Hello Everyone: first my best wishes for all...We are rooting for everyone. So Ron Had his Urologist Appt. yesterday. He will go back on Lupron for maybe 9 months to a year. The urologist said since Both T and PSA went up together that it is not refractory or resistant ca. So Back on Lupron since it was doing a good job for the 14 months Ron was on it (negligible PSA and T on it.... but after 6 mongths off med 1.7 psa and 10.4 T) And everyone who had read our original post stated WE NEEDED TO GET AN MO WHO SPECIALIZES IN PC...so we asked to be referred and our urologist will refer us. I was surprised that he said... "but the MO wont tell you anything I havent already told you" . what do you think about a comment like that? We both found that a weird thing for the uro to say. Also we asked for scans because we dont trust PSA and he will order us a bone scan. Also we asked the pharmacist for his opinioin and he said MO was definitely a good idea and that he could also refer to a Radiation Oncologist if there is bone pain, which there is. Another funny thing is that when Ron mentions his bone pain to Uro he tells us it probably isnt because of the CA. I dont like the word "probably" in any answers from docs.... we kinda like to know more. So anyway, long story short we have been referred to MO and for a bone scan because we asked for it. thank you everyone for your continued support.
Anne for Ron Update: Hello Everyone... - Advanced Prostate...
Anne for Ron Update
Yes, we have been referred to one who specializes in Prostate CA. Looking forward to his opinion on things. Even the Pharmacist at the CA Center seemed more keen on us getting into see the Oncologist than the urologist was. We will keep everyone posted when Ron gets in to see him. ps forgot to mentioin, ron will start casodex for a 2 weeks then just Lupron. It seems to be more of a thing in the states to use more ADTs at a time than here in Canada with just Lupron. thank you for your reply .
Nalakrats’ advice is always excellent. Ron definitely needs a medical oncologist who specializes in PCa. I hope the visit goes well
From a scan standpoint, I suspect he will need at a minimum a bone scan and a CT scan. Those are the basic scans for PCa. There was another thread on the site yesterday that also talks about having a PET scan, which is a much higher resolution - I just had one and it has incredible resolution. They might also order a circulating tumor cell test.
While your urologist is probably very competent, PCa cancer treatments are changing very fast and I found when I went to MD Anderson (a center of excellence hospital - there are many others) that they were starting to use more advanced treatment approaches. You will want your treatment to be focused on Ron’s specific case - not just following ‘standard protocol’.
Please keep us posted on how Ron is doing. And how you are doing, too!
James
Yes....to me it seems like the urologist is using Standard Protocols and from getting more educated by reading many posts on this site I have discovered that there are many many different ways of treating this CA and thinking outside the box has proven way better for many than the standard approach. Thank you. We cant wait to meet the MO and possibly a Radiation O as well if needed for bone pain. Even talking with the Cancer Center Pharmacist was helpful so I thank so many of you who have encouraged us to get a team together. thank you. Anne and Ron
If he said that, time to leave him. You don't need that. Even if it is true, a good doctor would give you the referral, and offer any help he could. Not a good attitude, especially for someone in a time of need.
thank you for that...I feel he just doesnt seem interested in other approaches....maybe just thinking of retiring...i dont know....but I am so glad that we are enroute to putting a team together.
I agree he’s lacking on some fronts. I was stuck with a similar no bed side manor or little or no compassion Uro. His opinion differed greatly from my specialist. He is a great surgeon and helped me that way many times. We need URO’ s too. Another uro that saved me from kidney failure with tubes in my back told me “we” meaning all urologist are just plumbers, and some are, most make the big bucks by surgery...
I'm Glad You're Going To Medical Oncologist For Prostate Cancer. If You aren't pleased ask here for referrals. Good Wishes. Take Care Of You Too Anne.
Jackie
Hi Anne one thing i noticed is his T is 10 which is considered castrate. 20 is considered castrate so it just may be he is castrate resistant. Maybe others can chime in on that.
Thomas
does 10 in Canadian units translate into 100 in american units. That is what i was thinking.
rfurgason, Get thee to an oncologist. You have time on your side now!
In my opinion, Urologists usually are fine surgeons, however, the complexities of PCa are very complex. Your Urologist know standard care. But guess what, any physician can treat you with standard care..... i.e., hormone injections until it no longer works..... who is current in the treatment of metastatic cancer? Ususally a Medical Oncologist. However, most Medical Oncologists know only the broad spectrum of cancers. While not all cancers are equal, the broad treatment is usually the same. Only a Medical Oncologist who specializing in advanced PCa is equip to handle the latest treatments of his speciality.
While this is good, I believe that there are some options available depending in location. Even a Medical Oncologist specializing in metastatic PCa, treats with what is current known to work to defeat this bastard of a disease - even those in teaching in medical schools and practicing in teaching hospital..... Yet, if one truly wants to get cutting edge, then a Specialist who does academic research, is even better as they are trying new protocols based on their research.
I could be wrong; however my personal experiences tell me that, if possible this is the way to go. Back in 2004, my Radiation Oncologist me that anyone could give me the standard care: I could stay with him, go to my Urologist, heck even go to my Personal Physician. I added him a question as what he personally would do in my situation given a failed primary treatment with mets within a year? He thought a minute and then replied, I would find the best Medical Oncologist available that specializes in metastatic prostate cancer; not a generalist, not one who treats lung, breast cancers etc, but only prostate cancer. Further, I would look for this specialist in academia doing research. This way the best advice that I have ever received!
rfurgason, I realize that you are on National healthcare, but seek the best within that system that you can. If you can get into an academic research network, do it. Even if you have to travel. I have a friend that did this and hasn't looked back. There are done execellent ones out their. You may have to bust through beaurocratic road blocks, but be persistent.
One thing that I would definitely do is to enter into a discussion of "micro-metastasis" and how these little buggers float around in the lymphatic and vascular systems looking for a home to multiply. The end result, bio-chemical failure...... research the term, then discuss a plan with your Medical Oncologist. Stay positive in your daily life and Keep Kicking the Bastard.
Gourd Dancer.
Well said. From what I have seen and read in the last two years I think this disease is more treatable than we are lead to believe. The care and the current belief of the majority of doctors on old protocol being applied to this disease is mind blowing. If you want a chance at curative or long term remission it's absolutely essential getting a doctor who is blazing paths, not following the path of palliative care.
Ron
Thank you so much..... we so appreciate all your well thought out advice and obvious caring you reveal through your educated replies. Thank you for caring....All of you.
Thank you Gourd....so very much for your caring and shared knowledge.
Definitely see a medical oncologist. An urologist, for example, could not order Zytiga for him (at least that is what my urologist said). Seeing a radiologist is also a good idea.
Sounds like your urologist has some issues. Mine flatly stated that there is nothing more he could do for me and that I must see both a radiologist and a medical oncologist.
In any case, it is great that you are pushing ahead. You mentioned a bone scan. Is he also getting a CT scan? If you are worried about bone mets you should double check just to see that the cancer has not spread to other areas.
Again, thank you for being agressive with your husband’s care. I do not know where any of us would be without our caregivers.
PSA BIG INCREASE!!!
Request for Input
Possible castrate resistance already?
Prolia/DEXA Update - Need Help!
