Today's visit with my Oncologist

Met again with my Oncologist today.  Spent a full 50 minutes face-to-face without any interuptions.  Gave me plenty of time to ask all my questions and theories, and gave the doctor plenty of time to give me his advice, of course.

For starters, at his request, going back to 3 month PSA testing, starting again in April.  Not surprised after my last leap to 14.x in December.  Also, going to be using his lab from now on.  I have been using the same lab (with one minor exception) since 2002.  With him doing it, will get instant results, instead of having to wait 2-3 days.

As I expected, he has doubled my Fentanyl patch (synthetic morphine) from 25 micro grams to 50 starting immediately. If the fentanyl is strong enough, it will allow me to decrease the use of so much Loratabs as a breakthrough drug, which would be a good thing.  On a bad day, I am up to 8 pills per day, the max. allowed.

On an interesting note, he is willing to document the cause of the chronic pain in writing, for legal uses.  He feels that strongly about it.  That the salvage radiation being administered wrong, is the direct cause of all the perm. nerve damage.  He said there is not a doubt in his mind about that.

We have put the PET Scan on the back burner right now, may still do it later this year.  Right now, he decided that even as sensitive as it would be, compared to a MRI, it still is unlikely to give him any more to work with as far as my cancer goes.

I am going to start a seperate thread, about his specific views about being in the "delay" school of thinking involving the use of HT and/or chemo.  I pushed for details, and I got them.

As far as my PC goes, with no evidence of mets at this time, he still feels safe in waiting a while longer.  My next PSA with him is slated for April  He said depending on what it shows, and possible after another one in July, may be time to move forward with some type of treatment.  He is still leaning toward bypassing HT altogether, and may have me undergo chemo in the form of Taxotere.  Not fully decided at this time.  He said that with a strong enough jolt of chemo, its possible to knock even this aggresive cancer into some reasonable length of remission, but ultiimately it will return once it can re-group.

In a case like mine, he emphathised again, that there is no specific number he is waiting for, that everything depends on how well I am actually doing at the time. Timing is everything, he said, with any future treatment steps.

He still strongly feels that for men that have recurrance after primary and secondary treatment failures, that it can be very difficult to stop or control the agressiveness and progression of the cancer, as it already indicated a very agressive variant.

He did say that going on Taxotere would have its own set of risks and side effects.  He still all about maintaining my current diminished quality of life at least where it is right now, before doing anything that would further reduce it.

It was a good visit in my opinion, and I still feel like I am safe hands, with someone that is looking out for my best interest, and is really in tune with contolling the level of pain and faitgue that I fight every day.

Next visit in mid-April, but he said he will be in constant contact by phone with me, to make sure that all my meds are working as hoped, and to be on stand-by to make any adjustments if needed.

David in SC

 

Purg,

I'm glad you have someone you trust and is understanding of your needs and what you are going through. I wish the best for you.

Thanks for posting the details; I ponder the what-ifs myself and all views will help me if my circumstances change. Speaking only for myself, I've become comfortable that I did the "required" treatments (surgery and salvage radiation) for my family and my own peace of mind. Therefore any further treatments will lean more on how I view my quality of life.... of course I reserve the right to contradict myself at the drop of a hat.

Our best for you and the rest of the gang,
Jake

I like your doctor. Looks like he does not use the standard "cookbook" approach, very thoughtful (QOL is important to him), insightful and logical in my opinion.

From what I read, chemo works best if the cancer is of the rapidly growing type and not very well for slow growing cells. I think his thinking is you have a fairly rapidly growing cancer, so try chemo at this early stage might give you an advantage when there are not that much cancer to deal with and the dosage could be adjusted lower to reduce side effects and toxicity.

He probably knows you can always do HT at a later time if you so choose and believes the result will be the same.

Of course the above are just my speculations and I have no data to support what I said.

Good luck.

David -- i think your doctor must know how you feel about HT.  i feel the monitoring of your PSA is cavalier.  i'm not so sure that this approach is based on QOL as is being parroted on this thread.  afterall you are on a ton of narcotics already -- and they just doubled your patches.  just my take buddy. 

ed

Ed, look at what you just wrote:

David -- i think your doctor must know how you feel about HT. i feel the monitoring of your PSA is cavalier. i'm not so sure that this approach is based on QOL as is being parroted on this thread. afterall you are on a ton of narcotics already -- and they just doubled your patches. just my take buddy.
ed
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Do you think you could have been any more rude or judgmental? Where do you get off saying those kinds of things. Get it through your head, of course my doctor knows after several visits that I do not favor HT or Chemo, but he made his own opinions of my situation without any bias from me, that was the whole point of seeing a specialist. What is it that you are not getting here, other than your accusations?

What do you mean about the QOL part? Do you not believe it? Do you have problems with it? Be a little more specific, and a whole lot less accusing in your tone.

Do you have full knowledge of the total damage that was done to me over the past 3 years in the name of PC treatments? Have you seen my test results, or talked to my doctors? You have some special gift or inside knowledge? I think not.

Like others here, I give detail reports of how I feel and how I respond, and share whatever ever my doctors give me for advice?

I don't like your "drug" remarks or what they infer. What are you gettting at? Do you have a personal abusive drug problem past or present that makes you speak this way? All my meds are carefully monitored by a good doctor. If you were dealing with 24/7 pain for as long as I have, you wouldn't even question it. There's no abuse here. I am very careful, and so is my doctor. I get no pleasurable feelings from any of these meds, period. I don't even get the benefit of sedation from them, wish I did sometimes. I only take what I need, when needed, and if they weren't needed, wouldn't be on any of them.

If this post of yours is what you call "support', please keep your thoughts to yourself. I don't need your kind of judgemental help, that isn't even based on the facts of the case.

David in SC

David -- i am a recovering addict.  i know about opiates. if i were on the same amount as you i would not be in my right mind.  in fact, i would be out of my mind.

my body doesn't know (or care) if the doctor prescribed the drugs or if i scored them on the street corner.  i'm not saying you aren't in pain either because i believe you really are.  good luck to you.  i won't have anything else to say on the matter.  probably should have just kept my mouth in the first place

ed

Some people may not be aware that the use of opiates for the management of cancer-related pain differs in important ways from the recreational use (abuse) of these drugs.  Anyone who is confused about this signficant difference might want to read the following paragraph from the American Hospice Foundation's webpage:

"People who are prescribed opiates for the management of pain in accordance with generally accepted guidelines do NOT become addicted. Addiction is a psychological disorder marked by craving for a substance (alcohol, drugs) in order to experience a “high” (state of euphoria), lack of control over the use of the substance, and continued use of the substance in spite of harm to the person. It can be accompanied by behaviors that are harmful to the individual or to society (e.g., stealing to get money for the drugs). In a study of over 11,000 patients who received opiates for pain following surgery, only 3 or 4 patients developed subsequent problems with substance abuse. This is much lower than the actual rate of substance abuse in the general population (about 8%)."

Those of us who are dealing with cancer, either in our own lives or in the lives of our loved ones, should never forget this.  Pain MUST be relieved for a variety of physical and psychological reasons.  Using opiate drugs to relieve severe pain has nothing at all to do with "gettiing high" or becoming addicted.  If you or your loved ones are in constant pain, the worst thing you can do is to undertreat the pain. 

In my part-time job at a funeral home, I talk frequently with hospice care workers.  Unanimously, they point out the importance of managing pain, and to a man (and woman) they emphasize that when used in this way, the drugs are not addictive and do not produce a "high." 

So, I say, David, do whatever your pain management docs tell you.  They have your best interest at heart.

Clocknut,

What a well said and wonderful answer you just gave, and you are on spot 100% correct. You said what needed to be said. My oncologist, aside from specializing in breast and prostate cancer, is a certified Pain Management specialist. On my very first visit with him, he knew right away, that I was in a situation where my pain was not even remotely under control. Cancer pain is a serious thing. He said (and 2 other doctor have told me the same thing), that if the body is battling severe chronic pain, that there is little chance of become addicted in the normal sense to the pain drugs, whether they be opiads or not. And secondly, he said from the start, that with the cancer situation I am in, proper pain control is far more important, than some false worry about possible addiciton.

He started me off on small dose, especially the fentanyl patches, why? Because he said he knew that I was a very cautious patient, and if the dose was too high, I would be inclined not to use it as prescribed, i.e. use it less than what was needed. He has increased things based on his take of my situation at each of our meetings. Why he can't do much to stop or slow down the cancer at this point, he said there is no reason for me to suffer in pain, that can be controlled.

As far as fentanyl patches go ( and they are very dangerous if abused), a patient has to be certifiably opiate tolerant for at least a year. If the patient isn't, then the patches aren't safe to use. He knows what he is talking about.

My suspicions were correct about Ed above, in his negative tone about my use of pain meds. Sorry Ed, that you had battled drug probelms in the past, sincerely. That has never been an issue in my entire life. I haven't, don't, and won't use any druges for recreational purposes. You are talking to a guy that hasnt even had a sip of beer in nearly 40 years. I don't even take an aspirin or advil unless its really needed.

There are several other men here that are battling chronic pain, some not related to PC or cancer, so they would know more what I am dealing with. With this type of nerve damage I have incurred as the result of the faulty SRT, the doctor said, it is never, ever going to heal or get better.

What is intersting, is that so far, I have no "brain fog" from the pain meds, they don't even sedate me, and even the doctor is amazed that I have never had any constipation problems, considering that I have been on Loratabs for 2 1/2 years now. I honestly don't.

Proper pain management is essential for any reasonable quality of life for a person, that is a fact. Toughing it out, ignoring the pain, does nothing but makes the problem worse. I am fighting for my life here, and I want to be able to maintain as good a life as I can in the meantime.

I make no apologies to anyone that questions this pain management program, I say, talk to my doctor, I will sign a release and let you get a good education from the person that knows what they are talking about. I have hurt so bad, for so long, that I no longer have a memory of a naturally pain free day. Can't even imagine what that would feel like.

Thank goodness we live in a modern age, where pain can be controlled.

Great post, though Clock, you said that better than I could have said.

David in SC

michael - thank you!

Ed - you seem to read what you want to hear, instead of the facts. My oncologist does not want me to be on HT at this time, and perhaps never. He is of the school of not using HT or Chemo for early intervention. I will be making a seperate post about that. I have mentioned this fact of his approach numerous times, but you don't seem to get it. No, I didn't and still don't want to go on HT of my own choice, but my doctor doesnt want me to either, so what's the problem? If my own doctor was pushing it, I would have to sit back and re-evaluate my situation. But he doesn't, so I don't need to at this time.

David,

Thanks for the comprehensive update. I'm so glad you have found a doc who can treat your pain as well as the cancer. it sounds like his approach is a good fit for you, and he is creative in customizing the treatment to fit your needs and preferences. Good luck with it; hopefully he will be able to knock it down at least for awhile.

best,
David

Ed, the more you keep responding, the more offensive you are becoming. Do me a favor, take the moderator's advice, before this turns into an ugly event.

Now, you act like you know more than my doctor? That's pretty brash of you. You even know what variant I have? What amazing abilities, you have missed your calling in life.

The six month original wait on the PSA was the doctor's suggestion at the time, not mine. Can't speak for you, but I am a compliant patient, I listen to my doctor, I don't tell my doctor what I will or won't do. It works better that way. I have no medical abilities or qualifications, but let me give you a hint, you don't either. Remember, HW is a patient-to-patient support site, not a doctor substitution site.

david

David,
2 points. I have frequently read that doctors often under-prescribe narcotic analgesics for fear of causing addiction. That does nothing for the patient, and relief of pain is every bit as important as increasing longevity. It seems you have found a doctor that understands this.
Also, as you said, you have to have trust in your doctor. None can say that their treatment will guarantee a cure or any amount of increased lifespan. I left my first urologist because of that kind of attitude. We may travel similar roads with PCa, but each of us needs to do what we feel is best, and having a compassionate doctor that listens to us makes the journey a lot easier.
Best of luck,
Bill