What next?

[Alex_G]

Today I visited my urologist and got all my reports from him.
He told me that I need radio therapy but I have to find oncologist who will prescribe the doze.
I’m not sure what to do next? Do I need to find TC specialist or I can just schedule an appointment in my closest hospital? What the right thing to do?

Here is my pathologic Report:
Type of specimen: Left orchiectomy with cord
Size of tumor: 5cm in greatest dimension
Histology: Classical seminoma
Primary Tumor: pT2(tumor limited to the testis and epididymis with intratumoral vascular/lymphatic invasion)
Regional lymph nodes: Nx
Distant metastasis: Mx
Serum tumor markers: SO
Margins: Tumor is confined to testis. No invasion of tunica albuginea or tunica vaginalis is identified, cord is negative (cord=7cm)
Other histologic findings: Involutional changes(fibrosis and necrosis)

CT Scan:
1. several tiny less than 7-8mm lymph nodes in the retroperitoneal region and along the mesentery. These are nonspecific finding and short term interval followup CT advised.
Early metastasis is not entirely excluded.
2. Otherwise remainder of the abdomen and pelvis is unremarkable without suspicious mass. No free fluid seen

My oncologist told me to see him in 3 month.
Don't you love doctors?

Thanks

Alex

[Scott]

Your urologist didn't schedule you with a radiation oncologist but left it up to you? How did you get to the oncologist who told you to see him in three months? It sounds as though you were defaulted to surveillance. Were you given options?

[Sans rt1]

You say your urologist recommended radiation treatment, which makes sense based on your staging. You mention you oncologist, did you meet with him and what did he say?

I know there is a lot going on with you right now, and perhaps you did not catch an instruction - I know if my wife was not taking notes during my whole ordeal, I would probably still be trying to figure out what I should do. My urologist told me to talk with his scheduling nurse to get the names and numbers for radiation oncologists to contact. So the urologist did not give me the contacts, his office did.

I am not saying this is the same for you, but you really need to call and talk with your urologist and get a recommendation. If that does not work, talk with your oncologist and get a recommendation from him. I sure would not look in the phone book for a radiation oncologist.

[Alex_G]

I am sorry – I mean urologist told me to see him in 3 month.
My typo – a lot of going on in my head now.
He did not recommend me anyone. He told me he can recommend me oncologist from his hospital but if I want to do radiotherapy in the hospital close to my home, I need to schedule an appointment with radiation oncologists in this hospital. Basically, my urologist just suggested that I need therapy but he has no clue about the rest.
I guess my next step will be to find radiation oncologist myself and trust him?
I’m a little lost here.

[petep]

alex,

do a serach on this forum on centers for excellence for testicular cancer...

I found out I had testicular cancer on a wednesday...that is, my urologist's ultrasound tests came back...and surgery the next am...then my urologist scheduled my tests...blood, CT scan, chest xray....he reviewed them with me, but suggested an oncologist.

I then contacted a center for excellence...einhorn, and visited with him about 3 weeks post surgery....it cost me a plane ticket and $250 (approx) as my insurance then did not cover out of state....best money I ever spent in my life.

he reviewed my results, actual slides etc...I told him where I lived and asked if he would recommend anyone...I mentioned the name my urologist recommended and he concurred that this is a very good oncologist...so I ended up with dr. benedetto at the univ. of miami.

I highly suggest you contact one of the centers for excellence as a good starting point.

I am certain you will be fine, but I was absolutely astounded at how many people were being treated at Miami that had been misdiagnosed elsewhere.

[Sans rt1]

I understand your confusion as to the roles of all of the doctors involved, as I was there too. You really need to be talking with an oncologist (medical oncologist), as the radiation oncologist will (if my experience is true to what other areas of the country or medical organizations do) will just handle your treatment. I agree with petep, if your urologist can't or won't, then consult with an expert treatment center to get referrals in your area (and they can review your treatment plan to make sure it is in line with what they would reocmmend.

When I was going through all that you are, I was very confused as well. No one ever explained how all of these doctors work together, and I wish they would have in advance as it would have really helped me. My urologist, who diagnosed me and performed the surgery, referred me to an oncologist and a radiation oncologist. I thought at the time that it was a choice between the oncologist or radiation oncologist depending on what treatment I selected. But no, my long term cancer doctor is the oncologist - my urologist handed me off to him for my treatment and long-term care. He will oversee my long term follow-up care and in the slim chance something comes back, he will handle that care as well. The radiation oncologist handled my RT, and reported everything back to the oncologist. It has been 4 months since I finished my RT - I met with my RT doctor today, and that will be the last time I see him. I will have at least one more follow-up with my urologist, mainly to check how I am healing and if there are any male-type problems relating to the I/O aftermath. But I will meet with the oncologist frequently over the next few years, then less frequently, but at least once a year for life.

[Alex_G]

Thank you for good explanation! Now I understand that I need to see oncologist.
I was under impression that I need to find radiation oncologist and he will determine my further treatment. I as I can see now I was wrong. My urologist told me to show up in 3 month so he can get me forms for CT scan.
Another question – is urologist the doctor that prescribe hormone treatment?
I have a history of surgery for undecendent testical in my childhood. My only testical left is undeveloped and smaller in size that other one. So I really concern about my testosterone level. I asked my urologist what I should do about this. He told me not to worry about it. He also told me that my other testical should take care of my testosterone and even grow larger. I can hardly believe that but who knows.
Does any one have a clue about this?

Thanks

Alex

[Sans rt1]

It is my understanding that your urologist would handle any hormone issues, but I have not specifically asked. Interesting that you mention your remaining one growing in size - today at my followup visit with the radiation oncologist, he asked if I had noticed my remaining one increasing in size. I said no, and asked should it? He said sometimes it will increase in size for a while after an I/O.

[Alex_G]

Probably because it will handle all the work for a missing one.
My concern is that I have undeveloped testical left. Does it mean it will develop in time?
Who knows.