Has anyone delt with this

We went for his 2nd 3 month Lupron shot yesterday and I of course had a lot of questions. I've called his oncologist several times with no call back!!! Everyone pulls his files and says the cancer is everywhere? His nephrologist told me when he started dialysis lets worry about his cancer not his kidneys. This makes me furious!!!I told him no today he is a kidney patient not a cancer patient, u focus on his kidneys, which are back like I knew they would. They always say its everywhere and yet can never tell us where. The pet showed no organ involvement, suspicious area in bladder but could be urine. Pelvic lymph node involvement and bones from the neck down. I want to know how many mets and where!!!! Every where isn't good enough!!! He had a ct scan that showed 3 lesions side by side on the thoracic spine, he only got that x-ray due to the accident! We want radiation if its possible due to this is where the majority of his pain comes from. He had a car accident 12-28 and no broken bones, no fractures. Doesn't that say something? I feel like they aren't trying because he is stage 4 and had no insurance. He did get social security it begins in June and they said he should receive Medicare that date due to his dx instead of the 2 yr wait. Yesterday when we went a nurse practitioner
came in not the doctor, when she asked about pain I mentioned the mets. She looked at the pet and of course sad face! Then said Dr ??? would have sent him to a radiation oncologist if it was an option. Why is it not an option? with it everywhere, somewhere should be an option he has no other health issues! She looked at me dumb founded! I then told her I feel you aren't doing all you can, of course you see him as a patient but he's my father. Then she spoke to his dr and got us an appointment with a radiation oncologist. Why hasn't he been seeing him from the start? I'm starting to believe they don't know where it is! He fell this morning and now his back where the tumors are is throbbing. The only thing good about this week is we did find out now he has been approved for 100 percent coverage till social security kicks in. I feel like they see him as dying! Stage 4 patients have gone into remission. You can keep this disease at bay for possibly years. Another question she took him off casodex after a month, should he still be on it? His psa has now dropped to 22 as of yesterday. I requested his medical files get home and the disk it blank! I'm sorry but I had to vent somewhere people understand, its hard enough getting him to go to the doctor, yesterday set him back seeing me demand better treatment. Going to the cancer center takes a toll in itself your heart goes out to everyone and it doesn't help that I'm a natural crier I can't help it, I've never been able to hide emotion. Just so frustrated :(


DX Oct in er
Pet and biopsy Nov. official dx pelvic lymph node involvement, mets in skeletal system neck down
psa 700plus Gleason 8
Nov 19 first Lupron shot, zometa
Nov 21 Kidney failure due to infusion 9 days in hospital
Dec 6 4 days in hospital pneumonia
Dec 28 Car accident, black ice on the way to dialysis
Jan 1st ICU stay brain bleed due to car accident 1 night for observation bleed absorbed
Jan 15 psa 55
Jan 28 off dialysis
Feb 17 psa 22 2nd Lupron shot

My computer thoughts hit first since that was your last point - ask the office what system they are using for their files. I saw that with some bone scan results. My home computer's operating system was too old to recognize the cd and its content. I had to use a later computer.

It is quite possible that they either did not write the files that were cached for write or perhaps did not close the disk, both things that someone hurried can do. I always ask the person who takes my request to print a list of the files from the cd. That gives them the "opportunity" to find a problem like that before having you find it.

For the rest, I can relate only in the existence of mets in my case, not the spread. It is very true that PCa can be everywhere but not be visible anywhere to the standard scans available in our local hospitals. (Look at Sonny's threads for information about his quest for more exacting scans). I have previously-confirmed mets in spine and ribs. After 6 months of Lupron they were driven down to "suspicious areas". I've been off Lupron for a while, and they are coming back. It is just part of our little Twilight Zone.

Can I radiate them? So long as I am not radiating an area already treated, yes, for a limited number. According to my Oncologist, it is too early in progression to radiate those, as I need to save that option for those that may case additional issues or extreme pain.

So yes, radiation is possible, but there are limits and protocols.

Casodex - some oncologists would keep him on Casodex. Mine would not. Mine sees Casodex as a way to prevent pain at the start of Lupron treatment, then to be held back until Lupron stops working. That said, you mention 3 month shots, so you are close to the start of the treatment. Mine was a 6 month shot, so the impact was likely earlier for me (or so I was told to expect). My PSA was undetectable at 3 months, but was not so high at the start (my PCa is believed to be producing very little PSA, so that is not exactly comparable). From 700 down to 22 is a great reaction.

And a question in relation to the doctor - patient interaction. Are you driving the doctors, or is your dad? He needs to be motivated to get their attention. They may be tailoring reactions to his questions / mood more than yours. I saw that when my mom was involved. They worked with her, but not to the point of taking her involvement over mine. I'm a bit more laid back about it, and am more likely to let the oncologist, who I trust, drive things.

And as to dialysis, I have worked as a volunteer in that area, and have seen people with lots of issues. They may have been just trying to lessen the overall burden on him. I don't imagine that they were writing him off.

My best to your dad. I will be where he is, but until then I can only offer the experience I've had so far.

Thanks Lupron Jim, This is what his pet reads I saved it from previous file for social security


PSA 673 Pet scan with multiple abnormal lesions in bones and also significant para aortc and RP adenopathy on imagining



Enlargement of lymph nodes

bone.

venous embolism and thrombosis of deep vessels of lower extremity



Neoplasm of un specific nature of bladder



Loc exc bone lesion nec



Patient in significant pain secondary to many bone lesions that appear to be consistent with metastasic prostate cancer.

How many is multiple 3 on the thoracic spine? I figure there may be a lesion on his ribs ,he complains of pain there when he lays on his left side. Reading it I know it looks bad due to words such as multiple and they have not mentioned thrombosis to us. Its as though everyone uses this one document as a gravestone marker. My dad shovels the driveway, walks, works around the house is active, the Lupron has its side effects fatigue, some muscle loss in the legs and arms. He does stay a lil pale because his hemoglobin stays at 8.4. He does say he feels bad a lot, I assume that's treatment because he felt fine before just a lot of pain, but many people doesn't even know he is sick. I keep holding to the fact he hit a cliff head on and suffered no broken bones, I was with him in great health and had a compression fracture. I called just now to see when our appointment was with the radiation oncologist and they hadn't sent the consult yet. So frustrating. He does have an appointment now for this week after the office called and got it.

Not sure where you are living, but there are some PC-specialized oncologists in the US, about a hundred of them. A general oncologist treats many, many, many cancers that behave quite differently than PC. I would suggest looking into finding a PC-specialized oncologist. The guys here may help you locate one. Your dad may be even more impressed with an oncologist that is a PC expert. Some of your worries may lessen when you know you are in good hands.

I've read through this more than once. There is a combination of good and bad here. I'll invite you to pull around to my side of the table, as one of our long time members (and a good friend) often tells me.

My curative options are gone. Those options are intended to contain and destroy PCa in a confined area. Your dad and I are beyond that. Nothing they will do (with today's knowledge) to me will "cure" my PCa. That is the bad news.

The good news is that we are both alive, research continues, and Lupron is having the desired effect for both of us. That given, we can stay with Lupron. It can and does drive back some PCa. My bone mets receded while on Lupron, and are getting worse while off it. So I'll be getting another six month shot, probably in March. Your dad's PSA shows improvement. That is good. Period. Good.

At some point my / our PSA will go up. At that point I / we will change meds, and see what happens.

These treatments are "palliative", not "curative". They are intended to limit the pain and spread of something we already know is everywhere. What am I betting on? I will die of something else first. And to limit the candidates, I am trying to stay as healthy as possible, and do what the docs tell me to do.

My docs gave me three years. I am at four years and four months. I have beaten the PCa odds. The idiot who crossed four lanes of traffic to kill himself in a ball of flame on the center wall a couple of weeks ago did not get me. I don't have to worry about being shot in bed by a jealous husband anymore (thanks to Lupron), so that is off the list as well.

As Sonny will tell you, Every Day is a Bonus. If you are near north Florida, you should drag dad down to our GFMPH weekend in March. We are a varied crew, but all still living if we are there.

To add to what 142 and SpecialLady posted above ...

The CD I get from the local firm who does the bone scans, the bone density scans, the CT scan, the MRI's etc has software on it that enables one to view the actual slides. this particular file is called eFilmLite but your firms may use something else.

It would help to know what country you live in and what part of the country as the Healing Well audience is so broad it's highly likely someone here has expereince with doctors in your area.

In my case I go to medical oncologist at Univ of Florida & Shands in their metastatic disease program,

One of my goals from the Lupron is to stay castrate resistant long enough to give the technology and research time to surpass the inevitable growth of my advanced prostate cancer.

If you do live near Florida (March 20-24) or near Rochester NY (last week of Sept), I highly recommend you and your pops attending an GFMPH Good For Men's Prostate Health 3-4 day gathering of meembers of this forum.

It's one thing to interact from a keyboard, much better to form life long friends in person. It's not a pity party but a gathering of men and their partners/caregivers who enjoy life to the fullest, now having a better appreciation for the fact that both men with prostae cancer and either gender without it has a finite time on God's earth to enjoy life to the fullest.

Though most cancer professionals claim that Gleason 9 and 10 is treatabel but not cureable, UF & Shands is treatign me with curative intent. I don't know which schoold of thought to believe , actually have more confidence in prayer, but regardless so far prostate has shrunkedn from 50.4 to 31.6, PSA has dropped to 0,12 and not begun to rise yet and testosterone is <003 the low end of the limit the test can measure.

I am so fortunate to have no pain nor any fatugue, the only symptom being no libido which as 142 says at least improves our longevity in one aspect by keeping us from getting shot by our spouse of someone else's spouse for infidelity:}

You do not necessarily need a referral from the urologist to see a radiaiton oncologist or a medical oncologist who specialize in advanced PCa. Once you do some homework and/or get recommendations on those who excel in their field in your part of the country, you can contact them directly.

LupronJim