Need to choose my path

[boram]

Hi all i just came back form the hospital and got my patholgy report
i will have to choose my path in about a week and want to share and to ask u.

following is my medical data

Data Pre Left I/o:

9/30/07 diagnostic
Markers - afp-42 hcg-115
Ultrasound - 15 MM diameter tumor with amplify
blood flow
10/2/07 CT Scan more or less ok
10/8/07 Left I/O


my pathology microscopy description (10/25/07)

Nonseminomstous mixed germ cell tumor
the neoplasm is composed of
embryonal carcinoma(approximatly 60%)
yolk sac tumor (30%)
and few foci of atypical trophoblast proliferation compatible with choriocarcinoma (a minor tumor component).


The neoplasm measures 1.2*1.1*1 cm and reaches up to tunica albuginea
with out invasion through it.
Epididymus,tunical vaginalis and spermatic corde are free of tumor.

No Vascular invasion was found.

Stage Pt1.

Immunohistchmical stauns:
Pan Ck,Afp,CD30 and PLAP -focally Positive.
BetaHCG is Positive in the small Part of cells (trophoblast) and show a marked
background stainin(the latter finding was also see in AFP stain).

i am still waiting for blood result post I/O,and oncologist appointment.


my urologist point me two option :
1) LP RLPND
2) 2XBEp
with no surveillance option (casue there is 60% embryonal carcinoma)

i am in across road trying to choose the best path .

any suggustion ideas or member with similar data can be very helpful

is it posible for surveillance in such terms???

tnx boram .

[Margaret]

Hi Boram. Sorry you have some tough choices to make.

I always fear giving advice because I am not a doctor but I will try and if I get anything wrong, the wise ones here will correct me .

I am surprised that one of the choices is 2 rounds of BEP, I thought the standard course was 3 rounds or 4 rounds. Don't get me wrong, I would rather you not have to do any of it, but I want to make sure they get the entire monster the first time.

The most important thing is that you are fighting this thing and I believe it is a fight you will win.

M.

[Fed]

I am surprised that one of the choices is 2 rounds of BEP, I thought the standard course was 3 rounds or 4 rounds.

The NCCN Guidelines for stage I-B nonseminoma states that one of the treatment options, in addition to surveillance and RPLND, is 2xBEP (commonly referred to as adjuvant chemo). If there is nodal invasion, that would make it stage II, warranting the use of 3xBEP.

Boram, I am surprised that you were not offered surveillance. Your primary tumor is small, and without L/V invasion, you are pT1 which makes you stage I-A. The orchiectomy alone has about a 70% chance of having cured you. If you had been offered the possibility of surveillance, would you consider it and be able to follow through with it? The doc is right in saying that the EC component makes it more aggressive, so you need to weigh that in your consideration of future treatment.

[Jay68442]

Boram
Having had to deal with a relapse after my initial treatment makes me always look to go aggressive. In my own case if I was treated aggressively on the first go round I may not have relapsed. That being said it is a tough decision. Seek out more then one opinion for the best doctors.

[oscar666]

Boram,
I know what you feel. It is difficult to make the right decision.
Actually, I think, most of us make the doctor’s suggested one.
I was scared of more surgeries, but I went to RPLND and am OK with my decision.
It was SERIOUS surgery. Risks and so on …
I had no major side effects, but already 4 months after the surgery my ejaculation is just few drops.
It was almost nothing right after RPLND and now is getting better.
The surgeon was good, he applied time consuming (7h) nerve-sparing techniques. Pulling the nerves over there might cause that, he said.
(BTW I read somewhere that Right sided is better than Left RPLND regarding the nerve sparing success)
I have one 15-year’s old son. I did also sperm banking.
The erection and sexual feeling is exactly as it was before. No problems there.
The results of RPLND showed all clean, so it looks that I didn’t need such surgery.
That’s the weird thing: before making the RPLND you don’t know that you dont need it.

In two words:
You should make a sperm banking before RPLND or chemo. It takes some time.
Regarding RPLND: Guideline said – it should be soon after I/O.
Whatever is your choice, count these two things.
You will go over all this stuff, everything will be fine and you will feel again healthy, believe me.

[Margaret]

The NCCN Guidelines for stage I-B nonseminoma states that one of the treatment options, in addition to surveillance and RPLND, is 2xBEP (commonly referred to as adjuvant chemo). If there is nodal invasion, that would make it stage II, warranting the use of 3xBEP.

Boram, I am surprised that you were not offered surveillance. Your primary tumor is small, and without L/V invasion, you are pT1 which makes you stage I-A. The orchiectomy alone has about a 70% chance of having cured you. If you had been offered the possibility of surveillance, would you consider it and be able to follow through with it? The doc is right in saying that the EC component makes it more aggressive, so you need to weigh that in your consideration of future treatment.

See what I mean? Thank God Fed is always here to double check me.

[DennyD]

The NCCN Guidelines for stage I-B nonseminoma states that one of the treatment options, in addition to surveillance and RPLND, is 2xBEP (commonly referred to as adjuvant chemo). If there is nodal invasion, that would make it stage II, warranting the use of 3xBEP.

Boram, I am surprised that you were not offered surveillance. Your primary tumor is small, and without L/V invasion, you are pT1 which makes you stage I-A. The orchiectomy alone has about a 70% chance of having cured you. If you had been offered the possibility of surveillance, would you consider it and be able to follow through with it? The doc is right in saying that the EC component makes it more aggressive, so you need to weigh that in your consideration of future treatment.

I have a couple of questions if I may... Maybe I am reading this wrong, but I wanted to ask this since he had elevated markers before the I/O and has not recieved his post surgery markers yet, what if they are still elevated?

Have they dropped ? If I read correctly he posted his AFP was 45, and his Hcg was 115, BEFORE surgery. Are they dropping? Are they higher? Who knows. One does't really know until they come back right? From the timeline of the start of this for Boram ,it has been almost 3 weeks. Wouldn't it be prudent to see what the numbers are from the post I/O tests before making making choices on his treatment plan? I

Another thing would be his previous posts where , again, correct me if I am wrong in reading it, he said " CT-scan -Point mesenteric Lymph nodes little bit enlarged ( Dr told me they MIGHT be normal ) ". Wouldnt it be standard procedure to do another ct-scan to check the nodes in case they MIGHT NOT be normal? From my experiences with Aaron, and others, it is that they will repeat the ct-scan to recheck the nodes that might be normal.
Under your determnation that he is stage 1a, is it not stated that in Stage 1a postdiagnostic treatment,RPLND? you seemed to discount the RPLND as an option. We are interested in why?



Keeping mind the NCCN guidelines, did I not see a post here in the last week ago where Dr Einhorn was using the information from the German study and that the results of that study were so sound that IU was using where appropriate a SINGLE cycle of BEP as Adjuvant rather than 2 at this stage , and that is has been proven to be just as effective? Reading alot of the posts here, I see all the time where people are saying " less chemo the better". That certainly is true, so would it not be worthwhile to ask if that would be appropriate?

One more thing is pathology. 60 % Embryonal Carcinoma, 30 % yolk sac, and a mention of a small bit of Choriocarcinoma. Would that be the final 10 or so % ?

I am just trying to understand the basis for your post..We just try to learn as much as we can, but in my mind, sometimes I need to understand the basis of a post like this. Based on our experiences, we wrote and suggested he get the results of his markers, asked if he had repeated the ct-scan, which a month has passed from the last results, contact Dr Einhorn regarding a second opinion as to the chemo, and would the new 1xBEP be appropriate for him, and other options that may be appropriate based on the further tests. Is this something new that Drs are doing ? Are the folllow-ups ct's , post I/O and markers, and such not needed any more?

Thank you in advance.

I would appreciate if you could explain when you have the time. From everything we have learned, there is much more information that needs to be determined, and if that has changed, we certainly like to know also.

Dennis and Nancy

[Rover]

Jay poses an interesting question. Though, if a person recurs it’s probably natural to wonder if more could have been done. Hope I never find myself in that situation. Much love to you, Jay.

I chose surveillance for the second tumor that was almost identical to Boram, 60%EC, 35%YS, 5%T but slightly larger at 1.5cm, lower AFP at 36 but with lymphovascular invasion and EC noted as invading vasculature for a stage Ib. My onc was leaning toward 1xBEP (citing European studies) but after consulting with Einhorn we were confident proceeding with surveillance. Part of this was not wanting to over treat. Also part of the consideration was my wife being 36 weeks pregnant at the time of diagnosis. All factors, clinical and personal, have to be considered. From what you have posted you appear to be a candidate for 1xBEP, 2xBEP or Surveillance but this depends on the markers.

Dennis you are correct, if they don’t come down at a steady pace surveillance will be out of the picture and 3xBEP or 4xEP will be the way to go. We checked AFP (bHCG was not elevated) every 5 or 6 days until it was back in normal range. This took a week and a half from 36. I asked about a post I/O CT but they said it wasn’t necessary with a clear CT a couple weeks earlier and markers coming down.

RPLND, at least in my case, was ruled out as an option because EC more commonly spreads through the vasculature showing up next in the lungs.

Boram: I hope your markers come down. Push to get them checked often, until you are in normal range the rate of decline is as important as the bottom line number. Consult with an expert and proceed with as little treatment as you feel confident and comfortable with.

-chris

[boram]

Hi

i will try to get those post i/o test (CT ,chest X ,Markers) as soon as i can
and a good oncologist that will help me find the best path .
i will update u when i get the post test result .
.
its really help me ,medically and emotional side to share it with u .

At the beginning ,all i was trying to do is to find a way how to save my left testicle in any price ,even by delaying medical procedures,but after realizing what kind of thing i am confronting,i understand the faster and earlier u treat it is better.

This combination of tens of people that have personal expriance with tc sharing there opinions,is very very helpful.
i want to tnk u for the rapid responses and the new information u point me.

Boram

[Fed]

Under your determnation that he is stage 1a, is it not stated that in Stage 1a postdiagnostic treatment,RPLND? you seemed to discount the RPLND as an option. We are interested in why?

I don't mean to discount RPLND as an option for stage I-A non-seminoma. Rather, I mean to ensure all appropriate options are given full consideration.

Boram's pathology indicates pT1, which, unless he had elevated markers or some other invasion, is I-A and not higher. You are correct that RPLND is an option listed in the NCCN Guidelines for post-surgical management of stage I-A non-seminoma. RPLND is very useful for staging purposes, but it is also major surgery. It has been widely documented that the chances of a relapse with stage I non-seminoma are about 30%. This would mean that if everyone with stage I-A non-seminoma were treated with an RPLND, 70% of these patients would be over-treated. Because of this, surveillance is also an acceptable option. Of course, this requires that the patient be compliant with the strict schedule of surveillance radiology and labs. If there is a chance a patient might be non-compliant (as can be the case with younger patients, for example), then I can understand pushing for an RPLND. While I myself did not have non-seminoma, the argument is identical to the decision any stage I-A seminoma patient has to make when choosing between surveillance, adjuvant radiation, or adjuvant carboplatin (except that the over-treatment percentage goes up to 80-85% if you treated everyone with adjuvant therapies).

You mention a similar experience with your son Aaron. Would you mind sharing a few details about his case? I think it would be helpful to bring it up so I can understand your rationale for the comment.

This combination of tens of people that have personal expriance with tc sharing there opinions,is very very helpful.
i want to tnk u for the rapid responses and the new information u point me.

Not a problem. People are here to help each other out. We speak from the experiences we have had. The important thing is that you make decisions that are right for you (and in accord to the best and correct treatment).

[Jay68442]

Jay poses an interesting question. Though, if a person recurs it’s probably natural to wonder if more could have been done. Hope I never find myself in that situation. Much love to you, Jay.

First let me start by saying everyone's situation is unique to them and should be treated as such. I was diagnosed 19 years ago and I'm sure the guidelines on treatment have changed considerably. Here was my situation. I was diagnosed Stage II, lymphovascular invasion. If I remember correctly there were 2 enlarged lymph nodes. I don't remember the sizes. I was given 3 rounds of chemo after the I/O. No mention of a RPLND at that time. So 1 year after finishing the chemo the cancer was back. In my case, if I had been given a RPLND before or in place of the chemo I might not have had to undergo high dose chemo and a bone marrow transplant. I requested my medical records a few weeks back and hope to have them soon so I can review the details myself.

[Rover]

First let me start by saying everyone's situation is unique to them and should be treated as such.

I absolutely agree.

Hope my post wasn’t read as me being critical of your advise. Far from it. I feel strongly that people shouldn’t experience any more treatment than is needed for a successful outcome. That’s easy for me to say because I haven’t had a recurrence. Reading you post made me wonder if I would feel so strongly or speak so freely if I had walked your walk.

-chris

[Jay68442]

Hope my post wasn’t read as me being critical of your advise.

Not at all Rover. I was just posting my reasoning for my statement to be aggressive.

[TCLEFT]

I absolutely agree.

Hope my post wasn’t read as me being critical of your advise. Far from it. I feel strongly that people shouldn’t experience any more treatment than is needed for a successful outcome. That’s easy for me to say because I haven’t had a recurrence. Reading you post made me wonder if I would feel so strongly or speak so freely if I had walked your walk.

-chris

Sorry to veer off topic, some things just hit a nerve. I'm pretty sure all of our walks are close enough to relate on some level. All the wounds are significant, regardless of degree. So should be the healing. Unfortunately the War remains the same. Please speak freely always.

[Karen]

Absolutely Mark. We all look at things from a different perspective as far as aggressiveness or playing the odds. The beauty of this site is the ability to look at things in ways we may not have thought of before.

[TCLEFT]

Absolutely Mark. We all look at things from a different perspective as far as aggressiveness or playing the odds. The beauty of this site is the ability to look at things in ways we may not have though of before.

I can always count on you to understand what I mean and articulate it better, quicker than a Jersey Girl can flip a bird in traffic.
Love Ya ,
Mark

[Scott]

The beauty of this site is the ability to look at things in ways we may not have thought of before.

As a CCC friend recently said, "I learn most from those with whom I disagree!"

[Rover]

When I wrote about any hesitation to speak freely, Sorry…. I’m from Jersey too. Grew up near Trenton. The ‘bird’ is my friend. So it will be a cold day somewhere before I censor myself. I will always speak freely. However, I think we all understand the strong feelings associated with everything that is cancer. It hurts to think something I say might hurt a fellow survivor, caregiver or supporter. Difference of opinion is healthy. Discounting another’s feelings or experience is not.

Boram: Hope I haven’t hijacked this thread but can say with confidence everyone here will have great advice to offer with every bit of info you share.

-chris

[TCLEFT]

When I wrote about any hesitation to speak freely, Sorry…. I’m from Jersey too. Grew up near Trenton. The ‘bird’ is my friend. So it will be a cold day somewhere before I censor myself. I will always speak freely. However, I think we all understand the strong feelings associated with everything that is cancer. It hurts to think something I say might hurt a fellow survivor, caregiver or supporter. Difference of opinion is healthy. Discounting another’s feelings or experience is not.

Boram: Hope I haven’t hijacked this thread but can say with confidence everyone here will have great advice to offer with every bit of info you share.

-chris

We shall do no harm. Or we'll try like Hell not to. We're all in the same boat more or less. Somedays it looks like The Flying Dutchman. Somedays a Life Raft. Either way we're afloat.
Much Love
Mark

[petep]

boram,

first, no matter what you choose, your cure rate chances are very similar...and very high - this should give you some relief..

I was a stage 1 also, see my signature - chose surveillance...had a recurrence and the 3xbep...

maybe I should have gone rplnd, or 2xbep....but, in my mind, as fed wrote...I was playing the odds...the 70% chance I was cured with surgery alone...and the embryonal component - which can sometimes jump to the lungs...made me think that if I have anything, I'll probably do the chemo.

But, some would go crazy with the waiting/surveillance...but here is a little secret...if you have rplnd, or 2xBEP....you will be placed...drum roll....yes, on surveillance...but chances are now in the much higher probablity range that you are all done....versus 70% with the surgery alone...

I suppose the point is, ultimately, it almost becomes a matter of preference at the great, early stage that you are at....one choice is not necessarily better than another, in trems of OVERALL cure rate....now you are just deciding what will be easiest for you to deal with.

You may want to consult with an oncologist (I read this quickly and I only noted urologists opinions).

If there is only one thing I can stress, it's that you always stay on top of your surveillance....even if you get an rplnd or 2xbep.

all the best.

pete