Results of biopsy in- Need help.

[a12curlyq]

Thanks Pam!

Thanks for the hugs and motherly advice, Pam.
I have considered seeing the counselor here at school since it is a free service to students. I'm just wondering when I'm going to be able to fit that in with everything else I have going on.
As for school, I'm really going to try to focus harder. I just got back a test today that I got 100% on, so I suppose I'm not doing too bad.

[Karen]

Would you all still recommend getting in contact with Dr. Einhorn?

-Tiffany

YES! And'd I'd get hold of his first set of slides and get them there as well. Will jump to your other thread to rant....

[DennyD]

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. His parents take whatever the doctor says to them as all they need to know and this is quite frustrating, I agree, and so does he. 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.

Hi,

We certainly undertand what you are going experiencing. Our son also had tc. He also had many mistakes made by Doctors, and like you, we had to take a crash course in what this disease is. It is a good thing that you are seeking help for him. It made a big difference for us, asking, learning and seeking the experiences of others. Your boyfriend is lucky to have someone like you in his corner.

I think the point Dennis was trying to make was was the first pathology right in regard to a pure seminoma ? He was not expecting you to know all the details. As we discovered, mistakes are made in pathology reports, and it would be his nature to ask if the original seminoma was correct as he see's mistakes made all the time.

I also believe what he said was " If this were OUR son " he wouldn't , and I wouldn't have accepted that he was cured by the I/O . We were told that to only find later that is was not true. Ct-scans are not perfect, as we also found out later.

I know how frustrating this all can be. I had no nails for months. I was a wreck, but once we found the right expert, things became easier for us.

It is only our hope that his parents will seek such an expert, which with this disease, is where one will find answers. I don't think anyone .

We know there is nothing fun about this disease, and we will pray for you all that the right answers come. The answers come from the experts.

We wish you the best,

Nan

[Karen]

Denny and Nan are correct that the two threads are confusing...so I merged them.....

[a12curlyq]

Thanks

Thanks for the prayers and clarification, Nan. I'm sorry of what your son had to go through. It is reasons like this that I am trying to convince him and his parents to seek an experts opinion. I realize that doctors are only humans and they make mistakes, too. I just want to make sure he's doing everything right. He told me that he's going to try and get me the path. reports for both cases, so hopefully then I will have more information.

Thanks Karen for merging the threads. I am sorry for the confusion. I was thinking that they should be merged after what Dennis said, but I had no idea to go about it.

So, if I were to convince them that they should send everything to the expert, then would it be possibly to have everything sent? Ct-scan results, x-rays, pathology reports, slides everything?

I'm feeling really helpless. I don't think I'm going to be able to get them to seek a second opinion. His Dad has expressed to both of us that he thinks it is silly to do so much research online.

Thank you again to everyone who has responded,
Tiffany

[dadmo]

Your local facility will know how to prepare everything. It can all be sent to a center of excellance for review. I understand people being skeptical about on-line research but they should certainly understand the value of a second opinion.

[mstlyn]

Hi Tiffany,

Mind if I ask what part of Michigan you are from? I am from Flint-

My sons original path was sent to U of M for second opinion too, and later, after he had chemo, he had RPLND at U of M.

I wish I could offer some advice concerning your boyfriend, but his case is unusual to me. I wouldn't dare touch this other then to say that the advice of an expert is always a good idea when it comes to TC.

Your boyfriends parents may be more in the know than you think, but it wouldn't be a bad idea to tell them about this forum. Are they open and responsive to concerns you bring to them?

It's very important for anyone, patient and caregivers to educate themselves about this disease. The more armed with information you, your boyfriend, and his parents are, the better off he will be.

Tammy

[a12curlyq]

Your boyfriends parents may be more in the know than you think, but it wouldn't be a bad idea to tell them about this forum. Are they open and responsive to concerns you bring to them?

My boyfriends parents are very intelligent people, and they care about their son a lot. I guess they just have complete faith in the decisions that the doctors are making. To be honest, I'm not sure how much they've researched on the topic, but today when my boyfriend told his dad that he was going to call the doctor back to get some more specifics/ spellings, so that he could look stuff up on the internet his dad expressed that he didn't see a need for him to do the extra researching. I'm not sure why he doesn't see a need for it. Maybe they are afraid that we will get misguided information?

I get along with his parents very well- they are great people. I usually don't go directly to them with my concerns. I don't feel it's my place, I guess. I just let my boyfriend know about the information I find, and if he thinks it is necessary he passes it along to his parents. As for his parents being responsive to suggestions, I believe that if my boyfriend expressed his wishes about anything they would go along with whatever he wants, but they would make their own feelings known.

At this point, I don't think my boyfriend finds it necessary to get a second opinion. He said that we would, "Wait and see what the report from U of M said." He said that if it was very different from the original report, then we would think about an experts opinion.

As much as I would love him to see an expert, I just have to respect the decision he makes. He is the one going through this, after all, and he already knows how I feel.

I believe someone told me that we should be in contact with the oncologist at this point. We haven't heard from any oncologist, yet. The results of the pathology report were given to us by the urologist. The urologist is also setting up the CT scan, I believe. Will we see the oncologist after that? Is this something to be concerned about?

Sorry for so many questions, but I sincerely appreciate all of the responses.

[Fed]

Tiffany,

Keep asking questions. That's what we're here for. Besides, how else will your boyfriend get the best treatment suited to his particular case?

The person in charge of your boyfriend's treatment should be a medical oncologist specializing in genitourinary oncology. He/she is like the quarterback of the operation. Depending on the treatment needs, the medical oncologist will call up a surgical urologist if surgery is needed, a radiation oncologist if radiation therapy is warranted, etc. There should be a good treatment team in place, but the med onc should be the top dog here. In some instances, a urologist takes charge, but at this point, the best bet is to have an oncologist man the ship.

Now, you will probably agree with me that it is crucial your boyfriend gets the best treatment available. To that end, you should keep asking questions, and make sure that he is convinced that the treatment plan is sound and that you are using reliable resources. Contacting Einhorn, for example, is always a great idea when cases are not clear-cut. He is very approachable and is the guru of TC treatment. It's always good to have the backing of an expert, if anything, for peace of mind.

We're here to help, and if at some point your boyfriend feels comfortable in doing this, he should check this site out. There is a wealth of experience within the members of the forum, and the family here is more than willing to help out .

[Karen]

After my husbands I/O and path report that was the end of the interactions we had with his urologist...whom we liked a lot. We liked his oncologist and raditaion oncologist too..but we STILL sent everything to Sloan for a second opinion and went there for a consult.

Your BF is a young guy, and has a lot of living ahead of him. It's really important to get this right the first time. There's nothing lost by a second opinion from an expert. but much CAN be lost if there is a mistake now. Guys here have had some very serious mistakes made that have cost them a lot. TC is relatively rare and the opinion of an expert takes not much effort and a few hundred bucks....but is priceless in my humble opinion.

Your boyfriend is blessed to have you , you sound like a wonderful person, and I hope his folks understand how sincere your caring is. Maybe you should show your boyfriend to this thread?

[dadmo]

My sons case was turned over to an oncologist right after the I/O. Our onclologist was so wonderful that he was happy to give us contact information for a second opinion at Sloan.

[a12curlyq]

I shared this thread with my boyfriend as soon as I started it. I wanted to make sure that he was comfortable about everything that I was sharing about him. He, too, appreciates all of the information that is being shared by everyone here.

In fact, he (alone) has decided to share this forum with his parents and wants to encourage them to look around.

I think that's excellent news.

Thanks again,
Tiffany

[mstlyn]

At this point, I don't think my boyfriend finds it necessary to get a second opinion. He said that we would, "Wait and see what the report from U of M said." He said that if it was very different from the original report, then we would think about an experts opinion.

As much as I would love him to see an expert, I just have to respect the decision he makes. He is the one going through this, after all, and he already knows how I feel.

Well yes I understand you are still waiting for the path report from U of M. Your boyfriends doctors may have a decent amount of experience treating TC, too.

Even when an expert opinion is needed, it's not easy for everyone to hop a plane and go out of state to see one of the experts. But if the time comes that expert opinion should be needed, his own doctor can consult with an expert, OR your boyfriend can email or call an expert.

Ever since my son had a relapse we have been taking direction from Dr. Einhorn in Indiana, completely through email.

It's good that you are looking around for your boyfriend. I would have been completely clueless about A LOT, had it not been for finding this forum, and the TCRC pages.

Hopefully your boyfriend will need minimal treatment and you two can put this behind you and get busy with your lives.
Let us know

[DennyD]

Tiffany,


The person in charge of your boyfriend's treatment should be a medical oncologist specializing in genitourinary oncology. He/she is like the quarterback of the operation. Depending on the treatment needs, the medical oncologist will call up a surgical urologist if surgery is needed, a radiation oncologist if radiation therapy is warranted, etc. There should be a good treatment team in place, but the med onc should be the top dog here. In some instances, a urologist takes charge, but at this point, the best bet is to have an oncologist man the ship.

Now, you will probably agree with me that it is crucial your boyfriend gets the best treatment available. To that end, you should keep asking questions, and make sure that he is convinced that the treatment plan is sound and that you are using reliable resources. Contacting Einhorn, for example, is always a great idea when cases are not clear-cut. He is very approachable and is the guru of TC treatment. It's always good to have the backing of an expert, if anything, for peace of mind.

).

Tiffany,

We found it very valuable to print the list of questions from the Testicular Cancer Resource Cancer Resource Center " questions to ask your Doctor". They were and are an excellent guide to what a patient needs to know.

Perhaps that would be something that might help begin a discussion with your BF and his parents.

Your taking the time to search and learn about options show how much you care. He is a very lucky young man have have you on his team.

A good, communicative TEAM effort is often the difference in treating this disease.

We will continue to keep you in our prayers,.

Nan

[a12curlyq]

Rplnd?

Thanks for the advice and prayers, Nan. I'll take a look at those questions.

I have heard a lot on this site and others about Rplnd, but I don't know much about it. Could any of you explain this to me a little?

I know this is a pretty major surgery. How do you decide if this is needed?