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Today's visit with my oncologist

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Posted 10/26/2011 8:33 PM (GMT 0)
Today was my 4th meeting with my new oncologist.  The good doctor is never in a hurry, we spent a full hour together.

He ordered an advanced PET Scan for me.  Arrangement should be made within the next week or so.  He doesn't have a lot of faith in conventional bone scans (I have had 4 now) nor the most recent MRI done of my hip.  He said neither one is reliable enough to detect early mets.  He and I are both deeply concerned about the amount of pain in my hip area.  While his pain control plan is helping with the pain, the actual source of the pain is both extending in range and intensity.  He said the PET may be able to show up something that the other scans can't.  If nothing else, he said, it would give some peace of mind that there aren't mini-mets already at work.

We spent a lot of time on pain control again, and decided to leave my current mix of pain meds just where they are.  Most days, they take care of 75-80% of the pain.  I do have bad days where despite the meds, the pain in my hip, lower back, and right leg are unbearable even with the meds.  He told me that I wasn't do myself any favours by not  taking the max. amount of Loratab he prescribed for me.  I can take up to 8 per day, right now I average 5-6 per day, plus the morphine patch.  He said if I need it, to go ahead and take it, despite my reservations.

I will see him again on January 4th, just days after my next PSA reading.  He said we would re-group at that point, and discuss options depending on the expected rise.  The only real surprise will be if my next PSA is <10 or >10.  He said sometimes you can go through a period of quick rises (as I have since my SRT failed) and then the rate will slow down, or if aggressive enough, it will keep on skyrocketing away  (which might be the case).  It's still his policy to not "treat a number" in this case.

This guy's level of care and compassion is above approach.  He said he would continue to call me by phone in between visits to check up on me, and says I can continue to e-mail him anytime, and he will answer.

We did discuss the fact that my GP is still pushing me for a colonosocpy  (which I have never had).  He sided immediately with my uro/surgeon, and said that with all the extensive damage done to me by the failed SRT, that the risk of doing severe damage to my rectal area was far greater at this time in the chance of the procedure finding any problems.  He said with the radiation damage, it would be so easy to puncture something, and with the damaged flesh from the radiation, it would be very difficult to do a surgical repair if something went wrong.  He said if I ever started to have any bleeding down there, or erratic and abnormal bowel movements (which I don't), the risk of the procedure might have to be re-examined.

His professional take on the great "PSA Screening Debate"?  He thinks its utter foolishness to change the standards for PSA testing, and that it would be taking a major step backward in preventing PC related deaths and Advanced PC cases.

David in SC

Posted 10/26/2011 8:53 PM (GMT 0)
David

If I was closer to you, I would go to your oncologist.

On your pain, as your Doc said - Yes take all the drugs he prescribes. If that is not enough - when he calls you (which is really amazing) let him know and perhaps something else can be arranged.

Got your next RV trip planned yet?

Bud
Posted 10/26/2011 10:21 PM (GMT 0)
Sounds like ya had a good visit and that ya got a doc how cares. NICE!
Posted 10/27/2011 12:15 AM (GMT 0)
David, It sure sounds that you have a doctor that really cares about his patient. I remember that you were contemplating filing a law suite against your radiologist, did you follow up on that?
Posted 10/27/2011 12:27 AM (GMT 0)
I know it may be had to at times but a recent study indicated one could boost their pain threshold through laughter. Any chance you have a good comedy vid resource close to home?
Posted 10/27/2011 12:28 AM (GMT 0)
Yeah Bud, I was fortunate to having gotten turned on to this doctor. He's very much in tuned to me and specific situation. He has a calm, quiet voice, never gets excited or edgy, and trust me, we don't always agree on all points, but he's willing to listen to my thoughts and feelings. I plan to stick with him long term, as someone of his caliber is hard to come by.

Hoping to make another RV outing in 2-4 weeks. My wife loses interest real fast in cold weather, lol.

daslink, he's a good one for sure

Ed, yes, litigation is still in process against my Radiation Oncologist and their Clinic. It's a slow path, but a steady path, I currently have a top notch legal team in place. They are not expecting my case to ever go to trial, which suits me. Unfortunately, they passed some tough tort laws concerning medical malpractice in this state a few years ago, which makes a case like this a little more difficult to settle fast. And of course, the tort laws were in favor of the medical providers, not the patients.
Posted 10/27/2011 1:27 AM (GMT 0)
David:

>>>>>>>>>>>>>>

The only real surprise will be if my next PSA is <10 or >10

>>>>>>>>>>>>>>>>>>

Do you mean <10?

I guarantee you it will be <10 OR >10.

Good luck with your next PSA.

Mine will be next week after some delays. I might have to move on to HT soon after that.

Mel

Posted 10/27/2011 1:51 AM (GMT 0)
the doctor mean it still might be below 10, being that it was at 5.8 in June. Or it could be way over 10 in December.

Are you sure you want to rush right into HT? That's a big step.
Posted 10/27/2011 2:16 AM (GMT 0)
We shall see what the PSA is. I do the test next week and then have a phone consultation with Dr. Scholz.

I've gotten expert opinions, as you know.

One says no rush; the other says I'll need to start HT should I get the expected PSA increase.

From my reading, if the PC has not spread to the bones, HT can offer me many years (a median of 10 years before I have to take the next step). But as you know, HT comes at a huge QOL price.

I'm leaning towards HT.

Mel

Posted 10/27/2011 3:59 AM (GMT 0)
Hey Purgatory:

Sounds like you have a true professional and caring physician.

In relation to your lawsuit you say that recent changes in SC tort law have been made in favor of the physician- what changes are you referring to? As far as I know, if you are significantly injured and can prove that the injury is a result of the negligence of the health care worker and not just a normal risk associated with the particular procedure involved, you have a legitimate claim in SC and any other state in the union.
Posted 10/27/2011 5:04 AM (GMT 0)
mjuke,

oh, my case is very legitimate, on at least 4 major standard of cares that were violated. that's not the problem, i was told, that if my expisode had occured in LA, for example, it would have been settled in 6 months. i have lots of patience, and don't have any plans to back off this lawsuit. i have been permamently disabled and disfigured for life, as the direct results of this malpractice.

time will tell.

david in sc
Posted 10/28/2011 12:47 AM (GMT 0)
David, glad you are being looked after by a caring group of Doc's, I am very happy for you, in regard to your pain, can't remember if I asked you before, have you had your lower back checked for disc trouble?. Also can understand your reluctance in regard to the colonoscopy, I had one after getting nagged by my GP, scarring was found in the area of the bowel that was adjacent to the radiated area, my bowel habits have never been the same.

As to your lawsuit, mine took 3 1/2 years, I needed lot's of patience but was ok in the end, good luck with the outcome.

Mal.
Posted 10/28/2011 1:25 AM (GMT 0)
Wow, David... it sounds like you've got a great doc there.

Good luck with your PSA numbers; maybe they'll level off as he suggests might happen. Good luck with the PET scan too.

I hope you take his advice regarding the pain meds. That kind of suffering is just unnecessary, and I hope you get yourself some relief.

Hang in there, kiddo. You're a tough old bird.

Jonathan
Posted 10/28/2011 2:01 AM (GMT 0)
thanks mal, my friend. i have officialy no known back trouble, other than this current collection of pain that started a year ago now, and is progressively getting worse. i feel most, if not all of the pain is still being generated deep inside my right hip, and it radiates down my right leg and mostly the left lower side of my back. as far as the colonoscopy, i will take the advice of my 2 best doctors and not take the chance at this point. the last thing i would need, is new and complicated problems to add to my mix. on the legal front, patience is the name of the game, and having the right legal team in place, one's that have a lot of passion for the case.

jonathan, my current oncologist is a great doctor. he's got the right mix of experience (mostly pc), probably about 45 tops in age, stays current on all things cancer and pain management, very tech savy, great people skills, and genuine care and concern, kind of hard to find that all in one person, so i feel fortunate. in our day and age, and with the help of the media, many legitimate people fighting chronic severe pain are stigmatized for being on narcotic pain drugs. so far, i haven't had any weird looks or rude comments from the drug stores where i fill my scripts. but i have heard some horror stories from others.

as far as any potential dependency or additction on the meds, the doctor said 2 things in regards. first, if you body is really in need of the meds, i.e. you have serious pain, then much less chance of dependency, and assuming you are only using as directed and not using them for any recreational use. second, he said in my situation, with a runaway cancer, and knowing that this pain is not ever going to go away or get better, worrying about possible addiction should be the least of my worries.

david
Posted 10/28/2011 2:44 AM (GMT 0)
David:

Actually, your symptoms are consistent with a bad disk/sciatica.

But I assume that would show up in an MRI (I assume an MRI of your back was one of the tests? If not, then it wouldn't hurt to ask).

Mel

Posted 10/28/2011 3:21 AM (GMT 0)
yes, had the mri in that area less than 2 month ago, nothing like that showed up, and the upper level ortho doc i was seeing was puzzled by not being able to find even a clue to the pain
Posted 10/28/2011 9:39 AM (GMT 0)
Sounds like your doctor is on the ball, and he sounds like a compassionate person. Wish you all the best with the advanced PET scan. I hope it finds something innocuous that is easily fixed so that you have no more pain.

Regards,
An
Posted 10/28/2011 3:08 PM (GMT 0)
that would be most lovely, An. Thanks. Enough is enough after 3 years of getting little if any breaks along the way. I can only help and wonder, what's next?
Posted 11/11/2011 1:18 AM (GMT 0)
David , I have just caught up with this post. It is tough to read your constant battle with the after effects of the salvage radiation. How well I remember you voicing your concerns going in, give the previous bad reaction to earlier cancer treatment via that method. I actually thought of your journey quite a bit during my own recent bout of illness. I distinctly thought of how could I put up with this if the pain was constant. i don't know if I could. You have my profound respect for your endurance and downright tenacity ------- would that I was made of the same stuff. I must say I really like the sound of your doc ------ worth his weight in gold.
Bill
Posted 11/11/2011 2:15 AM (GMT 0)
Thanks, Billy, my friend,

But I have followed your travels for 3 years, and you are a tough bird yourself. You recent medical adventure (and being alone at the time) made me cringe. When I had the attack of pancreatitis at the tender age of 28, I can still remember clearly the pain from 31 years ago. It was like someone had stuck me with a glowing hot serrated knife in my gut, and then kept twisting it around. My wife grabbed our 4 year old out of bed, and I was in the passenger seat trying to hold my 2 week old daughter, and she rushed to the nearest ER, perhaps 3 miles away. In the ER, they couldn't figure out what was wrong, so they couldn't give me anything for pain, and I was strapped to a gurney for my own safekeeping. Fortunately, they called an elderly doctor on call, who just have to specialize in panceatic disorders, and he left a dinner party, and rushed to the hospital and made the correct dx. Then, after perhaps 3 hours, they shot me up with morphine, and when I came to the next morning, was in the ICU of the hospital. It was a close call for a couple of days, my poor wife thought I was a goner. Spent 10 days in ICU, and then had a very damaged gall bladder removed via open surgery, the scar really looks like a shark bite.

Was glad that you were able to keep a cool head in your situation. I was most pleased that you were/are on the mend, hope the worse of that is behind you.

Some time back, you might remember a thread I started about "Lessons pain teach", or something like that. Severe and/or chronic pain can give you a different perspective about who you are, how tough you really are (or think you are), and a greater appreciation for those that suffer in pain. For most of us, pain comes in a quick flash for a few seconds, then subsides, like from a minor injury or hitting your thumb with a hammer. When you have to live with severe pain for hours, weeks, and months or more, you truly realize how fragile the human body can be, and how foolish it is to take good health for credit.

Glad you ok,

David
Posted 11/11/2011 2:17 AM (GMT 0)
P.S. The good doctor called me randomly just this afternoon, 2nd time since the visit you are reading about. To see how I was doing, and if I needed any adjustment in my pain meds. Regardless of what others may think of his treatment plan for me with my advancing cancer, I find him to be an exceptional and deeply caring doctor and human being.
Posted 11/11/2011 2:44 PM (GMT 0)

David:

From what I read, your oncologist is a gem. Isn't it a great feeling to have someone to place your trust.  Sounds like a keeper to me. If HT is a probable next step, you should be able to have the faith in your onc to advise you and carry you through this scary time. With that trust comes conviction and a positive outlook.  Keep fighting.

Jack

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