dallas/ft worth, tx

[greg622]

hi there! i'm new here. i was diagnosed with testicular cancer a couple months ago now. i've already had my right testicle removed. i'm healing nicely from that. dr says i now need rplnd. the neurologist claims i was getting into stage 2 even though my ct scans and blood work came back all ok. i do have embryonal non-seminoma. he says the cancer could be still in the nodes in a form too early to show up on any tests. so, i guess the rplnd is mainly precautionary. it's a procedure that when reading about it, it really scares me. i was wondering about other people's experiences: who had embryonal non-seminoma and took the "wait and see" approach? who had rplnd and are you glad or mad? who had rplnd and are cancer-free or cancer came back anyway? exactly how long did it take for you to recover from rplnd and return to normal duties? all thoughts and stories welcome even for questions i didn't ask. also anyone from the dallas/ft worth area that went through this; i would like your doctor/hospital experience. these questions may have and probably have been answered in previous threads, so any help in navigating to those threads would be welcome. thanks for reading! so glad this forum is here!

[Scott]

Welcome, Greg. Typically, if you were going to have RPLND surgery, you'd have already had it by now. I assume you're currently on surveillance. Can you share your pathology report and tumor marker history (always normal, or elevated before the orchiectomy and normal afterward)?

[Fed]

Hi Greg,

Welcome to the Forum. I'm sorry you have to deal with this, but we're here to help you out as best we can. If you have access to your pathology report and scan results, please post them so we can better assist you. The RPLND is sometimes used as a staging tool in cases of non-seminoma if there is no evidence of spread; however, you have embryonal carcinoma (one of the 4 kinds of non-seminoma), which is somewhat aggressive and can sometimes skip the lymph nodes and wander off to the lungs (at which point, the RPLND would not be curative).

Post the details if you can. Stay in touch and hang strong,

Fed

[dadmo]

Greg:
If your IO was more then 8 weeks ago you are already in surveillance. My choice would be to stick with that. Ec has a nasty habit of being able to skip the nodes and go right to the lungs. This can mean that the RPLND may not be a cure in your case. I would save those big guns for when their needed. If it helps you relax my son was stage III with a huge EC component and this week he got his 4 year all clear, even in advanced case this can be beaten.

[emilyalex]

Hi Greg. I'm not in the DFW area, but do live just outside of Houston. I echo Paul's suggestion of contacting IU or Sloan. Dr. Einhorn is so wonderful about being accessible to TC patients who have questions and it might be beneficial to contact him and give him an overview of your case. He always seems willing to provide advice and suggestions, even if you don't go to IU for treatment.

Emily

[smoothee]

Hey Greg,

I know it can seem like an overwhelming time when ultimately deciding which treatment option best suits you. I'm not sure exactly the percentage of EC you have, but I would not recommend RPLND. This is a major surgery and may not be beneficial to your case. Surveillance is usually the top recommended option but you must be committed to stick to the strict follow-up. Also, if anxiety isn't an issue then this may be the route for you. And like Emily said, it may not be a bad idea to get in touch with Dr. E. He is "the man" when it comes to TC. In most cases, he will respond to emails within 24hrs. He is the one that was quite insistent if I chose adjuvant chemo, then 1xBEP would be sufficient. Whatever you chose, just stick with it and no looking back. Good luck.

All the best,
Damian

[Cricketer]

Hi Greg,

I'm with Smoothee on this. (We both did adjuvant chemo although I did 2 cycles and he did one.) Because EC can jump straight into the lungs via the blood stream a RPLND isn't always curative. It is also serious surgery. Having said that many guys here have gone down this path and are very happy with their choice. It is a difficult decision to make. Get as much advice as you possibly can and then make a decision. I'm certainly no expert but I did try and get all the advice I could before making a choice. When you do, no looking back...all forward from here.

Cheers

Mike

[greg622]

hi again!

thanks for the replies! i really appreciate all the input! i think i was a little unclear in my initial post. i had my right orchiectomy on november 6th. so, i'm just 2 weeks now from that date. also, my pathology report and tumor markers were always normal. and, i'm not sure of the exact components of the tumor. today i had my first appointment with an oncologist who specializes in the chemo treatment. he was pretty adamant that i should not get the rplnd done. i told him my urologist was pretty adamant that i do get rplnd. the oncologist walked me through every scenario and was very clear and concise. so, right now i'm going with the oncologist to go the surveillance route. i have another appointment with an oncologist who specializes in doing the rplnd on december 17th to get his input. but, right now i'm pretty set on "waiting and seeing" while, of course, doing my follow-up appointments. so, that's where i am as of today, november 21st, 2008. thanks again for the comments and opinions! i can definitely feel the caring spirit of all on here. this site is "da bomb!!"

greg

[smoothee]

I'm glad to see that you are seeking out more than one opinion. That is never a bad idea. As far as your urologist recommending RPLND, that does not surprise me. They are surgeons and at the end of the day that is what they do. In my case I had two urologists who very insistent I go with the RPLND. But upon meeting with an oncologist, she did not agree with this notion at all. Also by the way, Dr. E. said that RPLND would be his 3rd choice. I hope your next appoinment can shed some light on the situation. But in the meantime, try to get yourself as informed as possible. Any other questions you may have, don't be afraid to fire away.

[dadmo]

Greg:
Surveillance is a very reasonable option in your case. Finish with all your second opinions and once you make a firm choice don't look back. You're gonna be just fine.

[Scott]

Hey, Greg, I'm not sure how to reconcile "diagnosed with testicular cancer a couple months ago" with "had an orchiectomy two weeks ago." Otherwise, I'm glad to hear that surveillance looks like a good option. You should ask for a copy of your pathology report so you have more information to help guide your decision.

[Fed]

Great job doing your due diligence! Being informed will carry you through this. Let us know if we can be of any more help. Cheers,

Fed

[greg622]

scott, like i said, i was unclear and to "reconcile" the two - two months ago was when i first started feeling pain and discomfort and now that i know it was the cancer causing it two months ago is the time i know for sure i had the tumor. yes, i used wrong terminology, forgive me.

[Scott]

Now I get it. Thanks for the clarification!

[dadmo]

Greg:
Thanks for the clariffication. It helps us to help you when we understand the whole situation.

[lcrew35]

Greg,
I'm was in a similar situation to yours just recently. My tumor was part embryonal and part teratoma. The CT scan done the day before the surgery showed one lymph node @ 1.1 cm which is enlarged but only slightly. I saw two very good oncologists and a very good surgeon. Unlike your situation the surgeon was completely impartial, basically saying if the oncologist recommends it and you want to do it, we'll go for it (Although my first urologist, here in my small town, like yours spoke of the necessity of the RPLND). The oncologists leaned slightly toward the RPLND.

I initially like the idea of surveillance because the odds seemed good that I was already cured. However after weighing all my options, and doctor's recommendations I decided to go with the surgery. I think the decision is very personal for everyone and there are many factors (fear of the knife, fear of chemo, relative health etc) that are weighed by everyone differently.

The best piece of advice that I can give you is to get to the best oncologist that you can, even if it means driving or flying somewhere for a second opinion. If the advice you have received so far leaves you feeling comfortable (relatively speaking), that's great. If it hasn't seek out more. Also, you mentioned an appointment on December 17 to see someone who specializes in RPLND. I'm not positive but that may be a little late for a useful appointment on that topic, someone who recognizes the time sensitve nature of the situation may be able to get you in earlier. I think that generally speaking if one chooses the RPLND route that surgery should come within about 6 weeks of the initial surgery, any later and you have essentially entered surveillance. When was you last CT scan?

I bring this up because even though I chose the RPLND route, it didn't happen. I had my first CT scan on Sept 25 and my orchiectomy the next day. I had a pre RPLND CT scan done on Nov 3 and my RPLND was scheduled for Nov. 6. The scan showed that there had been spread beyond the point where an RPLND would have been useful and so it was scratched and I just finished my first week of BEP which I passed with flying colors.

Hopefully if you choose that surveillance route we'll be getting "all clears" from you at regular intervals. If not, there are some good people here who've got your back.

Luke

[Joseph Hernande]

Greg,

The doctor never suggested adjuvent chemo as a precautionary measure instead of the rplnd and surveillance?

I think 2 cycles of BEP is another route you should consider.

My best wishes are with you

Joseph

[greg622]

hey joseph and luke! thanks for your input. i'm really thinking of going out of the city - looking into md anderson in houston right now - to get another opinion. i agree, after all the reading i've done, dec 17th will be right at 6 weeks and basically heading into surveillance anyway so why do rplnd? but before i knew that information my urologist said that was "ok" (because even earlier without knowledge that seemed so far away to me to be doing the surgery) and that i would be fully healed from the orchiectomy and it would still be good. he made it sound i would get into surgery pretty quickly after that appointment. if i choose to do rplnd, that is. i had my first ct scan the week before my surgery. and everything was normal. i guess my fear is the possible adverse effects of the surgery - the retrograde ejaculation, erectile dysfunction, long recovery - even with the nerve-sparing procedure. my chemo doctor i went to said he didn't feel i needed chemo at this point. he felt the cancer was caught early enough to warrant total surveillance on the basis i strictly adhere to doing the follow-ups. he said if he thought i was a flight risk he would go ahead and give me chemo treatment, but as long as i was doing surveillance if anything came up it could be treated with the same success rate equal to going ahead and going the rplnd. my next follow-up is january 23rd. so, right now i'm waiting and thinking about what is the best road to take. so, i'm very thankful for the support and good wishes from everyone here. best wishes to you guys too!

[Joseph Hernande]

Greg,

I do my semi yearly check ups at MD Anderson. My doctor there is Lance Pagliaro. He is really knowledgeable, and they treat you with the utmost diligence at MD Anderson. I always feel very confident when I go there.

When I went last Oct. when I was first diagnosed Dr. Pagliaro didn't really suggested I have a rplnd because they have an attitude not to bring so much on the patient as far as recovery and all the struggle to go with it. He plain out told me if I had chemo it would reduce the risk of reoccurrence to less than 5% as opposed to surveillance with was at around 40% for me since I had a EC component.

I am a worry freak so thinking there is a 40% of a reoccurrence I chose to have the 2 cycles of BEP.

I have been down there 3 times now so if you need any info about MD I think I can help you. Nearly all hotels in the vicinity give discounts if you are a patient of MD and have direct shuttles to the clinic.

[bradley6]

Hi There. We are in mansfield TX, right in the middle of dfw. My husband was seen by Dr. Shepherd, urologist at urogoly associates. He specializes in TC. Our onc was Dr. Liao at TX oncology. Both doctors conferred with Dr. Einhorn and were very good about keeping us updated at all times.

[greg622]

hey, joseph, did you have trouble getting an initial appointment for md anderson? i have sent all my information there to my coordinator that they set me up with with and haven't been able to get in contact with him again. it's been a week. any advice?

hi bradley6! thanks for sharing. i have played a few tennis tournaments in mansfield at the walnut creek country club.

hope all is well!

[Les' Mom]

Dear Greg....

Welcome to our group. As you can see, there are many here with a wealth of knowledge that can help you. I would recommed that you contact Dr. Einhorn for a second opinion. My sons first urologist and oncologist wanted him to go from BEP to RPNLD. I contacted Dr. E and he said no.. more chemo and a stell cell transplant was needed. He talked to Les oncologist at him and explained his point and then our oncologist here agreed with Dr. E. It is just important that you are treated by an expert in the field of TC.

Love,
Pam

[GAH]

Hey Greg,

I'm in Southlake. Although I had seminoma I'd be happy to chat with you or be a sounding board.

Thanks,

Glenn

[Joseph Hernande]

Greg,

Sorry for the late reply. If I recall, the hardest part obstacle was gathering all the lab work, slides, etc and sending them to MD. You have to be very persistent and make it clear it is very urgent. I was diagnosed in mid Sept and got an appt and went to MD in early Oct.

In the mean time, make sure your doctors in town send all the important documents ASAP.

Be Very Persistent