Start Chemo April 10th

[bryce-ord]

Got to see the Oncologist today (mixed news).

The Good:
Started oral Chemo today, and start IV Chemo April 10th.


The Bad:
Looks like error in blood work (LDH>Normal, HCG=Normal, AFP=Normal).
Lymph nodes in neck have doubled in size since CT scan.

Side note:
My Oncologist scared me when he said he wanted to examine me to see when we would start treatment. He said I was an emergency case and needed to see if it was safe to start Chemo next week or if I would need to fly to the Provincial Cancer Clinic to start Chemo tomorrow. As he examined me he was talking on the phone with the head of the Provincial Cancer Agency. He was using words like "Widespread" and "CT scan not matching examination node size" (CT only 7 days old). After thinking it over on the way home. I realized, Testicular cancer is rare. There is probably under 5 cases in my Province each year. So my Oncologist is just being diligent. With no blood levels to work from and because it takes 2 weeks to get the blood work back. He is just making sure the treatment is outpacing the disease.:

[zea222]

I don't think it's rare.
I live in Croatia. This two months how I'm often in hospitals because of my boyfriend's cancer, I meet so many young people with tescticular cancer. That's sad.

But I'm scared. I talked with so many people about testicular cancer and everyone's story is different.
I can't find anyone who has pure yolk sac tumor like my boyfriend. Is your maybe pure yolk sac or?

How were your markers before surgery and chemo? In which stage you are?

My boyfriend today is going to finish 2x round PEB. I can't wait to see level of tumor markers!


I hope you understand me. Sry on my bad english.

[bryce-ord]

My case is a special one. At this point we don't know my stage (but it looks like minimum stage 3). My pre surgery markers are all negative (but could be lab error). From what I understand it is pure yolk sac. My Oncologist did not discuss where my cancer fit in to the classifications. He I more interested in getting treatment started. The only thing I know for sure (at this point); Is that 6 weeks ago I was Cancer free, and as of yesterday it is widespread and spreading rapidly.

[Chaps6]

Hello, my husband also had a tumor in the lymph node in his neck (2.5 cm). He is currently going through treatment and actually just finished his first week of his 2nd cycle. I am by no means an expert, as I am just learning as I go..However, when we first learned about all of this, we were only told about the tumor in his abdomen. He then got a pet scan which showed the one on his neck. Our DR was not phased by it. He told us that is doesn't change his prognosis. The distant met and his high tumor markers (hcg at 8100 post surgery) did put him at a stage IIIb, so that did add on an extra cycle of BEP. So he will be completing 4 cycles instead of 3. But our doctor didn't think it was anything "atypical".. I have tried to look things up about it spreading to the neck, and have not found too much on it. Maybe someone with more knowledge can touch on this.....I just wanted to let you know that you are not a lone in this. Please keep us updated.

[Fed]

From what I understand it is pure yolk sac.

Is this what your pathology report said? If so, that would explain why the tumors are getting so big. Yolk sac tumors tend to be on the larger end. There is one thing I do find striking. Yolk sac tumors almost always express AFP. What's the story with your markers?

[bryce-ord]

Is this what your pathology report said? If so, that would explain why the tumors are getting so big. Yolk sac tumors tend to be on the larger end. There is one thing I do find striking. Yolk sac tumors almost always express AFP. What's the story with your markers?

I did not ask about the pathology. I was just told it was Yolk sac (I don't know if it is pure, or just the majority). I think there was an error with my blood work (Too odd for levels to be normal). My Oncologist is on vacation next week, so I think he just wanted to start treatment before he left. Most of my appointment was arranging treatment (paperwork, blood, Oral Chemo). I think my Oncologist does not want to classify it yet. He probably wants to make sure no lab errors (blood & Pathology) happened. I was told pathology would take a week (7-10 days minimum) to get back. And only 3 days after surgery, we are being told it is yolk sac. This does not really concern me. We know it is germ cell. And we know BEP is the treatment.

After only 2 days of oral chemo (Etoposide). The 3 enlarged nodes in my neck have decreased by about 15% and the pain is down by about 80%.

[Fed]

For starters, oral chemo (etoposide pills) in cases of TC s only given for maintenance therapy after high dose chemotherapy with autologous stem cell transplant. Also, it is not standard operating procedure to start treatment without having the solid details on the pathology (and your oncologist rushing things without the complete data set because he has to go on vacation is unacceptable).

It just seems to me your doc, for lack of a better phrase, is not on the ball here. You should get a hold of all of your treatment history documents (lab reports, pathology report, radiology reports). You need all of that to make an informed decision on treatment.

[Aegean]

Christian Kollmannsberger at the BC Cancer Agency is one of the best TC docs in North America. He is quick to respond and will see you quite fast. Please have your docs correspond with him.

[bryce-ord]

Aegean:
Thanks for letting me know who the Doctor on the other end of the phone was (I never did goole it, slipped my mind). Dr. Kollmannsberger suggested my treatment (3 days oral, 3xBEP). Thanks for letting me know I am in good hands. From what I understand, Dr. Kollmannsberger and my Ocologist are good friend. So I think he will be kept in the loop.

[bryce-ord]

Hello, my husband also had a tumor in the lymph node in his neck (2.5 cm). He is currently going through treatment and actually just finished his first week of his 2nd cycle. I am by no means an expert, as I am just learning as I go..However, when we first learned about all of this, we were only told about the tumor in his abdomen. He then got a pet scan which showed the one on his neck. Our DR was not phased by it. He told us that is doesn't change his prognosis. The distant met and his high tumor markers (hcg at 8100 post surgery) did put him at a stage IIIb, so that did add on an extra cycle of BEP. So he will be completing 4 cycles instead of 3. But our doctor didn't think it was anything "atypical".. I have tried to look things up about it spreading to the neck, and have not found too much on it. Maybe someone with more knowledge can touch on this.....I just wanted to let you know that you are not a lone in this. Please keep us updated.

Thanks for your support. My Oncologist is not phased either by the 3 enlarged nodes in my neck. He is still talking about 90% cure and how I can't go diving in Mexico when I am celebrating my 1st year "all clear". I am feeling really good about the whole thing. I am only on day 3 of the first cycle. But I am only really sick 5-7 hours a day. And the nodes in my neck keep decreasing in size by 15% each day.