my seond coming up

[Davepet]

Both UCLA and USC recommend the RPLND and I may be able to get it next week.

Sounds like you are in California, then, Just be aware that depending on path results of the RPLND, you may need more chemo going forward. Hope you don't.
Dave

[surfhb]

Well that’s what worries me about pure EC. Maybe I should just start chemo and finish this.

[Davepet]

The PET/CT came back with a possible spread to my lower abdomen. RPLND is on the table right now.

What, exactly did the scan report find? A slightly enlarged node or something big? I woud consider an email to Doc E if there is any doubt about the need for further action.

[surfhb]

Embryonal carcinoma 2.1cm tumor extends into rete testes lymphovascular invasion indentified. PT2 pNx

Intensely FDG avid (SUVmax 7.4) left para-aortic lymph node measuring 9 x 11 mm concerning for metastasis. This has increased in size since 6/7/2017 when it measured 8 x 9 mm.

Markers are still normal stage IIA so according to NCCN guidelines nerve sparing RPLND is the recommenders treatment.

Once again my concern is 100% EC. They are saying the next steps are how much cancer they find.

[Davepet]

The size of your 9x11 mm lymph node suggests some further treatment, but only by 1 mm. I'd contact Dr E & see what he thinks. Did it "light up " in the PET portion of the scan?

[surfhb]

Well UCLA and USC both say RPLND and on the west coast they are certainly expert centers. My oncologist spent time at Dana Faber for a few years also so she has the east coast connections. All saying RPLND and put an end to this.

I guess I could email my information over and see what happens? What could it hurt but I do trust these people with my life and the work they have done thus far has been nothing short of perfect.

If you are reading this Dr. Mark Litwin at UCLA is the man you want to see and my oncologist Dr. Alexandra Drakaki will both be the best doctors you have ever met.

Dave I guess it did light up that area or we maybe wouldn’t be having this conversation?

Anyone else?

[Davepet]

Dave I guess it did light up that area or we maybe wouldn’t be having this conversation?

Not necessarily, my understanding is that PET isn't particularly useful with EC, so a lack of it lighting up isn't a pass, but if it did,than you have a better indication that treatment might be needed. I would ask for a copy of the report or even a CD of the scan.

[surfhb]

The case was sent to Einhorn. He replied

“I agree with everything including your high regard for Mark Litwin. Agree of course with RPLND. Ultimate cure rate should be close to 100%.”

Guess I’ve got my path mapped out for beating this once and for all.

[surfhb]

Does anyone know the chance of needing chemo after my RPLND next week? I’m starting to get worried that I’m gonna have to go through this surgery only to have to do chemo again. Dr. E wrote back and said we are on the right path and of course I would never doubt him. I just hate that it’s 100% EC and we are waiting 3 weeks for all of this.

[Davepet]

I don't know the percentage, but my memory is telling me that it is rare for them to find anything other than necrotic or teratoma after 3xBEP. There's a good chance that even if they find TC, they will get it out & be done. Not sure what chemo might be needed if that is not the case, but the odds are improved by the surgery.

Dave

[surfhb]

Thanks Dave. I’m not sure if you forgot but the reason for the RPLND is because this is my second time and I have 1 node that lit up on the pet/ct scan. I did BEP 5.5 years ago so this is a second not a recurrence or a clean up RPLND.

[Davepet]

You indicated that this node was visible but smaller in 2017, so hard to say what is going on with it,which side is it on the same side as the first TC or the second?

[surfhb]

It is on the same side as my most recent TC 3 weeks ago.

[surfhb]

I wanted to give an update and ask for some advice please friends. I did a full open bilateral RPLND on February 4th. I was released from the hospital after 3.5 days and I'm really coming back to life within the past 2-3 days. Went to work full time last week and was pretty much fine also. Felt like I really kicked ass on the RPLND. Only took 9 days off from work.

The pathology report came back a few days after my surgery with 5 nodes positive out of 16 total removed. All nodes positive were EC as was my tumor type being 100% EC.

- 1 positive node in Left Renal Hilar (1/1) 1.3cm
- 3 positive nodes Paraaortic (3/4) largest 1.3cm
- 1 positive node Spermatic Cord, Left (1/1) 0.8cm

So after the RPLND which is supposed to be therapeutic and diagnostic I had a total of 5 nodes which is the maximum amount possible for PN1. My surgeon says he thinks he got all of it and cleaned me out good with removing 16 nodes. My oncologist is recommending EPx2 as Adjuvant Treatment.

I am worried about doing 2xEP after doing 3xBEP 5 years ago. I guess I can be lucky that I don't have to do them back to back and at least got 5 years in between chemo and the absence of Bleo makes me feel much better about doing it. I emailed Dr. E and he didn't specifically say "I would do this" as a lot of my doctors are doing also. According to NCCN Guidelines Surveillance is preferred but I think my oncologist and I are on the same page with the tumor type being 100% EC that I should just do the 2 cycles of EP and basically be cured and put a final end to this.

Of course the talks about nephropathy, tinnitus, and leukemia are all being mentioned to me again and its super scary to trade a curable cancer for a non-curable especially since I could be cured already right now as I type this.

Did anyone else take the EPx2 insurance policy? I found a link sloan did and with people in my situation not one had a relapse after the 2xEP.

Any words on the situation would be nice. Im not so worried about the chemo treatment as during BEPx3 I didn't have any complications and no long lasting effects. I was also able to stay very active with surfing, swimming ect during the treatment also. I just don't want any long term complications but that seems way to unpredictable for anyone to answer. I asked my surgeon about what he experienced during the surgery as I have read organs and/or nodes can become sticky after chemo. He said all tissue inside of me looked to be in excellent condition and he could not tell from the inside that I did chemotherapy. Not sure if he was just throwing me a positive or if that actually means much of anything.

I certainly would hate to not act during the limited amount of time I have and end up with 4xTIP as my oncologist suggested would happen if I were to relapse later down the line. My tumor markers continue to stay completely normal and updated ones will come back this week coming up. We did schedule the chemo to start March 11th as it is easier to put me on the schedule now and I can always cancel within the next 2 weeks should I feel surveillance is the route I want to take.

[Davepet]

With a 5 year relapse, I would personally want to go ahead with the EP That's just me, though.

Dave