New to posting

[mercyriver]

But I have been reading this site and forum for the past

My husband was diagnosed with and had surgery for tumor in his right testicle on September 11th of this year. Yes ominous date but then again it is a day of hope as well.

We learned about 3 weeks ago that it is Embryonal Carcinoma, I am assuming 100%, the lab sheet had no other type listed on it, but the Urologist nor the Oncologist have never said it is 100% or Pure Embryonal Carcinoma.

All of his tumor markers were elevated prior to surgery and all but the AFP and come back down to normal after surgery. The AFP was retested Tuesday and was back down to normal as well.

His chest X-ray done on the 11th of September was normal as well.

His CT (which I don't have copy of the findings but I do have the CD with the images on them. Not that they mean anything to me.) Anyhow, as far as I remember what the Oncologist said, they found 4 enlarged lymph nodes that maybe possible tumors. The largest one being 13mm (1.3 cm) the rest I do believe were above 1cm. The oncologist told us that they may just be that big because my husband is such a large man (he is 6'2" and 230lbs). Or they may be enlarged because the incision from his orchiectimy was infected (it was infected 14th of September and aggressively treated with two types of antibiotics at the same time). He wanted to wait until he got this weeks blood tests back to 100% decide on what to do.

So this weeks labs are back and the only things that were abnormal was an elevated Red Blood Count and elevated Ba, which my husband said was under the White Blood Count Differential, so I am guessing it is Basophils. My husband "accidentally" threw the lab results paper away at work. So I won't see it for certain until I can get a copy for our records at home.

My husband has decided and most likely with the blessing of the oncologist, to do surveillance. I won't for certain until this evening when I hear what the Oncologist tells him today after he has reviewed the labs.

So that is most of our story.

I am a bit concerned about it being 100% Embryonal Carcinoma and just doing surveillance. But I am assuming that tumor markers, other blood tests, chest X-rays and CT's still will catch anything in time, if it comes back.

My husband keeps calling me a pessimist because I am telling him it could still come back. I see it as just trying to keep him aware of things.

Usually I am the hopeful optimistic and he the realist and pessimist. Funny how roles have reversed.

Hope to keep learning more from this great site and group of people. Thank you all for being so open with things, it makes it so much easier to find information and find some comfort.

B

[Apache]

Hi, I know it's extremely hard to decide how to proceed and there's no absolutely right answer. I would definitely see a second oncologist for a different opinion. I would also first get clarity on the pathology of the tumor.

His nodes may be genetically large. If it were me, I would repeat CT scan in 1-month and check markers. I was in a situation earlier this year where there is a suspect node which was big before chemo Rx and then got smaller right after Chemo Rx and then was apparently big again 4-months post later. I waited 1-month and repeated and it was slightly smaller. I have often inquired about infections causing lymph nodes to be big and can't seem to get a good answer. However, the consensus I have gotten is that infections should not drastically change the size of the node.

If the nodes continue to get bigger and the original tumor was 100% embryonal, I'd elect 3xBEP.

Hope that helps. My original tumor was a mixed bag so my perspective is very similar but just like each special person on this site -- a bit different.

[Kman99]

I am sorry you and your husband had to go through this on 9/11...and I hope you both are doing ok. From what you describe below it seems as though you are both doing reasonably welll, considering the circumstances. I agree completely with what Apache advises. I can't tell where his surgery was, but a second opinion, preferrably from a TC expert, would be a very wise decision. It would serve as added comfort that your husband will be ok.

If he does end up on surveillance....just make sure he commits to going to all of the regular tests. We're talking about microscopic disease, that can and has been missed by doctors. Because of this he can't miss any of the tests, plus you both will want an experienced radiologist, etc to be reviewing his results.

All the best and keep us updated on his situation.

[dadmo]

For what it's worth I agree with Apache & Kman, get that second opinion and don't ever, never, ever miss a scheduled appointment. Embryonal Carcinoma can be very quick growing and is one of the types of tc that can skip the lymph nodes and go directly to the lungs. Good luck and keep us posted. One more thing, if being a pessimist keeps you focused on a cure that's good.

[Scott]

When is the next CT scan planned? November?

[mercyriver]

Thank you all for your support and suggestions. My biggest obstacle is that my husband can be very hard headed. He's already said there is no need for a 2nd opinion. Even his parents are insisting on him getting a 2nd opinion as well and his comment to me was that “medicine and technology have changed since his dad was younger and he sees no need to get a second opinion, the oncologist seems to know what he is talking about”. Of course the oncologist right now is saying everything that my husband wants to hear. I've even tried talking to my husband about how Embryonal Carcinoma can make it a bit more complicated because it can have a higher reoccurrence rate and can spread via the blood stream and skip the lymph nodes all together. But that is when I get called pessimistic. He is 29 and has a very dominate personality. He wants to get an answer and be done with it.

In fact he called me earlier to ask for a phone number of something unrelated to anything medical. I asked him if he had spoken to his oncologist, he said "oh yeah, he said everything is fine". I started to ask him if he said anything about the elevated red blood cell count and the elevated basophils and he told me he had to take a phone call and would call me right back. That was over two hours ago.

His family and I both know he is stubborn and has a tendency to withhold information and keep it to himself. So we seem to have to pry it out of him at times. He also refuses to gather information about testicular cancer.

So I do have to say, at times I don't understand him at all. Nor do I have much influence on what he does. He pretty much decides on his own. He'll ask for my opinion, but if mine doesn't match his, he'll argue until I am blue in the face...I hate arguing with people, he loves it.

So I am trying to keep myself as informed as possible and make it to as many of his doctors appointments that I can so that I know what is going on and I do my best to express my opinions and ask questions at the Dr's appointments as well.

And Scott, to answer your question about the next CT, I am not certain, but I know the oncologist said with survellience they will do blood tests and chest X-rays once a month and CT every other month, for a year. And my husband did say on his phone call that the oncologist wants to schedual a chest x-ray for "next week...or some time this month". I have a feeling I am going to have to step up my assertiveness at times to make sure he is sticking to his survellience.

I'll keep you all up to date on everything I know.

I can see by previous posts that you all are a wealth of information and support.

Thank you again

B

[dadmo]

B:
It probably won't surprise you but most guys are stupid when it comes to their health. It really doesn't matter that your husband is stubborn the research needs to be done. My only suggestion is to tell him your getting his second opinion and that you need to do it for you. He will never tell you that he's thankful for your work on his bvehalf but believe me he will be. The worst that can happen is that you spend some time doing reseach and follow-ups that aren't needed. Wouldn't that be great. Women have a mothering instinct for a reason put it to good use.

[Scott]

If he sticks to the surveillance schedule is prepared for the possibility of chemotherapy, I think you'll be just fine.

[mercyriver]

Well it looks like the first of the surveillance appointments is going to be on October 30th, blood work, chext x-ray and a touch base appointment with the Oncologist.

Apparently the high basophils and the high red blood count didn't mean much.

As for obtaning a second opinion I am not even sure how to go about all of that on my own. Is there a way for another pathologist to look at the tumor? Do they save that stuff? I have no idea how that works and that would be where I would want to start with a second opinion.

Also dadmo....I hate mothering my husband, not because I don't care about him, but I always feel like I'm nagging when I turn to mothering him. Maybe that just means I need to change my mothering style so I am not constantly nagging our children. I'll have to think on that one!

Thank you again

B

[Kman99]

Is there a way for another pathologist to look at the tumor? Do they save that stuff?

Yes, absolutely (for both questions). The original pathologist does save the original tumor and it can be re-cut for second, third opinions. It will require your husbands agreement, but a portion of the original tumor, along with the original pathology report and all test reports (blood work, chest x-ray, etc) can be sent for a 2nd opinion. It would involve making calls, etc, but there are a number of expert TC centers in the US (not sure where you live). All are accessible for 2nd opinions.

http://tcrc.acor.org/experts.html

Stubborn husbands aren't rare. TC is very rare. Which is why a 2nd opinion is a very good idea. He should at least understand you just want the best diagnosis and care for him. As Scott says, as long as he keeps up w/ the surveillance schedule and understands chemo is the next step should anything recur, then he'll be fine.

[Apache]

pathology

in my case I actually contacted the pathology department at the hospital where I had the I/O and actually 'checked out' the specimens and took them to another hospital (university) where I asked that the students and the director of pathology to review them and confirm the original report. they actually let me view them under the microscope and took the time to explain everything to me, which was cool. in any case, they mentioned that any reputable hospital could be trusted with the path report.

so, I'm not sure if you have the original report but you probably can get that from one of the doctors since you are his spouse...in fact you probably, can ask them to prepare a copy of the medical history file and give it to you, provided you are on the "approved" list on the HIPAA privacy form as a person that can receive your husband's medical info. then you can decide if further action is necessary since you are certainly trying to get as much info as possible while trying to keep up a good relationship with your hubby.