My story so far

[iamstaley]

So a little back story first… I’m 28 years old and about a month before my diagnosis I noticed my nipple was tender and slightly swollen. I mentioned it to my wife who does ultrasound (thankfully!) and she said it was a gynecomastia, generally caused by hormone changes/imbalances and the Dr’s say to stop smoking pot (I don’t) or check your meds (no meds). We had been eating some newer foods so we thought maybe that could be the cause and didn’t think too much of it beyond that. Around the same time my left testicle began aching a fair bit, but that wasn’t terribly unusual for me. I had had a varicocele for several years that would occasionally act up for a few weeks at a time. Again, I didn’t think too much of it but I believe that the pieces were starting to come together in my mind. One night I got up to pee and noticed that my left was quite a bit firmer than the right. I probably would have noticed much sooner but it had been habit for so long to just leave that one alone, especially with the pain. Lesson learned! I told my wife to scan it the next day and she knew the minute she set the probe down. The rest from that point on has been pretty straight forward so I’ll lay out the facts.

3/16 Official US to confirm cancer
Chest Xray and abdominal/pelvic CT all clear
Blood work shows AFP @ 25 and HCG at 30
Not necessarily related, but testosterone was a bit over 1000. Anyone else experience that?

3/20 Left Orchiectomy
Pathology shows 50% Embryonal Carcinoma 45% Mature Teratoma 5% Choriocarcinoma
No vascular invasion

3/23 Chest CT clear

Now we are just waiting for the blood draw on 4/17 or so to show where the markers have gone.

I met with the urologist a few days after the surgery and he explained the pathology and my options if my markers normalize or remain elevated. He said if they are still elevated it’s BEP and if they normalize then I can choose RPLND or surveillance, but the EC puts me at a much higher risk of reoccurrence. Since then I have done tons of research regarding anything TC, especially RPLND. Assuming my markers normalize (fingers crossed!!) I’m leaning towards the surgery. I’m terrified of such an invasive procedure, and the thought that it could all be totally unnecessary is insane, but any chance at avoiding chemo seems worth the risk. So my main questions to you guys are:

A.Given the details of my situation, would you choose RPLND?
B.Has anyone had any lasting effects from the surgery? I'm mainly interested in the loss of the lymph nodes, but still curious about any and all side effects people have experienced. My wife tells me horror stories of the patients she sees with lymphedema. Is there anything similar with this procedure? I couldn't find a whole lot of info on the long term effects, if any, of the loss of the nodes.

So there it is! Thanks for taking the time to read/respond!

[Mark Anderson]

I can't answer your questions medically but a question I have for you is did your varacocle increase your risk of TC?

[iamstaley]

I've been wondering that myself. I've not read anything about the two being related, but then again I've been so focused on the TC that I haven't gone back to look at varicoceles. Worth a look, though of course a little too late unfortunately.

[Mark Anderson]

I have tried to read about that too. I have also had a varicocle for 5 years and about a year ago I showed my doctor a lump that was actually on my tesctical and he just told me that TC does not show up on the back of the testical and it is just related to my varacocle so I never really worried about it for a year until now when I started reading more about TC. I went to my urologist this time and I showed him and he gave me a ultrasound which I'm still waiting to hear about. I just hope it's not TC because if it is it's been a year and that means it has spread way too far

[Davepet]

My doc said they don't ever remove all the nodes, because if they did there would be problems leg swelling & such.There doesn't seem to be any problems directly related to the lossf some of the nodes (at least to my knowledge).

My surgery caused adhesions that have landed me in the hospital 3 times with bowel obstructions over the years, but that doesn't seem to be very common these days (my surgery was mid 70's). I also had an infection in my incision that complicated my recovery. Personally, I found chemo easier than the surgery, but others on here who have had both fell it's the other way around.

In the end, all you can do is make the choice that feels right for you & don't look back.

Dave

[Daniel_Eye]

HI Stanley

When I had my orchiectomy and got the results back it showed 50/50 Seminous/Embryonal and <1% Teratoma. Seeing as Teratoma doesn't respond to chemotherapy I waited a bit, like you to see where my markers were at. Unfortunately, my original cat scan showed an enlarged node and the follow-up scan a month later showed two more, so RPLND was not an option at that point (Stage IIB) even though my markers did stabilize. If I had the option of doing the RPLND I would. The surgeon I met with said that if he were to do it, then it would have to be a fully open procedure so he could get the most amount of nodes possible, spare nerves and prevent retrograde ejaculation. Knowing that all of that was possible I wanted to wait because, from my point of view, all of the longer term side effects of chemo frightened me more so than surgery recovery and since my surgeon could reduce the longer term risks of surgery I felt that I should see if chemo was avoidable. The worst case scenario is that after surgery I'd do 2 cycles of BEP. But, I ended up doing 3 x BEP and I start my second cycle on Monday. Good luck with everything and keep us posted.

Daniel

[Joe.shupe22]

If your markers normalize RPLND is absolutely a great option, and can be very curative! Think of it this way....Right now you have a 30% chance of recurrence by choosing surveillance. If you choose to go with RPLND, your chance of reccurence is 15% or less. In my opinion RPLND is an excellent choice for primary treatment in stage 2A or lower non seminoma. The other thing I want to point out is that if you are found to be Pn0-1 then surveillance is a great option. Personally at Pn2 I would choose adjuvant chemotherapy, but the great thing is you reduce the amount of chemo youre subjected to if you do RPLND first (2x bep or 2x ep).

Im curious though, did you have an abdomen CT? I would only reccomend RPLND if markers and chest/abdomen cts are clear.

I had my RPLND done robotically and it wasnt too bad. Recovery was pretty fast.

[iamstaley]

Mark - I do hope that you get spared the TC and your ultrasound comes back clear. Keep us posted!

Dave - It's comforting to hear from someone who had the procedure so long ago. It really bugs me to think I could be cutting out a part of my immune system for (potentially) no reason at all. Seems very backwards to remove part of the very system that could fight the disease, but I understand that options aren't ideal in these situations and survival trumps all. Definitely a tough choice for me, assuming my blood work leaves the choice in my hands. I'm sorry to hear your procedure has come back to haunt you a few times, hopefully the advances since then help spare most people that pain!

Daniel - I feel pretty much the same as you do about avoiding chemo at all costs, that is mainly what is pushing me towards the RPLND. I've always been very healthy and I'm currently in the best shape of my life (besides the whole TC thing lol) so I definitely want to do everything possible to preserve as much of that as I can. In the end I know that I will get through it all and come out on top, just like all of you!

Joe - Yes I had an abdominal/pelvic and chest CT, all of which were clear. Where did you have your surgery done?

On that note, is anyone familiar with any good surgeons in the Seattle area? My urologist referred me to Dr. Daniel Lin over there, but I haven't had the chance to speak with him yet. I live in a rural part of north Idaho and I have family in the Seattle area so it would be very convenient to have the whole thing done over there!

[RJKD]

I estimate about a 30% chance of relapse. I would recommend robotic RPLND in your case. Surveillance is a good choice too. 1 x BEP is a choice, but it would be my last choice given your relatively low risk of relapse. Once the relapse risk approaches closer to 50% then 1 x BEP is worth a look at in my opinion.

[iamstaley]

RJKD, are there many facilities that do the robotic RPLND? From what I’ve read (and my urologist agreed) the open procedure allows a better “look” and potentially more complete dissection. I’m certainly not against a less invasive procedure though! My wife actually had a patient the other day who’s husband had it done that way and she said he looks like he got in a sword fight with a midget lol, but otherwise you’d never know.

My urologist said I’d have an estimated 30-50% chance of reoccurrence and most of my reading (and you!) seem to confirm that range, given the large portion of EC. I’m generally an optimist and my first thought was to just watch it and trust that my body has my back, but I’m wary to risk any amount of chemo. The surgery seems to have very few long term drawbacks if done well, and even if determined unnecessary will at least confirm so. I’m scared that if I chose surveillance and it does come back that I will have a much tougher/longer road ahead than if I just “nip it in the butt” now. Again, I know my body is strong and I have faith it it, but unfortunately this IS a deadly disease and I’m trying to respect that and not take any unnecessary gambles. For better or worse, I’m not a huge risk taker haha!

I have given some thought to a round of BEP, but mature or not the large amount of teratoma in mine makes me nervous. That is also something that is pushing me towards the surgery. Do you think the teratoma should be of any concern?

Thanks for all the feedback guys, it’s nice to vent to people who can relate to all of this. I have so much more respect for anyone who has dealt with these issues, it certainly has been an eye opener!

[RJKD]

Your relapse rate is not quite at 50%. It's about 1 in 3 will relapse in your situation and then likely require 3 x BEP.

There are several surgeons in the US that do the robotic RPLND. Mohamad Allaf at Johns Hopkins is highly regarded. I would consider going to him. More lymph nodes are removed by the open procedure and so it is likely more curative, but it is a more extensive operation. Dr Sheinfeld at Sloan Kettering only does the open procedure and that's what he would recommend.

Your large teratoma component does make a difference. It pushes the needle more towards RPLND, but with surveillance being a completely good choice as well. However, the teratoma doesn't scare me at all, it's just that surgical solutions may be a better approach. I would have zero hesitation in doing an RPLND in your situation. For me, a 30% relapse risk is too high. I would not be comfortable with that but one's level of risk tolerance is very personal. You have a surgery that can reduce the risk to 10% if zero lymph nodes are positive. That's a risk I would be comfortable with.

[Kelturas]

i also had swollen nipples that hurted a lot. Unfortunately my doctors didnt take this serious so i had my diagnosis 6 months later. My bhcg was 225.000 and my testosterone 1160.
After the orchiectomy the testosterone was halfed and 580. During the Chemo and RPLND my testosterone fell to 333 (335 is minimum for my doc) but went back to 500 and is like my normal testosterone level.

[Joe.shupe22]

I had my rplnd done by Dr Brian Lane here in Grand Rapids, MI. He removed 40 lymph nodes, 2 of which contained cancer. I opted for surveillance. Dr Lane is highly trained, extremely personable and came highly reccomended over any surgeon in my area aside from IU. My experience with him thus far has been wonderful. For me, he is the type of doctor that puts my mind at ease just walking into the room. After the very first consult with him I knew he was the right surgeon for me.

[iamstaley]

Joe, I know it's pretty early still, but how's life without the nodes? Have you had many issues after the surgery other than the stuff you'd expect (pain, ect)? My markers came back all good, so I meet with the surgeon in the near future. I actually just canceled my 9 day trip to the Dominican Republic because it looks like the surgery will land right on those days lol bummer! Just hoping that I can get this over with and put this behind me.