Results of biopsy in- Need help.

[a12curlyq]

Hello, all.

I just posted a few days ago concerning my boyfriend. This is our second time around with testicular cancer. He is now 20 years old. He had his first I/O on the left side when he was 19. The biopsy showed that it was a stage 1 seminoma. He decided to do radiation therapy at that time as a percaution, and he did that for about 3weeks. He has been seeing the urologist and radiation oncologist regularly since then and has been getting chest x-rays and blood work done every few months.

Just a few weeks ago, he noticed a lump in his remaining testicle. This past Tuesday, after being given time to go to the sperm bank, he had his second I/O done. He is recovering very well from the surgery. Much better than last time, actually. He has had much more of an appetite this time around, and I think that helped his recovery a lot. Now we are just WAITING for the biopsy
results. Also, we're trying to deal with starting the testosterone replacement therapy.

I have been with him through both of his surgeries, and while neither one was easy to deal with I'm having a much harder time this time around. I guess I made the mistake of thinking that we were done with all of that. Now we're 19/20 years old and having to deal with stuff like testosterone therapy and wondering if we are ever going to have kids. We're also both in (different) Universities and trying to focus on our studies. I'm having such a hard time focusing on my studies right now, and I've been making lots of trips home to be with him through surgery and through his recovery, and my school work is starting to suffer because of this. I'm also having a pretty hard time relating to people right now. It's hard for me to live in the dorm and hear people outside laughing and being silly while I feel so sad and helpless right now.

I feel so weak compared to him. I try to stay strong for him, but I have a hard time because I am just very worried. I am a worrier by nature, which doesn't help anything. He is always so positive. I try to get him to talk to me about how he's feeling, and he always gets a huge smile on his face and tells me how he is doing just fine, and how he, "doesn't worry about things like I do." He really seems to be doing wonderfully in his recovery and with his spirits right now.

I'm just having such a hard time being away from him at a time like this, and I can't get my mind off of it. Especially since we are still waiting for the biopsy results. I just wish that those would come soon! It's just so hard not knowing. He had chest x-rays and a ct scan done about a month ago before he had the surgery (at the same time as the ultra sound) and those looked clear which eases my mind some.

Lately, I've been having bad feelings about his urologist, too, and wondering if he is going about things the right way. There's just been a few things that seem a little off to me after all of the research that I've done on the topic. I don't really have a say in this area, though, because I am just a girlfriend. A very serious girlfriend, but just a girlfriend. He is, THANK GOD, still covered by his parents insurance, so all of these kind of decisions are up to him and his parents. He does come to me for advice, though, which makes me feel much better. He says that he knows that we're going to be together for a very long time, and he knows that his going through this is also affecting me. He tries with all of his might to keep me in the loop, and I love him for that, but I just wish I could be a bit more involved in everything. I think I feel the need to be so involved sometimes because I just feel so helpless. I just keep wishing there was something I could do to make all of this go away, but I just can't. All I can do is give extra kisses and hugs, and tell him how amazing I think he is and how proud of him I am and just try to comfort him in any way possible.

I'm sorry this is so long, but I just needed to vent to people who I thought could understand some of the things that I'm going through right now.

-Tiffany

[kurt Hansen]

hi Tiffany

I feel so sorry for both of you, your are so young and have to deal with
so many problems.
I was 24 years old when I first had tc cancer and 44 when I had it second time so my situation is diffrent from yours but my girlfreind who is my wife
now, stayded together through all the problems and we have 2 kids together.
I can`t give you much advice but everything can work out just fine for you
and you can have a total normal life together, your boyfreind will be fine and
with hormone replacement he will be just like he use to be.
If I should give you just one adwice it would be just talk a lot to him and be patient.
I wish you both good luck

[a12curlyq]

Thanks Kurt.

Thanks Kurt,

It's good to hear from someone who has been through this twice and is doing so well. I know we might have a few bumps ahead of us as we try to get the testosterone therapy figured out, but I'm in this for the long haul. I will continue to talk to him, and I will remember to be patient with him as you advised, thank you.

Tiffany.

[Karen]

Tiffany,
Sorry for the belated welcome to the site. You have had to mature way beyond your years already and for that I am sorry, but you will gain strength from this as well.

I am concerned about the diagnosis of pure seminoma in such a young guy...not to say it can't happen but it is rarer. Can you post the path results from that I/O? With seminoma he will either have no markers or just HCG elevated...has that been the case?

My last concern is that RT for seminoma is generally 25 Gy over a course of 3 weeks ...you mentioned he had one week. Is that correct? Is he being treated by an oncologist or urologist...it should be an oncologits.

What part of the world are you in? Maybe we can steer him to a place where he will get the best care.

Hang in there Tiffany, and come he to vent whenever you need to. You're not alone in this.

[a12curlyq]

Concerned.

I have many of the same concerns as you do, Karen. I have just recently heard that seminomas are not common in young men. I never knew the details of the first pathology report. I was a new girlfriend then, and all that I was told was that it was a stage 1 seminoma. To be honest, I'm not sure if my boyfriend even knows more than that. Would his parents have a copy of the pathology report? I don't ever remember seeing anything like that.

You know, he may have had 3 weeks of radiation, but I cannot remember. Now that you mention it, I'm pretty sure he did. I will have to call and ask him when he gets back from class. All I remember is feeling so bad because it made him so sick to his stomach.

We are from Michigan. His surgery was done by a urologist, and he goes to regular check- ups with the urologist. Also, the urologist will be taking care of his testosterone replacement (although, I'm pushing for him to see an endocrinologist). He also has had regular appointments with his radiation oncologist. Although, we have not yet seen the radiation oncologist this time around. I'm assuming we'll talk to the oncologist after we find out the results of the biopsy.

I'm beginning to lose faith in his urologist. It is frustrating, too, because I feel like I have a lot resting on my shoulders. I think that he and his parents have a, "Well, the doctor is the expert" attitude.I'm more of the type to go online, research, research, research, e-mail, post on forums. etc. I'm more of the type to think that doctors are only human, and they make mistakes, too. I feel like I have the responsibility to go online and figure all of this out and research and double check everything. I know much more about testicular cancer than any 19 year old girl should know. (This is where my school work is starting to suffer. When I'm not with him, I cannot peel my eyes away from the computer screen researching TC.)

I began to lose faith in his urologist when my boyfriend found the second tumor, went in for the appointment was put on antibiotics and told it was an infection, but they would do an ultra sound just-in-case. Also, it bothers me that the urologist never came in to talk to him after surgery. The doctor only spoke with his parents. My boyfriend is an adult, and I believe he should have heard from the doctor directly, in addition to informing his parents. When he woke up from surgery he kept asking when the doctor would be in to talk to him, and we kept telling him that we thought the doctor had left. Also, we're still waiting for the urologist to start his testosterone therapy. He was told that he wouldn't have to start it for a month. Which, I found out will cause no physical harm to him, but he will be having to go through some unpleasant physical and emotional changes that could be avoided by being put on the testosterone.

I kind of feel like we should be seeking a second opinion on this pathology report, but I don't know how he should express that to his parents. He is covered under their insurance, and they are the ones paying for this, after all.


I would appreciate any advice about when/ if a second opinion is needed, and how we should go about getting that set up.

Thanks
Tiffany.

p.s. I hope we here the results of the biopsy soon. We're 8 days out of surgery now, and the waiting and wondering is really getting to me.

[Karen]

It's tough to go agianst the "Drs are infalliable" mentality....but they definately make mistakes. You boyfriend is over 18 and he can contact the doc and request copies of the path report, CT reports, X-ray reports and labs.

After the I/O his care and follow ups shoud be with the oncologist. You should say buh-bye to the urologist. I am sending you to a site with a list of experts. You may want to gather all the paperwork and e-mail Dr Einhorn at Indiana since he has a reputation here of being very responsive...as well as a kick ass expert in TC. http://tcrc.acor.org/experts.html

Good for you for being your boyfriend's advocate. We have many here in the same position as you and I hope they'll chime in as well. Please ask away with any questions you have....we may be able to save you some time on researching this and you can focus more on school. I too was glued to the computer when my husband was diagnosed. Our research library site here has a lot of recent articles you may find helpful as well.

[Margaret]

In my life, it has been the 'waiting' that has caused me the most heartache.

We are here for you.

Prayers!

[mrsdavid1969]

Hi Tiffany, you are dealing with this with such a mature attitude, your boyfriend is lucky to have you around. I understand your worries though, when Dave was originally diagnosed we just went along with things and I so regret that now. If we'd have pushed when Dave had his RPLND then he would have had more nodes removed (apparently I think it was half the average amount, because the surgeon was so sure there was no cancer present) then if we'd questioned afterwards as to why only 2 rounds BEP and not 3 then we may not be dealing with a reoccurence now.

Anyway we are and we have pushed and pushed for different opinions and this time I feel so much more confident, I would definitely agree with e-mailing Dr Einhorn, he always responds and he so knows his stuff.

I know it's difficult for you as you obviously don't want to offend his parents, but just sow seeds gently with your boyfriend and it may get through, you can at least get him to e-mail Einhorn.

As for you, the way I keep dealing with things at the moment is by making a list of things I want to achieve for Dave, get them done then say that's it for the day, I'm now going to go get on with school work, I know it's hard but you have to think of both your future's.

You'll get there and you're doing a fantastic job, Jox

[a12curlyq]

Results of biopsy in- Need help.

Here is the thread I started concerning what my boyfriend and I are going through: http://www.tc-cancer.com/forum/showthread.php?t=6758

We just got the results of his biopsy back.
This is what was found:
10% teratoma
80+% embryonal carcinoma
less than 10% yolk sac tumor
4.5 cm at the greatest dimension

The results are being sent to the University of Michigan for a second opinion per. the doctors request. Should we still think about contacting another expert?

A CT scan was done before the I/O and the lymph nodes showed no enlargement. He will be going in the morning of the 27th (my birthday) to get his second CT scan, and see if he needs to get a "retroperitenium."

He told me that "Odds are good that he will not have to have further treatment." Is this correct?

Please help me sort through all of this. I'm not really sure what it all means.
Thanks,
Tiffany

[a12curlyq]

Thank you.

Thank you to all of those that responded.

We just got the results of the biopsy, and I posted a new thread Here:
http://www.tc-cancer.com/forum/showt...4085#post54085

The doctor told us that he is sending the slides to the University of Michigan to be looked at again. Would you all still recommend getting in contact with Dr. Einhorn?

Much more information is in the other post,
Thank you all for the advice it's wonderful that there are people here to help us get through this and do things the right way.

-Tiffany

[Fed]

Hi Tiffany,

It never hurts to get a second opinion from an expert. Either way, this pathology is treated as non-seminoma.

If your boyfriend did not have any lymphovascular invasion, then chances are he will be placed on surveillance, which requires CT scans and bloodwork every 2 months. He is getting a CT scan to see if there is any retroperitoneal adenopathy (i.e. to see if there is enlargement of the retroperitoneal lymph nodes, which are located in the rear of the abdomen).

In the case of stage I non-seminoma (as this is the case), there's a 70% chance that the I/O alone has cured him, and that being the case, he will need no further treatment. It is important, however, that he sticks to his surveillance schedule to the T.

Hope this helps out.

[a12curlyq]

Thank you for your quick response Fed.
It means so much!
All of those words and numbers were not making a whole lot of sense.

I'm glad to see that there's such a high chance that the I/O has cured him! I am going to pray that is the case.

[DennyD]

Here is the thread I started concerning what my boyfriend and I are going through: http://www.tc-cancer.com/forum/showthread.php?t=6758

We just got the results of his biopsy back.
This is what was found:
10% teratoma
80+% embryonal carcinoma
less than 10% yolk sac tumor
4.5 cm at the greatest dimension

The results are being sent to the University of Michigan for a second opinion per. the doctors request. Should we still think about contacting another expert?

A CT scan was done before the I/O and the lymph nodes showed no enlargement. He will be going in the morning of the 27th (my birthday) to get his second CT scan, and see if he needs to get a "retroperitenium."

He told me that "Odds are good that he will not have to have further treatment." Is this correct?

Please help me sort through all of this. I'm not really sure what it all means.
Thanks,
Tiffany

These 2 threads are a little confusing with the links. Might be easier if you kept it in one thread.

Sorry for us to butt in again , but Nancy pointed this one out too, so I would like to add something.


Are they sure the first one at 19 was seminoma? I would think that pathology, especially now would be important. It certainly should be in his current medical records.

Second, I didn't see any mention of Tumor Markers. Is there any mention of them in the reports??

I am not sure that the answer for you would be to e-mail Dr Einhorn, as the information is confusing, and it would be unfair, and possibly dangerous to base any suggestions from this information as posted now. He needs to see these records.

I would highly suggest that who ever is directing his treatment , send ALL records of both cases to Dr Einhorn so that he can review them from the charts. So, to answer your question, yes, I would send complete records of both to Dr Einhorn. As soon as you possibly can. Be worth the drive down for sure...

I wouldn't accept as fact if this were my son that he was "cured" by the I/0


Dennis

[a12curlyq]

Re: Dennis

Dennis,
I am just his 19 year old girlfriend, and I have little say in what goes on with him. I can only offer my advice.

I don't know all of the particulars from the first pathology report. In fact, we were never given a copy of that. All that I was ever told was that it was a, "stage I seminoma." Yes, I double checked that he had a seminoma the first time,and, yes, he did have 3 weeks of radiation therapy.

What I have posted here about the current pathology report is all the information that we have been given. This is what the doctor relayed to his parents in a phone conversation. He ended up calling the doctor back, personally, to get the information that we have now. There's not much that I can do though except for offer my advice at this point.

I would not be the one talking to the doctor's about a second opinion, either. It would be between my boyfriend, his parents, and his doctor. We would, however, make sure that we sent them the proper information. Right now, they think this is unnecessary, and I'm trying to gather as much information as I can for them to support my suggestion that they seek an experts advice.

Please understand that I am just a 19 year old girl going through a lot right now. I'm sorry if what I have posted is unclear or confusing. Most of it is unclear and confusing to me. That is why I am posting to get advice about understanding things, and if we/his doctors are doing things the "correct" or "accepted" way.

To the point that you would not accept him as "cured." Fed explained that there is a 70% chance that he was cured by the I/O. We're still going to be doing CT scans to see what our next option is. He caught this early, and it is my understanding that this helps. It is also my understanding that many people in this circumstance choose the route of surveillance. I understand that it's hard to just accept that he has had cancer in his body and is "cured" by a simple procedure. I also wouldn't want him to have such a major surgery or go through chemo. without NEEDING it.

Once again, please understand that I am going through a lot right now, I'm very young, I don't have all of the information that I would like, and that is because I am just his 19 y.o girlfriend. His parents still provide for him financially, and he is still covered by their insurance as he is a full time college student. They are the ones who make the decisions, not me.

[Les' Mom]

Tiffany,

You are doing a great job. It is very confusing, but you are doing the right thing. Keep asking questions, keep loving him, and keep trusting your instincts.
The people here who have more experience than me can offer you a lot of support and explantation.
Now as a mom of a 22yo, you have to take care of yourself. Have you talked to a counsellor? It helped me alot to talk to someone. You also cant give up on your future (meaning school) Dont misunderstand me, when he needs you, you should be there. But try and keep your grades up at least this semester and then take off next semester if you need to.
Please dont be discouraged!

Hugs from a momma,
Pam