?!?

[AmandaT]

I just joined, My husband os 8 months was diagnosed a little over a month ago, had his orchiectomy 1/21. We thought that after it was removed we'd still have routine survelance, but that would be it, then we got the pathology report back, and that was a slap in the face. It is 100% embryonal carcinoma, there was vascular invasion and it started up the spermal cord. We got the ct scan and the first dr. said that it wasn't in the lymph nodes, so we had a couple weeks of relief, but then yesterday we saw a surgeon /specialist in portland who looked at the ct scan and said that it was in the lymph nodes and that it is stage 2a-2b. HE was referred to another dr. who we'll see next week. I feel like we are living from one dr app to the next. I know he will start chemo soon, but don't know any details about when because it seems like we keep having to wait until the next appointment with the next dr.

[Mrs Moggi]

Hi -

I am very new too - my husband had I/O on January 31. His was pretty straightforward but that seems to be the exception really. Even then, nothing has been black and white. Just when we think we have it figured out something new comes into the picture. You'll find a lot of answers and support here, you're not alone.

I'll keep you in my thoughts,

Jen

[Scott]

Welcome, Amanda. How about blood test results? Does your husband have elevated tumor markers? Hang in there, and keep moving forward.

[Les' Mom]

Amanda,

I am so sorry that you are going through this, but I am so glad they caught your husband's TC and that you have found this site. The guys here who have been through this can help you understand medical stuff and help you know what to expect.

I understand how scared your are, not knowing from one dr appoitment to the next what is going to happen. Try to focus on the positive, take notes about what the doctor says, and love your husband. You can make it through this. THe people here will support and love you!!

Are you in Portland, OR or Portland, ME?? There are several here from the east coast. My hubby was raised in Maine. If you are in Maine you are close to IU and Dr. Einhorn.

Love,
Pam

[dadmo]

Amanda:
Chemo usually starts about 6 weeks after the testicle is removed. If he does get chemo it will most likely br it 4 cycles of EP or 3 cycles BEP. Either one should be able to cure your husband.
When you get a chance please post your husbands path report and blood test results.
Have you guys thought about sperm banking?

[mk6439]

Hi Amanda, I was in your shoes about two years ago, except the CT showed mets in my husband's lung instead of lymph nodes. I remember it was like a punch in the stomach when we heard that and we were so scared. When we finally got to the right doctor, he told us my husband should "fully expect to be cured". Chemo was tough for him, but my husband has been cancer free for 18 months now. Hang in there, I know it's a tough time until you have a plan.

One more thing -- I second dadmo's suggestion to consider sperm banking. I know it might seem like the last thing you need to worry about now, but we now have a 2 month old son thanks to the frozen sperm.

[Fish]

Welcome Amanda,

Sorry things were more advanced than you were led to believe, but hopefully all is on track now. Getting your info all together and sending it to a center of TC excellence for a second opinion/consultation is a good idea. Please keep us updated and let us know if you need anything.

[AmandaT]

We're near Portland Oregon, not Maine, on thursday he has an appointment with Dr. Nicols (not sure if that's spelled right) and I hope we'll have more info then, but the urologist at OHSU said he'd probably get 3 BEP, I don't know if we've even gotten any papers that say everything in the reports, I'll ask my husband. We are already looking into banking, I suggested we go ahead and try now, but Aaron doesn't think that's a good idea (we're both college students and had planned to have a baby after we were both graduated), I think its just too much unknown for him, even though all the doctors have said that "its still a really good prognosis"

[Scott]

Dr. Craig Nichols is a testicular cancer expert. You're in excellent hands.

[moonlight]

HI
I ma new to this as well, my husband was diagnosed on the 14th jan with seminoma insode the testicle and embryoma on the out side of the same teste. He had it removed and now is in hie first week of BEP. It is really hard to see him get progressively tireder and lethargic so quickly. I don't know what to say or do ar how I can help. It is frustrateing as we have no family here and his dad just happens to be out from the uk at this time which is good. We have a young daughter who I think knows that her daddy is not well although she is only 16 month. it is heart breaking
They didn't find any cancr cell any where else on the ct scan whic was fab but still I guess I just need to hear how others are coping and get some tips.. :confused:

[dadmo]

Moonlight:
I'm sorry that you and your husband have to go through this. Even though this type of cancer has a high cure rate it's still really scarry.
The biggest thing you can do for your husband is to let him know that you're there. Most guy's won't want to talk about what's happening but are happy for the comfort of a loving wife. The few tips I have a re to make sure he drinks plenty of fluids, the chemo is very rough on the kidneys so you want to keep flushing that stuff out, also make sure he is taking his anti neusea pills don't let him wait until he fells sick take them as perscribed even if he's feeling good. His food intake is important, he needs calories, protien and fluids. The source doesn't matter son if he has a favorite junk food let him enjoy it. Our family ate ice cream every day (my waistline still carries some proof :p ).
There is one big thing that most care givers forget to do and it's critical, make sure you take care of yourself.
We're here for you and I'm sure you have lot's of question so just ask.

[moonlight]

thanks for your support. Martin came home from trestment today and each day he looks more and more washed out and is so quiet now hardly talks i really don't see him as my father in law takes him up to the hospital as it has been a night mare iwth our 16 month old. He won't take his anti nausea tablets, I have said to take them but he won't. They said at the hospital that there is not any need to feel sick. I just keep trying and getting him to eat and drink. So far so good on that side of things.

I have hd a sore throat this week which has made me very tired as well as the little one not sleeping.

will keep trying with the tablets. :)

[dadmo]

Well you certainly can't force him to take the anti-nausea meds. We've had other guys do the same thing. As long as he can keep his keep his meals down not taking the meds really won't matter.

[moonlight]

hi all
I have had a bit of progress with Hubbie and the meds, I just give them to him to help and he doesn't argue thinkh is so knackered.
Is it normal to be so knackered so soon after starting treatment...(Just finsihed first week cycle one BEP)He doesn't talk much any more and just sleeps. he is keeping his food down from what i can see well what he tells me.
ANy way I am shattered as well.

[moonlight]

HI Amanda
we have banked sperm although we are not sure if we will have another baby (we have one already). it is a good ides to do it because the future is an unknown.

[Scott]

...I am shattered as well.So much said in so few words. Hang in there, moonlight, you'll come out of the tunnel into the light soon.

[moonlight]

hi
Hubbie up this am and even vacumned the floor!!! Guess he feeling a bit better. Not counting my chickens though, yesterday i was down and ffeeling sorry for myself as well as being shattered. How are you doing Amanada?

[Already Bald]

He will be washing dishes before you know it.
Take care of him and the baby- and take time to take care of you too.
I'm glad he's getting treated- it sounds like he will be fine.
All the best,

[Russell's Mom]

Sorry that you have to face the biggness of it all. Many times, as a female, it seemed so similar to pregnancy. Now I know the humor from some of this group may start rolling off of that comment....but the emotions turning corners on a dime, odd food situations and the nausea on a whim all created a similar picture. For me, over time, the understanding helped me to realize that it changes. Like a foriegn lanuage, pretty soon you start understanding and speaking, communicating and interacting. I wish there was a magic wand I could wave, but I know the work helps make us stronger in the end! Hugs, Sharon

[ben1976]

Just joined the forum. Wasn't sure where to place my post. Here is the story:

My brother is going through Chemo therapy. He is a grad student in Philly.

Jan 18: Initial school health center visit, abdominal pain, inconclusive. Was told to take more fibers and check back in a week.
Jan 24: Second visit to health center. Enlarged testicle with more abdominal pain. Was referred to ER.
Jan 24: ER did ultrasound and blood test. Possibly TC. Was referred to Urologist. That is when I heard the news. didn't believe it.
Jan 25: first Urologist appointment, Orchiectomy the same day.
Feb 12: Urologist appointment. reviewed the pathology results. Confirmed cancer 100% embryonal, CT scan was scheduled
Feb 12: Urologist appointment, CT scan doesn't show anything in lymph nodes. Tumor markers low after the surgery. Stage 1B. Was told to do a RPLND to make sure and then done... Haay... all happy that we caught it quick.
Mar 3: Urologist appointment, Was told he doesn't need RPLND, needs to do Chemo since in Europe that's what they do!! Kind of fishy.
Mar 5: Second opinion TC excellence Oncologist: It is stage II if not III. Whoever read the scan pics made some serious misread! the lymph nodes are clearly affected. CT Scan from lungs was scheduled.
Mar 6: Third opinion from Sloan Kattering, confirmed stage IIB requires Chemo. Too big in lymph nodes to do RPLND.
Mar 17: first day of Chemo. Scheduled for 4xEP.

And here are my questions:

1. I am really concerned about the first set of cat-scan misread. What if we wouldn't seek second opinion? I just don't want this happens to somebody else. You guys have any idea how to approach this?

2. Does 4xEP mean 12 weeks of Chemo?

3. Were any of you guys who have been through this been able to work in between the Chemo cycles? If yes, how much? How did you manage your work relashionship with your employer?

4. I was in Philly just last week (I live in San Diego CA). To me, it looks like medically everything is in good hands. Also, financially we have not been hit by any surprise yet. Even though the grad student health insurance doesn't have max-out-of-pocket and has a low 50K lifetime cap, but we will deal with that when we get the bills. The biggest problem of mine is that my brother doesn't seem to be on top of the stuff. The fact that I live in San Diego and cannot really travel back and forth doesnt help either. Can you guys share some of the activities that you did or you had your loved ones do during this difficult time please? I just want him to be distracted from the sickness druing this time, watch a TV series, read a book, maybe a recreational class, whatever that makes him smile. He seems soo gloomy sometimes and doesnt talk much at all.

[Margaret]

Hi there and welcome. I am so sorry to hear about your brother.

I will try and answer some of your questions:

yes, it is very concerning about the doctors mis-reading his scans but keep in mind that TC is rare and some doctors never see a case of it. That is why it is always important when in doubt to get a second opinion. Thank God he is in good hands now.

4 rounds of chemo is 1 full week on (which means 5 days a week from 5 to 7 hoursa day) and then 2 weeks "off". If he were getting BEP chemo, then he would get Bleo on the "off" weeks...one day during those off weeks. 12 weeks is correct in total and 4 weeks of chemo.

My husband was able to work on his "off" weeks, except for the day that he got the bleo chemo. He was more tired and required naps. he needs to talk with his manager and let them know the situation. My husband had a position that he could do remote so he was actually able to work on his lap top while he got chemo.

For distractions my husband took a portable TV player with head phones and watched movies while getting chemo and read books. But during the 3rd and 4th cycles, he slept a lot too.

Let us know what we can do to help and if your brother would like to speak with another guy who has been through it, my husband (or others here) will be happy to call him.

M.

[Lori]

Sorry you and your brother have to go through this. My husband would read magazines, watch tv and he drew a lot. He would create scenarios visualizing the chemo destroying the cancer. This visualization may not work for everyone but it definitely did for him. Plus now we have a lot of very unique pictures!

Also, please remind him to drink lots of water. Even when he doesn't want to, he needs to drink!

Good luck and let us know if you need anything!

[dadmo]

Ben:
I'm sory that your brother got off to such a bad start but it appears as if he's on track to be cured. Typically when they see spread they will do chemo first and then if the nodes are still enlarged they will remove them as part of the final clean up. With no teratoma noted your brother may get lucky and be able to avoid the surgery.
My son was able to do desk work between rounds of chemo but his attention span wasn't that great. He just couldn't concentrate. During the weeks on chemo he slept and watched movies.

[ben1976]

Ben:
I'm sory that your brother ...

Thanks Lori, dadmo, and Margaret. This was very helpful. I will keep in touch as I might need your help. This is great place with lots of info. I spent the whole day going through the posts yesterday.

dadmo, you mentioned in case of no teratoma, there is a high chance the surgery is not needed, which is great. I need to talk to his doctor to see if that is the case.

Lori, this might be a dump question... how much water is really enough? Can that be quantified somehow? I noticed that he follows the instructions better when he has a well-defined goal.

Appreciate it,
Ben

[uatah]

And here are my questions:
1. I am really concerned about the first set of cat-scan misread. What if we wouldn't seek second opinion? I just don't want this happens to somebody else. You guys have any idea how to approach this?


I would recommend contacting the facility where the original CT was read. Because tc is rare, the radiologist may not be as familiar with it as some in larger facilities. In healthcare there's a term, "high risk, low volume". What this means is that because it's not encountered frequently, there may be a greater chance for error. By contacting the Quality/Risk Management Department at the facility where the CT was done, you can ask them to look into it. This doesn't mean you're getting someone into "trouble". You're sharing an opportunity for improvement. How can they fix a problem if they don't know it exists? You may be providing this facility with a valuable learning experience and preventing it from happening to the next guy.

[Lori]

Ben, someone else on the forum might know medically what is recommended for water. My husband was always a big water drinker from his cross country days and really understand how it helped his body. So when he was going through high dose chemo he strove for 100 ounces a day. To the point where he would put a 16oz glass of water by the bed and wake hiimself up in the middle of the night to drink it. He never wanted to go too many hours without some water. Excessive? Maybe. But he managed the entire HDC program as an outpatient and I really think that fact that he drank so much water and walked at least 10 minutes a couple times a day really helped him. But again, I'm not a doc, so you may want to get an opinion from his doc.

Hope that helps.

[ben1976]

... least 10 minutes a couple times a day really helped him. But again, I'm not a doc, so you may want to get an opinion from his doc. Hope that helps.

Just wanted to drop a few lines... hope everybody is better than before. :-)

The bro will finish the third cycle tommorrow (out of 4xEP).

He is nauseated, some nights he sweats a lot, and one night his fever went up to 94. Doctor advised to take him to ER in case of 94.5. That was close.

Can't wait to see what the result would be after the forth cycle. So am guessing after the chemo, the doctor will schedule a CT-scan and wil take a blood sample to see the size of the lymph nodes and the blood markers. Right?

Today, he asked for the pharmacist to discuss the effectiveness of the nausea medicine. The doctor gave him another pill which I dont remember the name.

He is done with water, doesnt drink water that much. Replcaed it with coke. Nutritionist was fine with it.

So, I guess we just hope for the best... for everybody who goes through this pain.

[Scott]

So, I guess we just hope for the best...He deserves nothing less!

(I assume you meant a fever of 104°?)

The end of the tunnel is in sight. Hang in there!