My RPLND is in 5 days and I have ?'s

[God For Hire]

Hello everyone,

I came across this site today and thought it would be a good place to get some of my questions answered.

First off let me give you a little background. I'll try not to make it a book.

I'm a 22 y/o from Anchorage, Alaska.

About 2 months ago I was walking home from work when I noticed that my groin was sore. When I got home I narrowed the pain down to my scrotum, specifically the left testical. When I looked at it, I saw that it had fallen and was just hanging loose at the bottom of the sack. I thought I might have just pulled something so I slept on it. The next morning, in the shower I noticed that it had sort of gone back up in to place and didn't hurt much anymore, so I forgot about it and went on with life.

Then about one month later I was on vacation out of the country with my parents. A few days in to the trip I woke up one morning and went to use the restroom when I noticed that my left testical had grown so big I couldn't close my fist around it. To shorten this part of the story, it didn't hurt so we waited almost 2 weeks until I was back in Anchorage to go see a doctor.

When I got back to Anchorage I was able to get referred to Dr. Strawbridge. Again to shorten the story a bit, I got an ultrasound, he saw that it was a tumor so he was able to get me in for a left I/O that same night. It was a 7cm teratoma: 20% Embryonal Rhabdomyosarcoma and 1% Yolk Sac. Then I had a CT scan of my abdomen, it was negative.

Then I got in to see Dr. Spencer an Oncologist. She and Dr. Strawbridge talked and came to the conclusion that I needed to get an RPLND and the best place to get it was at I.U. So she called down there and was able to get me in with Dr. Foster for June 10th.

I don't know much about the surgery other then it's a full open RPLND.

So if there anything you guys can tell me about the procedure, recovery and anything else about RPLND you wished you knew before going in. Also I know that I.U. is a pretty popular place for TC patients to go, so anything you can tell me about it would be great.

I'll try to update when I have new info.

Thank you,
Kyle

[dadmo]

Kyle:
Sorry you had to join the club. If you seach the site you'll find days worth of reading on the subject of RPLND's. Here's a link to the most recent discussion. RPLND Q&A (http://www.tc-cancer.com/forum/showthread.php?t=9798&highlight=rplnd)

After you check that out feel free to ask anything and don't worry about repeating a question. It important that you feel comfortable and understand the answers.

[Aegean]

Kyle,

You may also want to PM with "itsadeepbluesea" as he is about a week out of the procedure and can tell you exactly what he is going through and how the healing process is working in real time. His thread and account of his surgery is here (http://www.tc-cancer.com/forum/showthread.php?t=9758).

[Paul54]

Kyle,
So sorry to have to meet you this way. I haven't been in your shoes so can't offer any meaningful advice on the RPLND. Good to know the door is open to IU. Like dadmo said, fire away with questions. Best wishes,
Paul

[David1969]

Kyle

I have had 2 RPLND's the second by Dr. Foster at IU. I can't speak highly enough of him and the team there. If you have any specific question splease feel free to PM me.

Dave

[Itsadeepbluesea]

Hey bud as Aegean said I just had my RPLND on May 26th feel free to PM me if you want. Also my account so far is under my post called big day. The one thing I can say is if you read up it sounds really scary, but its not as bad as it sounds. I'm not going to lie, its not something I would refer to as fun but it not as bad as it sounds. One thing I would suggest is sperm banking just in case something was to go wrong and the nerves were to be cut. There are quite a few things to ask about, one is how often your surgeon has done this but being as your going to I.U. I would assume they have done it a lot. Second you want to find out about prep for the surgery, they will have you do some kind of bowel prep. I would ask about recovery time and diet for the surgery pre and post procedure. If they don't mention it ask about the possibility of an Epidural, that will help a lot with pain. What I can tell you about recovery is each day gets a little better. I'm only about 10 days post op and I don't really have any pain. Expect not to be able to move around though as where they cut makes movement in any direction slightly difficult, I'm just starting to be able to get out of bed with out some weird funky slide role combination. Thats all I can think of for now if I can think of anything else I'll post. Like I said if you have any questions feel free to send me a PM. Do worry its not a walk in the park but I'm sure you'll do fine.

[MRMRSU]

Hi there Kyle and thanks for posting your story...

*First, you are in great hands at IU with Dr. Foster so you can be confident in your very, very wise decision to head there.

*The one thing I know they do not stress enough is how important it is that:
#1) You do NOT eat too soon post surgery. It's a bit vague on how many days post-surgery you will have to be NPO (meaning no food orally). They will keep your fluid intake down to almost nothing as well. Be prepared that you will only be allowed to suck on ice chips for the first couple days. Or they will give you sponge tip stick to dip into a cup of water.
#2) You go on a NO-FAT (or at the very least a very LOW-FAT) diet for at least 2-3 weeks post surgery.
The reason for the above is to avoid a complication called chylous ascites. Although this complication is uncommon, you want to do what you can to gain any advantage with your recovery as possible. The small intestines are what produce chyle during digestion. The lymphatic system and the vessels associated with it (where fats pass through) can sustain small nicks and tears during the removal of lymph nodes. Until it has a chance to heal and close up these small tears, you run the potential of producing / retaining chyle in the abdomen as the vessels are unable to carry the chyle where its supposed to go.

*Surgery averages 4-6 hours. You should expect to be in the hospital just shy of a week.

*Your doctors and nurses will try to get you up and about as soon as possible while you're admitted. They will ask you to walk...walk...and then walk some more. This will help the bowels get moving which is important in your recovery process.

*Like Matt suggested, you may want to consider banking sperm.

*When you get home, have a pillow handy by your side and use it against your stomach if you have to cough, sneeze or laugh. Remember to get up and around, and WALK some more.

*You will most likely find that sleeping in an inclined position (rather than on your sides or flat on your back) will be the most comfy way for the first few weeks. You may also find yourself walking around hunched over, favoring your incision. In a little bit of time, you'll be more comfortable and start to correct your posture as the incision heals.

*Most important, best of luck in this next step you have to take to beat cancer. :)

[God For Hire]

Thanks so much to everyone that has posted so far. I only have time to ask one question now before I have to head out to work. If I have my surgery on the 10th, what's your best guess as to when I'll be able to return to work? I basically sit at a desk for 8 hours a day.

Don't worry I have a lot more questions to ask later.

Thanks again,
Kyle

[Scott]

I tried going back to work two weeks after my L-RPLND, and it was too soon. I'd count on four to six weeks off.

[God For Hire]

Here are a few ?'s off the top of my head:

What is used to close the opening? Stitches, staples, that gel stuff? If it is stitches or staples, when do they take them out and does it hurt like a mofo?

Does anyone know if there are sperm banking facilities at I.U.? We don't have any in Alaska.

How long after the surgery do you think I'll be able to take a 1 hour plane trip and 5 hour train trip(laying down)?

[David1969]

As I said in an earlier post Dr. Foster did my second RPLND. I was in hospital 4 days (Thursday until Sunday) and flew home (about 2 hours) on the Tuesday.

[Scott]

Does anyone know if there are sperm banking facilities at I.U.? We don't have any in Alaska.You might consider the LIVE:ON (http://www.liveonkit.com/) sperm banking by mail option.

[mahalomom]

Kyle,

Just wanted to let you know that I'll be praying for you. The 10th is 3 days away and you may be in Indiana now. My son saw Dr. Einhorn at IU, but I've heard wonderful things about Dr. Foster and he probably does the most RPLNDs or is in the top 3. You will be in good hands.

~Mary Ann

[dogy]

Here are a few ?'s off the top of my head:

What is used to close the opening? Stitches, staples, that gel stuff? If it is stitches or staples, when do they take them out and does it hurt like a mofo?

How long after the surgery do you think I'll be able to take a 1 hour plane trip and 5 hour train trip(laying down)?

i had internal stiching, they dont need removal they disolve on thier own. but i believe most people get staples.

I dont know how long after surgery youll be able to do all that traveling. Recovery time can vary for different people. They let me out of the hospital in a week, i took a 1hr ride home in car(wasnt driving) and was OK.

best wishes

[MRMRSU]

Andy had staples and they felt like little pinches when they were removed...some had fallen out prior to his appointment to remove them. He said they didn't hurt too much, considering how he was so concerned about having them removed.

It won't be fun, but I think if you are well enough to be discharged from the hospital, you will be able to handle that long journey back home (hopefully not too many steps to climb - otherwise I hope there's some kind of porter service that can shuttle you around in a wheelchair). Best of luck to you.

[Itsadeepbluesea]

They used staples for me, as far as getting them out they said 10 days post op and I think I got mine out at 8 days. My suggestions is to have them start at the top and work their way down. When I had mine taken out they went from the bottom up and each one got a little more painful, so if you can have the top ones taken out first so it gets a little less painful with each staple. It doesn't really hurt all that much though, it more feels like a burning pinching sensation. Good luck on the 10th our thoughts will be with you. As far as the plane and train rides I would ask your doctor about that. I would think it would be when you can tolerate it but they make have medical reasons why you have to wait a certain amount of time.

Matt

[God For Hire]

Big day today.

I leave for the hospital in 20mins. The surgery itself is for another 4 hours and Dr. Foster said it should take about 2 hours. When I was getting ready just now I absent mindedly ate half of a small cookie, I hope that won't mess up the surgery.

Anyway, I'll try to update when I get out.

[Aegean]

I think you'll get away with the 1/2 cookie as long as it was really half... just be sure to mention to doc Foster... no surprises.

I think it's abit more than 2hrs, but you'll be asleep either way.

Best of luck and keep us posted.

[Itsadeepbluesea]

Good luck bud, keep us posted on how things are going with your recovery. Our thoughts will be with you.

Matt

[dadmo]

Best of luck today.

[MRMRSU]

Good luck today Kyle!

[Karen]

Hi Kyle, hope all went well yesterday! Lookign forward to your post....

[God For Hire]

Thanks for all the well wishes everybody. I sat up in a chair for 30mins today, that really hurt, they're gonna have me do it two more times today. Also the morphine is making me sweat a lot. It turns out my veins really hard to find, they had to stick me 15 times in the OR to get an IV in.

Anyway, I'm really tired so I'll talk to you later.

Kyle

[dadmo]

Kyle:
Thanks for checking in. You have lots of us in your corner. Rest up.

[Itsadeepbluesea]

Glad to hear your doing well, sorry to hear about being a pin cushion. Keep up the hard work and you'll be up and walking around in no time at all.

[God For Hire]

I talked to Dr. Foster today and he said that the surgery went well. They did have to take the nerves on the left side becuse these nodes were a larger then they should have bee

I took off my bandages a few mins ago then walked for a few steps. They take out my catheter and IV's tomarrow.

I'll keep you folks updated.

[dadmo]

Get a good nights rest and tomorrow walk, walk, walk.

[Karen]

Kyle,
Glad surgery went well andyou're recovering and moving around a bit.

[Itsadeepbluesea]

Glad to hear your doing well. Keep up the hard work and as dadmo said walk walk walk.

Matt

[Vinny]

Keep up the good work! Walk, drink, fart, and poop. Then you can go home. Once that catheter comes out it's a lot easier to get up and around, so you won't need to wait for a nurse to go walking. If you still have your PCA when they come to take the cath out (you may not) make sure and give yourself a hit before they yank it out - it's a bit unpleasant. :eek:

Get those staples out as soon as they'll let you - leave them in too long and the flesh starts to tear and stretch and makes the scar a bit uglier (if you care about that).

BTW, I worked a desk job and I went back part time (including driving) about 3 weeks after coming home, and I was a (relatively) old guy of 35 at the time.

[God For Hire]

Good news. Dr. Foster came by a few hours ago and told me that my nodes were all clear and now it's just gonna be surveillance. He also said I get out of here tomarrow, and the staples should come out 2 weeks from the day of the operation.He said theres no restriction on when I can travel or go back to work, so it's up to me, also he said that I shouldnt even bother with the no-fat diet thing after the surgery becuse getting sick from it was so rare that it dosnt really matter what I eat.

Anyway, I'll keep you folks updated.

Kyle

[Itsadeepbluesea]

Sounds like your doing well. Thats so good to hear. Keep up the good work pal.

[MRMRSU]

What a relief to hear that the nodes were all clear...that's the best part of all this, Kyle. Best of luck on your recovery and on your journey back home. I know Dr. Foster has never seemed to be a proponent of the no-fat diet post-surgery, but ask any of the guys here who have had the rare struggle with chylous ascites and you'll want to stay at the very least low-fat for a few weeks. Best wishes Kyle!

[God For Hire]

I had a bit of a scare(or overreaction, it depends on how you look at it I guess) yesterday. I rode in car for 5 hours and about 1/2 way through the trip my right(last) testical started hurting. I would feel a pressure pain on the top right side of the testical, back towards the leg. It would hurt when ever the testical was pressed or shifted a lot. When we got to where we were going I noticed that it had swollen up to the size of a very big egg and had gotten hard.

So I, just having had a left I/O 5 weeks ago and a RPLND 1 week ago started freaking out. I was hoping that what ever this was I caught it soon enough that my last testical wasn't dead yet.

The town we are in right now is very small, so after talking to a nurse at the urgent care place she said out best choice would be to go to the ER at the local "hospital", becuse they were the only place with an ultrasound machine.

We went to the ER, the wait wasn't very long. They took us(my mother and I) in to a room, a doc came in, checked it out, ordered the ultrasound. She had to wand me twice, the first time she wasn't able to see any venous blood flow in the testical. That scared me, becuse she said that the testical might have torsion itself around and cut off the blood flow. But she wanded me again and was able to see both blood flows. Then the doc came back in and told me that it looks like I have a hydrocele. Most likely caused by my lymphatic fluid not being able to compensate for the loss of the nodes in my abdomen yet, so the sitting up in the car for 5 hours caused the fluid to drain into my sack. He told me to lay down a lot for the next few days and elevate the testicals.

I did that all last night and when I woke up this morning the pain was gone and the testical was soft again, but it feels like the fluid hasn't drained out of it yet.

I wanted to ask, did I overreact or do the right thing?

Also, has anyone else here had a scare like that, that turned out to be not cancer?

Thanks for reading,
Kyle

[MRMRSU]

Hey Kyle: Not a single person here would think you over-reacted given everything you've been through. So in my opinion, you did the right thing. My husband retained a lot of fluid because of his complication...however, about a year later, he did end up with a large hydrocele that his body just could not reabsorb so he ended up having to get it surgically removed. Give yourself some time to heal, and I will venture to say that your body will be able to reabsorb the fluid as is usually the case. Has IU (Dr. Foster) been informed of this yet? I'll be interested to know if he wants you to keep up with your walks, despite the fact that the local docs want you on your back for a few days. Let us know how things go for you.

[mahalomom]

Hi Kyle,

No overreacting on your part. Now is the time you have to pay special attention to your body and let your docs know of any slight changes.

I'll be praying for a God speed recovery.

Mary Ann

[God For Hire]

I made it back to Anchorage, first class really helped me stay comfortable for the 6 hour flight. It's just great to be back home, in my bed, after 2 weeks.

I get my staples out tomorrow morning. Anyone have any pointers? Pain-wise or anything else?

It so nice to come home to relax and finding a big pile of hospital bills in your room.

Anyway, thanks for reading.
Kyle

[asmartin]

Glad to hear you're home and continue to take it easy. I'm not sure about staples in the stomach, but I had fifteen staples with my I/O and didn't feel a thing when they came out. Good luck!

Adam

[NYC Russ]

I forgot the precise number (58?) I had, but getting the staples removed was as painless a process as any other - on par with clipping your nails. Then again, I had a hot nurse doing it (and my wife glaring at me over her shoulder, hehehe).

The bigger benefit is once they're out, you'll start feeling more comfortable almost instantly. It's like night and day.

[God For Hire]

I just got back from the doc and he removed almost all of the staples. He left 5 in around and above the belly button. He said that the incision opened up a little, becuse clot was holding the two sides together, not my skin. So now I have to go back in a week and get them removed.

[MRMRSU]

Hey Kyle...glad to hear you are back in the comforts of home, and that you got through those "pinches" getting the staples removed. Yeah, you don't want the incision opening up, so I think it's good that the doc was being cautious to leave the few remaining just a while longer. Take care, keep up with your walks and I hope you'll be feeling better in no time.

[God For Hire]

As if cancer wasn't enough, it looks like I have to get my wisdom teeth pulled now. But, until then I have to live with a sharp pain in my mouth that's making it even hard to sit here and type.

[MRMRSU]

So when does the dentist want to remove the wisdom teeth, Kyle? You'll look like a chipmunk for a few days, but it's a cakewalk compared to what you've been through. Good luck. It may not seem like it, but it really is WISE :D to remove them.

[God For Hire]

I just got back from Dr. Spencer's(My Oncologist) office, and my blood work and chest x-ray were all clear. Yay!

[Scott]

I just got back from Dr. Spencer's(My Oncologist) office, and my blood work and chest x-ray were all clear. Yay!Congratulations on the great news!

[GmazcasGirl]

I just wanted to post after reading all these posts.

God for Hire, your story is really touching!! Congratulations!!!!!!!!!!!!!!!!!!

[mahalomom]

YA!!!!!! So glad to hear your ALL CLEAR news!!!!!!

[NYC Russ]

Awesome news. Now go relax and rest up!

[MRMRSU]

Great news on the all clear Kyle...to many more!

[God For Hire]

Hey everyone and thanks for the well wishs, I have my next check up on Sep. 5th.

I have a ? about lower abdominal pain.

For the past week I've had pain in the lower right side of my abdomen, moving up to the mid abdomen. It's not constant, but almost ever time I lean backward, forward or turn side to side it hurts. The pain feels like the pain you get when you pull a muscle bad, but it's been over a week and I've never had a pulled muscle hurt for that long. I guess it could feel like what a hernia would fell like, but I've never had one and I think it's in the wrong place.

Does anyone know if this could be caused by some post-RPLND thing, or could it be some new cancer thing, tumors...ect.

Any help would be greatly appreciated.
Kyle