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[usnw0911]

So I guess I will start with our story. So my husband back on June 19th was is horrible pain so the next day he went to the ER. After being there all day, with blood work and CT scans and ultrasound they referred him to the urologist. That appointment was the next day. The doctor was worried about cancer because of the look of the scans and his blood work. That Monday on the 26th my husband had his orchiectomy. About a week and half later when he had his check up appointment we got the news that it was in fact cancer. They ran another CT scan and more blood test and those all showed improved results. This past week we just meet with the oncologist and he has stated that the mass was a non-seminoma germ cell. It is 80% Embryonal 20% Teratoma. As it stands right now he is at a 50% chance of a relapse. He is set to have a PET scan on the 6th and after that another appointment with both doctors. Once they decided his is fully healed from the surgery the oncologist wants to do two rounds of the BEP combination of chemo. They also have not ruled out doing the lymph node surgery as of yet. So that is all at the moment. It has been a crazy month and half for us. So far the worse we have had is him being tired and not being able to pick up things after the surgery has confused our 3 year old. I joined here because I just want to be able to ask question and have advice from those who have gone through this. We are already getting random medical advice from well meaning family members, but most of them really don't know or the couple that have gone through cancer, it has been a totally different form. Anyways, thanks for reading. Its just nice to be able to type this out sometimes.

Marion

[RJKD]

Sorry to welcome you. I have a few concerns.
1) Why are they doing a PET scan? This is likely a waste of time, money, resources. Just exposing him to unnecessary radiation.
2) 2 x BEP is NOT a recommended treatment for your husband's situation. It sounds like he is either stage 1a or 1b at this moment. No expert would recommend 2 x BEP at this time.

I recommend you receive treatment at a reputable cancer center near you.

[usnw0911]

Hello, thanks for your reply. I believe the PET scan is being done to better make a decision on having the lymph node surgery or not, plus to be 100% there is no spread. As far as cost that doesn't affect us because my husband is active duty military.
For your second question, we are at the main cancer center in East Mississippi and the oncologist has been in the field for over 40 years. He said that my husband is stage one, and has a poor prognosis. For that reason he said he wants to do two BEP chemo sessions. He is first waiting on the PET scan because if it shows anything he said he might have to change up the treatment plan but from the information from the biopsy this is the treatment he wants to go with.

[RJKD]

Everything that your doctor is doing is incorrect. PET scan is not required. If your husband is stage 1, he is good prognosis. If he is stage 1a, he is LOW risk, if stage 1b, he is HIGH risk. Risk refers to relapse rate. 2 x BEP is the incorrect treatment. 1 x BEP is the maximum for your husband.

Your doctor is wrong unfortunately.

[OneBallLeft]

Yes please ask for a second opinion. I have never heard of 2xbep for any treatment plans.

[eodtech2001]

He may be doing oncology for 40yrs but that doesnt mean TC. You can go and sign up for a free account for nccn guide lines and it is a flow chart that is very easy to read for tc treatment. The standard course is either 1x bep depending on type and stage or 3 x bep again depending on type and stage. In some cases they will forgoe the B in bep and do 4 x EP but thst is usually for people who need to spare the effects of the B for what ever professional reason or medical reason.
You can also send dr Einhorn an email and explain what type, blood work and results. If he says 3 bep then that is like read script from the good book.
Dont take your doctors word for it or ours instead look up the nccn guidelines and reach out to Dr Einhorn himself. We would not be alive today if it was not for him. He is the god father for testicular cancer.
Or simply reach out to a tc center of excellence and ask for a 2nd 3rd or even a 4th opinion.
We are not shooting your doctor we are simply saying that it doesnt sound right.

[Louie C-Silva]

Everything that your doctor is doing is incorrect. PET scan is not required. If your husband is stage 1, he is good prognosis. If he is stage 1a, he is LOW risk, if stage 1b, he is HIGH risk. Risk refers to relapse rate. 2 x BEP is the incorrect treatment. 1 x BEP is the maximum for your husband.

Your doctor is wrong unfortunately.

RJKD,

Sorry to jump onto this post, but I am still thing to educate myself as well.

Could you happen to explain to me or provide a piece of literature of why 1a is low risk while 1b is high risk? And when you say risk, are you saying risk of recurrence?


Grazie,

[RJKD]

RJKD,

Sorry to jump onto this post, but I am still thing to educate myself as well.

Could you happen to explain to me or provide a piece of literature of why 1a is low risk while 1b is high risk? And when you say risk, are you saying risk of recurrence?


Grazie,

Yes, it refers to risk of recurrence. Stage 1a nonseminoma is approx 15% relapse risk. Stage 1b nonseminoma is approx 50%. 1b refers to the fact that LVI is present.

[Mike]

For stage I nonseminoma, the experts I have spoken to agree that BEPx1 is more appropriate than BEPx2 (which was more of the older standard). If your doctor hasn't seen it, then here is a bit of info for him to look at from ASCO's GU Cancer Symposium in 2017 http://www.ascopost.com/issues/april...icular-cancer/

Likewise, I am nor aware of any role PET plays in the staging of nonseminoma, especially after he has had two staging CT scans? Seems a bit unusual to me.

Also, with being active duty, I would investigate which option may be better or worse for his career. For example, if active surveillance with frequent needs for CT scanner access would render him as not fit for deployment and possibly lead to a medical retirement. Whereas an RPLND, with only 1 CT needed at 3-4 months post-op, while he is still acutely recovering, may allow him to maintain active status. I am no expert but understand the need for CT could affect things and that each case is reviewed but perhaps there is someone you could speak with?

Lastly, I would not let your doctor's experience intimidate you at all as I am guessing that hthe doctor may not have that much experience in particular to TC and in this article from experts from around the world you can see the importance of such experience http://ascopubs.org/doi/pdf/10.1200/JCO.2017.73.4723 our friends at the TCRC keep a nice expert list as well at: http://thetcrc.org/experts.html

Mike

[usnw0911]

Hello, thank you all for responding. I am trying to process all the information and also make sure I posted the correct information when I first posted. My husband is scheduled to receive a PET scan. Again I believe this is in part to make a decision about having the RPLND. As far as options for his Navy career it really doesn't matter much at this moment. He is on shore duty and he works in supply so any or all treatment that he heals from is fine. The navy gives you time to heal and only if you start under preforming in your job do they worry about it. My husband wants to do some chemo, because from what I have now learned he is 1b because he is at a 50% risk. He is a little more apprehensive of the surgery because he just doesn't want to take the time for recovery afterwards. And when it comes to surveillance, that also shouldn't affect him to much. If he is on a ship there is always port calls with hospitals and deployments are always different lengths. Again the main thing the Navy is worried about is if you can do your job, if you can they really don't care about much else. As for the treatment plan I was able to look up on his patient portal. Here is what is in place right now, although the doctor did say that the mg measurement would change because that would be based on his weight when they start.
Patient Plan Chemotherapy would consist of: Bleomycin 30 units IV on days 1, 8 and 15 Etoposide 100 mg/m² IV days 1 through 5 Cis-platinum 20 mg/m² IV days 1 through 5 This combination is repeated twice, 21 days apart.
If that isn't BEPx2 then I'm sorry for the confusion. I know he said two rounds of chemo and then this is what he gave us, along with a bunch of information on each of the drugs.
I'm not sure we have much of an option locally as a second opinion. There is really only the one cancer center, and TriCare has already approved them, and they don't usually approve others without reason. Anyways thanks for listening and giving your thoughts. I'm not sure where we go from here, because at the moment my husband seems all on board with what the doctor wants, but I just want what is best for him, Anyways thanks again, take care

Marion

[eodtech2001]

If need be i can help you with dealing with the tricare, military, line of duty report etc... Where are you guys stationed? Reason i ask is because i was active duty army when i first got TC, so you have alot more options than 1 place that tri-care approved. His TC is considered service related and as such its on DoD dime and not a dependent tri-care issue.
I can tell you that when he retires or leaves service 100% rating thru the VA

[Mike]

That is god to hear that the diagnosis is handled differently in the Navy. My friend was an Air Force Reserve Medic and they medically retired him because of stage I seminoma even after he got a dose of carboplatin. I've also spoken to a urological oncologist with the Army that does their reviews so it sounds like each branch must deal with it differently.

As far as a second opinion, you could just say, "Hey Doc, I have been doing some reading and and not sure why he needs the PET scan or why he would need BEPx2 and not just X1? Could you explain?" Then after the explanation you can say, "That sounds great but could you call up to Indiana University and confirm with then that this is the best option plan? Their contact information is at for physician advice is: (317) 944-0920 and Dr. Einhorn's direct email is [email protected]"

If my physician treated testicular cancer and was not aware of who Dr. Einhorn is or value his opinion, then I would honestly find a new physician that does.

If you are in a remote area and the physician is uncooperative then, I can help you formulate an email to Dr. Einhorn. If you have your husband's CT results (just the report) then that would be helpful. My email is mike[at]tc-cancer.com if you want me to help with it one-on-one.

Mike

[metroman]

okay first off all sorry to welcome you here.
But as per the information given by you vs. all the tc survivors here there has been a been a clear misinterpretation of info.

the risk your doc is talking about is "without" chemo being given and on surveillance.

And if chemo is being given as of now would be based on stage 1b only and as advujant chemo. Which will reduce the risk of spread.

all non-seminomas stage 1-3a are good risk with cure rates of >90% (except stage 1s with elevated tumor markers, still with cure rates >83%).

So first thing you need to know is "it will be cured".

Coming to "Half-knowledge is dangerous". Please post the markers(pre and post op).

PET might be essential because EC is known bypass lymph nodes and cause mets through blood, mine was the same case were it got caught in the lung without any involvement in lymph nodes.Hence, full PET can give you edge because sometimes benign lungs nodes appear mysteriously and disappear.

With that being said, you need to have second option because "If I was given time to cut down a tree, I would spend half of it to sharp my axe- Abe Lincoln".
Before starting the battle, you need to know all the aspects and outcomes. Chemo has its perks and its pitfalls so better to know before you proceed.

Wishing you all the luck.

[RJKD]

okay first off all sorry to welcome you here.
But as per the information given by you vs. all the tc survivors here there has been a been a clear misinterpretation of info.

the risk your doc is talking about is "without" chemo being given and on surveillance.

And if chemo is being given as of now would be based on stage 1b only and as advujant chemo. Which will reduce the risk of spread.

all non-seminomas stage 1-3a are good risk with cure rates of >90% (except stage 1s with elevated tumor markers, still with cure rates >83%).

So first thing you need to know is "it will be cured".

Coming to "Half-knowledge is dangerous". Please post the markers(pre and post op).

PET might be essential because EC is known bypass lymph nodes and cause mets through blood, mine was the same case were it got caught in the lung without any involvement in lymph nodes.Hence, full PET can give you edge because sometimes benign lungs nodes appear mysteriously and disappear.

With that being said, you need to have second option because "If I was given time to cut down a tree, I would spend half of it to sharp my axe- Abe Lincoln".
Before starting the battle, you need to know all the aspects and outcomes. Chemo has its perks and its pitfalls so better to know before you proceed.

Wishing you all the luck.

I have to disagree with some of the above. PET scan is not required. A simple CT scan will determine if there are mets to the lung. Regarding stage 1s being a >83% cure rate. I've never seen that. It is likely higher.

I agree that the pre and post orchiectomy markers should be posted.

[usnw0911]

I don't know what his post marker are because they were at the ER and I haven't been able to get the records. But I do know his post markers all went down according to the urologist. I do have some lab work which is from a week and half after surgery, but I know without the before its not full information.
AFP was 2.3
LDH was 158
HCG was <1.0

I do have the biopsy report. I don't under really much of anything. At the first it happened so fast, and I wasn't at the ER with him because we have a 3 year old I had to watch caused they don't do well sitting in as ER all day. And I know I should have been better but we really were in shock until after the surgery happened. I can try and call the urologist and see if they can tell me the before lab, other than that it would be my husband would have to get the results. But here is what was on the biopsy results, if it helps any.

Malignant mixed germ cell tumor 3.3cm consisting of embryonal carcinoma %80 and teratoma %20. The tumor is organ confined. Spermatic cord margin is negative for tumor. No lymphovascular invasion identified. Background germ cell, cell neoplasia in situ identified. See note
Note - Submitted immunohistochemical stains demostrate the following results. The embryonal component is positive for PLAP and CD30, and LMWCK(focal). The teratoma is positive for EMA and LMWCK, and the germ cell neoplasia in situ is positive for PLAP, and CD117. Inhibin. HCG and GFAP stains are non-contributory