Dr. Einhorn's email? And more updates...

[confuseduser]

Hey guys, well I just got back from my appointment with an oncologist over at Kaiser Permanente... and lets just say, I did not feel confident with him. In fact, my parents (as well as I) felt like he was pretty bad. He wasn't reassuring, he barely described anything, he didn't even state why he chose his recommendation (nerve sparing rplnd), his answers were shorty worded, and overall, we just didn't like him. No way will he be my oncologist. He was also slow and well... old.

I challenged him on his recommendation (thanks to all my knowledge acquired from here and hours of researching ) and he was not convincing me. And I consider myself pretty educated on TC.

As of now:

My urologist is saying do chemo, maybe 1 or 2 sessions.

Oncologist is recommending rplnd.

Update on my situation:

- The pathology showed everything was confined to the testicle (non-seminoma 95% EC, 5% Yolk)
- Stage 1-A
- HCG went back to less than 1 (normal) after surgery, but my AFP was 17 (180 before surgery, i think). My AFP should be >8. My urologist said I did the markers early and expects my AFP to be normal when I do it again tomorrow. We met last Saturday. So I guess this is good news, right?

More news: I'll be switching over to my mothers insurance which is Blue Cross PPO, and I'll be heading over to UCLA medical center for further treatment/follow ups.

I like my urologist, and I feel comfortable with him - I plan to keep him after all is said and done.

Couple questions:

- Well, what's Dr. Einhorn's email? It's the main purpose of this thread . Does he accept emails from random TC people? I'd love to have his opinion on my situation. I'll be sure to send him everything I can that is important.

- In terms of urology and testicular cancer, is UCLA the top dog in Southern California? I've also heard good things about City Of Hope... Not sure where to go, both are excellent from what I've heard. I can pretty much go anywhere I want; would love to have anyone's input.

Thanks everyone.

[Lovemyman]

I e mailed Dr.E. and he got back to me the same day. I suggest you have specific questions and he will give you concrete answers as best he can.

[CancerSux]

That is great that the Stage 1A, confined to testicle, was confirmed.

My urologist is saying do chemo, maybe 1 or 2 sessions.

Oncologist is recommending rplnd.

Really? The oncologist recommended RPLND with no evidence of spread? Not chemo? Unusual - general recommendation would be some BEP, or possibly just EP. Definitely get an opinion from another doc, and find one you can trust.

UCLA the top dog in Southern California? I've also heard good things about City Of Hope

In the general oncology world, City of Hope is much more well known, although UCLA does have it's positives. Given the choice, I would go with City of Hope (actually, we were thinking of contacting them since we are on the west coast, but ended up conferring with Einhorn instead.

As for Einhorn, his email is online (don't have it right now, sorry), and he does confer with all sorts of 'random' tc people. If you do choose to contact him, expect a short answer (likely suggesting chemo). But given the staging and path, the standard course would be chemo and you may choose to confer with another oncologist before bringing in Einhorn.

Good luck!
Tracy

[tripletmom]

We are in Denver and have been working with Kaiser in my husbands 2nd testicular cancer. I will tell you that I think the care and knowledge base for TC has been appalling. Kaiser is well known and excellent at preventative care but in the case of a relatively rare cancer - at least to us- they are sorely deficient. Unsure what to do-all the way from the urologist to the pathologist ( couldnt see the seminoma and had to send it our to Mayo) to the oncologist who had "NEVER HEARD of giving Lasix with the BEP regimen" and was going to suspend my husbands treatment because of fluid overload. Early on I felt we needed to get a second opinion from an expert so that we would be confident of the treatment plan we were going to take. I called Dr. Einhorn's office at Indiana University and made an appointment to see him for a consult. It was totally worth the money and time it took to go out and see him. It has allowed me to email him with out guilt- he is being paid as a consultant. And he has been invaluable in keeping my husbands treatment on track. By all means really educate yourself. This forum is so rich with information and get a second opinion from a center of excellence. You will never regret that path. Hope this helps.

gina

[confuseduser]

Really? The oncologist recommended RPLND with no evidence of spread? Not chemo? Unusual - general recommendation would be some BEP, or possibly just EP. Definitely get an opinion from another doc, and find one you can trust.

That's what was odd to me. I said something along these lines "My CT was clean, pathology showed everything was confined to the testicle, I'm stage 1, my tumor markers are essentially getting back to normal, why would you recommend that?"

Just a weird Doctor.

Is this Dr. Einhorns email?

leinhorn@iupui.edu

Found it off a google search. Just want some confirmation. I'll get on the email asap.

[TGlover]

Probably not required to email Dr E as there is a huge chance you are cured already from the I/O as stage 1.A.

Options generally for 1a with non seminoma:
1) Surveillence
2) 2xBEP
3) RPLND

The fact you have tumour markers makes a great case for surveillence as a relapse is detected very quickly. Also where I am (Australia), RPLND is not generally offered for stage 1 (others might chime in).

[Elliott]

I with TGlover, when you said 1a with normalizing markers I was wondering why they would not offer survelliance as option. I would defiantely be looking for a second opinion. No sense in overtreating if you are willing and able to keep up on survelliance. RPLND seems incredibly drastic sense it was "confined to the the testicle". Best of luck keep us updated!

Kimmy

[Davepet]

He was also slow and well... old.

Define "old". Thirty six years ago when I had my first TC, every TC patient got a RPLND, regardless of the type of TC, the path report, & further test results ( & there was no such thing as a CT scan, lymphangiograms were the defining test for TC spread).

If he's old school, he may be thinking along those lines, & a 2nd opinion with a more up to date onc is in order.

Dave

[MitchP]

Hi Confused,

I was diagnosed quite recently with a very similar situation to you.

Non seminoma , EC, i didnt want to know my full pathology so cant state that.

I also had everything confined to testi and was classified as a stage 1a with no vascular invasion or otherwise.

I was given the option of quite an intense surveilance schedule or 2xBEP. I opted for the 2xBEP and i go back as an inpatient monday to start my 2nd course.

For me the chemo was the best choice. Not only are you going to catch any cells that might have escaped but mentally its great to know that your taking action against your situation as opposed to a "wait and see" mentality. I feel good knowing that even if i had a relapse that i did EVERYTHING i could to beat it.

[Davepet]

Every person has to weigh this for themselves, some choose to do "everything possible" to beat it the first go round, others prefer to avoid treatments that might not even be needed at all.

The odds of a complete cure are almost exactly the same no matter which treatment you choose, so you can't *really* go wrong from a survival standpoint.

It's more a matter of what lets you sleep at night. Choose what makes you comfortable.

Dave

[TC Destroyer]

Maybe a better option is to get a second opinion from the nearest center of excellence. Attached below is a link to TC experts from all around the globe. I see two in the LA area.

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

[Aegean]

Please follow TC Destroyers advice above. Contacting Einhorn is not necessary as what you need is a good oncologist locally that you feel comfortable with. Besides, if your afp normalizes, he would very likely recommend surveillance as a first option.

[CW406]

You probably should not bother Dr. E. with this as your case is textbook. Find an oncologist who is a human being; he or she will likely recommend surveillance. If you HAVE to do something, I'd say to go with BEP, 1 or 2x. Given the high EC content and early stage. I would not do an RPLND. I'm feeling like your current oncologist is truly from the old school, like Dave was alluding to. If you were in Europe I believe you would get surveillance or BEP according to their protocols since you are 1A but with one risk factor (high EC component).

[jcastro4089]

There was a post recently about Dr. Einhorn and his generosity. Here is a link to my post, http://www.tc-cancer.com/forum/showp...1&postcount=31, I don't want to trouble you guys with re-posting it, but to sum it up:

I had clinical stage 1A, pathology said contained within the testicle. The doctor recommended survellience.

I decided to contact Dr. Einhorn, even though what I had is classified as "text-book" by everyone here. It turns out, mine was far from textbook. My pathology report showed PNET, and thus Dr. Einhorn recommended open RPLND.

I agree I would hate to bother Dr. Einhorn over silly matters, but you never truly know if your case is "text book" or not, so when its your health you are concerned about, I feel that being confident in your decision is priceless.

[CW406]

Having a PNET component is, as you mentioned, far from textbook. The original poster's case does not appear to have such complications.

[confuseduser]

Einhorn got back to me:

Assuming AFP normalizes options are surveillance, RPLND or 1 course of BEP. We prefer surveillance but all options are appropriate.

Man of few words.

So basically my Urologist is saying chemo, that oncologist is saying RPLND, and Dr. Einhorn is essentially saying surveillance.

I knew this would happen

Tough decision ahead of my guys. RPLND is out of the question for me, so I have to chose between Chemo or surveillance...

[Aegean]

@jcastro: if you posted that your original or any other pathology stated PNET, no one here would have ever classified you as "textbook". In fact, I posted right after your first post:

With PNET, you would not have been considered textbook and I think you did the right thing. Further, the proposed treatment by your original doc was not the correct way to go, as evidenced by Dr. E's recommendation... but, again, you were not textbook to begin with.

So, I really do not understand you making the statement:

I decided to contact Dr. Einhorn, even though what I had is classified as "text-book" by everyone here

When clearly the first post by a moderator reacting to your story was mine. Let's keep things straight folks.


@confused: As I mentioned earlier, he (Dr. E) would go with surveillance assuming markers normalize. If you relapse, you will be looking at 3xBEP. On the flip side you can do 1xBEP now...

[Evtrai]

I'd go with chemo, BEPx1 isn't that bad... it's mainly the scare than anything else, was for me anyways, you would be on a safer side, I would rather take BEP x1 now than BEP x3 later, I would be also take a load of your mind so you wouldn't be on a constant panic wondering if it's back or not; that's just me though. I would also choose chemo over RPLND, I would if I could now myself but it has come down to that.

[NY_prof]

Just to weigh in, too, I had a similar diagnosis -- Stage 1A confined to testicle. I had some minor complications -- radiologist suspicions about lymph nodes, questions about slide preparation that kept alive the possibility to LVI -- and I decided to do one course of BEP. Einhorn gave you the classic 1A answer: surveillance, RPLND, chemo.

I, too, decided that RPLND was not an option; I felt that the chance of messing up ejaculation, and losing some large chunks of my body were not right for me at this moment. But I also was incredibly anxious about the idea of watching-and-waiting, and had gotten so anxious during even the period in which I waited for test results, second opinions, CT-scans, etc., that I decided I would be more comfortable if I took a decisive action.

Other posters will tell you that 1xBEP is not that big a deal -- and it certainly isn't, when you see the other patients in the chemo lounge doing much longer-term, more intense chemo. But it's not a walk in the park, either. I'm a young (30), relatively fit (5x/week@gym) guy and it knocked me for a loop. Others seem to have gotten through more or less unscathed. But I think I definitely overestimated my ability to breeze through the one round and bounce back. But when all was said and done, I was pretty totally recovered within a month of completing the one round.

With this disease, and with this decision, you're lucky because there's no wrong answer. That was a consolation to me: whatever I chose, this thing would be taken care of, and at our early stages, we'll most likely walk away with a closed chapter in a pretty short amount of time. But the decision can be fairly exhausting and difficult, and it's one that only you can make. I spent a lot of time during the decision talking to friends and weighing options and talking to family and gathering feedback, but the truth of the matter was that that only drove me more crazy: no one else had cancer, just me. It was my body, and it came down to what I felt most comfortable with.

So keep in touch, stay attuned to your own process, keep the people on the board in the loop, and take it all with a grain of salt. Reading peoples' responses here is very very helpful, and provides a wealth and array of information and experiences. But it's pretty individual at the end of the day.

Good luck!

[Chukarboy]

What kaiser? Riverside? I just had my orchiectomy Saturday and waiting for results. Haven't seen a oncologist. The urologist i had should be fired and I'm going to right formal complaint. What's up with Kaiser they are usually great.

Let me know who you find, I'm right next door to you.

Hey guys, well I just got back from my appointment with an oncologist over at Kaiser Permanente... and lets just say, I did not feel confident with him. In fact, my parents (as well as I) felt like he was pretty bad. He wasn't reassuring, he barely described anything, he didn't even state why he chose his recommendation (nerve sparing rplnd), his answers were shorty worded, and overall, we just didn't like him. No way will he be my oncologist. He was also slow and well... old.

I challenged him on his recommendation (thanks to all my knowledge acquired from here and hours of researching ) and he was not convincing me. And I consider myself pretty educated on TC.

As of now:

My urologist is saying do chemo, maybe 1 or 2 sessions.

Oncologist is recommending rplnd.

Update on my situation:

- The pathology showed everything was confined to the testicle (non-seminoma 95% EC, 5% Yolk)
- Stage 1-A
- HCG went back to less than 1 (normal) after surgery, but my AFP was 17 (180 before surgery, i think). My AFP should be >8. My urologist said I did the markers early and expects my AFP to be normal when I do it again tomorrow. We met last Saturday. So I guess this is good news, right?

More news: I'll be switching over to my mothers insurance which is Blue Cross PPO, and I'll be heading over to UCLA medical center for further treatment/follow ups.

I like my urologist, and I feel comfortable with him - I plan to keep him after all is said and done.

Couple questions:

- Well, what's Dr. Einhorn's email? It's the main purpose of this thread . Does he accept emails from random TC people? I'd love to have his opinion on my situation. I'll be sure to send him everything I can that is important.

- In terms of urology and testicular cancer, is UCLA the top dog in Southern California? I've also heard good things about City Of Hope... Not sure where to go, both are excellent from what I've heard. I can pretty much go anywhere I want; would love to have anyone's input.

Thanks everyone.

[confuseduser]

Maybe a better option is to get a second opinion from the nearest center of excellence. Attached below is a link to TC experts from all around the globe. I see two in the LA area.

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

Wow thanks for that link... I guess I'll see one of them.

Leaning towards this Doctor:

http://www.uscurology.com/doctor/bio/view/126223

Just reading his credentials is very assuring... More calling and setting appointments...

[underdog521]

1. Do what you must to feel comfortable.
2. I'm Kaiser too and I actually feel really comfortable with my oncologist =) (I'm NorCal) 36 Yr old guy who's really thorough, sends me studies that he thinks I might find interesting, talks to me about why he feels I should be treated one way instead of another. This is really important to me considering I'm not going to follow nccn guidelines and get CT scans every 2 months for the first year etc. because I'm 18 and that's in my opinion too much radiation for me... unless you tweak the slice rate... (off topic from here)

^srry just didn't like to see kaiser getting a general bashing when really it's just a particular onc or two :P unless i got the good one? anyways..

I can't tell you much about RPLND's other than that I don't think they're necessary for a stage 1A as long as you have a strict surveillance schedule. If you were stage 2A that would change the game.

1xBEP chemo: Each cycle of chemo can be tough or easy depending on how you tackle it. My first cycle was ROUGH for me because I just didn't stay active enough during the cycle and in my opinion it caused my metabolism to slow down and that culminated on days 6 and 7 where i slept 36+ of the 48 hours. This slowing of my metabolism my onc hypothesizes could've caused the chemo drugs to have been filtered out of my system slower. On top of that it definitely didn't help my mental well being. My second cycle though I was active and I flew through the cycle with little to no nausea and NO fatigue. it's just about how you approach it, everyone's different!

I'd recommend surveillance man. Stage 1A is really early on and with a strict enough surveillance schedule even if it's still there it'll get caught fast, treated just as fast, and you can move on with your life.

good luck!

[confuseduser]

Woops... Don't know what happened.

[CancerSux]

Congrats on the normal markers! Doc looks like a great fit for TC, wishing you luck and looking forward to a good update!

Best,
Tracy

[confuseduser]

First of all, Dr. Daneshmand is an excellent doctor; a true expert from what I heard today. All options were elevated very thoroughly, and we really liked him. He Answered every question we had with the most details possible, gave percentage rates and even corrected so-called "facts" that I read on the internet, and even here. I highly recommend seeing him if anyone is in so-cal. We feel very comfortable with his expertise, and he will definitely be on my side through all of this. And what a difference between him and that other oncologist. Ridiculous.

Well, to keep it short, his opinion is to go with surveillance. He was against 2xBEP but wasn't against a nerve sparing RPLND which he can perform. He understood my reasons to avoid an RPLND, and despite the reasoning and statistical data presented to me... I still don't want to do it.

So this decision has become even harder. I have two of the best TC doctors out there telling me they'd go with surveillance, and one urologist hinting at chemotherapy. I was pretty much set on doing chemo, but what I learned today has changed that.

Here's how I'm looking at it:

RPLND - risk of recurrence 10%
Chemotherapy - risk of recurrence 2%, or was it 5?
Surveillance - risk of recurrence 25-35%

Obviously I want my risk to be the lowest possible, but then there's that 65-75% that I'm already cured and all further treatment may not be necessary.

I never considered surveillance because the option was never recommended to me until I contacted Einhorn and met with this Dr. So I never considered it.

Decisions...

[TGlover]

Hi Confused,

I chose surveillence staged at 1b (at 40-50% relapse?), and even though ended up in a relapse and had to do 3xBEP I don't regret it. Having tumour markers present means that I was picked up when the relapse was undetectable to CT/Xray.

It doesn't matter how many cycles of BEP, it is not easy and has side effects. You may as well keep the *agressive* options for when you *need* it, and why overtreat something where you have a 1 in 4 or 5 chance of not needing it?

All said and done though its your choice, the reason you have choice is because they are all valid. In the end choose the option that makes you feel more able to psychologically handle cancer.