Just diagnosed- any advice please

**mpalka6** · 07-15-12, 09:24 AM

I'm wife of 37 years old who just got diagnosed. We are very scared . My husbund is constantly looking for more symptoms. The pathology report says:
Tumor focality: unifocal
Tumor size: 2 ×1.5×1.3
Macroscopic extent of tumor: confined to testis
Type: mixed germ cell tumor composed of embryonal carcinoma 95% and seminoma classic type 5%
Margins: spermatic cord margin uninvolved by tumor
Other margins not applicable
microscopic tumor extension none identified
Lymph vascular invasion absent
Staging : pT1
Regional lymph nodes pNX
Number of lymph examined 0
Number of lymph examined no node submitted
Distant metastasis not applicable
Pre orchiectomy serum tumor markers within normal limits

Ct scan / x chest clear . He's having pain in lower rib. Do u think that maybe still related to cancer since his ct is clear

We don't understand much out of it. We are going to see oncologist on august 3th. Any advice on treatment? He's afraid the surgery will be the next step but he already had 5 surgery on his abdominal so we would like to avoid that. I would appreciate any comments or suggestions. Thank you for being here.
Monika

**Abram's** · 07-15-12, 12:00 PM

Me and your husbands prognosis are very similar, after my Ct scan i felt more relieved but I'm still scared. Testicular cancer has a 95% cure rate if caught early, even if caught at late stage it's still curable. From the looks of it, we may have both caught it early . I'm still waiting on my pet scan results, to figure out weather I need treatment or not and just be placed on surveillance. My oncologist what's me to still do a round or 2 of chemo but I'm still not sure if I should or not. Embroyal carcinoma is sensitive to chemo treatment, so I don't think your husband will need surgery, maybe if they detect semionmia in his body they may need to remove the infected lymph nodes but I'm not a doctor, can't say. How did your husband find out he had something wrong? Normally tc doesn't cause pain but luckily for me it did. I did feel a slight pressure in my lower right rib cage but no pain, for a while but I think it was just anxiety because my Ct scan was clear

**Davepet** · 07-15-12, 01:37 PM

Originally Posted by mpalka6

We don't understand much out of it. We are going to see oncologist on august 3th. Any advice on treatment?

Sounds like you caught it early, surveillance may be an option, a light chemo might be as well, I would not expect surgery as a primary treatment with that much EC.

With those results, chances are he's cured already.

Dave

**zesasmom** · 07-15-12, 02:31 PM

I certainly understand how scary this is for you. My son was diagnosed with tc cancer and had i/o about 4 weeks ago. I was terrified throughout the whole waiting process. My son was somewhat similar to your husband s stage Ia no lymphatic invasion clear ct. His tumor was nonseminoma. His oncologist recommended surveillance or rplnd if he could not commit to the monthly surveillance. We are forwarding records to er einhorn for appt and final recommendation but are grateful it was early as was your husband s and my understanding is there s a 70% chance that your husband and my son were cured with the i/o.

This forum is the right place to come for information and encouragement. I know how scary it all is and i wish you the very best.

Lori
Elis mom
50% yolk sac 35% embryonal 15% seminoma
afp 98.1 prior i/o
afp 10 and all other markers normal three weeks post i/o
Surveillance

**mpalka6** · 07-15-12, 04:36 PM

Thank you everyone so much for your answers. You gave us some hope with the treatment . We don't have any family here and little 5 years old so its quite devastated. My husband found mass in his left testicul and the next day we were at doc office. Before he found the mass his groin was swollen for while but nobody know why. How you contact Dr Einhorn ? Can I try make a appointment by myself or has to be through oncologist? Thanks. Best wishes everyone

**mpalka6** · 07-15-12, 04:53 PM

[QUOTE=Abram's;' I did feel a slight pressure in my lower right rib cage but no pain, for a while but I think it was just anxiety because my Ct sca].......
Did you ask oncologist what is it? Is your rib slightly bigger than others . My husband's feels the same pressure.Its weird since the ct scan clear.

**scozzie** · 07-15-12, 05:51 PM

We all understand how anxious you feel around the time of the initial diagnosis mainly because the victims and the family's of us have all been in exactly the same place as you are now. You just have to hang on in there, gather all the info you can get your hands on and look well to the future, as I am sure you know by now the cure rates for this s$&t disease are fantastic. Since I was diagnosed about 7 weeks ago I have developed more aches and pains than I have ever had in my life so I wouldn't worry to much about the rib pain he is feeling at the minute just deal with the obvious. In a few weeks time and a few more visits to the doctors office this will all be in your rear veiw and your family will all be back to its normal happy self. This forum will go long way to help his recovery, I have found it to be a never ending source of information but most of all comforting .

Hang in there

Colin

**mpalka6** · 07-15-12, 06:31 PM

You are so right about that. I'm myself dealing with endometriosis for ten years. I had many surgies as well infertility problems. I joined emdometriosis forum and these girls from forum literally save my life so the first thing I did when my husband got diagnosed I looked for you guys. Thank you so much for existing. Best wishes

**Abram's** · 07-17-12, 07:12 PM

Hey mp , sorry for the late reply but both my ribs are the same size but my doctor wasn't worried about it, I felt it for over a month, then it went a way. I don't know if I felt it because of the o/I, for some strange reason or it was all in my head

**mpalka6** · 07-18-12, 01:45 PM

Good for you. Thanks I quess we will have to ask the oncologist about that. Just not to ignore anything

**mpalka6** · 07-26-12, 09:29 PM

We saw oncologist today. He recommended two rounds of BEP or surveillance. I asked him about the one round but he thinks two will be better in his case. He said with 95% embryonal carcinoma and 5% seminona my husband is in 50% risk to relapse on surveillance. We did new blood test and markers and we spouse to wait another two months for Ct scan. Is that right? First year every four months for non seminomas? Thank you

**sammac84** · 07-26-12, 10:17 PM

Are you still planning to go see Dr. Einhorn? At both decision points in my treatment (RPLND vs. Chemo vs. Surveillance, and then again Chemo vs. Surveillance) I got second opinions, and found them immensely helpful in making an informed decision. In my case the second doctor I saw ended up finding an enlarged node on my CT scan that my first doctor missed, so clearly I'm an advocate of second opinions.

As to your earlier question - it's not necessary to get a referral from your oncologist. I just called Dr. Einhorn's office and they got me in a week later.

I wish you and your husband all the best.

Sam

---------------------------------------------------------
Diagnosis: 10/14/11
Right I/O: 10/17/11
Pathology: Non-Seminoma, Pure Embryonal Carcinoma
RPLND: 11/2/11
Pathology: One node with metastatic disease, Stage IIA
Surveillance: 12/15/11

**mpalka6** · 07-26-12, 10:50 PM

Thanks for reply. We still thinking where to go : dr Einhorn or Dr P. Carroll at San Francisco. We haven't decided yet. I'm quite confused now. How the other doc found your Ct scan abnormal? Aren't they get result from radiologist ?

**Davepet** · 07-27-12, 01:29 AM

Originally Posted by mpalka6

Thanks for reply. We still thinking where to go : dr Einhorn or Dr P. Carroll at San Francisco. We haven't decided yet. I'm quite confused now. How the other doc found your Ct scan abnormal? Aren't they get result from radiologist ?

You can email Dr Einhorn & get his opinion in less than 24 hours (normally). Make sure to give him all the info you have. Might save you trip across California.

Dave

**sammac84** · 07-27-12, 06:48 AM

Originally Posted by mpalka6

I'm quite confused now. How the other doc found your Ct scan abnormal? Aren't they get result from radiologist ?

You'll send the CT scan film to the second doctor so he can have his own radiologist do a report. He won't just go off of your previous radiologist's report.

**mpalka6** · 07-27-12, 11:08 AM

Ok. I got it now. Thank u

**mpalka6** · 07-31-12, 02:24 AM

My husband blood test came back today. Markers are in normal range but he has abnormal high level of protein and globulin . Anyone has any idea what those two mean?
Should we be concerned?

**jpea72** · 07-31-12, 02:43 AM

I'm having those same pains in my lower chest (lung area) and in my abdomen so I'm glad to hear that others have or are feeling that as well with clear CT Scans. I have mine tomorrow and was going to tell them about what I'm feeling.

I'll keep you posted if I hear anything new about this pressure type feeling in my low rib cage area.

**mpalka6** · 08-01-12, 12:04 AM

I looked the result and there is no LDH in his blood results. Should the doc order LDH after the surgery?

**Davepet** · 08-01-12, 02:56 AM

Originally Posted by mpalka6

I looked the result and there is no LDH in his blood results. Should the doc order LDH after the surgery?

LDH is the least useful marker, since there are lots of non cancer reasons for it to be elevated. I would not be concerned.

Dave

**mpalka6** · 08-02-12, 10:42 PM

I spoke to oncologist on the phone and he said you need this marker for staging not after diagnose so obviously he's not going to request this marker. Do you think we should request to test this marker in future testing? Thanks

**Davepet** · 08-03-12, 01:35 AM

It's not that critical, here's some info that might help to understand why:

http://labtestsonline.org/understand...s/ldh/tab/test

It's basically a way of discerning tissue damage, even strenuous exercise can cause temporary elevations in LDH, according to that article. I suppose it is useful in some TC cases, but hard to say . I'd tend to trust your doc on this.

Dave