u/s positive, bHCG negative, a-fetoprotein not available... doc wants an MRI?

[road trip]

Utterly impressed by this forum. Wow, what a community! I've been lurking for a few days (although I wish I found you sooner) trying to piece together "what to expect" and so far, my experience has been typical of everybody else, albeit a bit slower.

To that end, I have a bit of concern with an apparent (to me) lack of urgency by urologist. The short story is that each step in the process is taking a week+ and he is moving in a very sequential way rather than going full bore...

Where I stand now (per the title) is that I have classic symptoms, an obvious lump (albeit small.. found early), the "light test" was positive, and the ultrasound was positive (blah, blah, blah.. "hypo echoic density, most likely seminoma... small, right epididymal cyst... blah, blah, blah"). It was only after receiving the results for the u/s did the doc draw blood (Wednesday).

So I'm eagerly awaiting the results which were expected on Friday - - and to me, it's already a foregone conclusion that me and Righty where going to part ways. Finally talk to my doc on Friday night (like, 7:30 PM) and he says that the b-HcG was normal and we'd wait for the results of the AFP on Monday and then... he might refer me for an MRI with contrast.

All of that being said, I haven't read anything where an MRI is part of the diagnosis. I mean, if it is "negative" what is that supposed to mean? Would that rule out TC? I doubt it... in my research, simply the u/s results along with the physical symptoms should equate for i/o, yes?

So.... today is "find second opinion urologist" day with the expectation of seeing somebody on Monday and hoping for surgery on Tuesday or Wednesday so I can get on with life!

Any thoughts on the MRI thing?

Any feedback would be appreciated!


road trip

[cbvance]

Utterly impressed by this forum. Wow, what a community! I've been lurking for a few days (although I wish I found you sooner) trying to piece together "what to expect" and so far, my experience has been typical of everybody else, albeit a bit slower.

To that end, I have a bit of concern with an apparent (to me) lack of urgency by urologist. The short story is that each step in the process is taking a week+ and he is moving in a very sequential way rather than going full bore...

Where I stand now (per the title) is that I have classic symptoms, an obvious lump (albeit small.. found early), the "light test" was positive, and the ultrasound was positive (blah, blah, blah.. "hypo echoic density, most likely seminoma... small, right epididymal cyst... blah, blah, blah"). It was only after receiving the results for the u/s did the doc draw blood (Wednesday).

So I'm eagerly awaiting the results which were expected on Friday - - and to me, it's already a foregone conclusion that me and Righty where going to part ways. Finally talk to my doc on Friday night (like, 7:30 PM) and he says that the b-HcG was normal and we'd wait for the results of the AFP on Monday and then... he might refer me for an MRI with contrast.

All of that being said, I haven't read anything where an MRI is part of the diagnosis. I mean, if it is "negative" what is that supposed to mean? Would that rule out TC? I doubt it... in my research, simply the u/s results along with the physical symptoms should equate for i/o, yes?

So.... today is "find second opinion urologist" day with the expectation of seeing somebody on Monday and hoping for surgery on Tuesday or Wednesday so I can get on with life!

Any thoughts on the MRI thing?

Any feedback would be appreciated!


road trip

Once the Ultrasound confirmed a neoplasm I wanted the thing out yesterday. I had my IO a week later, you definitely need to look for another Urologist to get the IO done ASAP and get an Oncologist that knows and follows the NCCN guidelines.

You won't know what you have or how to treat it until a pathologist looks at the tumor and staging is complete but the IO is indicated right now!

An MRI is not done unless there is some clinical reason to do so. A CT should be done of abdomen and chest prior to the IO but not an MRI.

Sounds like you caught it early and there is a really good prognosis for Seminoma but don't let anyone make you wait another second to get the tumor out.

[road trip]

.......

Thanks, cbvance! It doesn't feel proper to second guess a doctor, but the diagnosis and treatment sounds so well established per my research that the deviations just seem... odd. I appreciate the 2nd opinion! (2nd to mine, of course.... I'll get the doc second opinion soon).

[hbr777]

No way can they conclude that it is seminoma from an u/s. That is via biopsy, and blood work.

Do you get the feeling that they are taking the slow route because the u/s report states mostly likely seminoma and because your b-Hcg is negative? If so, I'd get another doctor.

Don't worry about second guessing your doctor. Unless you are being seen by a TC expert (and sometimes even then) you may end up knowing more about TC than the doctor.

As for the MRI, the only thing I can think of is that maybe he is doing it because for some reason he suspects it might not be cancer, and he wants to see what it looks like before scheduling the I/O?

Good luck with the I/O, and ask a million questions - it helps!

[road trip]

Do you get the feeling that they are taking the slow route because the u/s report states mostly likely seminoma and because your b-Hcg is negative?

As for the MRI, the only thing I can think of is that maybe he is doing it because for some reason he suspects it might not be cancer, and he wants to see what it looks like before scheduling the I/O?

Thanks for the reply, Heidi!

I'm not too keen on exactly why he would be taking the slow route and/or doing the MRI. Based on what I've researched already, the blood work is inconsequential - - it will be plenty helpful for follow-up if there are abnormalities, but if not, a good proportion of patients are marker-negative so it isn't confirmatory - - and there is a 20-30% false negative rate

Like you said, the i/o followed by a pathology report is the only definitive way to rule-out TC. If I were to see literature (and guidance) dictating that "positive u/s + negative labs = MRI follow-up before i/o", then I'd be comfortable... but nowhere did I see anything like that.

For sure, scans post-op to rule out mets.... but not during the diagnosis state to rule out doing an i/o.

(and as a side, I work in oncology clinical research - irony? - so I was pretty quick on the uptake of all of the diagnosis and staging.... and thus a bit of confidence when talking about these things)

Thanks again.... and now.... to wait until Monday! In the meantime, it's a beautiful day here in Jersey and I'm going to take Righty and Lefty out for a walk... probably their last weekend together!

[road trip]

BTW, Heidi... I see your husband is scheduled for follow-up May 2012.... good luck!

[hbr777]

Oh, thank you! It was supposed to be the beginning of May but he postponed it due to work travel. It is the end of May now.

Thank you, and let us know how you make out with AFP, and doctor shopping.

[Nut of Mordor]

You can't say it's seminoma just because of the negative b-hcg. The only sure thing that negative b-hcg tells is that is definetely not choriocarcinoma (and that's a good thing !)

[Fed]

Hey Bro. The MRI seems to be overkill at this point, and you can obtain the same information at a lower cost with a CT as it is ordinarily done.

No way can they conclude that it is seminoma from an u/s. That is via biopsy, and blood work.

Heidi is correct. Your urologist is probably making the assumption, incorrectly I might add, that because you are not showing markers you have a seminoma. Other cell types may or may not show markers, and the only conclusive answer can be obtained after the I/O and the specimen pathology is analyzed under the scope.

[Paul54]

Sorry you had to find us. I went through a lot of the delays you are dealing with so I understand. But I didn't have an MRI and I basically agree with everybody else that it's not needed. Are you sure the doctor wasn't talking about CT scans with contrast of your pelvis, abdomen and possibly chest?

The radiologist that read my first ultrasound said that mine was probably a seminoma. Maybe something about the shape and density gave him that confidence, but more likely he based that on my older age (54 at the time) when seminomas are more likely. It was a seminoma.

The urologist is obviously the best for the I/O, but if TC is confirmed by the pathology, you should start getting referrals to an oncologist with experience with TC to put the rest of the pieces together.

Best wishes,
Paul

PS: OMG, another oncology researcher! So are Fed and CancerSux. I don't think there are any such things as being too rich, too lean, or having too many cancer geeks on a TC forum. That's what I always say.

[road trip]

Switched urologists earlier this week and went to a oncology / urology surgeon on Monday and I'm the booked for surgery tomorrow morning.

Yesterday was a marathon of a day with a CT Scan, another ultrasound, pre-op ECG and blood work, and new baseline biomarker lab draws.

While she tried to mask it, the surgeon was clearly disappointed that things took so long. Basically, *I* knew that something was going on for a month (and acted relatively quickly) but the previous urologist office dithered. She actually said she internalized a quote about TC being "You never let the sun set on TC.." (or something like that... meaning, take it out ASAP...)

So tonight, I'm going to a concert in Brooklyn as a last date for Righty and Lefty. The Gaslight Anthem in a 300 person "intimate" venue... psyched.

(and then I set my alarm for 4 AM tomorrow!!)

[Fed]

Well done! It was definitely a great call to find yourself another doctor. Have fun at the concert tonight, but just make sure you follow the doc's pre-op orders (no food past midnight, etc.)

Best of luck tomorrow!

[road trip]

...and just as quick, the narrative changes.

The doc just called and cancelled my surgery for tomorrow. In summary, the CT scan results came back and it's a bit more worrisome. Evidently, I have a few lesions in the pelvic area and the mass in my testicle might have been a metastasis / infiltrate.

PET scan being scheduled and biopsies of these other lesions might be called for. My urologist scheduled a round table with another medical oncologist as well as a hematologist.

I might be in for a more wild ride than previously anticipated....

[Fed]

Well, at least they caught the other lesions as well, though pelvic mets are rather unusual. Do you have any history of prior surgeries?

[road trip]

Well, at least they caught the other lesions as well, though pelvic mets are rather unusual. Do you have any history of prior surgeries?

Actually, yes... I had a spleenectomy Oct-1993 as a result of a knee to the side during a soccer game.

(and also a few broken ribs...)

When you weigh 125 (at the time), you probably shouldn't contest for a header against a 6'2" goalie who clearly eats his Wheaties.

(good guy though... albeit one with sharp knees)

[hbr777]

So they think the testicle mass may not be the primary?

[Fed]

I ask because I have heard that prior abdominal surgeries could alter the normal path of spread. I don't know much about the subject, but your docs should be made aware of this if they don't know about it already.

That sounds like a painful injury. Ouch.

[road trip]

So they think the testicle mass may not be the primary?

Yup, that's a possibility. It could be that the testicle mass is an infiltrate and metastatic in origin. If so, I'd consider it lucky that it was there and evident as opposed to hiding in other places.

I ask because I have heard that prior abdominal surgeries could alter the normal path of spread. I don't know much about the subject, but your docs should be made aware of this if they don't know about it already.

Thanks, Fed. Yeah, I have made all docs aware of this. Right now, I'm working to schedule a PET scan as well as a biopsy of one of the lesions which happens to be shallow enough to make it "easy."

Additionally, I sent my CT and ultrasound results to my boss's boss (who is a medical oncologist) and she gave me a call and we chatted a bit. She recommended that I see the docs at Memorial Sloan Kettering (nearby as I'm in New Jersey just across the river from NYC) and put me in touch with one. Ironically, the lead author on the NCCN guidelines for TC happens to be the steering committee chairperson for the clinical development program that I'm on, so I have been in touch with him and will be seeing them as well.

That sounds like a painful injury. Ouch.

Yeah it was! I landed like a sack of flour... thought I had the wind knocked out of me... then thought that, maybe, I had some broken ribs... and then, taking the bus home (yeah, I took the bus) on a bumpy, country road realized that the blood I was tasting in my mouth was not from someplace local! It took a while (and a very heady athletic trainer at my high school) to realize what was going on... thankfully, the rupture wasn't complete so I had slightly more time for them to dial in what was going on!

[MrsB]

Just catching this thread today and wanted to wish you good luck with your tests and biopsy. Please let us know how things go. You have a great attitude and it's good that you have so many experts readily available to you!

[road trip]

Just catching this thread today and wanted to wish you good luck with your tests and biopsy. Please let us know how things go. You have a great attitude and it's good that you have so many experts readily available to you!

Thanks, MrsB!

Biopsy is tomorrow at 7:30 AM..... but no coffee beforehand! Argh!

Indeed, by pure chance, I have some connections and they happen to be local. And beyond that, I have people that I work closely with willing to give introductions so I'm particularly blessed in that way.

Hopefully, I'll have some answers early next week. The PET will probably take place on Tuesday and we'll go from there.

In the meantime, the weather is great here so I'm going to take advantage of that!

[1lessball2answr]

Hey there, just wanted to say hey and check in with you. How did the biopsy go? Are you set for your PET this week?

Hope you are well!

Patrick

[road trip]

Whoa, that was a busy few days... and now I have the I/O to look forward to next Monday.

I had the biopsy 2 Fridays ago (as an aside, whoever called them "fine" needles for the fine needle biopsy has a different definition of fine than I do!) and the PET a week ago Tuesday. The biopsy was a bit nerve wracking, as the lesion on the left wasn't playing nicely (the surgeon said it was like trying to stab an eraser.... it kept on bouncing around) so he had to go to the one on the right. Two hours on the table later (completely lucid during the whole thing), I was finally done.

I will add that in the surgical report, the doc noted "patient tolerated the procedure remarkably well." Daaaaaaaamn right!

Thankfully, the biopsy and the PET results came back negative on the same day. Basically, the pathologist stated that the lesions were splenules / residual damage from my spleen being ruptured / removed in 1993 and that there was no necrotic tissue and only healthy lymph tissue was noted. Regarding the PET, simply stated, nothing lit up.

Meanwhile, due to work connections, I also had a consultation with Dr. Motzer at MSKCC in NYC and his impression was that, albeit slightly atypical presentation in the testes, righty should come out and be biopsied. My urologist that I have been working with spoke with him on the phone late yesterday and will be calling me today.

So... I guess I have one more "are we a go for Monday?" conversation to have... then me and righty part ways... then I get to wait for the path report.

[1lessball2answr]

Hey! So happy to hear from you and very relieved that the biopsy and PET came back negative. Phew! I have a feeling the I/O will be a breeze for you.

Hang in there!

Patrick

[cbvance]

Glad to hear the lesion was nothing bad.

[road trip]

Just checking in post I/O.... I had the procedure around 10 / 10:30 yesterday and was home around 6:00 or so. I have to say, the worst part of the day was the Devils blowing Game 3 last night!

Okay, maybe not..

All in all, it didn't go that bad. Waiting to pee so I could be discharged was the most frustrating part. Although now I'm definitely not looking forward to needing to go... #2.

When I got out of surgery and the doc (a rather cute female) said, "everyone was amazed how small it was!" I had to confirm... "you mean the tumor, yes?"

Already logged into my work computer to clean out some spam e-mails although I don't intend to to any work today. Tomorrow perhaps.... but not today.

Today is a day for pacing and icing.

Thanks for all the support! I'll check in after I get the pathology report (if not before..)

[Fed]

Great to hear you are on the mend and that you are keeping your spirits up. The pathology report will take about a week, so in the meantime, focus on recovering from the surgery --and no heavy lifting!

[1lessball2answr]

Hey there,

Glad to hear you're feeling okay! That's hilarious about the nurse.

Patrick

[road trip]

And....... pathology report back.

Well, first off, my doc called me Wolverine because of my awesome healing ability. Okay, maybe those are more my words than hers but she did say that I heal remarkably well.

With the pathology report, another comment about "how small it was!" and additional, supportive commentary about how she had to point it out to the pathologist (it = the tumor and not the teste).

But to the meat of the matter (or, the small seed in this instance).

EMBRYONAL CELL CARCINOMA WITH AREAS OF NECROSIS
0.9 x 0.6 x 0.5 cm
...around the main tumor, the testicular tubules show intratubular germ cell neoplasia

Nothing else particularly remarkable in the pathology report.

Now, my next step is a second opinion / follow-up back at MSKCC. My options are pretty straight forward - - surveillance or RPLND.

Frankly, RPLND scares the poopie out of me but I'll put on my brave face when chatting with the doc. Thankfully, arguably the best person in the world at doing that procedure is a ferry ride away (although, I'd probably get driven for that...). Obviously, I'd prefer surveillance, but if the docs feel that my presentation is confounding (see above false-positive from the original CT scan), then I'll end up with another scar below my sternum.

And now.... to grab some grub, hit the bar, and hope that I'll be going to see Game 7 of the Stanley Cup Finals on Wednesday. GO DEVILS!!!!

[Paul54]

MSKCC has a reputation for recommending RPLND first as adjuvant treatment, for staging and getting rid of cells that are still too small to see on imaging. Their experience is that RPLND increases the relapse-free rate (RFR) from 60-70% TO 90%. Their second best choice is surveillanace.

Indiana University, on the other hand, would recommend surveillance as first choice for you due to the small tumor and lack of teratoma in your primary. Second choice would be 1xBEP or 2xBEP as adjuvant, probably 1xBEP for a small tumor that has no sign of LV invasion. IU and others' experience is that adjuavant BEP increases the RFR to 90-95%.

Chemo is no walk in the park, but RPLND is very serious surgery. If they find active cancer in the RPLND node pathology, you may need chemo anyway. If it were me and I really wanted to tackle any potential spread, I would opt for the chemo.

[road trip]

Thanks, Paul. I appreciate the commentary. I hadn't thought about it before, but perhaps after I get an opinion and a secondary reading on the slides, I'll send all of my information to Indiana University to see what their advice would be.

The one thing that might move somebody away from chemotherapy IMHO would be that my brother has had CML (successfully on Gleevec since 2001) so I might be more susceptible to secondary leukemia post-chemo.

[Geoff]

My best advice is to ask lots of questions about every option, the pros and cons of each, side effects, etc. If you don't fully understand what the options are and their details, it's hard to make a decision that you are ok with and will be ok with in the future. If you have a huge concern over radiation from CT scans and side effects of chemo, then RPLND may be your best option. Surveillance may be a good option also, if you're ok with the CT scan schedule.

RPLND is not a simple surgery by any means, but to me, reading about it online scared me a lot more than what for me was reality. I was really against it, but talking with my surgeon made me feel a lot better, and now having gone through it, I think it really wasn't as bad as I read. There were terrible times, but they didn't last long. It all came down to what the pros and cons were.

[road trip]

Thanks, Geoff. I sincerely appreciate the commentary.

[Fed]

Absent lymphovascular invasion, surveillance is actually a good choice (I-A nonseminoma has a 70% chance of cure with I/O alone).

[road trip]

Thanks, Fed. My hopes specifically and I'll be interested to hear what the docs say. My expectation is that they will suggest RPLND and I'll have to make them defend it up and down. I figure not needing the surgery should be my reward for finding it so darn early!

I did ask my surgeon, "soooo... is there any chance that the pathologist may have missed lymphovascular invasion??" and she said no.. it's quite definitive.

So, absent that... to my naive (but hopeful) mind, I'd arm chair doctor it and say I can hopefully go on surveillance.

[MPsr]

Nice! That would be great.
I know with my sons bx report that the lymphvascular invasion is what made my heart fall..
I knew that it might mean rplnd...
and from what his doctors at mskcc (and people here) have said... sloan always recomends rplnd....

Truthfully if it will really improve his chances, I get it... but if his nodes are normal and his markers are down afte his 3x EP, maybe he can wait..

Good luck!

[road trip]

...
and from what his doctors at mskcc (and people here) have said... sloan always recomends rplnd....
...

Good luck!

Thanks, MPsr!

I'm going to prepare this weekend as if I'm a lawyer going to court to try to debate these guys with the assumption that they'll push for RPLND.

I wish your son a lot of luck as well.

[Davepet]

I'm going to prepare this weekend as if I'm a lawyer going to court to try to debate these guys with the assumption that they'll push for RPLND.
.

Remember, it is your body & you have the right to refuse.
Dave

[Paul54]

If you are comfortable with surveillance, tell them that's what you want to do. No debate. They should still be willing to management your surveillance if you want them to. You might want to consider their satellite in Basking Ridge if it's a better commute.

[road trip]

Whelp.... as suspected MSKCC recommended RPLND. While I was anticipating this, what I wasn't anticipating was that it was predicated on an abnormality on my post-I/O scans done this past Monday.

....just like the original tumor... it was small and found super early... but very, very, very abnormally / slighted swollen lymph nodes. It is something that they would have ignored (or "watched" really) BUT they were right along the aorta / vena cave retroperitoneally located (i.e. in the wheelhouse for where you'd expect to see TC metastasis). Had it not been RIGHT THERE.... he said he'd recommend surveillance - - or would be more comfortable if I chose surveillance (which is probably the better way to write it).

RPLND on the books for July 14th.

Sooo... yeah, today is calling about where to store my swimmers and figure out what to do work-wise. My hope is to be able to take that week prior to my surgery off so that I can at lest have some summer. Get a place at the beach for a few days and head down with my surf board, yoga mat, running shoes, and my backlog of magazines.

- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -

As an aside, I'm comically prepared for the RPLND and know what to expect post-surgery wise because I had the previously mentioned splenectomy / exploratory surgery back in 1993 (soccer injury) in which the scar is in the same spot (albeit not south of the belly button), they flop out the organs the same way, and the hospital course is the same (no fluids, ice cubes, fluids, soft foods, okay... now we can release you... you'll probably poop 2 weeks later)...

(back when I had my splenectomy, my first... ummmm... passing of solids.... was literally 2 weeks after the injury... and they were just a couple of fisherman's bobbers at that).

TMI? Sorry!

[Geoff]

Just take a stool softener as soon as you can and you'll probably be fine. Hope you do get to enjoy some of the summer before your surgery.

[Fed]

Just a question here. Has there been an interval enlargement of the node (i.e. in between scans)? Have your markers gone up? In my view (and this is my unqualified opinion), an RPLND sounds overkill given the minuscule size of your primary tumor and the lack of LV invasion.

[road trip]

Unfortunately, on the pre-surgery scan, that area was not very well defined. That said, it did look more abnormal on the follow-up than on that pre-surgery scan.

He also cited one of his papers (I hadn't looked for it yet) noting the relapse rate for pure embryonal and no lymphovascular invasion was 30-50%.

Yeah, it seemed like overkill to me too, but a mitigating factor is that I do have a brother with CML, so we don't want to start with, say, adjuvant chemo or even surveillance with the potential for chemo and risk a secondary malignancy.

[road trip]

RPLND Monday at MSKCC. Last meal in T-minus 60 minutes.

<gulp>

[Fed]

Best of luck, man. Looking forward to hearing from you once you are up for it.

[sammac84]

Hey man,

Just read through this thread and am thinking of you. Let us know how you're doing - I'm sure you're powering though.

I was in the same position, at the same hospital, less than a year ago and while the recovery is no fun (i'm guessing you're at that stage where you're using that stupid sponge to wet your mouth, praying that the nurse will come and tell you Sheinfeld says you can actually swallow some water), you get through it and it'll all be behind you soon. I won't torture you with talk of food right now, but next week I'll give you some recipe tips to help get you through the no-fat diet.

Stay strong buddy,

Sam
-----------------------------------------------------
Diagnosis: 10/14/11
Right I/O: 10/17/11
Pathology: Non-Seminoma, Pure Embryonal Carcinoma,
RPLND: 11/2/11
Pathology: One node with metastatic disease, Stage IIA
Surveillance: 12/15/11

[road trip]

So surgery was Monday and today is Thursday. I'm not going to write up a full report but wait until I'm feeling a bit better. That said I'm not too bad. I'm cutting down on hitting the button with hopes that my system will wake up a bit because I am dying for a massive dose of Gatorade.

While the anticipation Monday AM was traumatic, after wasn't too bad. Tuesday and Wednesday I felt much better.

Sleeping in the bad is damn near impossible and I'm not going to try again; the beds are so soft, you can't reposition yourself after you get uncomfortable. Which happens pretty quick (not just from surgery; I have a history of broken ribs and just long flights get to me).

I'll check in again later, but thanks for all the support!!!

[Geoff]

Good to hear you're starting to feel better already. Hope your recovery continues to go well.