researching options...a few questions

[shelly]

My boyfriend's doctor has strongly recommended RPLND surgery. His belief is avoidance of chemo by any means necessary, and the surgery would most likely be a preventive measure. I have done the research on this surgery and I am concerned greatly about having a surgery of this magnitude that may not even be necessary. The doctor says if we opt for wait and watch, anything that turns up would make it too late for the surgery, and would have to be treated with chemo, which is what we should try to avoid. My boyfriend had his tumor removed two weeks ago, and we have an appointment to have his AFP levels tested two weeks from now, before he has to actually decide. This has all been happening so fast, but I am a knowledge freak, and find great comfort in knowing everything I can about every aspect and possibility. My boyfriend on the other hand, mostly acts as though none of this is happening, does not really ask questions, and just does whatever the doctor says he needs to do. Doctor says surgery, he says okay, I need surgery. So I am the one who looks into everything, and I relay the information to him as I learn it. We just received the results of his CT scan yesterday, and this is what I understand of it. His tumor was mostly yolk sac, with less than ten percent being embryonal carcinoma. Vascular invasion present. Pathological stage
T2 Nx. I understand all of that except the difference between yolk sac and embryonal carcinoma, and what, if any, difference it makes in the decision making process. My first instinct is just wait and watch, why do anything if it's not necessary? However, I do understand now the risk involved in waiting. I try to figure out how I would feel if it was me, and I keep thinking I would not want the surgery if I didn't absolutely have to for survival. And chemo, well, I don't think I would want to volunteer for that either. I think I would rather know that I am putting myself through these things because it is necessary for survival, not just "to be on the safe side".

I would really appreciate any information or feedback, opinions, whatever anyone can offer.

[dadmo]

Shelly:
Robert is right the full path report will be very helpful. The fact that he has vascular invasion and has been listed as stage II indicates to me that as of today he is not cured and some further treatment will be involved. Don't freak out this is still amazingly curable and the staging is early but proper treatment is important. You're doing a wonderful thing for your boyfriend. Keep it up.

[shelly]

Okay, now I am mildly confused. The only paper I have says "mixed germ cell tumor, with predominance of yolk sac tumor and less than 10 % of embryonal carcinoma. Tumor size 4.5 cm. tumor extends into rete testis and peri-hilar fat: tunica vaginalis is free of tumor. Vascular invasion present. Negative for carcinoma. Pathologic stage T2 Nx. " Most of this I did put in the original post.

The doctor also gave us a paper with the staging terms...

pT2, NO, MO, and S1. I took this to mean it was stage I, not stage II?

His doctor is all for the RPLND. Flat out said avoid chemo at all costs...does not recommend watchful waiting. I asked him if there was any possible numbers that would make him change his mind when my boyfriend has his blood tested in two weeks, and the doctor said no. Even if his AFP levels dropped way down, he would still say surgery. this I don't understand either, because if the levels are normal, doesn't that mean there is no more cancer? Or does that just mean there are no more tumors, and that there could still be cells in the lymph nodes just waiting to strike?

He has not seen an oncologist yet, as his doctor pretty much just referred us to a surgeon who would do the surgery, a more experienced surgeon in RPLND. Which made us both feel much better. I would imagine it is not unusual to have an oncologist and a surgeon disagree about which treatment option would be better, which I would also imagine makes it even more difficult to decide what to do.

Thank you for your responses, I'm sorry I didn't get the right info the first time. I thought I had all the important technical stuff in there.

[DianeE]

Hi Shelly,

My son was diagnosed last April, and after the path report came back, his
urologist recommended the RPLND, BUT he also referred us right to
an oncologist to discuss options. The oncologist also recommended the
RPLND, to try to avoid chemo. As it turned out, my son had five
lymph nodes that had microscopic traces of cancer and he still had to
have two rounds of chemo. Of course, if he hadn't had the surgery, the
cancer would have grown and he would have required three or four
rounds of chemo.

There have been a couple of guys in this forum who had the RPLND,
had no cancer or very little present in the removed nodes, but recurred in the lungs a few months later. I think the fact that your b/f had a
small amount of embryonal is good because high percentages often mean
a spread directly to the lungs. However, I also think you should get a second opinion on the path report. My son's original path report indicated 85%
embryonal and 15% teratoma. The oncologist wanted a second opinion done
by a more experienced lab and the revised path report was 85% yolk
sac with only about 5% embryonal. The oncologist told us yolk sac and
embryonal are very similar under a microscope and require a very experienced tech to be able to distinguish them.

Shelly, it's a very difficult position to be in. There are statistics that
say 70% of the guys are cured after the I/O, but my son wasn't. Some
say 70% of the guys are cured after the RPLND, but my son wasn't
and still needed chemo. As we sipped mimosas at brunch one Sunday
afternoon, a friend from this site told me her husband's doctor scoffed at
statistics and told her and her husband,

"It's 50/50. Either you have it or you don't!"

As Dadmo said, with the invasion present, further treatment will likely
be needed. The disease it highly curable, but the mental anguish
can drive you nuts!! (No pun intended!)

Keep learning all you can about it!

Diane

[dadmo]

Shelly:
With the information you gave your boyfriend is stage IB. Did the CT sacn show any lymph node involvement. From the staging listed I would guess not. The percentage of embryonal is important. Embryonal can skip the nodes and go directly to the lungs which would mean that the RPLND might not catch everything. If the % of embryonl is small the RPLND may be a cure. I do agree with the doctor, try and avoid chemo, but we need to make sure we move foward in a fashion that gives him the easiest path to a cure.

[Already Bald]

Shelly,
The RPLND is a BIG surgery, however I came out of it just fine- as did many others on this site. The important thing is to go to an experienced urologist.
You want to avoid chemo- and the RPLND is the way to do that.
(I happened to be one of the few who had a clead RPLND, then needed chemo later , But many don't...)
As far as the insurance issue- talk to a social worker.
Good luck.

[BeachTech]

Shelly,
A few things:
-Yes, it all feels like things are moving too fast once you are diagnosed.
-Cancer doesn't go away on it's own, so he will need either RPLND or chemo if the CT shows tumors elsewhere.
-"Wait and see" in all but stage one is a BAD IDEA
-He hasn't seen an oncologist?! Wow, I would definitely consult with one before the surgery/chemo. I consulted with an oncologist right after the RO (Radical orchiectomy). She consulted all of the oncologists at the center AND sent me to USC Norris Cancer Center for a second opinion.

I was on the borderline (according to my oncologist) of RPLND or chemo. I also research the heck out of it. The RPLND is a MAJOR surgery, with MAJOR risks, including retrograde ejaculation, meaning infertility. My team of doctors all agreed to chemo, and so did I. Chemo today is not as bad as it was ten years ago (when Lance did it) because there are a lot of good anti-nausea medications out there. I saw chemo as a "clean sweep" meaning it would wipe out any tumors that are too small for the CT to pick up. And I had 100% EC.

Just to give you a timeline. I was diagnosed on May 27, RO on June 2, CT mid June, chemo started June 27. That, although seems quick, was actually seven days longer than my docs recommended (because I needed to make a few more "deposits" which I would recommend regardless of his decision.)

GOOD LUCK! PM me if you want to talk on the phone.
________
LIVE SEX WEBSHOWS

[petep]

good morning shelly,

- you are getting great advice...especially "it will not just go away"...stage IB is great, in that it's early detection....but he will need some follow up.

- the best thing you should know is no matter what you choose, he should be fine...as long as you "choose something and not ignore it"

- You hear options and you are thinking what gives me the best chances...many have rplnd and are cured...and if there is a recurrence post rplnd, the chemo will cure him....If he goes straight to chemo, he will be fine too.

- Of course anyone wants to avoid chemo if possible...but worst case, if it becomes necessary, I will share that one poster said it best...chemo today is not what it was pre today's anti nausea meds...I recall seeing my grandmother go thru chemo years ago - horrible...then I had 3xBEP and the last one, cisplatin, is listed as one of the chemo drugs most likely to promote nausea (re: nausea)....I only was sick to my stomach once - 5 minutes, done....it sounds so scary but imagine someone decribing flu symptoms a week before you get it...you'd be scared to death...yet we've all had the flu. By far, the mental aspect of dealing with this is 90% of it; you realize that physically, you can do almost anything.

- In the whole scheme of things, knowing the ultimate outcome will be positive (staying alive being the ultimate outcome), should be the major focus and comforting thought.

- This will be a bump in his long life...not an easy time now...but a bump...and I can almost promise you...which I'm guessing you can gather from this board...a tremendous learning and postive experience...after all of it, he would never want to give it back. Neither will you.

- keep us posted and read through the various posts....between your docs and the administrators on this board and others, you can get almost any question answered.

Best wishes,
pete

[shelly]

Here's what has happened since my last post. A perfect example of how important time is with this disease. We had another appointment two weeks after we got the pathology report to check his tumor markers, but the day of his appointment, the doctor had to cancel due to emergency surgery. When we rescheduled, it was another week or two away. Made it to that appointment, told the urologist he had decided on having the rplnd, and he put us in touch with a surgeon with more experience in this. another appointment. this one was three weeks away. The surgeon scheduled another ct scan to see where we stood before having surgery, that was a week away. And the bad news is now, surgery is no longer an option. After all these weeks waiting for appointments, he has some enlarged lymph nodes in his abdomen and chest area. Now he has to do chemo. so we got an appointment with an oncologist, but not until a week from tomorrow. I am very concerned with the fact that the weeks keep ticking by, and this disease has had ample time to be running around his body.

My question, now is, should we wait until next friday for this appointment or try to get to someone else sooner? I'm afraid that an appointment on Friday only means treatment won't start until at least the following week, what if this is enough time to get into his liver, his lungs...I don't even want to think about it. Or does it not make a difference at this point if it is in his lymph nodes or his liver? Treatment is the same either way at this point, correct? does every minute count? Any advice you could give will be greatly appreciated. I am just really upset about all the time in between that allowed this thing to get further along.

Going through a few posts here before writing this, and now I'm thinking that given my boyfriend's exact circumstances, maybe he would have needed chemo after the surgery anyway? given that there was vascular invasion, and the lymph nodes are already enlarged, they probably would have found some cells during surgery anyway, and he would have needed chemo afterwards? Any thoughts on that aspect would be greatly appreciated as well.

Also, if anyone knows the frequency or conditions of 3x bep vs. 4x ep, that would be greatly helpful. so many questions, and the appt. with the oncologist is still a week away...

[Fed]

Shelly,
From the contents of your post, it is fairly evident that he should have started his treatment yesterday, especially if there already is nodal involvement and the possibility of lung mets. While TC is curable, time is of the essence, and you just can't afford to be waiting around for docs to get on the ball. If they won't, then you and your boyfriend should. It is critical that you are proactive, because, as you have said, every minute counts. As far as the chemo is concerned, with such a spread, he would likely need 4XBEP.

[dt22207]

I believe you are correct that he probably would have needed chemo even if he had done the surgery.

I think you need to consult with the office again about scheduling to determine whether the week long wait is acceptable. I did BEP and to accommodate the requirement for five daily sessions in a row, it needed to start on a Monday, so you'll want to keep that in mind.

Weekend treatments were available in the hospital, but I did one hospital session to make up for a holiday and the office treatment was much faster and much easier so I'd try to aim for a Mon.-Fri. schedule if at all possible.

IMO the session with the oncologist could happen any day next week, even Friday, provided they can put you on the schedule for the following Monday to start treatment.

[dadmo]

Shelly:
You can't go back but you do need to move foward quickly. As dt said with a 5 day cycle they will want to start on a Monday so try and make it this Monday.

[drom]

Time is of the essence! We found out about my son's cancer on Friday, had the testicle removed Saturday and started chemo Wednesday in the hospital because time was critical. It had spread to his lungs and was very active.

We were able to slide to a Monday thru Friday and it was 4xBEP. After the first round we could see an improvement. He suffered a great deal with a huge tumor on the kidney.

Don't wait for anyone. As people have stated this is a very curable cancer but you have to fight it hard and fast.

Good luck,

Domenic

[petep]

just more info....

I found had increased markers and a ct scan showed enlarged nodes...found out on wednesday....monday am I was being hooked up for my start of 3xBEP...

there is no reason for them to delay...and mentally, its a heck of a lot easier on the patient to get going versus wait.

[boyce]

Start right away...Please!

Time is SUCH a key factor here...demand an earlier appt., or get a diff (more aggressive) doctor.

There is no reason to allow anyone to make you wait a single day longer than you already have. This disease is mean, and aggressive and the stakes are no less than your boyfriend's life. It is just that real.

I went through 4xBEP and it is no easy task..will be happy to share more as you get the protocol and timelines laid out. Where are you?

Please....Please....Please....do not wait until Friday. call your oncologist and get there at 7:00 am...or 6:00 pm...or sometime..but get ready and get started!

Also, I recommend going to Livestrong.org and ordering their cancer book (It is free except for shipping fee) It will help you plan and bank sperm and arrange finances and share survival stories.

Enough chat for now...get your man to a Doctor....today is best!