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T3B LN+ Life after HT Firmagon

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Prostate Cancer
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Posted 1/14/2017 8:07 PM (GMT -5)
I am 2 1/2 years into my 3 years of firmagon after surgery and radiation. I am wondering if anyone else is in the same position as I am and how you are doing. I will be honest. These lymph nodes scare me. I have my urologist and a radiation oncologist. When do I get a hematologist, or am I better off with an oncologist? Looking for some direction for the future.
Posted 1/15/2017 12:57 AM (GMT -5)
Hello O.C. and welcome to HW. You are getting a really good response from the tx that you've had from your uro, but I don't blame you for being freaked out by the lymph node involvement. Hopefully you'll remain undetectable for a very long time, but can't hurt to add an oncologist to your team sooner than later.
I'm sure others will weigh in, but in the meantime, cruise on.
Beth
Posted 1/15/2017 5:12 AM (GMT -5)
I would be consulting an oncologist that does a lot of high risk and advanced stage PCa work. I doubt any treatment change would happen now as you are in a very classic method and getting the desired effect. But if you have a future recurrence after ADT it should be clearly out of the hands of the urologist and radiation oncologist. This is a great time to establish a relationship with a great medical oncologist in my opinion.
Posted 1/15/2017 5:44 AM (GMT -5)
Yeah, you got the standard for what you have. What JNF said. If you get a recurrence you will likely go back on the Luprolides.

I got "lymph node exposure" but no metastases. Hope I have kicked the can down the road a ways, with some luck, so have you. smile
Posted 1/15/2017 8:38 AM (GMT -5)
I had a positive node so I joined the N1 crowd as well and go from one PSA test to the next one. At this point, I am being followed by both the urologist and the RO. I think the urologist will cut the cord so to speak after 24 months (36 months? I forgot.)

My RO has given me mixed signals as to what happens if my PSA climbs, at first she said I would be referred to a medical oncologist then a few months later she said I would go on another round of ADT (Lupron) to be managed I assume by her.
Posted 1/15/2017 8:57 AM (GMT -5)
Thank you for your responses. My wife and I attend an Us TOO support group and met a hematologist there that we both really like, that is why I was considering that route. So far I have been really lucky getting great doctors and I hope to find a local oncologist that we like as well.

We are really hoping that the three years on the monthly injected firmagon snuffed out any cancer cells that weren't zapped with radiation.
Posted 1/15/2017 10:17 AM (GMT -5)
As I understand the terms medical oncologist and hematologist go together. Whether a doctor refers to them self as one or the other could tell you a bit about where they specialize.

I would learn more about this doctor and the actual experience and success the doctor can demonstrate with advanced prostate cancer. The best way is to have a consultation and assessment of your situation.
Posted 1/15/2017 3:06 PM (GMT -5)
I don't think you have any need for an oncologist or hematologist at this point. Those doctors are the ones to see if your prostate cancer is incurable, and as of now, you have every prospect of being cured. I'm assuming that you received radiation to the pelvic lymph nodes when you got salvage radiation. All you can do now is wait and see - if your PSA climbs after you have completed your last firmagon treatment, then it will be time to seek out an oncologist.
Posted 1/15/2017 9:30 PM (GMT -5)
I like the way you think! I alternate between seeing my urologist and RO every 6 months. My urologist is extremely positive, my RO reminds me that lymph node involvement can be tough to get. Thank you for your positive reassurance.
Posted 1/16/2017 10:09 AM (GMT -5)
What was your PSA after surgery and before hormone therapy?
Posted 1/16/2017 8:00 PM (GMT -5)
They didn't take my PSA after surgery. Following surgery my urologist wanted to wait and get my PSA but my RO wanted to get me on hormones immediately when they found that I had lymph node involvement. The urologist said we are hitting this with a full court press - surgery, radiation and 3 years of firmagon. Urologist won't even bring up going on Lupron, he thinks monthly Firmagon is doing the job and wants to stick with it.
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