My 23 year old son has just been diagnosed

[discodolly]

I'd like some information on what we need to do next.

My son had surgery on Tuesday to remove his rt testicle. He had a CT Scan and it revealed 2 affected lymph nodes in his abdomen. The pathology report indicated 100% Embryonal Carcinoma. We are from a very small town in Texas and he is currently being treated by a Urologist. The doctor has advised that we wait and run more blood tests on 2-17-06. I would like to know if we should be seing an Oncologist at this point.

He does not seem to want to know very much about what is going on or what comes next. Is this normal? What should we do?

The other problem we have is that he was not working at the time and has no insurance. Any advise on this issue would help.

Thanks for any help.

[Scott]

Welcome to the forums! Although some people do prefer not to know all the details, I prefer the Lance Armstrong Foundation's motto, "Unity is strength, knowledge is power, and attitude is everything."

The first thing he needs to know is that testicular cancer is nearly always cured when it's caught early, and usually even in advanced cases.

He should definitely be talking to an oncologist now, and reading up here and at the Testicular Cancer Resource Center (http://tcrc.acor.org/).

As for the insurance problem, don't let that be a barrier to getting the treatment he needs. Check this thread (http://www.tc-cancer.com/forum/showthread.php?t=1519) for some suggestions.

Best of luck, and keep posting here with updates and more questions!

[matthias]

If lymph node involvement has been positively identified by CT, I fail to see the need for just another blood work on Feb 17. Even given recuperation reqs after the I/O, your son could be well into systemic treatment ("chemo").

What's your urologist's reasoning? And yes, get an oncologist involved; preferably one who has had previous exposure to TC.

[Jens]

2 affected lymph nodes in his abdomen.
100% Embryonal Carcinoma.

Hi discodolly59.
Sorry to hear this, but don't wory, your son will be fine.
I had a somewhat similar thing going on inside me last year and after a biopsy from the enlarged lymph nodes that showed that the cancer had really spread, I had 3 series of the standard TC chemo called BEP (Bleomycin, Etoposide and cisPlatin).
Just today I got the message that 7 months post-chemo the CT scan, lung X-rays and blood test are all clear.
And I feel fine too, so even if your son has to down the chemo road, he will also be fine.

Expert medical help is essential. Don't wait around to long. A TC experienced oncologist is the next step.

Best wishes
Jens

[discodolly]

Thanks for getting back to me. I plan to call his Urologist today and ask to refer us to an Oncologist. I will keep you updated on his progress.

He read of Jeff's experience with TC on TC Experience and it seem to be like what he is looking at. He is scared but has a good attitude.

Thanks again,
Disco

[wolken]

if the lymph nodes are smaller than 2 cm it's possible that RPLND will be performed and no chemo at all.I would not "rush" into chemo if number of lymph nodes is smaller or equal than 3 and size less than 2 cm ....dont rush , get as mush info as possible.

[Scott]

The trouble with embryonal carcinoma is that it can skip the lymph nodes and go straight to the lungs, so RPLND may not be the best primary treatment. (See this thread (http://www.tc-cancer.com/forum/showthread.php?t=1006) for previous discussion on this topic.)

[discodolly]

We went to see his Urologist on Monday and found out the incision from his surgery had become infected. Went back into the hospital Tuesday morning so they could open it up and clean it. Today we were shown how to replace the gauze 2 to 3 times per day. Right now this is very painful for him. I asked his doctor about the Oncologist and he told me that we are waiting to check his levels to see if he will need the RPLND first or chemo first.

There have been a couple of comments about this moving to the lungs. When they did the CT Scan it had not moved to his lungs so maybe we are in the clear there. I am sure that they will do another one once he sees the Oncologist since it is my understanding that this type moves and grows very quickly.

We don't have any appointments until the 17th so maybe we will both be able to get some rest.

Thanks for all the advice.
Debbie

[Jens]

I asked his doctor about the Oncologist and he told me that we are waiting to check his levels to see if he will need the RPLND first or chemo first.

Hi Debbie.
Sorry to hear about the infection, I hope it gets better very soon.
I don't quite understand why you need to wait for anything before you see the oncologist. The main thing here is to get expert treatment and not some local docs best shot in the dark. Really!
And a blood test for tumor markers should come back within hours.

Best wishes
Jens

[Scott]

I would get the oncologist visit scheduled right away. Typically, the urologist's job is essentially over once the surgery is complete, and the oncologist takes it from there, even if the choice is surveillance rather than active treatment.

[Mom]

I don't understand the wait either. He should also think about banking sperm. Dianne

[discodolly]

I have thought about sperm banking. Not sure how this will work due to the no insurance issue. We will have to wait and see.

Debbie

[dadmo]

With insurance being an issue I would focus on making sure your sone gets proper medical treatment. Sperm banking is a good thing to do but sterility is not a given after chemo, he may very well be able to have his own children when this is all done.

[MommaBeth]

I certainly understand what you are feeling right now. Your head is probably spinning! You are not too far - have you considered trying to get into MD Anderson in Houston. You can self refer there, and there may be a Cancer Center in Austin. What we found helpful is that the Urologists and Oncologists work together there. My son had an RPLND in October. He had stage 1, non-seminoma 100% embryonic carcinoma. Turned out no lymph nodes were affected.

[discodolly]

Just came back from taking a short vacation. We thought that this would be a good time since we have an idea that it may be awhile before we can do this again.

Eric had blood work done yesterday and we should have the results by Tuesday or Wednesday. We will be glad to have the waiting game over and know what we are facing first.

The infection has cleared up but it was very difficult changing the dressing at first. I know it was hard on Eric but it was also very hard for me. It is difficult as a Mom to see your child in so much pain and not be able to do anything about it. He frame of mind is much better but he has little energy.

MommaBeth - have heard of MD Anderson but are hoping that we will be able to get taken care of at University Hospital in San Antonio since it is alot closser.

Will let you all know what we find out.

Thanks,
Debbie

[brianktexas]

Debbie,

I just caught your post and noticed you are from Seguin. I'm not sure how your sons treatment is proceeding, but if you have any questions about physicians in the San Antonio area let me know. There are some very good physicians.

My urologist name was Dr Ian Thompson (210)562-5700. I switched over to him on the recommendation of a member here.
I did my treatment at the CTRC which is also affiliated with University Health Science Center.

As far as the sperm banking goes. The cost isn't too bad. Here is a link to a clinic in San Antonio. The rates are very reasonable for banking. I want to say it was around a $100-$200 per year. Well below average. Dr. Witz is the doctor we consulted with.

http://www.uthscsa.edu/stwhc/fertility/bios.html

[discodolly]

We just rcvd the results of Eric's blood work and the AFP levels have gone up rather than down since his surgery. We have an appointment to see the Oncologist on Moday and he will lay out the plan for his Chemo.

BrianKTexas - I asked the Urologist about Dr. Thompson and he said that he is a Surgical Oncologist and we would be referred to him if and when he needs the RPLND.

[dadmo]

Debbie:
I know it's discouraging to see the markers go up but it's not that unusual. Sometime you get what I have heard called a bloom in the numbers and they may very well go down on there own. What were your sons markers.

[discodolly]

Eric went to see the Oncologist yesterday and here is what we discovered and the plan. Eric's cancer involved the blood vessels, which we didn't know and so therefore they plan to do 4 rounds of Chemotherapy. Each round will last 3 weeks. One of the medications affects his pulmonary functions so they are going to do a pulmonary function test prior to the Chemo. He also needs to have a Port-A-Cath inserted by a surgeon so that they do not have to put in an IV every time. They only do Chemo here on Mondays and Tuesdays so we are estimating that it should start in about 2 weeks.

His spirits and up and he is adamant that this will not beat him!

[jdunn]

Hi Debbie,
My son's markers also went up after his surgery. It was very upseting to us at the time because our knowledge of TC was so little. Josh had 4 rounds of chemo. He had the pulmomary test because of the bleomyicin (spell?) that he would be given. He never had a port put in. Towards the end of chemo though his veins were almost shot.
I am thinking of you and your son for this is a tough time right now. Just know that it will be over soon and your lives will go back to a "new" normal.
Take care.
Jane

[amorgan74]

Hey Debbie, My husband had a port put in also, after his initial visit with the onco the nurses told him he would be getting one, whether he wanted to or not. Wesley is kind of squeamish with the sticks and I got first hand experience when we got married. We had dated about two years before getting married and when we went to get our blood test done he passed out on the table. I thought, Uh oh, not good here. Fortunately I have learned that it had more to do with the person doing the draw and his vessels than being a bad omen. His port made chemo more convenient because of rolling viens(sp) and although it was little bothersome when he slept he wouldn't have went through chemo with out it. There is a thread under the treatment part of the forum that lists side effects from the BEP chemo that you are talking about. It has a lot of good info on what to expect, the downside is that all of the things that are listed there are not guaranteed. Because the chemo effects everyone so differently it's hard to say what will bother your son the most. I wish you and him the best of luck with chemo, it's a hard road on both of you but the outcome is worth so much more. Keep your spirits up and please let me know how it goes. And he's right, no matter how bad he may feel going through chemo he will win. I will be keeping you in my thoughts and prayers as you all go through this. April :)

[drom]

My son has a port as well and it is a God send. Squemish is a mild word for Alex and needles. He has often said "I can face cancer but get that needle away from me".

Good luck, we are on the last two shots of Bleo and then waiting for a catscan middle of the month. For Alex the first round was the worst and he dealt with it better with every session.

There is no sight so painful in the world as your son hooked up to chemo but you can get through it moe than you know right now.

Domenic

[dadmo]

The port is a great idea. My son didn't have one and he never complained but on the days where veins would collapse and he would have to get stabbed 2-3-4 times it broke my heart. Just make sure you follow all of the port cleaning procedures and you’ll be glad he had it.

[Don]

I had the port installed after my fifth round of chemo because my veins collapsed and because I started taking TPN... I wish I would have had the port from day 1!!!!!! The tough guy thing..YA... the only thing that came of that was alot of avoidable pain!!!!!! My Afp also went up from 44943 to over 46200 post I/O ...Afp dropped quickly once BEP chemo started....Which Chemo regimen are they prescibing for Eric??? Stay strong and Stay positive !!!!!!!

[discodolly]

Well, the port was installed on Wednesday and he also had the PFT done the same day. He has been a little sore but not much else. We were hoping that he could start Chemo (4XBEP) on 3-6 but the results of the PFT are not back yet so it looks like we have to wait one more week. The waiting is very hard. Eric says he soooo bored with watching TV and playing XBox. In the begining many of his friends came by but now it is only a select few, I guess the initial shock has worn off and they all have their own lives to lead. Can't blame them for that. Hanging around with Mom is getting old for him. I will keep everyone posted on how he does with his Chemo. Thanks for all the support. This forum is the first thing I read every morning, even before my emails.

[discodolly]

We rcvd a call from the hospital yesterday and Eric will be doing his Chemo there instead of the Doctor's Office. He doesn't start until 3-20 and this is very exasperating. This waiting for something to happen is very hard. It seems like every time Eric gets himself mentally prepared to start the Chemo it gets postponed. We have a doctors appointment on Monday to go over the test results and I will post again then.

[Scott]

That has to be frustrating. What's the reason for the delay?

[Don]

Kind of weird they are delaying due to a pulmonary test.. I can see a few days but weeks is a little much.... Time is of the essence - if they try to delay again I would insist on them starting ASAP... Are they trying to decide whether or not to use Bleomycin ??? That would be the only reason I could see to wait for the PFT..... Good Luck!!!! DON :)

[discodolly]

Eric is going to get Bleo so that is why we had to get the PFT done. The delay is due to the hospital. They said that if he was only going to get one treatment per week they would have tried to fit him in on Monday but since it is one treatment per day the first opening they had was 3-20-06. They will call us if they have a cancellation since we are only 5 minutes from there.

[Don]

Are they giving him outpatient chemo??? Or is that the next room they have available for the 5 day treatment period for BEP?

[swg03a]

Hola,
Hey what town do you live in. I live in abilene. Just wanted to know, so i could offer help maybe a visit or just someone to talk to who has gone thru it! I also do not have insurance and no job since i am a student. There are lots of way to get around the system to recieve the best care that you can get.
sincerly,
scott

[discodolly]

Good Morning -

Eric's Chemo is being done as an outpatient at the hospital but they want him there in order to monitor him. It is also better to have it done there since the hospital is willing to wait on the Medicaid and the Oncologist likes to get paid at the time of the visits.

We live in Seguin, Tx which is very close to San Antonio. It is a long way from Abilene but I do appreciate the offer.

I will post again after Eric's first week. Thanks for the support, you all don't know how much it helps.

Debbie

[swg03a]

Hola,
Tell eric, i know he will overcome. Tell him to think of everyday of chemo is just a new day to become healthy and have a complete recovery! I had to tell myself that everyday! Best wishes! If you want I could give him a call just for a simple "u can get thru this"! Best wishes! I had the exact same tc as he has!
sincerly
scott

[discodolly]

Scott -

I sent you a private message.

[discodolly]

Eric finished his first week of Chemo and I can say that it has been rough for him. I didn't expect him to get the nausea and puking after only the first day, he said he never expected to feel this sick. His sense of smell is way out of wack. He told me the hot water smelled like mildew and the car ac smelled like cardboard. He can't stand to be around anyone with perfume or cologne on. His sense of taste is really screwy also. I guess these are typical side affects. He goes in next week and the following week for one day of the Bleo, much better than being up at the hospital from 8:00 am to 3:00 pm every day.

I want to thank Scott, aka swg03a for calling Sunday night before Chemo started and speaking with both Eric and I. It certainly put our minds in the right place.

[dadmo]

Debbie:
Make sure your son takes his antineusea medication over this weekend. My son needed to take them until the monday after each round. The changes in smell and taste are not unusual and will return to normal when he's done.

[Don]

If the nausea can't be controlled by Compozine or Zofran you may want to mention Phenergan to the doctor---It is give VIA the IV and is about the best for Nausea... Hope he find something to control the nausea soon...

[discodolly]

Eric just finished his first round, one down three more to go. He had trouble with some nausea and complains of being tired all the time. His white count was down to 1.4 but they didn't do anything about it except to tell him not to go anywhere so that he doesn't run a chance of catching something. His attitude changes daily. Some days he is angry at the world and takes it out on me since I am the only one home with him. I told him that I completely understand that he is angry but being verbally abusive to me is not the answer. That stage seems to have passed and now he is depressed. I contacted the social worker at the hospital who is going to set him up to see a counselor. Hopefully this will help, it certainly can't hurt. His hair started falling out and that doesn't help the depression. We suggested that he shave it so that he can get it over with but he wants to hang on to it as long as he can. Mostly he says that he is sick and tired of being sick and tired.

[jdunn]

I know how hard it is to see your son go through something so tough. The professional help is a good idea considering the depression and anger your son is experiencing. The road ahead will get a little more difficult. Try to stay possitive and know that this will soon be over. One day at a time. Thinking of you.

[discodolly]

Since the last post we found out that Eric has Acute Bronchitis and was coughing up a little blood. Took him to the ER, they checked his white count and it was back up which was good. After numerous tests and lots of time they gave him antibiotics and sent him home. The cough has gotten better so I am thankful for that. He finally shaved off the hair and the beard this past weekend. I think he looks good like that but he refuses to go anywhere that he doesn't absolutely have to. The second round starts on Monday and that will be a long week for him. I hope it goes fairly well. His mood has improved lots, by the time they get him scheduled to talk with someone he won't need it.

Thanks to all who respond, I read this forum everyday and truely am thankful that there is a place like this where we can all go to vent and ask questions.

God Bless,
Debbie

[discodolly]

It had been a long time since I last posted. Eric finished his second round with all of the expected side effects. Lots of nausea, etc.. He has started getting Nueropathy in his hands and that can get very painful for him. He was scheduled to start the third round on Monday but his blood count was too low so he got a shot of Lupitin(sp?). He got another one yesterday and will get the last one today. Tomorow he will get his count checked again and hopefully will be able to begin the third round on Monday.

[dadmo]

Debbie:
Postponing chemo because of a low white count happens a lot with tc patients but it should not. Please see the attached link and read the section “A Few Important Final Tips”. The postponement of a few days will not matter but just be cautious about this in the future. http://tcrc.acor.org/chemo.html

[discodolly]

I know it has been a long time since I have written but here is an update. The third round went fine, much like the first two. On 5-29-06 (his B-Day) his white count dropped very low so the started him on Nuepegen (sp?). By Friday of that week he was very sick. They put him in the hospital for 6 days with pnuemonia, giving him massive doses of antibiotics. They also discovered that the Port was messed up and needs to be replaced (the line is going up into his neck rather than down into his chest). By Wednesday he seemed to be doing better so they let him go home with plans to replace the port the next day. Went in Thursday for the surgery and Eric was much worse than when we first brought him in. They canceled surgery and put him back in the hospital. After a few days of more antibiotics they found that it was the Belo causing the pnuemonia and the pleurisy. They put him on steroids and everything got much better. He finally got out the day before yesterday. They did a PFT yesterday and he is only at 70%, they have said this may improve a little but probably won't ever return to normal. This is the same thing they say about the Nueropathy in his hands. He seems to be doing better put is still very tired and gets short of breath very easy.

One more round to go which won't start until his port can be replaced and the pnuemonia clears up.

[Kev332]

Thanks for the update Dolly. Glad to hear Eric got better after the steroids were administered. Sounds like its been a stressful time for you guys. This will all be over very soon. 1 round to go!

Take care,
-Kevin

[dadmo]

Dolly:
I'm sorry the road has been so rough but the end is in sight. Stay strong it will be done soon.

[BeachTech]

They put him on steroids and everything got much better. He finally got out the day before yesterday. They did a PFT yesterday and he is only at 70%, they have said this may improve a little but probably won't ever return to normal. This is the same thing they say about the Nueropathy in his hands. He seems to be doing better put is still very tired and gets short of breath very easy.

It's way too soon to worry. I had a pre-chemo PFT done because I had asthma as a kid. I wanted to get a baseline. I was at 88% (typical of someone who had asthma). Halfway through treatment, I did another PFT because I couldn't catch my breath. I was at 50%. I was a little scared, but the pulmonologist told me it could be fixed. The doctors stopped the Bleo and put me on large amounts of steroids. Right after chemo ended, I was up a little from 50%, but not much. About 3 months after chemo was over, the PFT was back around the 88% baseline.

Six months post chemo, I did the Los Angeles Marathon-Bike Tour. 24 miles through the streets of LA with no problems. I wish my car would repair itself like that.

At the point you are at now (two weeks post chemo) I was the sickest and weakest. Read my signature under "Complications". All that happened in the two weeks post-chemo. Hang in there and he will get better.

[engage]

I'm at the about same age im 21 went though chemo 4/3 to 5/29 it was the worst thing i went though in my life but u do get past it after some time. Im sorry about your son, the end of chemo is very soon.

[Don]

Glad to hear Eric only has one more round to go ( the light at the end of the tunnel). If it's any consellation the jugular port administers pain meds and antibiotics with in seconds. I wish I had that port from day 1. Best thing to do with the nueropathy is start medications ASAP... Lyrica seems to work really well for neuropathy..... Do the doctors think the chemo will do the trick or are they thinking about the rplnd??????? Best of luck with round #4!!!!!! DON :)

[discodolly]

This is Eric's Mom again. After all of the Chemo Eric ended up with Pulmonary Fibrosis and Nueropathy in both hands that has never gone away. He has been doing ok dealing with the complications. Yesterday he went to the Doctor for a check up and the doc discovered a lump in the other testicle. We hoped that it would be just a cyst and went for the Ultrsound right away. A few hours ago we got the call that it is in fact Cancer again. We have arranged to do sperm banking tomorrow. He will have a CAT Scan on Friday and see the doc again on 12-26. What a Christmas this has turned out to be. Eric is very angry right now and really doesnt want to talk to anyone. His girlfriend is there for him so that helps. We wont know what else we have to do until after the surgery. I just cant believe this is happening again. :confused: :eek: :(

[Fish]

Discodolly:

I'm really sorry to hear this. I've had the %8&#$&% thing twice also. You'd thing once in a lifetime would be more than enough.

Hopefully it has been caught very early and the I/O will take care of it. There are a number of guys here besides myself who have lost both testicles, and while the prospect is not pleasant, it's more important to get rid of the cancer. There is an organ sparing procedure that might save the testicle, but no guarantees. A member named Rover, had this attempted. He might be able to give you his opinion of the procedure. I did not condiser it in my case.

If there is anything I can do or if Eric wants to contact me, send me a PM and I'll give you my phone or email.

I'm sorry, this sucks.

[dadmo]

Wow that's awful. I wish I had words that could comfort you right. Just know that this is not a recurrance of the old cancer. This is a completely new cancer and your son will beat it again. I just had a scare with my son thinking he had it again so my own anxiety is still pretty fresh. Please keep us posted and let us know if we can helpm in any way.

[EyesWideShut]

Oh my gosh, that would be my worst fear also :( I feel for your family, well, he was strong enough to make it though the first treatment and he will eventually do the same for the next. I'm sorry to hear about his complications and set backs, but he still has his life :) Good luck with everything :)

[Fish]

Something I forgot to mention. Insist on a testosterone level check prior to any surgery. Hormone replacement will likely be necessary and you need to have a baseline level to compare to.

[Margaret]

Hi Dolly...I was not here when you first entered the forum so I spent the last hour getting caught up. This is very unfair to have to battle this once, let alone twice. I am so very sorry that your family is having to go through this. I know your son must be as frustrated as can be!! I will say prayers and you have my support.

love,

M.

[Karen]

Debbie,
I am sorry to hear this...fingers crossed for a very early detection and surgical cure. Hang in there sweetie, we're here for you.

[Scott]

Debbie, I'm so sorry Eric is facing a new battle. We're facing an uneasy mix of triumphs and struggles, of joys and sorrows here -- but I'm glad we're sharing them.

[Eric.in.Tx]

Hey guys Eric here dolly son ... and yeah as most of you know cancer is back in my life... this is very disheartining i feel as if i have been duped..needless to say im very angry as to why this is happeing to me.. all i know is that i dont want this to kill me and that one day this will all be OVER again...i wish this hadnt happend to me i have been "healthy" for around 8 months or so and wam bam im back in the saddle.. i hope this dosent kill me...

[Scott]

Chances are really good you caught this one before it had a chance to spread beyond the testicle.

[Fish]

Eric,

As I said to your mom, having TCx2 definitely sucks, at least I had a few years between mine, but you got smacked too quickly. I'm sure you'll get through it, keep that thought, it will be over and behind you eventually. It seems like they found it early, so that sounds good. If I can do anything send me a PM.

Best wishes and hang in there.

[Karen]

Eric,
I'm glad you came here....we will support you and your Mom as much as we possibly can. Lots of proven warriors on this site, and while it sucks that you got hit with TC2 so soon, others have beaten it twice and I have faith you will to. Let us know how the CT and bloodwork looks.

[mstlyn]

Eric,

You'll beat it, but I'm sure sorry that you have to deal with it again.

I'm sending prayers your way for this to be a part of the past very quickly, so you can get on with living your life.

Hugs-
Tammy

[discodolly]

Thank you all for your thoughts and prayers. Came back from the sperm bank today and although his count is low it is enough to be hopeful for a grandchild somewhere in the future. At least there is a small bright light in this whole mess.

I hope everyone has a blessed Christmas and a very healthy New Year!!

Thanks
Debbie

[Mom]

Eric, my son has a beautiful, 7 week old little girl by IVF. The technology is unbelievable. My husband has been on TRT for 27 years. It stinks, but you will get through this. Keep posting. Dianne

[discodolly]

Update:

Well, the surgery is scheduled for January 7. His CT Scan looked fine and all blod tests were normal except for his AFP which was 9.1, up from 2.5. Doc says if the AFP drops after surgery Eric may not need Chemo again so we are crossing our fingers, but will err on the side of caution. Keep Eric in your prayers.

Thanks
Debbie

[Scott]

The surgery you're talking about is still the orchiectomy, right? It can't be performed sooner than January 7? I'd think as soon as the sperm banking is done, Eric would get that tumor out.

[discodolly]

The orchiectomy (sp?) could be done sooner but Eric wants to go visit his girlfriends family first. They weren't able to go before Christmas due to her work schedule so they are leaving on 1-4 and will be back on 1-6. I tried to talk him into having the surgery sooner but he can be very stubborn. The Doctor thpught that it would be ok so what can I do. It seems like cancer has been such a big part of his life for the last 2 years, delaying the surgery for a few days seems like such a small thing.

[dadmo]

Dolly:
He's being stubborn within reasonalbe limits. We all need to let our children enjoy sometime without cancer getting in the way of our activities.

[a12curlyq]

Hello Eric and Dolly,

I am the girlfriend of a 2X TC survivor, also. He is young too, 20, and his recurrence happened within a very short time, also. It sucks, doesn't it? It looks like you have caught it early this time, which is good news!

My boyfriend has been on the testosterone replacement therapy for a little over 2 months, now, and it is working really well for him. He was getting really bad headaches, and the testosterone made him feel MUCH better. He uses the androgel, and it works out really good for him. He was worried about adding another step to his routine because he's always running late and stuff, but he said it's really not a big deal. He just rubs the gel on his shoulders after he gets out of the shower in the morning, and he is good to go!

Here's to good health and a speedy recovery in 2008!

-Tiffany

[discodolly]

Just came from the Doctor and the news is kind of scary. Eric had his surgery last Monday and everything went great. The scary part is the pathology report. It is a teratoma, immature, with somatic type malignancy (malignant transformation). The Doctor says he has never seen this before in his whole career. He is going to do some research on this and come up with a plan. Eric will get more blood drawn Friday to check his markers and that should give us more answers. If anyone knows about this type of tumor and could give me more information I would appreciate it. :confused:

[Fed]

Hi Debbie,
My first instinct here is that this being an unusual pathology report, that you get a second read elsewhere just to be sure (Sloan comes to mind; some insurances cover it). Immature teratoma turning malignant is not unheard of, but I've only heard of it happening after it spreads. Were they able to identify what the teratoma transformed into? If this is what I think it is, the teratoma usually becomes either a sarcoma or an adenocarcinoma, which requires a completely different regime because the cancer is no longer TC. I'll research this some more, and I'll post more when I find out more. In the meantime, I would get working on getting the second read on the pathology. Hang in there, and please give my best to Eric.

[Margaret]

I know you have been going through a lot Debbie, we are thinking of you and hoping for the very best.

[dadmo]

Debbie:
At this point I have to believe that you need to get in touch with the folks at Sloan. Our house is open and and we are less then and hour from the city. If needed Nancy and I can be your shuttle bus. We've done it before so don't be shy. This is way more important then thinking you might be an inconvience.

[Fish]

Hi Debbie,

Definitely, a consultation with an expert is in order at this point. Sloan is one of the best places.

Dadmo and Nancy's offer to help is genuine, don't be afraid to take them up on it. They're really great.

[discodolly]

The offer is grealty appreciated. Not sure what our next step would be, we have a wonderful Urologist who has worked with Eric since day one. He is contacting the docs at MD Anderson in Houston. Hopefully, we wont be limited on the assistance as Eric has no insurance. He finally got a hearing date with Social Security but that isnt until 2-26. I will keep everyone posted on how things are going. Again, thank you so much for everyones kind words and especially Dadmo with his offer.

[dadmo]

Dolly:
Please be agressive with your follow-ups. If the teratoma has morphed it will require a completley different treatment protocol. The experts at Sloan have worked with this in the past so they may be the people to contact. My sons oncologist was Dr. Motzer. Here's his contact information. (http://www.mskcc.org/prg/prg/bios/131.cfm)

[Fed]

Hey Debbie,

With Fish's help, I've been able to do some more digging on the issue of immature teratoma with malignant transformation. As it turns out, it's not that uncommon. There is a study performed on patients showing teratoma (any kind) with malignant transformation which shows that almost half show a presentation in the testis. One of the authors of this study is Victor Reuter, who is the pathologist at Sloan-Kettering (he actually did a second read on my pathology).

The thing that is key is figuring out whether there is any evidence of spread beyond the testis -this should be noted in the pathology report you already have- and whether there are plans for futher CT scans. They should also note what somatic elements were found. Somatic elements are what the teratoma turned into, and these can be, from most common to least common, sarcoma (usually rhabdomyosarcoma), adenocarcinoma or primitive neuroectodermal tumor.

Let us know how we can help more.

[discodolly]

Here is a copy of the Pathology Report. The good news is that there was no spread to the cord. Again, I can not thank you enough for your help.

[Fed]

Debbie,
Thanks for the more detailed information. This certainly helps out. Though I would still try to get a second read on the pathology, it looks like this was indeed caught early. I also think that it might be necessary to consult with an expert, since the surveillance is likely to be different and perhaps more comprehensive. This is because of the "new nature" of the cancer cells. I have sent you a PM with some info that might be of use. I'll be in touch,

[Karen]

Debbie,
Sorry I just catching up on this. I agree with Fed, a second read on the pathology and get 1-2 experts in the loop.

[discodolly]

We have had some good news. Eric's AFP is down to 3.3 and his B-HCG is 1, all within normal limits. The recommendation is that he get the RPLND, which he elected not to get last time. This time however, I think he will go ahead and have the surgery. It wont be until sometime in March, we are going to try to wait for the SSI hearing. If they approve him and give him Medicaid he can have the surgery close to home. If not he will have to go about 300 miles away. He did get a shot today to replace his testoterone and hopefully in a few days he will be back to normal.

[Already Bald]

Great news!!
The RPLND will clean him out. Hopefully SSI will come through for you.
Best regards,

[Margaret]

This is great news. No taking chances this time around...I hope and pray this will kill the monster forever

[Fed]

Debbie, I think this is a great move. He should be thoroughly checked to ensure that there are no transformed cells anywhere else (since they're not TC anymore, they will behave differently). I'll be in touch.

[discodolly]

We have had some good news, finally!! After speak with several Doctors it has been decided that Eric will not need the RPLND or more Chemo. He is going to continue surveillance. I am happy that he doesn't need the surgery but every time he goes for a CAT Scan and blood work I feel like we are playing Russian Roulette. I'm sure everything will be just fine, but as a Mom we worry so much. I will try better this time to keep everyone posted. The next milestone is his SSI hearing on 2-26-08. It seems so unreal that it has taken 2 years to get to this point.

[TCLEFT]

Excellant!!!!

[Fed]

Debbie, this is great. I am glad that you sought out the help of multiple docs to come to this determination. Best of luck with the hearing, and please give my best to Eric.

[Fish]

Great news, and I hope the hearing goes well.

[Scott]

Super news, Debbie! I'm sure Eric will keep up the surveillance routine faithfully. We'll look forward to continuing good news as time marches on.

[discodolly]

We went for Eric's SSI hearing on 2-26-08, we were both sooo very nervous. Eric went in with his lawyer to speak with the judge and was in the room less than 7 minutes. When they came out, surprise, surprise, the judge actually gave her ruling right then and there. He has been approved!!!!! Now finally we know that all the Doctors that helped him and continue to help him will finally get paid. It has been a long hard battle. Hopefully, from here on out it will only be survelance and testosterone replacements.

[Mom]

See, you just can't ever give up! Great news.

[dadmo]

That's great news. Congratulations on not giving into the system.

[Fed]

Excellent news, Debbie! All the best to you and Eric!

[Fish]

This is fantastic news!

Congratulations!!!

[Karen]

Debbie,
WHOOO HOOOO!!!!! What a relief that must be. Happy sailing from here on out with the insurance and most importantly, the "all clears"!!

[Scott]

I'm so glad you got good news, Debbie. Congratulations!

[Already Bald]

I just read through this thread form the bottom up- and it's nothing but good news through and through! :)
Just what we needed!
Congrats, Dolly.

All Love Needs is You!