.

[Davepet]

..if tumor is pure yolk sac or the majority is yolk sac that it seems to be more of a struggle and "some dont make it". Can anyone comment on this. Ive read other post that yolk sac is responsive to chemo.

I could have this wrong, but if memory serves me, Seminoma is the least aggressive, EC & yolk sac more aggressive about the same, & chorio is the most aggressive.

All are responsive to chemo, although chorio can be an especially tough one to crack. What matters more than the type is if it's spread & how far. Looks like his CT is clear so his prognosis is quite good right now.

If you are still concerned & haven't emailed Dr Einhorn, please do & get the reassurance you need from the top TC man.

Dave

[bryce-ord]

Ive been reading through past threads and came across a comment regarding yolk sac....if tumor is pure yolk sac or the majority is yolk sac that it seems to be more of a struggle and "some dont make it".

I know the post you are talking about. When I first read then I was scared too (my tumor was 100% Yolk Sac). Try not to worry too much. It appears Yolk Sac only becomes a problem in later stages, when it is widespread. In reality it is very treatable in all stages. I was stage 3 with a very aggressive form of Yolk Sac. It had formed a lump on my testicle and metastasized to my neck in under 25 days. The first time I saw my Oncologist, he ordered new CT Scans because the week old ones did not mach the current metastasization. As you can see I was a much later stage than you son. But it only took the standard treatment (BEPx3) to be cured (In reality all the lymph nodes returned to normal size after only 25 days of treatment). A high percentage of Yolk Sac in a tumor is rare. But that's all. It's not a bad thing, just rare.


On a lighter note:
My in-laws are hosting a family from Germany. I got to meet them for the first time last night. It turns out the husband and I have more in common than being motorcycle enthusiasts. He was diagnosed with Testicular cancer a little over a year ago. He had is 1 year surveillance appointment (All clear) only days before flying to Canada.

[zesasmom]

Thanks for your replies. I feel much better after all of your encouraging words.

Dave my husband just spoke with dr einhorn s secretary today and we will be forwarding all records to him for review and then either meet with him or phone consultation.

Bryce...thank you so much for sharing your experience and congratulations on your all clear! Those words were very scary to read but i kept searching and found many stories of people just like you with 100% yolk sac or a tumor with predominantly yolk sac that are all clear many years later.

Much much thanks!

Lori
Eli s very worried mom

[zesasmom]

Today has been so stressful waiting for my son s first post i/o marker results. I can certainly understand how stressful it must be tothose on survelliance.

Anyway the results: afp before orchidectomy 98.1 three weeks later 10 ( normal range less than 9)

Hcg <5 normal range

Ldh prior 119 after i/o 125 (normal range 100-205) why would this increase even though its still within normal range?

Afp is still one number higher than normal.....is this within the half life....also my sons markers were done two weeks prior to orchidectomy so could the numbers have risen even higher than 98.1 ??

In anycase gathering all info to forward to dr einhorn tomorrow. Also had a second pathology reading that were waiting on.

As you may recall eli s urologist recommended chemo; his oncologist rplnd so we will be following dr einhorn s suggestions. Needless to say My son is hoping for surveillance.

Eli is coming to nc on monday and then leaving for "home" in the berkshires for a couple weeks ( we lived there until recently). I feel with this report he is somewhat on surveillance until his next appointment on aug 6th of couse dependingon what dr einhorn says. I hope its a good idea for him to go but he s determined to be with his friends. Hes been through so much stress lately that i do want him enjoy himself. However if an rplnd is truly the next step should that be done within six weeks after i/o. I read somewhere there s a little more flexibility 6 - 8 weeks?

Any ideas about these numbers greatly appreciated as always......truly this forum has saved me.

Lori
eli s mom

Pathology: yolk sac 50%
Embryonal 35%
Seminoma 15%
No lymphatic invasion

[Davepet]

Anyway the results: afp before orchidectomy 98.1 three weeks later 10 ( normal range less than 9)

The important thing is it has come way down to almost normal. One point out of normal is nothing to worry about, mine did the same thing a couple of tests ago & was back under normal on the following test. Some variation is normal.

Ldh prior 119 after i/o 125 (normal range 100-205) why would this increase even though its still within normal range?

Again these numbers vary & that is why there is a range that is considered normal. Nothing to worry about.

Afp is still one number higher than normal.....is this within the half life....also my sons markers were done two weeks prior to orchidectomy so could the numbers have risen even higher than 98.1 ??

It's possible it had gone higher, but like I said above it's close enough to normal to not worry, Dr Einhorn isn't concerned unless AFP goes over 20, I think.

In anycase gathering all info to forward to dr einhorn tomorrow. Also had a second pathology reading that were waiting on.

As you may recall eli s urologist recommended chemo; his oncologist rplnd so we will be following dr einhorn s suggestions. Needless to say My son is hoping for surveillance.

I'm glad you're getting his opinion, I would not be surprised if he says surveillance, but I'd think at most 1 or 2 BEP.

Dave