What questions should we ask?

[kaow7]

My brother died on April 1st of 2004 from testicular cancer. He had an extragonadel non-seminoma Germ cell tumor. By the time they figured out it was testicular cancer he was already stage 3. He was diagnosed in June 2003. He was very responsive to chemo and was in "remission" in December. In January his counts went back up. His oncologist suggested to his wife that they not tell my brother because there was nothing else they can do for a month and didn't want to worry him. In mid-February we took him to see an oncologist who specialized in testicular cancer with the University of Pennsylvania. It was found in his brain and underwent brain surgery to remove two tumors on March 1st. This was said to be a "homerun surgery", they got everything. Within 3 weeks of recovery he started having trouble with leg pain and was being treated for a pinched nerve, however it was cancer on his spine. We took him into the University of Penn. on Saturday because he could not walk at all on his own and could not stop vomiting. On Monday they began all the test and we were informed on Tuesday the the cancer had returned up and down his spine and he had more tumors on his brain. He said that day he wanted to fight to the end. On Wednesday he went into surgery to have another brain surgery which would allow the chemo to go directly into the brain and chemo was started immediatly to treat the rest. He went into a coma early Thursday morning and never came out. He died at 4:00 Thursday afternoon. It has been six months since his death and we called to get the autopsy report. The dr. set up an appointment with the family to go over the autopsy and answer any questions we may have. The preliminary report showed that he had tumors in his testicles, spine, lungs and brain. What else could be left? I wonder why they didn't remove his testicles from the start. They say at the time it didn't show up there but he was 33 years old and had 3 children and did not want any more. Would this have made a difference? I would like to come up with a list of questions to ask but I need help from people with more experience. What questions would you want me to ask that may help someone else who is going through t.c.? We realize that nothing is going to bring him back to us but we need to know if other decisions were made would it have made a difference. This will help other people in treatment and it may help my own 3 boys and my younger brother or my brother Franks 2 boys that have been left behind. We want to be prepared and we want others to be prepared and to learn from this. Please, any suggestions will help.
Sincerely,
Kelly Weaver (A.K.A.) kaow7 [SIZE=2]

[Stuart]

Hi Kelly and welcome to this forum.

Gee, I don't what question you should ask, but I was diagnosed with an extragonadel non-seminoma Germ cell tumour in 1987 and under went six month of a chemo regime that we don't hear much of today called POMB/ACE.

I asked a lot of question at the time as I had been unwell for nearly a year before they finally found my liver was nearly 3 time normal size with tumour and my left kidney had stopped working because of the amount of tumour in the abdominal area.

I was fortunate that my doctor did every test including spinal fluids and all tumour was known and I had no further tumours found later in my treatment or surgery.

I know in this day and age this should not happen, but sadly it has.

We can only hope forums like this and TCRC make people more aware of the on going concerns of people like yourself and the people question their doctors during treatment and if you don't get the answers you want the ask another who is known to be "an expert" in this field.

If you go to the TCRC , you find will a lot of information that may help you.

I hope this may help,
Stuart.