Re: University of Minnesota doctor

[Guest guest]

> My name is and I got lots of good help from you folks a

> year ago regarding my husband and his prostate cancer.    Now

> my dad has PCa and I'm looking for a good urologist, urologic

> oncologist or medical oncologist at the University of Minnesota

> (or anywhere else in the Twin Cities area).   Does anyone have

> any suggestions?

I don't know any of the doctors in the Minneapolis area but do

know that the National Cancer Institute gives both the University

of Minnesota and the Mayo Clinic its very highest ratings, see:

http://cancercenters.cancer.gov/cancer_centers/cancer-centers-list2.html#MN

You can find phone numbers there for the cancer centers at each

of the two institutions.

....

> The goal of treatment is quality rather than quantity of life.

> Given he's 91 years old, my parents don't want to take

> aggressive means to prolong his life.  On the other hand, it's

> important to make sure he doesn't suffer unnecessarily.

That seems very reasonable.  Overly aggressive measures can be

very damaging to quality of life and can also be harder on older

patients than younger ones.  So ideally, I should think that the

least aggressive treatment that still preserves life and avoids

pain would be a good one to pursue.

> 1.  If his pain is due to the Eligard with no casodex, are

> there things that could be done now to minimize damage besides

> starting casodex?    (This would warrant getting this checked

> into.   He's been seen by his PCP but not a specialist.)

>

> 2.  Are there problems  with giving older men (e.g. over 90)

> bone loss medications (e.g. boniva)?   I don't know why the

> doctor didn't prescribe something, given that one of the

> biggest dangers for older people is falling  and breaking

> bones, so I'm just guessing that maybe it was because of some

> bad side effects from these drugs.

>

> 3.  Are there any unique aspects of care for  older (over 85 or

> 90) men with prostate cancer that I should be aware of?

I don't know the answers to these questions but a good medical

oncologist should have an opinion.

> 4.   I hear that heart problems are a contraindication for

> Eligard.  My dad had a heart attack 20 years ago, has a

> pacemaker and has ventricular fibrillation.   The treating

> urologist said he's never seen any heart problems from Eligard

> with his patients.  Any thoughts on this?

This is an easy one.  In the first place, the urologist may not

even know that his patients are dying of heart attacks partly

caused by his treatment.  It sounds like he doesn't even inquire

about heart disease and, if a patient dies, he may not even hear

about it, or care - thinking that it had nothing to do with him.

Clearly, the doctor does not read current literature on prostate

cancer treatment.  The association between LHRH agonists like

Eligard and cardiovascular stress has been well known for some

time.

I think this is the wrong doctor to be treating your Dad.

> 5.  Could a testosterone flair from an LHRH agonist happen and

> cause damage to someone with no visible bone mets but with a

> large tumor (I guess you'd call it advanced, localized PCa)?

> (The doctor's nurses say it's impossible to have complications

> from a testosterone flair if the bone scan is negative for bone

> mets.)

>

> This is why I'm  looking for a different doctor:

> - no casodex before or even at the time of the Eligard injection

> - no bone loss medication

> -  Eligard given with known history of heart disease

> -  little concern for back pain post Eligard injection

I think you are exactly right in your thinking about the doctor.

I agree that you should find another doctor at U Minn, or Mayo.

I suggest that you call the cancer center and tell them you are

looking for an appointment with a good medical oncologist who

specializes in prostate cancer.  Someone on this list, or someone

you know in the Twin Cities area may have a recommendation, but I

expect that there are a number of good specialists at each of

those institutions.

One thing that I recommend is that you tell the doctor to forward

all of the test results, including the bone scan images, to the

clinic that you have chosen.

Some urologists may say yes to your request but not actually do

it, fearing that a real expert will see things in the test that

the urologist missed or ignored and the doctor will be

embarrassed or even sued.

I suggest that you tell the doctor's office that you are going to

the clinic with your Dad and you want to pick up the test results

in person at the doctor's office and carry them with you.  If it

were me, I'd be prepared to get nasty and make threats if they

refuse your request, perhaps mentioning lawyers, Medicare review

boards, etc. - though hopefully it won't come to that.

What the nurse told you about Casodex makes some sense, but maybe

not enough.  Since testosterone flair can stimulate the growth of

prostate cancer, why would it ever be desirable to allow that,

even if there were no obvious cancer in the bones?  Most doctors

routinely prescribe Casodex before LHRH agonists even for

patients with relatively low PSAs and no metastases.

Prescribing it more than a week or two after starting Eligard

would probably do little good.  The horse is out of the barn and

the testosterone flair should be over by then.

However, having said that, I don't know that one can definitely

conclude that Eligard was the cause of your Dad's pain.  It might

have been, and the close association in time is very suspicious,

but I should think that it's possible that there was another

cause.

In that connection, it seems surprising to me that a patient

would have a PSA of 500 or 300 and no bone metastases.  Sometimes

the metastases are diffuse, causing a weak overall glow in a bone

scan rather than bright spots.  If you get a copy of the bone

scan and have it read by a real expert at UMinn or Mayo, you may

learn more.

Finally, I'd like to say that your Dad is lucky that he has you

looking out for him.  You're doing all of the right things.  I

think there's a decent chance that he'll have a few more years in

him and never experience any cancer pain.

Best of luck.

    Alan

[Guest guest]

Make sure your father has an advance health care directive, also known as a living will. It is a set of written instructions that a person gives that specify what actions should be taken for their health if they are no longer able to make decisions due to illness or incapacity. I have one that directs my family to withhold food and water if I have end stage cancer, significant pain, and can no long eat or drink. The doctors will try to keep you alive even if there is no hope and their actions cause pain and suffering. You need this document. At some point in the future you will also need a "do not resuscitate" or "DNR", sometimes called a "No Code", is a legal order written either in the hospital or on

a legal form to respect the wishes of a patient to not undergo CPR or advanced cardiac life support (ACLS) if their heart were to stop or they were to stop breathing. Best wishes with your father. He will be in my prayers. Charlie D. To: ProstateCancerSupport Sent: Friday, August 17, 2012 4:37 PM Subject: University of Minnesota doctor

Hi, My name is and I got lots of good help from you folks a year ago regarding my husband and his prostate cancer. Now my dad has PCa and I'm looking for a good urologist, urologic oncologist or medical oncologist at the University of Minnesota (or anywhere else in the Twin Cities area). Does anyone have any suggestions? Also, I have some other questions regarding treatment below.

Here's his data: He's 91, has had elevated PSAs (a year ago it was 38) for a number of years but negative biopsies. I don't have any more information than that for his more distant past. He had a PSA of 500 in June and 300 in July, bone scan negative for bone metastases, abdomen and lymph CT scan negative for lymp metastases. He had a biopsy a couple weeks ago and his GS now is 5/4. There was a large mass that could be seen by the biopsy ultrasound (at the base or top of the biopsy near the bladder). The doctor took 5 samples from this mass (only these five- no others) and all were 90-100% positive. That's all the data I have. He was given a 3 month Eligard injection one week ago with no casodex and nothing for bone loss. He developed severe knee pain (or mild pre-existing pain suddenly got worse) the following day

along with low back pain and was finally given Casodex 2 days ago.

The goal of treatment is quality rather than quantity of life. Given he's 91 years old, my parents don't want to take aggressive means to prolong his life. On the other hand, it's important to make sure he doesn't suffer unnecessarily.

Here are some questions regarding treatment: 1. If his pain is due to the Eligard with no casodex, are there things that could be done now to minimize damage besides starting casodex? (This would warrant getting this checked into. He's been seen by his PCP but not a specialist.)

2. Are there problems with giving older men (e.g. over 90) bone loss medications (e.g. boniva)? I don't know why the doctor didn't prescribe something, given that one of the biggest dangers for older people is falling and breaking bones, so I'm just guessing that maybe it was because of some bad side effects from these drugs.

3. Are there any unique aspects of care for older (over 85 or 90) men with prostate cancer that I should be aware of?4. I hear that heart problems are a contraindication for Eligard. My dad had a heart attack 20 years ago, has a pacemaker and has ventricular fibrillation. The treating urologist said he's never seen any heart problems from Eligard with his patients. Any thoughts on this?

5. Could a testosterone flair from an LHRH agonist happen and cause damage to someone with no visible bone mets but with a large tumor (I guess you'd call it advanced, localized PCa)? (The doctor's nurses say it's impossible to have complications from a testosterone flair if the bone scan is negative for bone mets.)

This is why I'm looking for a different doctor:- no casodex before or even at the time of the Eligard injection- no bone loss medication- Eligard given with known history of heart disease

- little concern for back pain post Eligard injectionThank you in advance for any suggestions or thoughts.